Have you noticed a lot more characters with autism appearing in television programmes lately?
The most recent was on Casualty ( a BBC1 UK drama series running for over 20 years set in the ED of a hospital).
The basis of the plot was that a mother of an autistic son was dosing him with un-prescribed medicines in a bid to help him get better. The medicines were poisioning him and so he ended up being admitted as an emergency patient. The usual scenario occured, written by someone I am sure has not got a child with autism, where the staff condemned the mother, called social services, she had her little speech about why she felt the need to try to cure him, and then it all worked out nice and rosy (oh apart from the fact he was not going to be cured by the medicines she had given him).
In another medical drama series, again long running, but this time set in a doctors surgery, and ironically called 'Doctors', (also on BBC1) a pre-pubescent girl was taken by her mother to seek out surgery to give the girl a hysterectomy so that she would not have to go through the trauma of menstruation and possible unwanted pregnancy from abusive male caregivers.
The doctor she saw was very un-helpful and very matter of fact that the mother had no right to take her daughters reproductive organs away.
The whole episode was written with tangible hatred towards parents of autistic children, with the obvious highlight being towards females with the disability. The dialogue was stunted and stumbled along with almost a scant knowledge of what autism is actually about. The actress playing the part of the doctor played her role with vitriol, a lemon sucking sour mouth, and had no warmth or compassion ( the directors fault).
There were no facts, no information for the viewer unfamiliar with autism and it only sought to dramatise a now popluar disability, but failed to seek out any real humanity behind the story.
The upshot of the mother being turned down, with much patronising, was that she left for America where the operation would be performed at a high monetary cost. I would point out that the topic of birth control injections to halt periods, and drugs to stop puberty were also mooted by the mother and given the same snide reception from the writer.
Another BBC1 drama ( a theme here surely!) called 'Missing' where another non-verbal ( well echolalic) young adult man was found wandering alone. At the time the police officer did'nt know he had autism, but then after he was being interviewed in a room, one of the other police characters recognised the disability from his list of traits. So we saw the drama unfold that it was actually his mother who was missing as he was with her and she had gone. Fast forward through some well meaning but cliched nonsense and on to the mother being found, with paracetamol on a beach, wanting to kill herself as she could'nt cope anymore.
Pretty negative writing going on. Uniformed, cliched, almost contemptuous (towards parents) scripts, and all seemingly because more documentaries are abounding on to our screens and autism is the latest hot topic. Rather a shame that the writers are information poor and so doom laden with hostility.
There have been other portrayals in dramas, but nothing that has really dealt well.
Grange Hill (hey BBC1 again) featured a boy with Aspergers back in the early 90's I remember but it was very basic and not really meant to 'deal' with the issue apart from a few scenes were he would get angry, a staff member would intervene, blame the Aspergers, everyone would go "oh" and then the next teenage drama was being played out.
If any editor out there would like a real insight into living with autism give me a nudge. It is not all anger, angst, and animosity, it is inspirational, eye opening and sometimes very humuorous.
And I say this from being a parent with an autistic child, not someone who has read a small paragraph in the dictionary.
Monday, 29 November 2010
Saturday, 27 November 2010
Squeeze,Stir and Mix.
I should buy shares in Pantene, Radox, Carex and all other cleaning manufacturers as my J has a facination with mixing any liquid he can get his hands on.
I buy a new bottle of X and before I have time to hide it J has spied it, grabbed it, and makes off to the bathroom to squeeze it out into any receptical he can find.
I have hiding places for most of my products, but he has a daily rummage through all drawers, lifting up items (as he has learnt that I hide things under other things) and I do have a lock on my bathroom, but he goes beserk if it is locked and yells "wee wee, toilet, poo poo" over and over and over again.
So, I have no nice products anymore as he once used my Dior Capture magic cream which was given to me at a cost of £110 (!) and he used the whole lot and mixed it with toothpaste and Sudocream.He enjoyed this concoction, but I did'nt.
I wear hardly any make-up and what I do own, foundation, is again pumped out of the bottle so as to give his mixtures a lovely tint.
A nail varnish pot I had once, was thrown and smashed against the t.v and still to this day there is a ruby red smear running down it!
He found a blue nail varnish pot a few weeks ago (I have no idea where as I do not wear varnish) and painted his toe nails. He made a good job of it too. Perhaps his vocation lies in being a nail artist.
Handwashes left by basins are poured straight out and the bottle re-filled with water and left in its original place.
Cans of spray are another favourite and will be sprayed copiously and continously over mirrors, fogging them up, enabling him to create finger drawings in the mess they leave on the surface.
In the summer, when the garden door is left open more often, he gets milk and throws it over the patio and then steps into it and creates milky footprints all around.
When we had a sand pit (note the word 'when') he would scoop up handfuls of it, mix it in cups and spread it around the bath. Sand is a sensory favourite of his quite a lot. He has been known to sit in a sand pit and pour it over his head. Once, on a day trip to the New Forest we stumbled upon a man made sand pit and he sat down to play. Turning my face away to concentrate on feeding the baby he took the opportunity to fill his ears up with sand.
The sand was so impacted there was only the outer rim of his his visible. I had to tip his head to each side, rake my finger inside, and try to remove as much as I could.
There is a great mixture that is used a lot for sensory and tactile purposes and it is a corn flour kind of gloop. It is almost liquid when mixing with a spoon but is stiffer and chalk like when touched with hands. Such a simple idea which is pleasurable for J and many others like him.
Unfortunately it does not deter him in his quest to pour, squeeze and mix every liquid he can obtain.
I should point out that all harmful liquids (and I mean such items as bleach, cleaners etc) are kept in the kitchen which is locked almost all of the time, and even when he is in there (with an adult) he is not showing any interest in opening the cupboard to them.
I have resigned myself to having very few bottles of products and every visitor who stays overnight also learns the lesson of keeping everything hidden and away from his little creative hands!
I buy a new bottle of X and before I have time to hide it J has spied it, grabbed it, and makes off to the bathroom to squeeze it out into any receptical he can find.
I have hiding places for most of my products, but he has a daily rummage through all drawers, lifting up items (as he has learnt that I hide things under other things) and I do have a lock on my bathroom, but he goes beserk if it is locked and yells "wee wee, toilet, poo poo" over and over and over again.
So, I have no nice products anymore as he once used my Dior Capture magic cream which was given to me at a cost of £110 (!) and he used the whole lot and mixed it with toothpaste and Sudocream.He enjoyed this concoction, but I did'nt.
I wear hardly any make-up and what I do own, foundation, is again pumped out of the bottle so as to give his mixtures a lovely tint.
A nail varnish pot I had once, was thrown and smashed against the t.v and still to this day there is a ruby red smear running down it!
He found a blue nail varnish pot a few weeks ago (I have no idea where as I do not wear varnish) and painted his toe nails. He made a good job of it too. Perhaps his vocation lies in being a nail artist.
Handwashes left by basins are poured straight out and the bottle re-filled with water and left in its original place.
Cans of spray are another favourite and will be sprayed copiously and continously over mirrors, fogging them up, enabling him to create finger drawings in the mess they leave on the surface.
In the summer, when the garden door is left open more often, he gets milk and throws it over the patio and then steps into it and creates milky footprints all around.
When we had a sand pit (note the word 'when') he would scoop up handfuls of it, mix it in cups and spread it around the bath. Sand is a sensory favourite of his quite a lot. He has been known to sit in a sand pit and pour it over his head. Once, on a day trip to the New Forest we stumbled upon a man made sand pit and he sat down to play. Turning my face away to concentrate on feeding the baby he took the opportunity to fill his ears up with sand.
The sand was so impacted there was only the outer rim of his his visible. I had to tip his head to each side, rake my finger inside, and try to remove as much as I could.
There is a great mixture that is used a lot for sensory and tactile purposes and it is a corn flour kind of gloop. It is almost liquid when mixing with a spoon but is stiffer and chalk like when touched with hands. Such a simple idea which is pleasurable for J and many others like him.
Unfortunately it does not deter him in his quest to pour, squeeze and mix every liquid he can obtain.
I should point out that all harmful liquids (and I mean such items as bleach, cleaners etc) are kept in the kitchen which is locked almost all of the time, and even when he is in there (with an adult) he is not showing any interest in opening the cupboard to them.
I have resigned myself to having very few bottles of products and every visitor who stays overnight also learns the lesson of keeping everything hidden and away from his little creative hands!
Thursday, 25 November 2010
Library On Autism
Going back to the very start of my introduction to autism, when I was handed the leaflet from the very first paediatrician we saw, it all seemed unreal and didn't make any sense.
My child, my first born, this little boy with his blonde hair and blue eyes, who never tried to speak, who everyone had said was just a bit behind, suddenly had this disability which was hard to comprehend, and made me feel lost in a country where I didn't speak the language or understand the customs.
The leaflet was scant with information and it never really dawned on me the actual reality of autism. As mentioned before I got out my trusty medical journal to find more information, but that too was a paragraph of daunting words that gave me a hard hitting smack in the face that this was not going to get better with a little speech therapy.
Over the years, but more so at the start, I bought books on the subject. These books came with glowing recommendations on the jacket sleeve but to be honest, they were way too information packed with no personalisation, real stories, and a very bleak outlook.
One book I did buy was called George and Sam and became my best friend.
This book was written by a mother with three sons, and two of them had autism, with differing levels of autism each,
This book was interesting, made me smile, and allowed me to see I was not the only one going through the shock of the diagnosis, the sharp learning curve of the behaviour issues and the hard truth that there is no cure, miracle or otherwise.
I find that with the 'education' books they focus on the more negative side and not the fun side, the loving side and the way that autism is not an end to everything, rather a beginning of a new life and way of thinking.
And of course, as all mums with children/adults with autism will tell you, every child with autism is unique. Autism is as the terminology states, an 'umbrella' and a 'spectrum' and therefore is different in each child. There are familiar traits and tell tale signs, but what one child may struggle with, another sails through.
I hope that through this blog, mums out there who are perhaps at the start of the journey (and really this is a proper journey and not the ones that contestants on X Factor bleat on about), or maybe having a bit of a down day, can have a laugh at the antics of my J, the way I deal with issues that arise and see that even though autism can be very solitary, there are tens of thousands of us out there on the same solitary path but all inter-connected together.
Something a book written by a doctor/paediatrician/specialist will never truly understand, unless they too are on the personal path of this disability.
My child, my first born, this little boy with his blonde hair and blue eyes, who never tried to speak, who everyone had said was just a bit behind, suddenly had this disability which was hard to comprehend, and made me feel lost in a country where I didn't speak the language or understand the customs.
The leaflet was scant with information and it never really dawned on me the actual reality of autism. As mentioned before I got out my trusty medical journal to find more information, but that too was a paragraph of daunting words that gave me a hard hitting smack in the face that this was not going to get better with a little speech therapy.
Over the years, but more so at the start, I bought books on the subject. These books came with glowing recommendations on the jacket sleeve but to be honest, they were way too information packed with no personalisation, real stories, and a very bleak outlook.
One book I did buy was called George and Sam and became my best friend.
 |
| George and Sam |
This book was interesting, made me smile, and allowed me to see I was not the only one going through the shock of the diagnosis, the sharp learning curve of the behaviour issues and the hard truth that there is no cure, miracle or otherwise.
I find that with the 'education' books they focus on the more negative side and not the fun side, the loving side and the way that autism is not an end to everything, rather a beginning of a new life and way of thinking.
And of course, as all mums with children/adults with autism will tell you, every child with autism is unique. Autism is as the terminology states, an 'umbrella' and a 'spectrum' and therefore is different in each child. There are familiar traits and tell tale signs, but what one child may struggle with, another sails through.
I hope that through this blog, mums out there who are perhaps at the start of the journey (and really this is a proper journey and not the ones that contestants on X Factor bleat on about), or maybe having a bit of a down day, can have a laugh at the antics of my J, the way I deal with issues that arise and see that even though autism can be very solitary, there are tens of thousands of us out there on the same solitary path but all inter-connected together.
Something a book written by a doctor/paediatrician/specialist will never truly understand, unless they too are on the personal path of this disability.
Monday, 22 November 2010
Freezer boy
You will remember I have talked about J and his unusual sleeping habits.
They have been going on for over a year now and as this has been so long we are all just used to it and don't bat an eyelid.
I thought it could'nt get anymore unusual than sleeping on a hard floor on the top of the stairs, but he has excelled himself now.
To set the scene -
J broke our old freezer. We have a separate utility room which houses storage cupboards, a washing machine, tumble dryer and (until recently) an upright freezer.
J became obsessed with opening the freezer door and leaving it open. Over the last few months I have had to throw away the whole stock of goods as they had defrosted to mush several times.
I would check the door was closed, but somehow he would sneak down at night, open it, go back to the floor and sleep.
Now I had been nagging for months to have a lock placed on the main door to the utility room, as we have a 'star' key lock for the kitchen doors, and so a 'star' key lock for here would be suitable and easy as the 'star' keys are all the same. My nagging fell on deaf ears, and so I wasted money on re-stocking the freezer, only for J to spoil the goods all over again.
Well, one day my freezer went on strike. It was very old I will give that, so it was not unexpected.
I decided a chest freezer would be more apt as the lid is sprung mounted and so should come back down and so J would not gain the same fun element he was getting from the old upright one.
After it was delivered they told me not to plug it in for a few hours.
Well the next day I still hadn't plugged it in as I was hesitant about not having a lock on the main door and also I didn't have time to go shopping to do a re-stock.
On day four, in the morning, I woke and discovered J not in his usual spot on the landing floor. His cover was not in his room and I presumed he was on the sofa.
Downstairs I could not find him on either of the sofas in the downstairs rooms and was then thinking he was in the downstairs bathroom (I had checked the upstairs bathroom too). On my way to check in the downstairs bathroom (which is accessed through the utility room) I noticed a triangle of his cover hanging out of the new freezer.
I lifted the lid and there he was asleep, curled up in the fetal position, with his cover around him.
I immediately thanked God I hadn't switched it on as he may have climbed in despite the cold and goodness knows what may have happened.
So, thanks to this episode a lock is now going to be fitted, and quick. I still have not turned the new freezer on and will not do so until I feel sure it is completely safe to do so.
I think in a post near the beginning of this blog I mentioned a lady called Temple Grandin. It was back in the early days of our journey into autism that I came across a piece she wrote, which states her preference to sleeping in a cow press as she enjoys the sensation of feeling compressed when sleeping. Ms Grandin is a high functioning autist and writes eloquent and succinct pieces surrounding her life and her autism.
I liken J and the chest freezer incident to Ms Grandin and the cow press.
If J is needing this stimuli then we need to find something more suitable than a freezer, less expensive and space consuming than a cow press, and more in keeping with safety and ethics in the house. Any ideas more than welcome!
They have been going on for over a year now and as this has been so long we are all just used to it and don't bat an eyelid.
I thought it could'nt get anymore unusual than sleeping on a hard floor on the top of the stairs, but he has excelled himself now.
To set the scene -
J broke our old freezer. We have a separate utility room which houses storage cupboards, a washing machine, tumble dryer and (until recently) an upright freezer.
J became obsessed with opening the freezer door and leaving it open. Over the last few months I have had to throw away the whole stock of goods as they had defrosted to mush several times.
I would check the door was closed, but somehow he would sneak down at night, open it, go back to the floor and sleep.
Now I had been nagging for months to have a lock placed on the main door to the utility room, as we have a 'star' key lock for the kitchen doors, and so a 'star' key lock for here would be suitable and easy as the 'star' keys are all the same. My nagging fell on deaf ears, and so I wasted money on re-stocking the freezer, only for J to spoil the goods all over again.
Well, one day my freezer went on strike. It was very old I will give that, so it was not unexpected.
I decided a chest freezer would be more apt as the lid is sprung mounted and so should come back down and so J would not gain the same fun element he was getting from the old upright one.
After it was delivered they told me not to plug it in for a few hours.
Well the next day I still hadn't plugged it in as I was hesitant about not having a lock on the main door and also I didn't have time to go shopping to do a re-stock.
On day four, in the morning, I woke and discovered J not in his usual spot on the landing floor. His cover was not in his room and I presumed he was on the sofa.
Downstairs I could not find him on either of the sofas in the downstairs rooms and was then thinking he was in the downstairs bathroom (I had checked the upstairs bathroom too). On my way to check in the downstairs bathroom (which is accessed through the utility room) I noticed a triangle of his cover hanging out of the new freezer.
I lifted the lid and there he was asleep, curled up in the fetal position, with his cover around him.
I immediately thanked God I hadn't switched it on as he may have climbed in despite the cold and goodness knows what may have happened.
So, thanks to this episode a lock is now going to be fitted, and quick. I still have not turned the new freezer on and will not do so until I feel sure it is completely safe to do so.
I think in a post near the beginning of this blog I mentioned a lady called Temple Grandin. It was back in the early days of our journey into autism that I came across a piece she wrote, which states her preference to sleeping in a cow press as she enjoys the sensation of feeling compressed when sleeping. Ms Grandin is a high functioning autist and writes eloquent and succinct pieces surrounding her life and her autism.
I liken J and the chest freezer incident to Ms Grandin and the cow press.
If J is needing this stimuli then we need to find something more suitable than a freezer, less expensive and space consuming than a cow press, and more in keeping with safety and ethics in the house. Any ideas more than welcome!
Friday, 19 November 2010
GP Surgeries
I decided that after our last visit to the GP to discuss J's sleep, or lack of it rather, that I could no longer expect him to be compliant in the surgery waiting room.
The last visit was stressful, sweaty, and upsetting, and that was just me. J was kicking the wall, jumping up and down yelling out phrases such as "brush your teeth", "shut up" and "poo poo".
Everyone in the waiting room ignored him and didn't look or make out they were annoyed which helped me, but I still continued to try to stop and minimise his behaviour.
As is the norm for GP surgeries the appointment time is not the time you will be seen. It is more the time you sit and start clock watching, eyeing up other people, trying to guess who is before you and shifting about getting a numb bum.
After thirty minutes past out allotted time, J was manic and upset a gorgeous little baby girl who was cooing away. He screamed and made her cry. But again the mum didn't look or tut, thankfully.
I went out to the part time doctors/mini Mussolinis at the reception desk and asked what could be done to help us. One of them led us up to a chair outside the GP's room. J found a great large radiator to kick, which reverberated around the corridor.
Finally we got in to see the GP.
What a waste of time though as he told me he could not help with any sleep issues and said the paediatrician at his school was the place to go. Funnily enough the paediatrician told me J didn't have a sleep problem (in her opinion ) and that she couldn't prescribe him anything anyway. Way to pass the buck you 'professionals'!
I knew we couldn't endure another episode like that. But it wasn't until I was having a blood test done that I was alerted to the nurse taking in a young patient, before me, but with an appointment after me (I heard the booking in details). When I asked the nurse she explained the child had special needs and could not wait in the waiting room, so was always put first.
Bells rang in my head and a cheer went up! I could do something about it for J and thanks to seeing this child I knew they would offer it to me if I asked.
After speaking to the Practice Manager a 'flag' has been placed on his name, so when I call and make a booking for him, they can see the request, and make a booking appropriately or make a note so that if he is an emergency patient he will either get a side room to sit in with me, away from others, or we will be the next in.
As I haven't tested this out yet I cannot give an appraisal of it, but my fingers are crossed in hope!
The last visit was stressful, sweaty, and upsetting, and that was just me. J was kicking the wall, jumping up and down yelling out phrases such as "brush your teeth", "shut up" and "poo poo".
Everyone in the waiting room ignored him and didn't look or make out they were annoyed which helped me, but I still continued to try to stop and minimise his behaviour.
As is the norm for GP surgeries the appointment time is not the time you will be seen. It is more the time you sit and start clock watching, eyeing up other people, trying to guess who is before you and shifting about getting a numb bum.
After thirty minutes past out allotted time, J was manic and upset a gorgeous little baby girl who was cooing away. He screamed and made her cry. But again the mum didn't look or tut, thankfully.
I went out to the part time doctors/mini Mussolinis at the reception desk and asked what could be done to help us. One of them led us up to a chair outside the GP's room. J found a great large radiator to kick, which reverberated around the corridor.
Finally we got in to see the GP.
What a waste of time though as he told me he could not help with any sleep issues and said the paediatrician at his school was the place to go. Funnily enough the paediatrician told me J didn't have a sleep problem (in her opinion ) and that she couldn't prescribe him anything anyway. Way to pass the buck you 'professionals'!
I knew we couldn't endure another episode like that. But it wasn't until I was having a blood test done that I was alerted to the nurse taking in a young patient, before me, but with an appointment after me (I heard the booking in details). When I asked the nurse she explained the child had special needs and could not wait in the waiting room, so was always put first.
Bells rang in my head and a cheer went up! I could do something about it for J and thanks to seeing this child I knew they would offer it to me if I asked.
After speaking to the Practice Manager a 'flag' has been placed on his name, so when I call and make a booking for him, they can see the request, and make a booking appropriately or make a note so that if he is an emergency patient he will either get a side room to sit in with me, away from others, or we will be the next in.
As I haven't tested this out yet I cannot give an appraisal of it, but my fingers are crossed in hope!
Tuesday, 16 November 2010
Smile, Smile, Smile
"You're so happy all the time", " you cope so well", " you never look down". I have been told these statements from various people that either know me or meet me and learn a little of my situation.
Should I be more down beat? Should I have a scowl on my face? Do I need to look as if I am falling apart? Would that make people feel then that when I say how hard it is to be a parent in my house, they actually believe me? I swear some think I make up the dramas and goings on in this house, because somehow I always seem to put a happy spin on it, smile, and dig deep and carry on.
I have been called bossy, a know it all, and stupid, to name a few of the name calling that have been thrown at me. Do I let it bother me? No! I deal with children all day and night and so name calling from an adult, whether to my face or to my back, gets deposited within the vaults of my memory, but side step my feelings, so I don't get hurt, just sad that after everything I do I still get abuse from those that should know better (adults in other words).
When I explain about the lack of sleep J has, I am asked how I cope, and told that it must be so hard for me. Well, yes it was hard four years ago, but you kind of adjust and it becomes the norm in your life. I don't look as if I only sleep five hours a night and I can thank my bright smile and Clarins Beauty Flash Balm for that.
I don't want to walk around, bedraggled in dowdy clothes, hair strewn by the wind, a hairbrush rarely pulled through it, and a face like thunder. I am very grateful for being able to carry a child and being surrounded by three of my children now makes me happy. A frown would not be welcome here. At my front door, negativity is left outside, bad manners are not welcomed and open arms ready for a cuddle are always expected. After all, no matter how bad your day is, when you have your child in your arms, or you peep in on them asleep, you smile and feel the love. You can't be sad after that.
Should I be more down beat? Should I have a scowl on my face? Do I need to look as if I am falling apart? Would that make people feel then that when I say how hard it is to be a parent in my house, they actually believe me? I swear some think I make up the dramas and goings on in this house, because somehow I always seem to put a happy spin on it, smile, and dig deep and carry on.
I have been called bossy, a know it all, and stupid, to name a few of the name calling that have been thrown at me. Do I let it bother me? No! I deal with children all day and night and so name calling from an adult, whether to my face or to my back, gets deposited within the vaults of my memory, but side step my feelings, so I don't get hurt, just sad that after everything I do I still get abuse from those that should know better (adults in other words).
When I explain about the lack of sleep J has, I am asked how I cope, and told that it must be so hard for me. Well, yes it was hard four years ago, but you kind of adjust and it becomes the norm in your life. I don't look as if I only sleep five hours a night and I can thank my bright smile and Clarins Beauty Flash Balm for that.
I don't want to walk around, bedraggled in dowdy clothes, hair strewn by the wind, a hairbrush rarely pulled through it, and a face like thunder. I am very grateful for being able to carry a child and being surrounded by three of my children now makes me happy. A frown would not be welcome here. At my front door, negativity is left outside, bad manners are not welcomed and open arms ready for a cuddle are always expected. After all, no matter how bad your day is, when you have your child in your arms, or you peep in on them asleep, you smile and feel the love. You can't be sad after that.
Sunday, 14 November 2010
Knowing me, knowing you.
How much does J know about life, the world, or even me?
Well lets start with life. He knows when it is dark we wear pajamas and supposedly go to bed and to sleep (I say supposedly as J finds it very hard to sleep and the landing is his bed still).
Does he know about God? No. He may repeat the word God, but he has no idea about the reality of Heaven, spirits, being born, dying etcetera. The concept of life and therefore the meaning of life is one that eludes him and plays no part of his being.
Moving onto the world. J does not understand about countries and religion, accents and languages, cultures and lifestyles. His world is the only world. It may seem small to us but inside his head his world is safe, secure and reliable. There is no war, no hate, no fighting and no inequality.
The only trouble with his world is that no one can access it. No one can climb inside and have a look around. We will never ever know what he experiences inside his head. I can sometimes see his thoughts by his body language or facial expression but I have to guess as he will never be able to convey to me whether he is sad or happy. He cannot say to me " mummy I am so happy because....", it is up to me to look at him and see the smile on his face or listen to his happy noises.
I used to think he was locked in his head. He is to some extent (locked in his head) by the barrier of communication but as he can dance a jig, sing a song (albeit not anywhere near word perfect but with the gist of it) or smile with pleasure, we can always see his mood and help accordingly.
Onto me.
J has no awareness of his creation. Unlike his brother O who loves to hear me tell stories of his time inside my tummy and what he did, and the first time I saw him when he was born and how much I loved him, J does'nt care how he was as a baby. I am sure he gets that babies are soon to be born when a woman has a large tummy, as he became baby obsessed from around the seventh month mark of my fourth pregnancy and I am sure he remembered my being pregnant with O and put two and two together.
It was again the barrier of communication and understanding that made it impossible for him to know when the baby was making his appearance. He just knew a baby would be home one day soon.
J has never told me he loves me. Sure, he can echolalic it back to me if I prompt him, but it is said with no feeling, no emotion and could just aswell be " I love you gummy" for all the meaning it has to him.
I know he depends on me. He relies on me to feed him, find his lost toys, fix his DVD player, run his bath or make his meals.
It is a very one sided relationship. One I have said before that if it were a marriage we were talking about and not a mother son relationship, a divorce would be inevitable. No one would put up with a one sided relationship. But it being a parent relationship makes it an unspoken agreement.
I chose to have a child. I created him (with a little help!) and I carried him. A contract was formed and even though there was some small print that was not shown to me at that time, I still have agreed to stick to it and abide by it.
J learns by repetition and routine and his knowledge is learned through memory. He can learn to piece a puzzle very quickly and will remember it forever more. He can write any letter I call out to him, but it is not a recognised letter, it is a command that he has learned by rote.
But from four years ago when I never thought he would be able to write or recognise his own name, he has surpassed that and continues to amaze me with his skills.
Well lets start with life. He knows when it is dark we wear pajamas and supposedly go to bed and to sleep (I say supposedly as J finds it very hard to sleep and the landing is his bed still).
Does he know about God? No. He may repeat the word God, but he has no idea about the reality of Heaven, spirits, being born, dying etcetera. The concept of life and therefore the meaning of life is one that eludes him and plays no part of his being.
Moving onto the world. J does not understand about countries and religion, accents and languages, cultures and lifestyles. His world is the only world. It may seem small to us but inside his head his world is safe, secure and reliable. There is no war, no hate, no fighting and no inequality.
The only trouble with his world is that no one can access it. No one can climb inside and have a look around. We will never ever know what he experiences inside his head. I can sometimes see his thoughts by his body language or facial expression but I have to guess as he will never be able to convey to me whether he is sad or happy. He cannot say to me " mummy I am so happy because....", it is up to me to look at him and see the smile on his face or listen to his happy noises.
I used to think he was locked in his head. He is to some extent (locked in his head) by the barrier of communication but as he can dance a jig, sing a song (albeit not anywhere near word perfect but with the gist of it) or smile with pleasure, we can always see his mood and help accordingly.
Onto me.
J has no awareness of his creation. Unlike his brother O who loves to hear me tell stories of his time inside my tummy and what he did, and the first time I saw him when he was born and how much I loved him, J does'nt care how he was as a baby. I am sure he gets that babies are soon to be born when a woman has a large tummy, as he became baby obsessed from around the seventh month mark of my fourth pregnancy and I am sure he remembered my being pregnant with O and put two and two together.
It was again the barrier of communication and understanding that made it impossible for him to know when the baby was making his appearance. He just knew a baby would be home one day soon.
J has never told me he loves me. Sure, he can echolalic it back to me if I prompt him, but it is said with no feeling, no emotion and could just aswell be " I love you gummy" for all the meaning it has to him.
I know he depends on me. He relies on me to feed him, find his lost toys, fix his DVD player, run his bath or make his meals.
It is a very one sided relationship. One I have said before that if it were a marriage we were talking about and not a mother son relationship, a divorce would be inevitable. No one would put up with a one sided relationship. But it being a parent relationship makes it an unspoken agreement.
I chose to have a child. I created him (with a little help!) and I carried him. A contract was formed and even though there was some small print that was not shown to me at that time, I still have agreed to stick to it and abide by it.
J learns by repetition and routine and his knowledge is learned through memory. He can learn to piece a puzzle very quickly and will remember it forever more. He can write any letter I call out to him, but it is not a recognised letter, it is a command that he has learned by rote.
But from four years ago when I never thought he would be able to write or recognise his own name, he has surpassed that and continues to amaze me with his skills.
Friday, 12 November 2010
Memory man
A few weeks back J started repeating the same boys names over and over again.
I would repeat it back to him to placate him but was intrigued as to who these boys were.
I asked at school and was told there were no children with those names either in his class or in the entire school, including any male members of staff.
A suggestion was put to me that he must have heard it from a television programme, but as I know pretty much every programme he watches I was not convinced.
Well, J had a stash of old photos in a scrapbook that was given to him from his first school he attended before we moved to this new area. One day when making his bed I found an A4 sheet of paper which had five boys photos on with their names underneath and realised these were his old class mates from that school. And there were two of these boys!
Mystery solved.
But what a memory for going back four years. At such a young age our memories are not that good in storing this kind of information, so to see him reel off each of the boys names as I pointed to them (he knew all five by name when I asked) was amazing.
One little boy though, quite sadly, passed away in January of 2009 from a brain tumour. He was only a few months older than J and his mother was (understandably) devastated.
He was very very similar to J in abilities and speech and it hit me hard too as I imagined the pain and suffering he went through and how it was too late for them to do anything for him as he could'nt tell them he had a headache and it was only by her pushing her GP that something just was'nt right with him that they did some tests and six weeks later he died in a hospice.
He was a lovely boy. Made me smile with his mannerisms and innocence. I still think of him a lot and it does bother me that it could all too easily happen to J, or something similar. God Bless you little I.x
J's memory spans lots of things though. I am sure if I drove back along the motorway he would recognise we were going back to our old house. He remembers his Grandma (well my Grandma really, his Great Grandma) and Grandad. If we are driving over towards were they used to live he starts getting excited and asking for the red cup ( they had a tall plastic red cup he loved to hold and fill with water). Even though Grandma passed in September 2006 (when O was a baby) and Grandad in December (few days before Chrsitmas) 2007, he still remembers them and their house.
I presume because his verbal skills and understanding are limited he makes up for it with his eyes and stores information away for future reference. I still know he is no-where near being a savant but so what? I have a little phrase I love - ' my son has autism - no he is not like Rainman'!
The reference to Rainman is because of the film where the character Rainman is a savant and so people who have only heard of autism via this film make presumptions that this is the only type of autism. Watch them get confused when you mention 'umbrella's and 'spectrums'! What does an umbrella have to do with a mental disability is the usual furrowed brow expression I receive!
Well I could'nt be all doom and gloom could I? Life is too short and I want to enjoy it in our very own special way.
I would repeat it back to him to placate him but was intrigued as to who these boys were.
I asked at school and was told there were no children with those names either in his class or in the entire school, including any male members of staff.
A suggestion was put to me that he must have heard it from a television programme, but as I know pretty much every programme he watches I was not convinced.
Well, J had a stash of old photos in a scrapbook that was given to him from his first school he attended before we moved to this new area. One day when making his bed I found an A4 sheet of paper which had five boys photos on with their names underneath and realised these were his old class mates from that school. And there were two of these boys!
Mystery solved.
But what a memory for going back four years. At such a young age our memories are not that good in storing this kind of information, so to see him reel off each of the boys names as I pointed to them (he knew all five by name when I asked) was amazing.
One little boy though, quite sadly, passed away in January of 2009 from a brain tumour. He was only a few months older than J and his mother was (understandably) devastated.
He was very very similar to J in abilities and speech and it hit me hard too as I imagined the pain and suffering he went through and how it was too late for them to do anything for him as he could'nt tell them he had a headache and it was only by her pushing her GP that something just was'nt right with him that they did some tests and six weeks later he died in a hospice.
He was a lovely boy. Made me smile with his mannerisms and innocence. I still think of him a lot and it does bother me that it could all too easily happen to J, or something similar. God Bless you little I.x
J's memory spans lots of things though. I am sure if I drove back along the motorway he would recognise we were going back to our old house. He remembers his Grandma (well my Grandma really, his Great Grandma) and Grandad. If we are driving over towards were they used to live he starts getting excited and asking for the red cup ( they had a tall plastic red cup he loved to hold and fill with water). Even though Grandma passed in September 2006 (when O was a baby) and Grandad in December (few days before Chrsitmas) 2007, he still remembers them and their house.
I presume because his verbal skills and understanding are limited he makes up for it with his eyes and stores information away for future reference. I still know he is no-where near being a savant but so what? I have a little phrase I love - ' my son has autism - no he is not like Rainman'!
The reference to Rainman is because of the film where the character Rainman is a savant and so people who have only heard of autism via this film make presumptions that this is the only type of autism. Watch them get confused when you mention 'umbrella's and 'spectrums'! What does an umbrella have to do with a mental disability is the usual furrowed brow expression I receive!
Well I could'nt be all doom and gloom could I? Life is too short and I want to enjoy it in our very own special way.
Tuesday, 9 November 2010
Join me dancing naked in the rain
Do you remember that Pearl Jam song?
I may as well play it on loud speaker for J sometimes.
If he has found the back door key he is sneaking off into the garden. Rain or shine that boy is desperate to be out there.
Lately as the season has been turning into autumn, and the sky has been showering us with rain, both light and heavy, J has been trying to perfect his rain dance moves.
I caught him out there after school. I was alerted to the fact that there were J shaped wet footprints patterning the floor in the hallway and felt the cold draught flowing through the house (as he leaves the door open).
He was side to side jigging, laughing with his head thrown back and stomping across the little puddles and rivers forming on the patio.
J has a special way he enjoys the rain however. And that is to remove his socks, rolls his trousers up, and occasionaly take his top off. In the past he would streak to the wind and gaily run amok for all to see. As he has no modesty whatsoever I can presume that the non removal of the trousers is more to do with him not wanting to get too cold, rather than not wanting next door to see his expression of freedom.
He is a very nature orientated boy and always has been. On walks in the forest he stands and hugs trees and sits under them looking very serene and angelic, almost as if he is in tune and harmony with them. We can walk for miles, with him always five paces behind, as if to play the part of a stroppy teenager, but really for the fact he is absorbing his surroundings and gaining extreme pleasure from the freedom of outdoors, the quieter sounds of humans and machines, and the non pressuring nature which does not ask him questions, stare at him, encroach on his space and allows him the time to amble along with no rush.
Everywhere else has the hubbub of cars, planes, trains, lorries, people, televisions, radios, computers and electrical equipment that buzzes, crackles and flickers. I love the forest as much as he does, but sadly with the winter rapidly approaching we cannot gain as much from being blown to and fro, heads bowed to the driving rain and bones chattering from the cold!
I may as well play it on loud speaker for J sometimes.
If he has found the back door key he is sneaking off into the garden. Rain or shine that boy is desperate to be out there.
Lately as the season has been turning into autumn, and the sky has been showering us with rain, both light and heavy, J has been trying to perfect his rain dance moves.
I caught him out there after school. I was alerted to the fact that there were J shaped wet footprints patterning the floor in the hallway and felt the cold draught flowing through the house (as he leaves the door open).
He was side to side jigging, laughing with his head thrown back and stomping across the little puddles and rivers forming on the patio.
J has a special way he enjoys the rain however. And that is to remove his socks, rolls his trousers up, and occasionaly take his top off. In the past he would streak to the wind and gaily run amok for all to see. As he has no modesty whatsoever I can presume that the non removal of the trousers is more to do with him not wanting to get too cold, rather than not wanting next door to see his expression of freedom.
He is a very nature orientated boy and always has been. On walks in the forest he stands and hugs trees and sits under them looking very serene and angelic, almost as if he is in tune and harmony with them. We can walk for miles, with him always five paces behind, as if to play the part of a stroppy teenager, but really for the fact he is absorbing his surroundings and gaining extreme pleasure from the freedom of outdoors, the quieter sounds of humans and machines, and the non pressuring nature which does not ask him questions, stare at him, encroach on his space and allows him the time to amble along with no rush.
Everywhere else has the hubbub of cars, planes, trains, lorries, people, televisions, radios, computers and electrical equipment that buzzes, crackles and flickers. I love the forest as much as he does, but sadly with the winter rapidly approaching we cannot gain as much from being blown to and fro, heads bowed to the driving rain and bones chattering from the cold!
Monday, 8 November 2010
Another artistic creation
J has a bit of an obsession with drawing this style of house. As you can see I have captured one on his magnetic drawer and one which he decorated the family bathroom wall with, with a biro pen he found.This house design is also adorning his torso and arms.
Even though this means another room has to be repainted (he drew windows around the rest of the bathroom walls) it does look quite good!
Sunday, 7 November 2010
The little comedian
J has always had a way about him that can make others laugh ( in the nice way).
On Friday he was awarded the 'Golden Coin' at his school. This is not a literal award, rather an acknowledgement of an achievment, and is given to a child from each class each week.
When he went up to the front of the assembly to stand and listen to why he was given the award this week, he stood happily smiling, and then decided that the hat which is reserved for the birthday children was his. He popped it on his head and as it is a rather large hat, in the shape of a birthday cake with candles atop, it looked rather funny and comical.
I was reminded of a funny anecdote going back a few years to when he was at his first school before we moved away.
It was his first Christmas at this school, and he must have been four and a half years old.
All the parents were invited along for the annual Nativity being performed by the students.
As J is not one of the verbal students he has roles which are more physical. He was the third of the Wisemen. All he had to do was follow the other two Wisemen (who were following an adult for direction) and go around in a circle around the baby Jesus.
J thought that it must have been too dark in this scene and so legged it to the light switches and turned on all the lights in the hall, spoiling the atmosphere of the scene but making people laugh at the same time.
A lot of the time however we are never sure as to what has made him chuckle, laugh, giggle or howl with laughter.
He has a very infectious giggle, that type of giggle where you are trying to stiffle it because of the situation you are in and cannot be seen laughing, and your body is jiggling, shoulders shaking up and down, and a type of nose snort erupts followed by the fit of giggles.
I have yet to get in on the joke but it must be hilarious to him!
On Friday he was awarded the 'Golden Coin' at his school. This is not a literal award, rather an acknowledgement of an achievment, and is given to a child from each class each week.
When he went up to the front of the assembly to stand and listen to why he was given the award this week, he stood happily smiling, and then decided that the hat which is reserved for the birthday children was his. He popped it on his head and as it is a rather large hat, in the shape of a birthday cake with candles atop, it looked rather funny and comical.
I was reminded of a funny anecdote going back a few years to when he was at his first school before we moved away.
It was his first Christmas at this school, and he must have been four and a half years old.
All the parents were invited along for the annual Nativity being performed by the students.
As J is not one of the verbal students he has roles which are more physical. He was the third of the Wisemen. All he had to do was follow the other two Wisemen (who were following an adult for direction) and go around in a circle around the baby Jesus.
J thought that it must have been too dark in this scene and so legged it to the light switches and turned on all the lights in the hall, spoiling the atmosphere of the scene but making people laugh at the same time.
A lot of the time however we are never sure as to what has made him chuckle, laugh, giggle or howl with laughter.
He has a very infectious giggle, that type of giggle where you are trying to stiffle it because of the situation you are in and cannot be seen laughing, and your body is jiggling, shoulders shaking up and down, and a type of nose snort erupts followed by the fit of giggles.
I have yet to get in on the joke but it must be hilarious to him!
Friday, 5 November 2010
Tories Versus Disabilities
So yet again it has come to light that the 'wonderful' Tory government are taking away an important benefit to a sector of society who are disabled and living in residential care.
It seems to me that the majority of people who do not care about these cuts that have been going on towards people with disabilities have not experienced on a personal level the need of these benefits.
And when I discuss this I am not talking about a 'scrounger' of the state, someone perfectly fit and capable of working, I am talking about those that are being targeted because they are disabled and deemed less of our society.
And please do not tell me that in order to get our country stable economically that these benefit slashes are the only solution. Because how about we take the approach of taxing the banks more. There is a movement about that suggests that every transaction carried out in the banking world, whether it be a deposit or withdrawal, a 'Robin Hood' tax should be levied on each and every one and would generate enough money to enable the repair of this economic crisis. They are profiteering immensly and when I read that the fat cats have found a loophole around their bonus awards it makes me despair. A cap on bonuses was implemented to stop them raking it in no matter how they performed, but by chance a loophole was found (or was deliberately left in but hoping to be hidden from us ordinary folk) and so some can earn a fortune for not very good perfomance.
So, who has decided to take away the 'freedom' element of the Disability Living Allowance (called the Mobility Element really) to those living in residential care? Do they not realise that this element allowed them to own a car and have a carer take them out and about? Or is it that because they are disabled, living in residential care and therefore requiring help on a daily basis that they should be grateful for having a roof over their heads and not expect to go out anywhere further than the corner shop?
Oh yes I know there are buses and trains but again are you forgetting that these are disabled people? Autistics can be frightened of lots of people, noise, large places or could become lost. A wheelchair is an obstacle if there are no lifts (elevators).
Take a minute all you who do not care. Remember this. There for the Grace of God go you. Tomorrow you may find yourself disabled. Tomorrow you may become a carer for someone you love. If that was to happen (and for the record I never wish that on anyone) you will suddenly find you need help, you need support, and you rely on others a heck of a lot more. Then you may understand the importance of these benefits and stop knocking it down.
It seems to me that the majority of people who do not care about these cuts that have been going on towards people with disabilities have not experienced on a personal level the need of these benefits.
And when I discuss this I am not talking about a 'scrounger' of the state, someone perfectly fit and capable of working, I am talking about those that are being targeted because they are disabled and deemed less of our society.
And please do not tell me that in order to get our country stable economically that these benefit slashes are the only solution. Because how about we take the approach of taxing the banks more. There is a movement about that suggests that every transaction carried out in the banking world, whether it be a deposit or withdrawal, a 'Robin Hood' tax should be levied on each and every one and would generate enough money to enable the repair of this economic crisis. They are profiteering immensly and when I read that the fat cats have found a loophole around their bonus awards it makes me despair. A cap on bonuses was implemented to stop them raking it in no matter how they performed, but by chance a loophole was found (or was deliberately left in but hoping to be hidden from us ordinary folk) and so some can earn a fortune for not very good perfomance.
So, who has decided to take away the 'freedom' element of the Disability Living Allowance (called the Mobility Element really) to those living in residential care? Do they not realise that this element allowed them to own a car and have a carer take them out and about? Or is it that because they are disabled, living in residential care and therefore requiring help on a daily basis that they should be grateful for having a roof over their heads and not expect to go out anywhere further than the corner shop?
Oh yes I know there are buses and trains but again are you forgetting that these are disabled people? Autistics can be frightened of lots of people, noise, large places or could become lost. A wheelchair is an obstacle if there are no lifts (elevators).
Take a minute all you who do not care. Remember this. There for the Grace of God go you. Tomorrow you may find yourself disabled. Tomorrow you may become a carer for someone you love. If that was to happen (and for the record I never wish that on anyone) you will suddenly find you need help, you need support, and you rely on others a heck of a lot more. Then you may understand the importance of these benefits and stop knocking it down.
Monday, 1 November 2010
Blue Badge Bashers
Right there is something that gets my goat and it bugs me.
Disabled Parking Badges.
There seems to be a lack of knowledge regarding these special parking permits and to who they can be issued to.
I have lost count of the number of times I have parked up, with J in tow naturally, and have been looked at, tutted at, muttered at that we should not have a badge as there is nothing wrong with us.
So the implication from those busy bodies is that J should have a physical disability to qualify for a badge.
Should I be facetious and carry a copy of the rules regarding the aquisition of the badge and the rules in place to obtain the higher rate of the DLA which in turn enables the badge to be procurred? I could then detail to these people the facts and enlighten them as to their lack of knowledge. Can I be bothered to? Meh (that sound one makes along the lines of pah).
What does tickle me however is that a sprightly pensioner hops out of their car, with the badge displayed, and they almost hop skip and jump their way to their destination, after giving glances at my car, J's badge and us (I point out that there is no-one else in their car it is just them soley).
If indeed one must have a physical disability then I must concur the solitary, sprightly, skipping pensioner is not a part of that group.
It appears that youngsters are the target. The 'children should be seen and not heard' brigade who are getting their blue rinses and polyester crimplene slacks in a twist over the fact that a child should be afforded the luxury of being able to park on a yellow line whereas in their day the children had to walk 35 miles everyday just to get the lard for their meat and potato pie.
Why do our children need this entitlement?
Because they can experience melt downs which erupt into gigantic screaming fits and trying to walk long distances can exacerbate this. Because they can become frightened of new places. Because large open spaces can trigger bad behaviour ( a common autistic trait, something to do with the audio receptive and echo). And because they already have special needs and do not need to be persecuted anymore by the likes of those bullying and interfering misers.
Do these people really believe we love to have these badges? Because believe me I really really don't want one. I just have it because it makes life just that little tiny bit easier.
Disabled Parking Badges.
There seems to be a lack of knowledge regarding these special parking permits and to who they can be issued to.
I have lost count of the number of times I have parked up, with J in tow naturally, and have been looked at, tutted at, muttered at that we should not have a badge as there is nothing wrong with us.
So the implication from those busy bodies is that J should have a physical disability to qualify for a badge.
Should I be facetious and carry a copy of the rules regarding the aquisition of the badge and the rules in place to obtain the higher rate of the DLA which in turn enables the badge to be procurred? I could then detail to these people the facts and enlighten them as to their lack of knowledge. Can I be bothered to? Meh (that sound one makes along the lines of pah).
What does tickle me however is that a sprightly pensioner hops out of their car, with the badge displayed, and they almost hop skip and jump their way to their destination, after giving glances at my car, J's badge and us (I point out that there is no-one else in their car it is just them soley).
If indeed one must have a physical disability then I must concur the solitary, sprightly, skipping pensioner is not a part of that group.
It appears that youngsters are the target. The 'children should be seen and not heard' brigade who are getting their blue rinses and polyester crimplene slacks in a twist over the fact that a child should be afforded the luxury of being able to park on a yellow line whereas in their day the children had to walk 35 miles everyday just to get the lard for their meat and potato pie.
Why do our children need this entitlement?
Because they can experience melt downs which erupt into gigantic screaming fits and trying to walk long distances can exacerbate this. Because they can become frightened of new places. Because large open spaces can trigger bad behaviour ( a common autistic trait, something to do with the audio receptive and echo). And because they already have special needs and do not need to be persecuted anymore by the likes of those bullying and interfering misers.
Do these people really believe we love to have these badges? Because believe me I really really don't want one. I just have it because it makes life just that little tiny bit easier.
Saturday, 30 October 2010
Change the outlook, change the attitude, change the future
Over the last few decades society has been forced to look at and accept that people with mental disabilities do exist.
These people can either have their disability from birth (whether it was noted at birth or later on in childhood when milestones were not being met) or acquire it through illness or accident.
What did our ancestors do with their offspring who presented with a learning difficulty? For some they had them put in a mental institution, perhaps from a very young age, and others kept them under house arrest, away from prying eyes and gossips.
These children, teenagers and adults were not integrated into society for fear of the response of others. A lack of understanding, embarrassment, and accusations of blame were more than likely levelled to these families, and so to keep their social standing, these children and adults were hidden away.
There are many reports that those mental institutions were harsh and unkind to their residents, with beatings, painful 'human guinea pig' tests, and uncaring staff making the lives of those people even more of a struggle.
Quite how we as human beings thought it just and right to be so cruel and hurtful to people with special needs is beyond me.
But then there is always the fear of the unknown, and fear breeds hostility and resentment, and human beings can turn on each other for the slightest thing.
Thankfully my generation is learning about it all, and that no matter what the disability, we are all human, we all breath the same air, we all have blood pumping through our veins, and we all deserve to live a life without prejudice, pain and contempt.
But, even though the majority is now aware of disabilities, it does not stop the stares and the judgement from a certain sector of people.
Steps still need to be implemented or improved upon in cracking down on those in society who thrive on bullying those more vulnerable. Police need to wake up and do the job they took the oath on, instead of side stepping their duties, as was seen in a recent case in the press. Judges and the CPS need to wake up to the realisation that harassment, bullying and intimidation upon those in society that need more protection can only be achieved by having a hard and strong line that prosecutes and punishes (not with a measly community service order) and shows others thinking of following in their peers footsteps, that it is not acceptable and it will not be tolerated.
If we don't continue to push forward, expose the reality, punish those who bully and intimidate, improve the services that provide care, respite and advice, and shout loudly and proudly that having a child with a disability is in no way a bad thing then we will not continue this journey out of the dark ages where we one day will see equality and social freedom ( from prejudice and hate) being the norm.
These people can either have their disability from birth (whether it was noted at birth or later on in childhood when milestones were not being met) or acquire it through illness or accident.
What did our ancestors do with their offspring who presented with a learning difficulty? For some they had them put in a mental institution, perhaps from a very young age, and others kept them under house arrest, away from prying eyes and gossips.
These children, teenagers and adults were not integrated into society for fear of the response of others. A lack of understanding, embarrassment, and accusations of blame were more than likely levelled to these families, and so to keep their social standing, these children and adults were hidden away.
There are many reports that those mental institutions were harsh and unkind to their residents, with beatings, painful 'human guinea pig' tests, and uncaring staff making the lives of those people even more of a struggle.
Quite how we as human beings thought it just and right to be so cruel and hurtful to people with special needs is beyond me.
But then there is always the fear of the unknown, and fear breeds hostility and resentment, and human beings can turn on each other for the slightest thing.
Thankfully my generation is learning about it all, and that no matter what the disability, we are all human, we all breath the same air, we all have blood pumping through our veins, and we all deserve to live a life without prejudice, pain and contempt.
But, even though the majority is now aware of disabilities, it does not stop the stares and the judgement from a certain sector of people.
Steps still need to be implemented or improved upon in cracking down on those in society who thrive on bullying those more vulnerable. Police need to wake up and do the job they took the oath on, instead of side stepping their duties, as was seen in a recent case in the press. Judges and the CPS need to wake up to the realisation that harassment, bullying and intimidation upon those in society that need more protection can only be achieved by having a hard and strong line that prosecutes and punishes (not with a measly community service order) and shows others thinking of following in their peers footsteps, that it is not acceptable and it will not be tolerated.
If we don't continue to push forward, expose the reality, punish those who bully and intimidate, improve the services that provide care, respite and advice, and shout loudly and proudly that having a child with a disability is in no way a bad thing then we will not continue this journey out of the dark ages where we one day will see equality and social freedom ( from prejudice and hate) being the norm.
Monday, 25 October 2010
Avoid the avoidable
Throughout my journey into autism and the way it affects J, I have learnt many things which can trigger off melt downs, tempers, screaming (both the happy and upset screaming) and dangerous things such as ponds or main roads.
I find that certain quarters expect J and myself to go out of our way to accomodate them. As an adult with my own mind, common sense, and a tired brain having to deal and cope with the 24/7 ups and downs of J, I now no longer allow 'guilt trips' to be administered or double edged comments from those that should know better.
I understand J. He knows I understand him. He trusts that I will not put him into a situation where it would end with me continually saying " no J come back, no J stop doing that" et cetera.
Of course certain situations are unavoidable, such as the recent melt down at his brothers school. There was no way around this event as I have no family close by, and even if I did I have doubts the help would be proffered anyway (apart from my own mum, who by the way is a fantastic nanna to her grandsons and after 32 years has become my best friend).
I get quite angry now when hints are made that I should be taking J, and the other children also, to places out of my comfort zone. Places that have obvious dangers of water, are close to busy roads or are not really tailored for children, which would not just present a risk to J soley. Places where I would be left to care for all three children as I am the boring one who does not drink alcohol and so is deemed a party pooper (or holder of a clean liver which ever way you want to look at it!)
Holidays need to be planned for and I have to ensure they are suitable for children. I would'nt dream of taking them on holiday to a place where adults drank too much alcohol on a daily basis and became spiteful with it and it came down to me having to be the only responsible adult around - that is not a holiday for me!
Why would anyone want to be put through this? It would not be fun and no-one would enjoy themselves.
I have places that are tried and tested. An example is that I will not take the children to a playground in the middle of the day on a school holiday or weekend. I tried a trip out again today and it was awful and proved my point. J did'nt understand that you can not stand close to the swings and freak the mums out with your stares. He was trying to push his way onto equipment and I had to remove him for his own safety. Of course this then affected O as it was not fair for him to leave, but I turned the trip into a magical walk amongst the leaves and O had to count how many leaves there were on the ground - a never ending task!
It seems until others have experienced a melt down or hectic behaviour from J, when out in public, and have to deal with it alone, they have little compassion for me, and have even been known to be spiteful with words to others. J may not be aware of the bullies in this world (and they come in all shapes and sizes, short and tall, men and women, old and young) but I am, and I do not allow them to behave in this negative and hurtful manner - I will always speak my mind and not be told I am silly or stupid - especially in my own home (not that my hubby ever has spoken to me like that - he has respect).
I find that certain quarters expect J and myself to go out of our way to accomodate them. As an adult with my own mind, common sense, and a tired brain having to deal and cope with the 24/7 ups and downs of J, I now no longer allow 'guilt trips' to be administered or double edged comments from those that should know better.
I understand J. He knows I understand him. He trusts that I will not put him into a situation where it would end with me continually saying " no J come back, no J stop doing that" et cetera.
Of course certain situations are unavoidable, such as the recent melt down at his brothers school. There was no way around this event as I have no family close by, and even if I did I have doubts the help would be proffered anyway (apart from my own mum, who by the way is a fantastic nanna to her grandsons and after 32 years has become my best friend).
I get quite angry now when hints are made that I should be taking J, and the other children also, to places out of my comfort zone. Places that have obvious dangers of water, are close to busy roads or are not really tailored for children, which would not just present a risk to J soley. Places where I would be left to care for all three children as I am the boring one who does not drink alcohol and so is deemed a party pooper (or holder of a clean liver which ever way you want to look at it!)
Holidays need to be planned for and I have to ensure they are suitable for children. I would'nt dream of taking them on holiday to a place where adults drank too much alcohol on a daily basis and became spiteful with it and it came down to me having to be the only responsible adult around - that is not a holiday for me!
Why would anyone want to be put through this? It would not be fun and no-one would enjoy themselves.
I have places that are tried and tested. An example is that I will not take the children to a playground in the middle of the day on a school holiday or weekend. I tried a trip out again today and it was awful and proved my point. J did'nt understand that you can not stand close to the swings and freak the mums out with your stares. He was trying to push his way onto equipment and I had to remove him for his own safety. Of course this then affected O as it was not fair for him to leave, but I turned the trip into a magical walk amongst the leaves and O had to count how many leaves there were on the ground - a never ending task!
It seems until others have experienced a melt down or hectic behaviour from J, when out in public, and have to deal with it alone, they have little compassion for me, and have even been known to be spiteful with words to others. J may not be aware of the bullies in this world (and they come in all shapes and sizes, short and tall, men and women, old and young) but I am, and I do not allow them to behave in this negative and hurtful manner - I will always speak my mind and not be told I am silly or stupid - especially in my own home (not that my hubby ever has spoken to me like that - he has respect).
Sunday, 24 October 2010
Full moon
A few years ago I came across an interesting piece regarding the full moon and its effect on people.
Not everyone of course, but more significantly those with a learning difficulty.
At the time of the full moon this category of person can experience sleep problems and an increase in hyper activity.
When I read it I was sceptical. But, due to my OCD I had to track his ups and downs and chart it to the waxing and waning moon.
And low and behold there appeared a pattern.
His sleeping has always been sporadic at night, going from only having 3 hours to a full 8 hours but on every full moon he was restless in the day far more, and demanded more of the repetitive words be repeated back to him ('brush your teeth' being the favourite still now) and could not settle at night until around midnight, no matter how much exercise he has incurred during the day.
He would be up at the end of the first sleep cycle and pace around, making his noises and just not being able to sit still.
There are as many articles out there to contradict this finding though.
But, it fits the pattern.
And I now prepare for the full moon and J.
I have mentioned here and most probably before in previous posts that J has words or phrases he says over and over again, and he needs them to be repeated back to him, otherwise he becomes very agitated and will progressively get louder and louder and intersperse it with crying, self hitting, attention seeking behaviour such as knocking photo frames off of the mantle and screams.
All of the following have been said by him -
*Brush your teeth
*Orange
*M (a girls name from his school but I am keeping the privacy option here )
*Why seddy bear, yessy yessy
These are his top four and can be said daily by him.
All you have to do is to repeat the word or phrase back to him. Simple. He is placated and happy.
If only it was all that easy!
Not everyone of course, but more significantly those with a learning difficulty.
At the time of the full moon this category of person can experience sleep problems and an increase in hyper activity.
When I read it I was sceptical. But, due to my OCD I had to track his ups and downs and chart it to the waxing and waning moon.
And low and behold there appeared a pattern.
His sleeping has always been sporadic at night, going from only having 3 hours to a full 8 hours but on every full moon he was restless in the day far more, and demanded more of the repetitive words be repeated back to him ('brush your teeth' being the favourite still now) and could not settle at night until around midnight, no matter how much exercise he has incurred during the day.
He would be up at the end of the first sleep cycle and pace around, making his noises and just not being able to sit still.
There are as many articles out there to contradict this finding though.
But, it fits the pattern.
And I now prepare for the full moon and J.
I have mentioned here and most probably before in previous posts that J has words or phrases he says over and over again, and he needs them to be repeated back to him, otherwise he becomes very agitated and will progressively get louder and louder and intersperse it with crying, self hitting, attention seeking behaviour such as knocking photo frames off of the mantle and screams.
All of the following have been said by him -
*Brush your teeth
*Orange
*M (a girls name from his school but I am keeping the privacy option here )
*Why seddy bear, yessy yessy
These are his top four and can be said daily by him.
All you have to do is to repeat the word or phrase back to him. Simple. He is placated and happy.
If only it was all that easy!
Friday, 22 October 2010
Oooh that was a melt down and then some
Okay, so today was anticipated. It was mentally planned for. I was expecting some kind of recourse for the events to take place. However, what did eventually occur this morning was no where near anything I could have forseen, and with only myself to guide I was stranded and lost in a world of my eight year olds melt down in the middle of my middle sons school.
Let me start at the begining.......
Today was an inset or teacher training day for J.
O still had school, even though it was 'wear something bright' day, so no uniform.
J was thrown off kilter first thing as he was dressed in his weekend clothes, and so presumed that it was a Saturday and therefore Mencap day.
As we are driving to O's school J is becoming agitated in the car, calling out "Jamies" which is his word for Mencap.
We pull up fairly close to the gates and all get out.
On our walk into school J is calling out "wipe, wipe wipe" which is his word he uses when he is getting upset.
I am using the calming words I say to him to try to alleviate the situation, but it is not having its desired effect.
As we approach O's classroom J takes his coat off and wants to play.
I make the attempts to get him to put it back on and leave but he throws himself to the floor.
He screams a scream like a banshee on sugar coated LSD.
I manage to get him off the floor (and I am carrying W as well).
He shrugs me off and tries to run into class again.
I pull him back and he throws himself on the floor.
I get him up and he screams.
We move along the corridor two paces and he screams and starts to hit himself.
Then he drops to the floor like a tonne of bricks.
I get him up again and we move three paces before he screams and whacks his arms together hitting them hard.
This up and down, scream and hitting continues all the way back to the car.
It takes us twenty minutes to reach the car in what would usually take only three.
I would point out now that each and every other parent stared. Stared and caught flies in their open mouths.
No one offered to help. No one bothered to offer a kind smile. I was looked upon as some freak show and they had gotten in for free to view.
Back at home I could see the effect this melt down had had on J.
The area under his eyes was and still is red.
It lookes like he has been punched.
But, it obviously occured from the high levels of stress hormone, cortisol, that was released and made the blood rush to his face where it has pooled and now looks like I beat him aswell as allow him to throw a strop.
So to summise, if there had not been another one of these days off for 'training' (which could be taken in the actual holiday the following week) we would not have had this happen and my hair would not have added another crop of grey to it.
Let me start at the begining.......
Today was an inset or teacher training day for J.
O still had school, even though it was 'wear something bright' day, so no uniform.
J was thrown off kilter first thing as he was dressed in his weekend clothes, and so presumed that it was a Saturday and therefore Mencap day.
As we are driving to O's school J is becoming agitated in the car, calling out "Jamies" which is his word for Mencap.
We pull up fairly close to the gates and all get out.
On our walk into school J is calling out "wipe, wipe wipe" which is his word he uses when he is getting upset.
I am using the calming words I say to him to try to alleviate the situation, but it is not having its desired effect.
As we approach O's classroom J takes his coat off and wants to play.
I make the attempts to get him to put it back on and leave but he throws himself to the floor.
He screams a scream like a banshee on sugar coated LSD.
I manage to get him off the floor (and I am carrying W as well).
He shrugs me off and tries to run into class again.
I pull him back and he throws himself on the floor.
I get him up and he screams.
We move along the corridor two paces and he screams and starts to hit himself.
Then he drops to the floor like a tonne of bricks.
I get him up again and we move three paces before he screams and whacks his arms together hitting them hard.
This up and down, scream and hitting continues all the way back to the car.
It takes us twenty minutes to reach the car in what would usually take only three.
I would point out now that each and every other parent stared. Stared and caught flies in their open mouths.
No one offered to help. No one bothered to offer a kind smile. I was looked upon as some freak show and they had gotten in for free to view.
Back at home I could see the effect this melt down had had on J.
The area under his eyes was and still is red.
It lookes like he has been punched.
But, it obviously occured from the high levels of stress hormone, cortisol, that was released and made the blood rush to his face where it has pooled and now looks like I beat him aswell as allow him to throw a strop.
So to summise, if there had not been another one of these days off for 'training' (which could be taken in the actual holiday the following week) we would not have had this happen and my hair would not have added another crop of grey to it.
Sunday, 17 October 2010
Little things
Isn't it funny how I celebrate such small achievments (in other peoples eyes) that J demonstrates, but to me they are huge.
I suppose because I have become accustomed to the fact that he will not be a rocket scientist, drive a car, marry or have children, I appreciate all the minors because they are more like the majors to me.
He gets spellings home now as homework. I held each word up to him and he proceeded to point to each letter, name it correctly, and then look to me to help him pronounce the word it spelt. The only word he was able to say correctly without any guidance was 'mum'. Now I know he has learnt this from memory, by which if he says or someone else says " M. U .M" he remembers it as a rote saying, ie; ' M U M mum'. He won't just say 'mum' if he sees the word with no verbal direction.
But, the fact he was happy for me to hold the cards up, he did'nt try to escape off to another activity, and he seemed to enjoy the interaction we had, along with getting all the letters correct, made it a very special moment.
I also am amazed at his computer skills.
He is like a whizz kid maneuvering the arrow around, double clicking, entering into programmes such as paint, and wow I let him on YouTube and I typed in Fimbles, and he knew how to access the videos, to exit them, and to enlarge the screen.
He loves YouTube now as he can view all the programmes he loves but which are not aired on television anymore.
I also tried him on eBay as I thought an experiement was in order.
You see we never really know what to buy him for presents. Yes we know his latest fad or fixation but he cannot tell me exactly the things he'd like.
So I typed in Fimbles, and he was in and out of the adverts, enlarging the pictures to see them better, and I could see what he was loving. He bypassed certain adverts so I took that as a no!
My test worked and he'll now get presents he really wants!
I suppose because I have become accustomed to the fact that he will not be a rocket scientist, drive a car, marry or have children, I appreciate all the minors because they are more like the majors to me.
He gets spellings home now as homework. I held each word up to him and he proceeded to point to each letter, name it correctly, and then look to me to help him pronounce the word it spelt. The only word he was able to say correctly without any guidance was 'mum'. Now I know he has learnt this from memory, by which if he says or someone else says " M. U .M" he remembers it as a rote saying, ie; ' M U M mum'. He won't just say 'mum' if he sees the word with no verbal direction.
But, the fact he was happy for me to hold the cards up, he did'nt try to escape off to another activity, and he seemed to enjoy the interaction we had, along with getting all the letters correct, made it a very special moment.
I also am amazed at his computer skills.
He is like a whizz kid maneuvering the arrow around, double clicking, entering into programmes such as paint, and wow I let him on YouTube and I typed in Fimbles, and he knew how to access the videos, to exit them, and to enlarge the screen.
He loves YouTube now as he can view all the programmes he loves but which are not aired on television anymore.
I also tried him on eBay as I thought an experiement was in order.
You see we never really know what to buy him for presents. Yes we know his latest fad or fixation but he cannot tell me exactly the things he'd like.
So I typed in Fimbles, and he was in and out of the adverts, enlarging the pictures to see them better, and I could see what he was loving. He bypassed certain adverts so I took that as a no!
My test worked and he'll now get presents he really wants!
Friday, 15 October 2010
I may be wrong here
The following is my opinion. I am basing my post on children like J - learning difficulties and autism.
I find it really sad when parents will not accept their child has special needs and stops them going to a special needs school.
I have seen on forum boards and in real life over the years many parents who send their child to mainstream, where they end up moaning about the way the teacher can not cope with their child, that their child is aggressive to other children, that their child is distressed et cetera.
Why oh why are they doing this to their child?
Denial?
Embarrassment?
Refusal to accept it?
I understand that some find it hard to get their child into a special school due to the local authority's lack of intervention, or the delay in Statementing.
But those that feel their own face should be saved by sending them to mainstream is so sad in my book.
I have seen first hand the amazing work special schools do.
The teachers, the LSAs, the receptionists, the dinner staff to name mostly are all geared for their job. They have a compassion and desire to make life fun, easier, interesting and safe for our special children. The classes are smaller, the ratio of teacher/LSA to child is greater (J is in a class of eight with one teacher and three LSAs) and the equipment is designed for special needs.
When we were at the start of the journey, when we knew he had autism but needed to be assessed for the year, the team we were under helped us to find the best school for him.
While we were waiting for the Statement of Special Needs to be completed he started as a 'nursery' pupil at his school, attending three days per week.
The part I had to complete for his Statement had me writing that at no point did I consider a mainstream school suitable and that if they tried to place him into one I would fight them through every tribunal available.
I was so anti-mainstream because it would have been J getting 'lost' amongst the noise, the crowds, the expectations of him socially.
Why would a parent prefer this for their child just so they can save face amongst family and friends?
I know I sound harsh but I thought every parent wanted the best for their child not their social standing.I only hope those in denial get a taste of reality, before their child becomes too traumatised by bullying, struggling socially, not learning (because the way education is taught between mainstream and special schools differs vastly) and emotional fall outs.
I find it really sad when parents will not accept their child has special needs and stops them going to a special needs school.
I have seen on forum boards and in real life over the years many parents who send their child to mainstream, where they end up moaning about the way the teacher can not cope with their child, that their child is aggressive to other children, that their child is distressed et cetera.
Why oh why are they doing this to their child?
Denial?
Embarrassment?
Refusal to accept it?
I understand that some find it hard to get their child into a special school due to the local authority's lack of intervention, or the delay in Statementing.
But those that feel their own face should be saved by sending them to mainstream is so sad in my book.
I have seen first hand the amazing work special schools do.
The teachers, the LSAs, the receptionists, the dinner staff to name mostly are all geared for their job. They have a compassion and desire to make life fun, easier, interesting and safe for our special children. The classes are smaller, the ratio of teacher/LSA to child is greater (J is in a class of eight with one teacher and three LSAs) and the equipment is designed for special needs.
When we were at the start of the journey, when we knew he had autism but needed to be assessed for the year, the team we were under helped us to find the best school for him.
While we were waiting for the Statement of Special Needs to be completed he started as a 'nursery' pupil at his school, attending three days per week.
The part I had to complete for his Statement had me writing that at no point did I consider a mainstream school suitable and that if they tried to place him into one I would fight them through every tribunal available.
I was so anti-mainstream because it would have been J getting 'lost' amongst the noise, the crowds, the expectations of him socially.
Why would a parent prefer this for their child just so they can save face amongst family and friends?
I know I sound harsh but I thought every parent wanted the best for their child not their social standing.I only hope those in denial get a taste of reality, before their child becomes too traumatised by bullying, struggling socially, not learning (because the way education is taught between mainstream and special schools differs vastly) and emotional fall outs.
Thursday, 14 October 2010
I love eBay!
Where else can you find a toy that went out of manufacture three years ago, that your autistic child so desperately wants?!
I must put my hand up and admit I was once a high volume seller on there and built a big online business purely from selling on the site. I still have the account, but sadly I have no time these days to spend listing, dealing with customers and their (sometimes odd, sometimes down right rude) messages, the Post Office queues (yes it was probably me who held you up in the queue one day, sending my 101 parcels I had sold over the weekend!), and the rip off (in my opinion) that is the seller listing fees,the seller selling fees, the PayPal fees and the expectation that I should gold leaf wrap each parcel and hand deliver to certain customers within the hour of them pressing 'Buy it Now'. Can you tell my few years of doing this that I got a little jaded by it?!
But I am digressing.
J develops passions for various characters from TV.
Most of these however are from a few years ago -
*Bear in the Big Blue House
*Fimbles
*Story Makers
*Higgledy House
*Balamory
*Teletubbies
Apart from Teletubbies and Fimbles, the others are not readily available to buy from the highstreet anymore. But why should I pay the vastly inflated highstreet prices for these goods when I can get them in near perfect condition, second hand and at a fraction of the price from eBay?
So I trawl through eBay for second (or third or fourth) hand items that are related to his passions.
DVDs, cuddly toys (preferably that make noises) and books (hardback to avoid him ripping the pages) are all gratefully bidded on.
His bedroom is awash with all things Fimbles at the moment.
He is just mad on it.
And because it is'nt actually costing me a fortune he has rather a lot of the stuff!
I just imagine in the future, when he is a grown man, that he will still have all these child orientated items and love them just as much as he does now. And why should'nt he? He is so happy when surrounded by them, I want him to be a happy adult too - even when he still has a Tinky Winky propped up on his pillow!
I must put my hand up and admit I was once a high volume seller on there and built a big online business purely from selling on the site. I still have the account, but sadly I have no time these days to spend listing, dealing with customers and their (sometimes odd, sometimes down right rude) messages, the Post Office queues (yes it was probably me who held you up in the queue one day, sending my 101 parcels I had sold over the weekend!), and the rip off (in my opinion) that is the seller listing fees,the seller selling fees, the PayPal fees and the expectation that I should gold leaf wrap each parcel and hand deliver to certain customers within the hour of them pressing 'Buy it Now'. Can you tell my few years of doing this that I got a little jaded by it?!
But I am digressing.
J develops passions for various characters from TV.
Most of these however are from a few years ago -
*Bear in the Big Blue House
*Fimbles
*Story Makers
*Higgledy House
*Balamory
*Teletubbies
Apart from Teletubbies and Fimbles, the others are not readily available to buy from the highstreet anymore. But why should I pay the vastly inflated highstreet prices for these goods when I can get them in near perfect condition, second hand and at a fraction of the price from eBay?
So I trawl through eBay for second (or third or fourth) hand items that are related to his passions.
DVDs, cuddly toys (preferably that make noises) and books (hardback to avoid him ripping the pages) are all gratefully bidded on.
His bedroom is awash with all things Fimbles at the moment.
He is just mad on it.
And because it is'nt actually costing me a fortune he has rather a lot of the stuff!
I just imagine in the future, when he is a grown man, that he will still have all these child orientated items and love them just as much as he does now. And why should'nt he? He is so happy when surrounded by them, I want him to be a happy adult too - even when he still has a Tinky Winky propped up on his pillow!
Sunday, 10 October 2010
Wooden floors and kitchen rolls
Subject warning! Do not read when feeling ill or eating!
Well J has been up to his old trick of vomitting at will.
It could be from over eating or drinking, to coughing and coughing that he can do to induce the stomach to empty.
He quite enjoys it.
The only time he does'nt is when he is actually ill with a stomach virus as then his stomach is aching and contracting and the vomitting is not much fun.
I can always tell when he has a stomach virus rather than just his cough and sick game.
It may be a game to him, but my floors don't get off so lightly.
Thankfully I removed all but the stair and landing carpet in the house, so we have wooden floors every where else.
I came to the decision to remove the carpets through J and his sick.
When we moved to this new house the previous owner had had beautiful cream carpets down.
They stayed beautiful for all of 6 days after we moved in.
What with two labradors who think mud pools and ponds were made for their enjoyment and young children who prefer their crumbs to be ground down into the fibres, the carpets turned a rather sludgy colour and had a mixture of mud paw prints, spilled food and drink and splodges of vomit.
So, up came the carpet, and down went the flooring. Good hard wearing wooden flooring.
It makes for quick and easier cleaning of liquids. It does however show up the amount of fur my two dogs shed come summertime. I swear if I collected the fur up (that I was hoovering up twice a day during the height of the shedding) I could create a new fur coat for a modest sized doggy within a week.
I also spend a fortune on kitchen roll.
I do not like using mops and buckets to clean vomit as it tends to linger and give off that smell forever more. Plus hygenically speaking throw away cloths are better.
I can easily go through a roll a day on cleaning up spillages, food deposits and vomit.
J has some command that when going to vomit it is best (according to mummy telling him to) to go into the bathroom. As yet he has'nt worked out that when I tell him to do it in the toilet that I mean be sick and not sit down and try to wee.
So I spend ages cleaning up the sick from around the toilet bowl and floor.
I hope his new game lasts but a few more goes, if not at all. Wishfull thinking!
Well J has been up to his old trick of vomitting at will.
It could be from over eating or drinking, to coughing and coughing that he can do to induce the stomach to empty.
He quite enjoys it.
The only time he does'nt is when he is actually ill with a stomach virus as then his stomach is aching and contracting and the vomitting is not much fun.
I can always tell when he has a stomach virus rather than just his cough and sick game.
It may be a game to him, but my floors don't get off so lightly.
Thankfully I removed all but the stair and landing carpet in the house, so we have wooden floors every where else.
I came to the decision to remove the carpets through J and his sick.
When we moved to this new house the previous owner had had beautiful cream carpets down.
They stayed beautiful for all of 6 days after we moved in.
What with two labradors who think mud pools and ponds were made for their enjoyment and young children who prefer their crumbs to be ground down into the fibres, the carpets turned a rather sludgy colour and had a mixture of mud paw prints, spilled food and drink and splodges of vomit.
So, up came the carpet, and down went the flooring. Good hard wearing wooden flooring.
It makes for quick and easier cleaning of liquids. It does however show up the amount of fur my two dogs shed come summertime. I swear if I collected the fur up (that I was hoovering up twice a day during the height of the shedding) I could create a new fur coat for a modest sized doggy within a week.
I also spend a fortune on kitchen roll.
I do not like using mops and buckets to clean vomit as it tends to linger and give off that smell forever more. Plus hygenically speaking throw away cloths are better.
I can easily go through a roll a day on cleaning up spillages, food deposits and vomit.
J has some command that when going to vomit it is best (according to mummy telling him to) to go into the bathroom. As yet he has'nt worked out that when I tell him to do it in the toilet that I mean be sick and not sit down and try to wee.
So I spend ages cleaning up the sick from around the toilet bowl and floor.
I hope his new game lasts but a few more goes, if not at all. Wishfull thinking!
Monday, 4 October 2010
So 9 years ago
This day nine years ago I discovered I was pregnant with J.
It was my first ever pregnancy and my first ever positive test.
I can still remember where I was, what time and my reaction to seeing a blue cross appear instead of just a line (how Clearblue used to work back then!).
In the evening, after doing two more tests, I popped them into an envelope, which I then popped into an oven dish. The oven dish went into the (not turned on) oven.
When hubby came home I told him that I had been busy cooking and that he needed to see the bun in the oven I had made. He looked into the oven, quizzically looked at the envelope, looked a little perturbed at what this was all about, opened the envelope and a huge grin appeared on his face!
Such happy memories.
I was ecstatic.
Fast forward nine years and I have three children now.
Each and every child was planned for and wanted (including my beautiful Angel Baby - C).
If I had the opportunity to go back in time and change the dates of conception so that J would not be here, and thus autism would not be in our life, I would not.
J is and always has been meant for me and I for him.
He was chosen as my child so that I could learn about life other than through EastEnders or Coronation Street. He is a gift from God and one that even when times are hard and I am stressed, I never ever wish was not here.
I believe J was given to me as I am a very forthright person. I have learned to not be afraid to speak up and to educate those with little or no knowledge of autism and learning difficulties.
I can see the good in even the most bad of times and I can laugh when a lot of others would be crying. I can look at J and see a child who is locked inside his own head. It is my duty to help ease his traumas and to let him live a happy and safe life.
I can see positives in J and do not think he is an anchor pulling me down in a stormy sea of unknown.
I can spot a person with autism a mile away. They always bring such a huge smile to my face, and by that I mean in a positive way, not because I am laughing at them.
I just naturally gravitate towards them and them to me.
I can look back upon my childhood and teenage years and can remember a few occasions meeting high functioning and low functioning autists, even though back then I did not know that was what they had.
I found myself befriending them and treating them as a person and not an affliction.
In my future I will be trying my hardest to still fight for every autist and their rights and make sure my son has an amazing life.
So I believe God looked down and saw me at ease and total normality around autism and chose me to have my very own autist. J is very lucky to have me (!) and I him.
It was my first ever pregnancy and my first ever positive test.
I can still remember where I was, what time and my reaction to seeing a blue cross appear instead of just a line (how Clearblue used to work back then!).
In the evening, after doing two more tests, I popped them into an envelope, which I then popped into an oven dish. The oven dish went into the (not turned on) oven.
When hubby came home I told him that I had been busy cooking and that he needed to see the bun in the oven I had made. He looked into the oven, quizzically looked at the envelope, looked a little perturbed at what this was all about, opened the envelope and a huge grin appeared on his face!
Such happy memories.
I was ecstatic.
Fast forward nine years and I have three children now.
Each and every child was planned for and wanted (including my beautiful Angel Baby - C).
If I had the opportunity to go back in time and change the dates of conception so that J would not be here, and thus autism would not be in our life, I would not.
J is and always has been meant for me and I for him.
He was chosen as my child so that I could learn about life other than through EastEnders or Coronation Street. He is a gift from God and one that even when times are hard and I am stressed, I never ever wish was not here.
I believe J was given to me as I am a very forthright person. I have learned to not be afraid to speak up and to educate those with little or no knowledge of autism and learning difficulties.
I can see the good in even the most bad of times and I can laugh when a lot of others would be crying. I can look at J and see a child who is locked inside his own head. It is my duty to help ease his traumas and to let him live a happy and safe life.
I can see positives in J and do not think he is an anchor pulling me down in a stormy sea of unknown.
I can spot a person with autism a mile away. They always bring such a huge smile to my face, and by that I mean in a positive way, not because I am laughing at them.
I just naturally gravitate towards them and them to me.
I can look back upon my childhood and teenage years and can remember a few occasions meeting high functioning and low functioning autists, even though back then I did not know that was what they had.
I found myself befriending them and treating them as a person and not an affliction.
In my future I will be trying my hardest to still fight for every autist and their rights and make sure my son has an amazing life.
So I believe God looked down and saw me at ease and total normality around autism and chose me to have my very own autist. J is very lucky to have me (!) and I him.
Saturday, 2 October 2010
Special mothers
This is a piece I came across thanks to a friend on Facebook who posted a link.....
Some Mothers Chosen By God
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year, nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how mothers of handicapped children are chosen?
Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation.
As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth, son. Patron saint, Matthew.
"Forrest, Marjorie, daughter. Patron saint, Cecelia.
"Rudledge, Carrie, twins. Patron saint… give her Gerard, He's used to profanity."
Finally, He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child who is less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary."
"When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or sunset to her blind child, she will see it as few people ever see my creations."
"I will permit her to see clearly the things I see… ignorance, cruelty, prejudice… and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint" asks the angel, his pen poised in mid-air.
God smiles. "A mirror will suffice."
Written by Erma Bombeck
Some Mothers Chosen By God
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year, nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how mothers of handicapped children are chosen?
Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation.
As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth, son. Patron saint, Matthew.
"Forrest, Marjorie, daughter. Patron saint, Cecelia.
"Rudledge, Carrie, twins. Patron saint… give her Gerard, He's used to profanity."
Finally, He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child who is less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary."
"When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or sunset to her blind child, she will see it as few people ever see my creations."
"I will permit her to see clearly the things I see… ignorance, cruelty, prejudice… and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint" asks the angel, his pen poised in mid-air.
God smiles. "A mirror will suffice."
Written by Erma Bombeck
Monday, 20 September 2010
Behaviour responsibility
As a parent of a child with learning difficulties and autism I am very aware of being out in social situations, both familiar and new to J.
Aware that his behaviours could either cause offence by -
- hand down the trousers/pants
- picking nose and putting fingers in mouth
- burping without trying to stiffle it
- walking/standing too close to someone
- suddenly yelling out random phrases or noises ( a favourite phrase that he yells out is "brush your teeth")
I am always trying to contain him and minimise the shock value for strangers.
Although having a child yell "brush your teeth" in your vacinity is more than a little embarrassing for all concerned, apart from the instigator!
Now, one issue I am always keeping an eye on is him becoming physical. Perhaps with him waving his arms around without care, or perhaps being pushy.
I am lucky that so far he has not exhibited these behaviours in public very much, but that does not mean I am being complacent as I know it can start without warning.
But how do you deal with another child, who also has learning difficulties, who is being quite physical towards you or your child?
For the most, the other parent/carer is on the ball and is quick to remove said child from the situation, offer an apology, and the situation is dealt and over with.
For the child who has a parent offering apologies you can offer sympathy and a knowing nod, not a tut and complaint as some people who are not converse with special needs will do.
But, what to do when a child with learning difficulties is overly aggressive and bordering on violent, but the parent/carer is non-plussed and not prepared to either stop the child or offer any kind of apology.
Instead the parent observes their child hit or kick your child, but just chooses to ignore it, your child and yourself.
This indeed happened to myself and all three of my children.
We were at an activity designed for children with learning difficulties and it was just us and this other child and her mother.
The child was around 6 years old and I could see her level of impairment was on a par with J's.
Firstly O my 4 year old was walloped on his arm by her and had a door slammed in his face. He was upset and hurt (with a red mark on his arm).
The mother just chose to look the other way.
Ten minutes later, her daughter approached the pram, with 6 month old W asleep in it, and lying down facing me, and kicked the back of the pram forcing W to fly forward, wake up and cry. Again the other mother looked at what had occured, but chose to not bother to say anything to either me or her daughter.
Finally, the girl attacked J. She kicked him hard in his shin and pushed him into a wall. An assistant in the activity had to intervene and remove the girl by the arm and take her to the mother, who was observing the event.
Both I and the assistant were silently shocked that yet again no offer of apology or taking charge of her daughter was received.
I do not think it is acceptable that any child should be allowed to be violent and aggresive. A parent / carer has the responsibilty to ensure safety for others. We all know that incidents can occur, but ignoring it and allowing it to continue without apology is something I cannot agree with.
I try to teach my children about respect and responsibility, and even J is expected, by me, to behave with no malice or hurt towards anyone else.
Yes, he has no understanding or compassion for any human being, but that does not give him the licence to go around being abusive. That is down to me to ensure he complies with due respect.
It was a very upsetting experience that was made so by a parent who had no care that my children were being hurt by her child. It appeared to me she almost had a smirk on her face. She was not embarrassed or nervous which might explain her inability to speak up. She just sat there, smirk on face, and let her daughter run amok and cause distress.
Wednesday, 8 September 2010
How much?!
Okay, so the big boffins have come up with a monetary figure that they say is a relative amount of cash we will spend on our children until they reach 18. That amount is £200,000 according to the Guardian newspaper.
£200,000 maybe on the average child. But how much more on the special needs child?
And I am not talking just about specialist equipment (which I am always being told is available via the Occupational Therapist, but as we are still on the waiting list to actually have a first meeting with one it is easier, but not cheaper, to buy the stuff yourself), rather I am talking about the replacement items of everyday household use, the re-decorating, the food (such as the very expensive Gluten Free items - cost twice as much, why?!)the accidents that need cleaning etcetera.
I have had to replace lamps, rugs, carpets, bath towels, windows, doors, televisions (he smashed the flatscreen with his fist and it split and went green), oven doors and washing machine doors (he stood on both to reach a higher level in the kitchen and they snapped off and needed replacing), repaint over ink drawings, repaint a whole room and on and on.
Once, we had just repainted the lounge in a boring but easy cream colour. To our stupidity we did not take the paint pots to the shed and lock them away, we put them in a cupboard. J found the paint pots one very early morning and proceeded to repaint our extension/brick built conservatory. The colour obviously did not appeal to him in there and so he opened the tin of Dulux, poured it onto the hardwood floor, and stepped into the cold and gloopy mixture.
He then made footprints all over the downstairs floor. He spread the paint over to the cupboards and created a marbling type effect, he then thought that the patio double glazed double doors needed to stop letting light in and so painted them to cover up the whole panes of glass.
This was all done 2 days before we were due to have a house warming party (well 9 months late!), and I was 12 weeks pregnant with W.
We spent the whole day with turps and wipes, bin bags and fumes.
We had to remove the cupboard doors and repaint them.
We turped and scraped the windows.
I was not allowed near the turps as I was pregnant, and so when I say 'we' I actually mean 'he', the hubby. He spent ages and ages trying to make it look half decent again. With my verbal direction (sarcasm intended) he did a good job.
J can easily waste a whole loo roll in one go - by tearing it up and chewing bits and putting the rest in the bath, sink or toilet.
He rips and tears photographs.
He breaks photo frames and ornaments.
He chews towels and makes them threadbare.
He has urinated on carpets that then needed to be deepcleaned.
He has over flowed water and caused ceilings to drip and bulge.
I could go on and on (and on).
I know there will be some do-gooders out there who will suggest that we could have done X or Y. That we should have made sure he did'nt have access to X or Y.
But really, take a minute. If you have children yourself, are you telling me that every minute of every day you are watching your child? And by child I mean over 5 years of age, not a baby or toddler.
When J is on a mission he is on a mission.
He clocks where things have been put but makes no clue to this.
It is fact. Children that have learning difficulties cost more. Financially, emotionally, socially, spiritually, morally and physically.
But boy they do make great stories to tell!
£200,000 maybe on the average child. But how much more on the special needs child?
And I am not talking just about specialist equipment (which I am always being told is available via the Occupational Therapist, but as we are still on the waiting list to actually have a first meeting with one it is easier, but not cheaper, to buy the stuff yourself), rather I am talking about the replacement items of everyday household use, the re-decorating, the food (such as the very expensive Gluten Free items - cost twice as much, why?!)the accidents that need cleaning etcetera.
I have had to replace lamps, rugs, carpets, bath towels, windows, doors, televisions (he smashed the flatscreen with his fist and it split and went green), oven doors and washing machine doors (he stood on both to reach a higher level in the kitchen and they snapped off and needed replacing), repaint over ink drawings, repaint a whole room and on and on.
Once, we had just repainted the lounge in a boring but easy cream colour. To our stupidity we did not take the paint pots to the shed and lock them away, we put them in a cupboard. J found the paint pots one very early morning and proceeded to repaint our extension/brick built conservatory. The colour obviously did not appeal to him in there and so he opened the tin of Dulux, poured it onto the hardwood floor, and stepped into the cold and gloopy mixture.
He then made footprints all over the downstairs floor. He spread the paint over to the cupboards and created a marbling type effect, he then thought that the patio double glazed double doors needed to stop letting light in and so painted them to cover up the whole panes of glass.
This was all done 2 days before we were due to have a house warming party (well 9 months late!), and I was 12 weeks pregnant with W.
We spent the whole day with turps and wipes, bin bags and fumes.
We had to remove the cupboard doors and repaint them.
We turped and scraped the windows.
I was not allowed near the turps as I was pregnant, and so when I say 'we' I actually mean 'he', the hubby. He spent ages and ages trying to make it look half decent again. With my verbal direction (sarcasm intended) he did a good job.
J can easily waste a whole loo roll in one go - by tearing it up and chewing bits and putting the rest in the bath, sink or toilet.
He rips and tears photographs.
He breaks photo frames and ornaments.
He chews towels and makes them threadbare.
He has urinated on carpets that then needed to be deepcleaned.
He has over flowed water and caused ceilings to drip and bulge.
I could go on and on (and on).
I know there will be some do-gooders out there who will suggest that we could have done X or Y. That we should have made sure he did'nt have access to X or Y.
But really, take a minute. If you have children yourself, are you telling me that every minute of every day you are watching your child? And by child I mean over 5 years of age, not a baby or toddler.
When J is on a mission he is on a mission.
He clocks where things have been put but makes no clue to this.
It is fact. Children that have learning difficulties cost more. Financially, emotionally, socially, spiritually, morally and physically.
But boy they do make great stories to tell!
Monday, 6 September 2010
The beauty of autism
Have a look at a child or adult with autism. Do you see bitterness? Do you see regret? Do you see jealousy, hate, greed, spite, or egotism?
No.
The face that looks back is one of innocence. One untouched by the world and its cynicism.
A portrait of pureness which cries out to be protected and loved.
When you hold a sleeping baby in your arms and you gaze at their little rosebud mouth, delicate eyelashes brushing over their smooth skin, the fine downy hair and the smell of newness which emanates from their every breath, you wish that they never lose their beauty to the knowledge of life.
I know anyone can experience pain and upset, but this does not turn into a bitterness and hate.
Higher functioning autists may be aware of their disability and find it frustrating and isolating but the fact remains that they retain a quality, an almost essence of starlight that gazes from their eyes.
When I watch J sitting, looking into space, no hand flapping, no twitching, no manic laughing, I see his perfect features and beauty and feel blessed to have him educating me and the world that life is not just about the latest celebrity spotting in Heat magazine or the must have gadget of the month, it is about being human and discovering ourselves and what life is really all about.
No.
The face that looks back is one of innocence. One untouched by the world and its cynicism.
A portrait of pureness which cries out to be protected and loved.
When you hold a sleeping baby in your arms and you gaze at their little rosebud mouth, delicate eyelashes brushing over their smooth skin, the fine downy hair and the smell of newness which emanates from their every breath, you wish that they never lose their beauty to the knowledge of life.
I know anyone can experience pain and upset, but this does not turn into a bitterness and hate.
Higher functioning autists may be aware of their disability and find it frustrating and isolating but the fact remains that they retain a quality, an almost essence of starlight that gazes from their eyes.
When I watch J sitting, looking into space, no hand flapping, no twitching, no manic laughing, I see his perfect features and beauty and feel blessed to have him educating me and the world that life is not just about the latest celebrity spotting in Heat magazine or the must have gadget of the month, it is about being human and discovering ourselves and what life is really all about.
Sunday, 5 September 2010
More than ASD
It seems that as we have a diagnosis of autism we should now slink away, happy we have labelled our child, and not search out anything further that he may have.
I am aware that even getting a diagnosis of autism is a step more than a lot of parents out there get, who are left waiting around, being held up by red tape, all the while their child struggles at the main stream school with little or no extra support from a LSA and no help and guidance from any figure of support and guidance.
I have wondered for a while as to whether J has ADHD.
Could he just have an over active autism trait that makes him scream and scream, run around like he has taken some magic yellow hyper pills, then laugh maniacally and then repeat several times an hour?
I have learnt that a lot of auty children have poor sleep patterns and disturbed nights, but every night? Sleep finally around 11pm and then awake at 1pm, restless, back to sleep until around 4am and then up for the day. Does he keep quiet and play in his room at this hour of the night/morning? Heck no!
He runs back and forth along the landing, open his bedroom door, slam said door, run along (or rather thump along as he is very heavy footed) go into family bathroom, slam that door, run taps, fill up the sink/ any recepticle that can retain liquid, smash and bash objects into the filled up sink, laugh out loud, squeal, make "ooga ooga" noises, open bathroom door, thud along landing, open bedroom door, slam bedroom door, bounce on bed, scream, laugh, yell out various phrases from the Fimbles or Bear, laugh some more and then repeat all of the above for the next 3 hours, waking everybody up.
But does he have sleep issues? Not according to the paediatrician.
When I went to see my GP I mentioned I'd like to have an appointment with the local paediatician to discuss the possibility of ADHD. I was told that there is nothing more that can be done, J has his ASD diagnosis and that is all that is needed.
So I continue to wonder and self diagnose and cope with the behaviours.
Is'nt that what all us mums of special needs children do?
Then I wonder if getting someone to agree with me and confirm their opinion he does also have ADHD will be of any benefit. It won't change anything. It won't suddenly mean we move up waiting lists for appointments with clinics and specialists, it just means he has another label.
I am aware that even getting a diagnosis of autism is a step more than a lot of parents out there get, who are left waiting around, being held up by red tape, all the while their child struggles at the main stream school with little or no extra support from a LSA and no help and guidance from any figure of support and guidance.
I have wondered for a while as to whether J has ADHD.
Could he just have an over active autism trait that makes him scream and scream, run around like he has taken some magic yellow hyper pills, then laugh maniacally and then repeat several times an hour?
I have learnt that a lot of auty children have poor sleep patterns and disturbed nights, but every night? Sleep finally around 11pm and then awake at 1pm, restless, back to sleep until around 4am and then up for the day. Does he keep quiet and play in his room at this hour of the night/morning? Heck no!
He runs back and forth along the landing, open his bedroom door, slam said door, run along (or rather thump along as he is very heavy footed) go into family bathroom, slam that door, run taps, fill up the sink/ any recepticle that can retain liquid, smash and bash objects into the filled up sink, laugh out loud, squeal, make "ooga ooga" noises, open bathroom door, thud along landing, open bedroom door, slam bedroom door, bounce on bed, scream, laugh, yell out various phrases from the Fimbles or Bear, laugh some more and then repeat all of the above for the next 3 hours, waking everybody up.
But does he have sleep issues? Not according to the paediatrician.
When I went to see my GP I mentioned I'd like to have an appointment with the local paediatician to discuss the possibility of ADHD. I was told that there is nothing more that can be done, J has his ASD diagnosis and that is all that is needed.
So I continue to wonder and self diagnose and cope with the behaviours.
Is'nt that what all us mums of special needs children do?
Then I wonder if getting someone to agree with me and confirm their opinion he does also have ADHD will be of any benefit. It won't change anything. It won't suddenly mean we move up waiting lists for appointments with clinics and specialists, it just means he has another label.
Thursday, 2 September 2010
Creativity
J is very creative.
He can make a picture from a variety of substances, some made for drawing, some not.
Apart from the usual pen and pencil drawings on paper (and painted walls) he is almost, to the point, fanatical about his magnetic drawer. In total we have three of these drawers in the house, and I replace them every year, as they become quite worn on their main face and can also become lumpy underneath where the eraser bar has to move.
Even though these drawers are the same make and colour, he knows which one is his favourite. He will seek it out if I dare to swap them round, and will ask "drawone drawone" until he either finds it or I produce it (please don't think I hide it for fun, it is usually when I am cleaning his room that it goes into a tidy area)
Liquids such as shampoo and shower gel also get the J artist treatment. He will finger swirl them around on the television screen, mirrors, walls, and against shiny surfaces such as the oven heat protector door.
He will take his cup of milk to the garden, proceed to throw it onto the patio the milk not the cup) and then walk through it making dragging patterns and foot prints.
One day I would love to take him to an artist studio where he can have access to a large floor piece of canvas and a mix of paints and art textures. I am sure he would be in his element with the mixing, wiping, spreading, pouring and splattering of the paints against the fabric.
He was even creative with his own body fluids - blood. When he was going through his worst phase of head banging so far, he made his forehead open into a wound, and when it had scabbed up overnight he would then bang his head against the wall until it opened up again, and then press his wound against the walls, making patterns.
I could talk about his other body productions and the uses he has found for them, but I think you get the gist and can draw your own imaginative conclusions from it.
Suffice to say, and to reassure, I never allow him to continue with these creative products, and everything is cleaned and sanitised.
J may not have the artistic skills of some reverred autistic people, who recreate intricate architect type drawings of buildings, but to see him absorbed and happy when he is at his art work, I think he has his own unique talent, and it is one I love to display (minus the blood and other ones).
He can make a picture from a variety of substances, some made for drawing, some not.
Apart from the usual pen and pencil drawings on paper (and painted walls) he is almost, to the point, fanatical about his magnetic drawer. In total we have three of these drawers in the house, and I replace them every year, as they become quite worn on their main face and can also become lumpy underneath where the eraser bar has to move.
Even though these drawers are the same make and colour, he knows which one is his favourite. He will seek it out if I dare to swap them round, and will ask "drawone drawone" until he either finds it or I produce it (please don't think I hide it for fun, it is usually when I am cleaning his room that it goes into a tidy area)
Liquids such as shampoo and shower gel also get the J artist treatment. He will finger swirl them around on the television screen, mirrors, walls, and against shiny surfaces such as the oven heat protector door.
He will take his cup of milk to the garden, proceed to throw it onto the patio the milk not the cup) and then walk through it making dragging patterns and foot prints.
One day I would love to take him to an artist studio where he can have access to a large floor piece of canvas and a mix of paints and art textures. I am sure he would be in his element with the mixing, wiping, spreading, pouring and splattering of the paints against the fabric.
He was even creative with his own body fluids - blood. When he was going through his worst phase of head banging so far, he made his forehead open into a wound, and when it had scabbed up overnight he would then bang his head against the wall until it opened up again, and then press his wound against the walls, making patterns.
I could talk about his other body productions and the uses he has found for them, but I think you get the gist and can draw your own imaginative conclusions from it.
Suffice to say, and to reassure, I never allow him to continue with these creative products, and everything is cleaned and sanitised.
J may not have the artistic skills of some reverred autistic people, who recreate intricate architect type drawings of buildings, but to see him absorbed and happy when he is at his art work, I think he has his own unique talent, and it is one I love to display (minus the blood and other ones).
Monday, 23 August 2010
Little jobs
Even though J has little awareness and understanding, I have recently started to encourage him to do little jobs round the house for me.
Very basic things, but they are helpful to me and it also shows his middle brother O that helping is expected within a family.
For example I will ask him to put his clothes away in the blue basket. This is my laundry basket. He always puts his clothes and socks in here when he changes. I ask him to bring the whole basket down to me as well so I can put the washing on in the machine.
Another job is closing the upstairs doors shut when we all go out. This is because the dogs are little monkeys and will go into the bedrooms or upstairs bathroom and ransack it in anyway they can.
He gets me plates and cups out when I am making dinner and he collects them up to put in the dishwasher when he's finished.
I find this also gives us positive interaction together, with praise and reward giving him a confidence boost.
Very basic things, but they are helpful to me and it also shows his middle brother O that helping is expected within a family.
For example I will ask him to put his clothes away in the blue basket. This is my laundry basket. He always puts his clothes and socks in here when he changes. I ask him to bring the whole basket down to me as well so I can put the washing on in the machine.
Another job is closing the upstairs doors shut when we all go out. This is because the dogs are little monkeys and will go into the bedrooms or upstairs bathroom and ransack it in anyway they can.
He gets me plates and cups out when I am making dinner and he collects them up to put in the dishwasher when he's finished.
I find this also gives us positive interaction together, with praise and reward giving him a confidence boost.
Saturday, 21 August 2010
Acceptance of your child who has special needs usually takes time.
A few day,months or even years to finally reach the point where you stop thinking you can change them with wishes and prayers, if onlys, and even denial.
I think for J it took me a few months. This was after the official diagnosis, not the hurried one given after a very brief first meeting.
I did have a lot of the 'if onlys' and wasted my emotions on winding myself up over lots of issues that I felt I should have stopped happening (as mentioned in the post about the birth).
I can honestly say that for a long time now I have not had any thoughts of trying to turn back time, think how I could have done it differently, or torturing myself with guilt.
I even look ahead to how J may be as an old man - shuffling along, walking stick as an aid, the odd bit of hand flapping, random shouting out of "cola chips", trying to steal someones beer from their table, and watching Bear in the Big Blue House on DVD (or whatever they have invented then).
With W, J's youngest brother, I have been able to deal and accept his disability a lot easier and quicker.
My only issue really has been as to why we have been chosen to have another child with a disability, and one that is not related to J's condition.
I am sure some will assume it must be something I did or took during pregnancy. But I was tee-total (even though you are allowed small amounts), never smoked, took the pregnancy vitamin and mineral tablets, never touched drugs (legal or illegal, apart from paracetamol which is allowed) and didn't have x rays or any procedures like that.
Because of J, I am set up, prepared and ready to fight for W's rights to make his life amazing, enriched, fulfilling, and never second best.
With W's disability there is so much still to learn and as there is no cure, just like J's autism, the future could bring about amazing new discoveries which could make the symptoms far less, or even bring about a cure.
For W a cure would mean his eyes would stop moving uncontrollably and his sight would become clear and more far reaching.
For J it would mean a whole new world opening up for him.
Quite how J and other autistic people would deal with being cured I do not know. A scene from the Robin Williams film Awakenings always makes me cry. The bit where the drug he has discovered brings the awake but comatose patients out of their silence and into the regular world.
Would J suddenly chat away to me, telling me of what it was like for him to be locked in his own little world? Would he be freaked out by the new sensations and experiences of emotions?
All I do know is this - scientists are always trying to solve illnesses and disabilities, and one day they will either find a cure or a way to prevent it.
For now I am happy to accept J for what and who he is. Yes he is hard work. Yes it is frustrating trying to navigate the endless dead ends and obstacles put up by local authorities. Yes I do worry for his future.
But, I do not wish his life away hoping on a cure.
A few day,months or even years to finally reach the point where you stop thinking you can change them with wishes and prayers, if onlys, and even denial.
I think for J it took me a few months. This was after the official diagnosis, not the hurried one given after a very brief first meeting.
I did have a lot of the 'if onlys' and wasted my emotions on winding myself up over lots of issues that I felt I should have stopped happening (as mentioned in the post about the birth).
I can honestly say that for a long time now I have not had any thoughts of trying to turn back time, think how I could have done it differently, or torturing myself with guilt.
I even look ahead to how J may be as an old man - shuffling along, walking stick as an aid, the odd bit of hand flapping, random shouting out of "cola chips", trying to steal someones beer from their table, and watching Bear in the Big Blue House on DVD (or whatever they have invented then).
With W, J's youngest brother, I have been able to deal and accept his disability a lot easier and quicker.
My only issue really has been as to why we have been chosen to have another child with a disability, and one that is not related to J's condition.
I am sure some will assume it must be something I did or took during pregnancy. But I was tee-total (even though you are allowed small amounts), never smoked, took the pregnancy vitamin and mineral tablets, never touched drugs (legal or illegal, apart from paracetamol which is allowed) and didn't have x rays or any procedures like that.
Because of J, I am set up, prepared and ready to fight for W's rights to make his life amazing, enriched, fulfilling, and never second best.
With W's disability there is so much still to learn and as there is no cure, just like J's autism, the future could bring about amazing new discoveries which could make the symptoms far less, or even bring about a cure.
For W a cure would mean his eyes would stop moving uncontrollably and his sight would become clear and more far reaching.
For J it would mean a whole new world opening up for him.
Quite how J and other autistic people would deal with being cured I do not know. A scene from the Robin Williams film Awakenings always makes me cry. The bit where the drug he has discovered brings the awake but comatose patients out of their silence and into the regular world.
Would J suddenly chat away to me, telling me of what it was like for him to be locked in his own little world? Would he be freaked out by the new sensations and experiences of emotions?
All I do know is this - scientists are always trying to solve illnesses and disabilities, and one day they will either find a cure or a way to prevent it.
For now I am happy to accept J for what and who he is. Yes he is hard work. Yes it is frustrating trying to navigate the endless dead ends and obstacles put up by local authorities. Yes I do worry for his future.
But, I do not wish his life away hoping on a cure.
Saturday, 14 August 2010
My life
I never thought my life would be like this.
I always wanted children. A husband. A big house (not too big as I hate housework). A dog or two. Nothing too Stepford mind, just a fairy tale of dreams.
I wanted to be the traditional stay at home mum who cooks healthy, nutritional meals, has not one speck of dust or dirt on any surface, wears pretty, feminine clothes, has glossy shiny hair and eyes that sparkle with pride at the array of drawings adorning my fridge and kitchen walls.
Out of that dream I have managed to achieve one of them. The rest have fallen by the wayside, along with my beauty sleep, my patience, my svelte size 10 frame, and my dreams of having my child grow up to become independent and creating his own family.
What do I see when I look in the mirror? Well as I only look fleetingly as I cannot stand what looks back at me, I assess I am washed out, tired, stressed, lined, and in need of a few more months (make that years) of salad.
Can I blame my situation though? Is it too easy for me to shrug and say it is because of my child's special needs that I am like this?
Yes it is.
I used to be vibrant and exciting. I tend to get excited nowadays when I see a double bill of Gavin and Stacey is on G.O.L.D.
However, whatever I feel like or look like, I always know that my children love me just the way I am. They don't judge or tell me to be a better mum. They love me and my big cuddles, silly voices, and never ending support and encouragement.
J never judges. Unlike 'normal' children he will not grow up and become cynical of the world, or develop hatred and dislike of those different to him.
He will always live in his bubble. His bubble is a safe world to him.
He will have innocence and pure honesty, and his desires will be simple.
I just have to hope I can still be the forthright mum he needs me to be in years to come. I think I can pretty much guarantee my middle son O will step into my shoes if needs be, if his noisy, shouty, go get em attitude at the age of 4 years is anything to go by!
.........................................................................................
Just something I came up with just now, probably rubbish, but hey ho!
Is this it?
Is this my life?
Day in day out,
Yet more strife.
Just another mum,
Another room to clean,
Being the biggest presence in the house,
But never being seen
How far have I come
In living the dream
The childhood fantasy
That ran out of steam
If I sit here wishing
For days gone by
Will I miss the ones coming
Because I didn’t try
To see what is here
Is more than some get
That my life is not stone
It is not set
Time may slip by
In whispers of sand
But this is my life
That I hold in my hand
To cherish that bond
The one between child
The one that a mother
Can never hide
Be still my thoughts
Of a life that is not this
Because all that I have
I really would miss
I always wanted children. A husband. A big house (not too big as I hate housework). A dog or two. Nothing too Stepford mind, just a fairy tale of dreams.
I wanted to be the traditional stay at home mum who cooks healthy, nutritional meals, has not one speck of dust or dirt on any surface, wears pretty, feminine clothes, has glossy shiny hair and eyes that sparkle with pride at the array of drawings adorning my fridge and kitchen walls.
Out of that dream I have managed to achieve one of them. The rest have fallen by the wayside, along with my beauty sleep, my patience, my svelte size 10 frame, and my dreams of having my child grow up to become independent and creating his own family.
What do I see when I look in the mirror? Well as I only look fleetingly as I cannot stand what looks back at me, I assess I am washed out, tired, stressed, lined, and in need of a few more months (make that years) of salad.
Can I blame my situation though? Is it too easy for me to shrug and say it is because of my child's special needs that I am like this?
Yes it is.
I used to be vibrant and exciting. I tend to get excited nowadays when I see a double bill of Gavin and Stacey is on G.O.L.D.
However, whatever I feel like or look like, I always know that my children love me just the way I am. They don't judge or tell me to be a better mum. They love me and my big cuddles, silly voices, and never ending support and encouragement.
J never judges. Unlike 'normal' children he will not grow up and become cynical of the world, or develop hatred and dislike of those different to him.
He will always live in his bubble. His bubble is a safe world to him.
He will have innocence and pure honesty, and his desires will be simple.
I just have to hope I can still be the forthright mum he needs me to be in years to come. I think I can pretty much guarantee my middle son O will step into my shoes if needs be, if his noisy, shouty, go get em attitude at the age of 4 years is anything to go by!
.........................................................................................
Just something I came up with just now, probably rubbish, but hey ho!
Is this it?
Is this my life?
Day in day out,
Yet more strife.
Just another mum,
Another room to clean,
Being the biggest presence in the house,
But never being seen
How far have I come
In living the dream
The childhood fantasy
That ran out of steam
If I sit here wishing
For days gone by
Will I miss the ones coming
Because I didn’t try
To see what is here
Is more than some get
That my life is not stone
It is not set
Time may slip by
In whispers of sand
But this is my life
That I hold in my hand
To cherish that bond
The one between child
The one that a mother
Can never hide
Be still my thoughts
Of a life that is not this
Because all that I have
I really would miss
Monday, 9 August 2010
Six years ago
On the 11th August 2004 it was noted by the health visitor at J's two year check that I was worried about his speech and language and his hearing.
I have just found his book with all his development and charts in and there was her entry asking for a referral to the specialists.
It seems so long ago in one respect and not that long ago in another, if you can understand that?
It makes me sad to think back to those times. Times when we thought it wasn't that serious and that with a little intervention it would all right itself.
I can remember attending our very first speech therapy session.
It took place in a large surgery and I lined up with several other parents outside a room.
Inside the room our children had to sit around an oblong table, on child seats, whilst the adults sat around them.
From the off, J did not want to sit still. He tried to go under the table and disappear.
The therapist went round each child asking them to copy her mouth shape and pronunciation of a word.
This was lost on J.
She asked me to keep him under control so I sat him on my lap.
He could not have cared less about her and her mouth shape. He wasn't looking at her and wanted to escape and hide.
The other children nearly all complied with her request however.
It only now seems a typical trait of autism and learning difficulties that J could not understand her request and was not being naughty in ignoring her, but just couldn't comply as it was beyond his comprehension.
To be honest, I never really thought he would gain much from some woman creating a fish impression with her lips and over pronouncing "baaaaalllllloooooonnn".
His S&L therapy has always been, to this day, very hit and miss. I no longer take a part of it as it occurs during his school day, but even the S&L therapist through his schooling has given up as I found out, by chance, that she had ended dealings with him.
I was not told of this at the time and only found out via someone else who informed me it had ceased a good six months prior!
A little irony, but perhaps the S&L therapist could have communicated this to me directly!
I have just found his book with all his development and charts in and there was her entry asking for a referral to the specialists.
It seems so long ago in one respect and not that long ago in another, if you can understand that?
It makes me sad to think back to those times. Times when we thought it wasn't that serious and that with a little intervention it would all right itself.
I can remember attending our very first speech therapy session.
It took place in a large surgery and I lined up with several other parents outside a room.
Inside the room our children had to sit around an oblong table, on child seats, whilst the adults sat around them.
From the off, J did not want to sit still. He tried to go under the table and disappear.
The therapist went round each child asking them to copy her mouth shape and pronunciation of a word.
This was lost on J.
She asked me to keep him under control so I sat him on my lap.
He could not have cared less about her and her mouth shape. He wasn't looking at her and wanted to escape and hide.
The other children nearly all complied with her request however.
It only now seems a typical trait of autism and learning difficulties that J could not understand her request and was not being naughty in ignoring her, but just couldn't comply as it was beyond his comprehension.
To be honest, I never really thought he would gain much from some woman creating a fish impression with her lips and over pronouncing "baaaaalllllloooooonnn".
His S&L therapy has always been, to this day, very hit and miss. I no longer take a part of it as it occurs during his school day, but even the S&L therapist through his schooling has given up as I found out, by chance, that she had ended dealings with him.
I was not told of this at the time and only found out via someone else who informed me it had ceased a good six months prior!
A little irony, but perhaps the S&L therapist could have communicated this to me directly!
Saturday, 31 July 2010
Windows
J, as I have said before, loves looking out of windows. He will stand and stare, pressed up against the glass, at the traffic and pedestrians walking by.
Our house is set back from the main road by about 20 metres so the windows are not directly looking down onto the pavement, however as we live nearly opposite from a pond and park/woods there is a lot of foot traffic passing by as well as cars using the road to cut through to the main road.
I am on alert for a naked J dancing about at the window, lights on, so illuminating his antics for all to see. But this is not practical all the time.
I researched some ideas, and hit upon the tinted windows theme, like they use in some cars, to hide the shenanigans going on inside.
So, I searched on eBay and found several being sold, that were described as quick, simple and effective. They sell you the sheets of film in certain sizes and you fix it to the desired window.
I have now received the order through and utilised it.
Effective? Yes. Quick and simple? No.
Plus it is rather ugly from the outside and it looks as if we now have a dark room for a photo lab up in that bedroom.
From inside it has only a slight tint, and is hardly noticeable, which is good, as J would be trying to rip it off if it was very obvious, and of course it doesn't make the actual room darker by very much, so it is still airy and light. J has been touching the odd air bubble still stubbornly sticking around and making it crackle, but as far as peeling or picking at the film, so far he has left alone - fingers crossed he continues to ignore it and accept it.
I am quite happy that J can now jig, wiggle, sway or just stand pressed up against the window, and the outside world will not be any the wiser.
It may not be aesthetically pleasing to the eye, but for peace of mind and feeling safe that J is not offending anyone it is worth it.
And on a positive note, the cost is very very cheap. For a 300cm x 75cm roll of 40% tint, which has covered both windows, and allowed for the mistakes I made, it only cost £6.99 inc postage.
Our house is set back from the main road by about 20 metres so the windows are not directly looking down onto the pavement, however as we live nearly opposite from a pond and park/woods there is a lot of foot traffic passing by as well as cars using the road to cut through to the main road.
I am on alert for a naked J dancing about at the window, lights on, so illuminating his antics for all to see. But this is not practical all the time.
I researched some ideas, and hit upon the tinted windows theme, like they use in some cars, to hide the shenanigans going on inside.
So, I searched on eBay and found several being sold, that were described as quick, simple and effective. They sell you the sheets of film in certain sizes and you fix it to the desired window.
I have now received the order through and utilised it.
Effective? Yes. Quick and simple? No.
Plus it is rather ugly from the outside and it looks as if we now have a dark room for a photo lab up in that bedroom.
From inside it has only a slight tint, and is hardly noticeable, which is good, as J would be trying to rip it off if it was very obvious, and of course it doesn't make the actual room darker by very much, so it is still airy and light. J has been touching the odd air bubble still stubbornly sticking around and making it crackle, but as far as peeling or picking at the film, so far he has left alone - fingers crossed he continues to ignore it and accept it.
I am quite happy that J can now jig, wiggle, sway or just stand pressed up against the window, and the outside world will not be any the wiser.
It may not be aesthetically pleasing to the eye, but for peace of mind and feeling safe that J is not offending anyone it is worth it.
And on a positive note, the cost is very very cheap. For a 300cm x 75cm roll of 40% tint, which has covered both windows, and allowed for the mistakes I made, it only cost £6.99 inc postage.
Friday, 30 July 2010
Summer time (and the living is not easy)
Blimey, who invented summer holidays? Why so long?
It's slightly easier when you have a neurotypical child ( 'normal') and they understand about the breaks from school, but for J it is confusing,frustrating and upsetting ( count me in for the last two).
I am lucky this year that J got into a play scheme for the first two weeks, but thereafter it is the boredom of the house for him, with occasional trips out to parks and the forest.
I have to time trips to the playgrounds quite early in the day so that we avoid the manic rush at around 11am of all other exhausted parents, where it then means J cannot have free reign of the swings.
It may be idealistic, but I think school should not end for a solid 6-7 weeks for special needs children.
J has no thrill of the impending break and excitement of playing every day with friends. He wants to be in the routine and expectation of schooling.
It is similar to when there is non-uniform day.
J would flip if I were to send him in without his uniform. He equates school uniform with school. Pyjamas or normal dress is odd and freaky to him.
I struggled the first day with his play scheme as he went to his school (where it is being held) and was quite upset. It was recorded in his book that he only calmed down with the flapping after lunch. Luckily he now accepts he is going into school, in regular clothes, but it is a play scheme and not school. But this will end in a weeks time, and he will be anxious as to why he is not going anywhere like that again.
There may be more help available such as carers hired through organisations, but these are sporadic ( 90 minutes per week, but can be saved up for a big block of time) and the structure and routine of the usual school week is abandoned, causing our children to fall into unwanted behaviours. It doesn't seem logical to me that this happens, especially when life is hard enough in general for the family and the child.
It's slightly easier when you have a neurotypical child ( 'normal') and they understand about the breaks from school, but for J it is confusing,frustrating and upsetting ( count me in for the last two).
I am lucky this year that J got into a play scheme for the first two weeks, but thereafter it is the boredom of the house for him, with occasional trips out to parks and the forest.
I have to time trips to the playgrounds quite early in the day so that we avoid the manic rush at around 11am of all other exhausted parents, where it then means J cannot have free reign of the swings.
It may be idealistic, but I think school should not end for a solid 6-7 weeks for special needs children.
J has no thrill of the impending break and excitement of playing every day with friends. He wants to be in the routine and expectation of schooling.
It is similar to when there is non-uniform day.
J would flip if I were to send him in without his uniform. He equates school uniform with school. Pyjamas or normal dress is odd and freaky to him.
I struggled the first day with his play scheme as he went to his school (where it is being held) and was quite upset. It was recorded in his book that he only calmed down with the flapping after lunch. Luckily he now accepts he is going into school, in regular clothes, but it is a play scheme and not school. But this will end in a weeks time, and he will be anxious as to why he is not going anywhere like that again.
There may be more help available such as carers hired through organisations, but these are sporadic ( 90 minutes per week, but can be saved up for a big block of time) and the structure and routine of the usual school week is abandoned, causing our children to fall into unwanted behaviours. It doesn't seem logical to me that this happens, especially when life is hard enough in general for the family and the child.
Thursday, 22 July 2010
J the artist
Here are some photos of J's latest artwork.
Shame it is on my painted walls and not paper.
Shame it is on my painted walls and not paper.
Wednesday, 21 July 2010
Illness
One of the things I worry about a lot now and in the future is knowing when J is ill.
Minor illnesses are easy to diagnose and treat, such as coughs, colds, stomach bugs and viral infections causing rashes, but anything internal and more serious I am sure we will not know until it is quite advanced, and that worries me.
J does become, naturally, lethargic when ill with the common infections, and I can treat him with childrens medicine to relieve pain and high fever.
As I like to think I am on the ball and pro-active rather than reactive, I would hope I would be able to spot something not quite right and get him sorted.
But, as is in the medical world, it is very hard to find out what hurts and where, if the patient does'nt talk.
It is the same for his teeth.
How will I know he has tooth ache? I hope he will be able to demonstrate through natural body language the problem so I can get it fixed. But as he is not a good patient and will not tolerate sitting in a chair having someone prod about his mouth it will be a long hard process getting him diagnosed and helped.
Any kind of procedure dental wise will have to be done with a sedation, but I worry that he will be freaking out internally but not able to move.
I still remember the drama over his first tooth wobbling and finally coming out.
He would eat sideways and scream and cry when he moved it with his tongue. For a week he held onto his tooth by the thread of a nerve and one day on collection from school his teacher handed me a tissue with his tooth in it. It had made it's way out of his mouth, onto the school hall floor during assembly, much to the consternation and crying from J.
The next few teeth were greeted with worry and upset, but he dealt more easily with it and I learnt that as soon as he alerted me to the fact his tooth was wobbly, he would have it out of his mouth within thirty minutes flat, flushed down the toilet with no trace.
The other day he caught his big toe nail on something in the garden ( he loves being bare foot ) and, as always, I knew something was wrong by his cries.
I saw it had ripped half way up his nail, along the nail bed, and was bleeding. As the nail had not come off completely he was fiddling with it.
I tried to clean it of dirt with some tissue and water, which was met with many howls of panic. Then, thinking it would be best, I attempted to cover it with a plaster. Oh no no no. That was pulled off straight away.
So I fashioned three of them, pulled tightly, and covering his whole toe. It was perfectly suitable as protection for his nail.
They lasted on his toe for a total of 180 seconds.
J decided he wanted to be au naturel and let it heal freely. Which it did.
It looks fine now thankfully and he's stopped picking at it, so I know the pain must have ended for him. Thank goodness.
Minor illnesses are easy to diagnose and treat, such as coughs, colds, stomach bugs and viral infections causing rashes, but anything internal and more serious I am sure we will not know until it is quite advanced, and that worries me.
J does become, naturally, lethargic when ill with the common infections, and I can treat him with childrens medicine to relieve pain and high fever.
As I like to think I am on the ball and pro-active rather than reactive, I would hope I would be able to spot something not quite right and get him sorted.
But, as is in the medical world, it is very hard to find out what hurts and where, if the patient does'nt talk.
It is the same for his teeth.
How will I know he has tooth ache? I hope he will be able to demonstrate through natural body language the problem so I can get it fixed. But as he is not a good patient and will not tolerate sitting in a chair having someone prod about his mouth it will be a long hard process getting him diagnosed and helped.
Any kind of procedure dental wise will have to be done with a sedation, but I worry that he will be freaking out internally but not able to move.
I still remember the drama over his first tooth wobbling and finally coming out.
He would eat sideways and scream and cry when he moved it with his tongue. For a week he held onto his tooth by the thread of a nerve and one day on collection from school his teacher handed me a tissue with his tooth in it. It had made it's way out of his mouth, onto the school hall floor during assembly, much to the consternation and crying from J.
The next few teeth were greeted with worry and upset, but he dealt more easily with it and I learnt that as soon as he alerted me to the fact his tooth was wobbly, he would have it out of his mouth within thirty minutes flat, flushed down the toilet with no trace.
The other day he caught his big toe nail on something in the garden ( he loves being bare foot ) and, as always, I knew something was wrong by his cries.
I saw it had ripped half way up his nail, along the nail bed, and was bleeding. As the nail had not come off completely he was fiddling with it.
I tried to clean it of dirt with some tissue and water, which was met with many howls of panic. Then, thinking it would be best, I attempted to cover it with a plaster. Oh no no no. That was pulled off straight away.
So I fashioned three of them, pulled tightly, and covering his whole toe. It was perfectly suitable as protection for his nail.
They lasted on his toe for a total of 180 seconds.
J decided he wanted to be au naturel and let it heal freely. Which it did.
It looks fine now thankfully and he's stopped picking at it, so I know the pain must have ended for him. Thank goodness.
Sunday, 18 July 2010
Out in the park
J loves the outdoors. He can wander around forests without getting bored.
Parks and playgrounds also hold fun for him.
We went kite flying today.
I had to sit back in the car as little baby W needed a feed, so I had a good view of the park and the people milling about.
J was out there with his dad and O. O and their dad were flying the kite, and the dogs were having a good run. I scanned the scene for J. Where was J? Had he headed into the wooded area away from view? He wasn't in the playground area.
Then I spotted him.
He was holding a 500ml bottle of diet cola, and was rolling along the grass.
There was no hill, but he was rolling along and along and along as if there was.
The bottle of cola was held aloft by one arm whilst he performed his acrobatic skill.
He was called back over by his dad and for a while stayed close.
Then his wandering need took hold again, and he was off.
I saw a family had arrived and unloaded a pink girls bike, a dog (lovely boxer who looked very pregnant) and a daughter.
J was beelining for them.
They were ambling along happily when they got an additional companion who tagged one pace behind them.
They realised they had a follower and turned and smiled at him, and I think they said something, but as per J he didn't respond and you could see the quizzical expression on their faces.
He continued to follow them, and as his dad was enthralled by the kite now flying high in the sky, I knew I had to take action.
So baby on boob, I got out of the car and called him.
Nothing.
I called a little louder.
Nada.
I moved forward, aware of the offence I could cause others by feeding my baby, unlatched, covered up and picked up a swift half run half funny fast walk , still calling him back.
He soon heard me and diverted his steps away from them and back towards his dad.
I never caught up with them to explain, so they will never know why they had a follower.
Back in the car to finish the feed, and J and O are in the playground bit.
There are two teens sitting on the only two swings. They have their music playing and are swigging from some sort of caffeine/sugar concoction fizzy drink.
O is climbing the spider frame, and J is standing by the swings staring at the teens.
The teens say something and he ignores.
They look a bit freaked out by him still standing there.
I intervene yet again ( their father is having a whale of the time with the kite, meant for the children). I ask them politely if he can have a go on the swing and they both hop off, but still stand very close.
J swings back and forth, shouting his favourite phrases out, and the teens are thinking what a little madman I have on my hands. But he's having fun, so I don't care!
The dogs had fun sniffing a very willing little hussy of a female dog, with a pink diamante collar. My dogs choose an end and sniff, then swap. She enjoys it as she is wagging her little tail.
So all in all everyone had a good morning out, apart from J's t-shirt which has grass stains and mud over it.
Parks and playgrounds also hold fun for him.
We went kite flying today.
I had to sit back in the car as little baby W needed a feed, so I had a good view of the park and the people milling about.
J was out there with his dad and O. O and their dad were flying the kite, and the dogs were having a good run. I scanned the scene for J. Where was J? Had he headed into the wooded area away from view? He wasn't in the playground area.
Then I spotted him.
He was holding a 500ml bottle of diet cola, and was rolling along the grass.
There was no hill, but he was rolling along and along and along as if there was.
The bottle of cola was held aloft by one arm whilst he performed his acrobatic skill.
He was called back over by his dad and for a while stayed close.
Then his wandering need took hold again, and he was off.
I saw a family had arrived and unloaded a pink girls bike, a dog (lovely boxer who looked very pregnant) and a daughter.
J was beelining for them.
They were ambling along happily when they got an additional companion who tagged one pace behind them.
They realised they had a follower and turned and smiled at him, and I think they said something, but as per J he didn't respond and you could see the quizzical expression on their faces.
He continued to follow them, and as his dad was enthralled by the kite now flying high in the sky, I knew I had to take action.
So baby on boob, I got out of the car and called him.
Nothing.
I called a little louder.
Nada.
I moved forward, aware of the offence I could cause others by feeding my baby, unlatched, covered up and picked up a swift half run half funny fast walk , still calling him back.
He soon heard me and diverted his steps away from them and back towards his dad.
I never caught up with them to explain, so they will never know why they had a follower.
Back in the car to finish the feed, and J and O are in the playground bit.
There are two teens sitting on the only two swings. They have their music playing and are swigging from some sort of caffeine/sugar concoction fizzy drink.
O is climbing the spider frame, and J is standing by the swings staring at the teens.
The teens say something and he ignores.
They look a bit freaked out by him still standing there.
I intervene yet again ( their father is having a whale of the time with the kite, meant for the children). I ask them politely if he can have a go on the swing and they both hop off, but still stand very close.
J swings back and forth, shouting his favourite phrases out, and the teens are thinking what a little madman I have on my hands. But he's having fun, so I don't care!
The dogs had fun sniffing a very willing little hussy of a female dog, with a pink diamante collar. My dogs choose an end and sniff, then swap. She enjoys it as she is wagging her little tail.
So all in all everyone had a good morning out, apart from J's t-shirt which has grass stains and mud over it.
Wednesday, 14 July 2010
Our A&E adventure
Around two years ago, when we were living in the old house, J came in from the garden crying and crawling on his knees.
I tried to get him to stand up, but he couldn't bear weight on his left foot, and wanted to sit down.
I panicked and thought he's broken his ankle or toe, but on closer inspection I realised he had a nail stuck into the sole of his foot.
Where this nail had come from I don't know, but it was sods law that he was jumping off of the climbing equipment, directly onto this stray piece of metal danger.
I could see the outer part of his skin around the nail head was already pussing up with green gunk and knew I had to get him seen to.
So we took him to our local NHS 'Walk in centre' on the advice of my GP surgery.
We waited for over an hour in their waiting room.
His foot was turning red from, what we later learnt, the infection.
We finally saw a triage nurse who said he would need to be seen at the main hospital.
Great! Wasted our time on that then.
Up at the A&E department, we waited an hour to see a triage nurse, before waiting a further three hours to be seen by a doctor.
J had behaved perfectly, sitting in his wheelchair and not making much fuss, considering he had a nail embedded in the sole of his foot.
When we finally were called through to see the doctor, I reminded them that he had learning difficulties and would not co-operate and did not understand what they were saying.
I was told by the first nurse that she was very good with children and he would be fine with her.
J screamed when she tried to lift his foot up to see.
So she knelt on the floor to have a look.
J screamed and would not keep his foot still for her.
She muttered something and disappeared back behind the curtain.
Ten minutes later another nurse appeared, and she too was very good with children, apparently.
When I explained about J, I was again met with not much acknowledgement of what I was saying, and felt as if they knew better and I was being over the top.
J screamed at her attempts to look at his foot.
She scurried off.
A paed doctor appeared, blustering in with the curtain swishing with her presence, and she declared J would need an x ray. Ha! If he won't keep still for a simple exam, how will he keep still for this? "Oh don't be silly, they are very good in children's x ray, and know what they are doing".
Well, in x ray we started off with a nurse, an x ray technician and a helper.
We tried him getting on to the trolley. Scream.
We tried him sitting in a chair. Scream.
We then tried him in his wheelchair, moving all the equipment around, bending and contorting it to reach him. Scream.
A further two nurses were called in to help.
I was given a lead apron to wear so I too could help.
Scream, scream scream.
J had turned beetroot and was sweating.
I was sweating and was trying to balance myself crouching down and holding his knees, whilst the lead apron dragged me with the gravity towards collapse.
After 45 minutes, I had proved that Sure deodorant does not work for 24 hours. It may work for the lovely svelte girlie who is rock climbing and jumping over things, but for this mum, stuck in an x ray room, with a screaming 6 year old, it let me down.
So, we were sent back to the department.
We sat for a further thirty minutes before anyone dared appear.
We were being moved to a side room. One that had walls and a door. Not sure that was going to keep the noise away from all the other patients.
The paed doctor appeared again, and was "very disappointed" that we had failed getting her the x rays. I explained, yet again about J. For a paed doctor she was not very in touch.
I asked about him being sedated for an examination. As they still hadn't gotten a look at his foot.
Paed doctor looks at me as if I have asked her to hack his foot off with a rusty blade and be done with it. "Oh no no no. I don't like giving sedation unless it's really needed".
Perhaps if I were to start screaming too, she would have considered it.
So, we were now stuck in this side room. Bare white walls. A strip light running down the middle of the ceiling. A solitary wall sticker of Winnie the Pooh pigging out on a jar of 'hunny' peeling at the edges.
J was calming down and lying on the bed.
I was sitting on a hard plastic flimsy chair wishing I could make this better for him and escape this place.
Suddenly a very tall and imposing male doctor appeared. He was authoritative but listened to me.
He took in what I was saying and muttered to his fellow companion he needed X to be called down now to help.
He administered some drug up J's nose.
This drug would either calm him down enough to feel spaced out and allow them to examine him, or it would make him hyper. Wow what a great drug! Sleepy or hyper and no-one would know how it affected him until it had been sprayed up his nostrils.
J did not become passive. But neither did he become hyper.
Then, a further 20 minutes later, tall doctor, his companion, (this is a bit like Dr Who, but not the lovely Mr Eccleston alas) and X ( a nurse from the paed ward upstairs) came in, held him down on the bed, looked at his foot, produced some metal instruments, and 'clang' I heard the sound of the nail being dropped into a metal kidney shaped dish.
His foot was cleaned and bandaged and he was given a tetanus shot along with some antibiotics.
It was all over. We could go home. Hurrah!
In total we had spent nine hours at the hospital.
It was dark when we left to go home.
As soon as we walked in the door, the nasal drug had decided to work its hyper wonders and J became manic. He behaved as if he had been fed sugar coated happy pills. But, at least he could bear weight on his foot, albeit limping, but not crawling along like before.
I did feel that if we had been listened to and the staff had an understanding of learning difficulties we would not have been treated the way we were, with added stress being applied because they knew better than me.
And I know this is a common occurrence for many other parents and their special children.
I tried to get him to stand up, but he couldn't bear weight on his left foot, and wanted to sit down.
I panicked and thought he's broken his ankle or toe, but on closer inspection I realised he had a nail stuck into the sole of his foot.
Where this nail had come from I don't know, but it was sods law that he was jumping off of the climbing equipment, directly onto this stray piece of metal danger.
I could see the outer part of his skin around the nail head was already pussing up with green gunk and knew I had to get him seen to.
So we took him to our local NHS 'Walk in centre' on the advice of my GP surgery.
We waited for over an hour in their waiting room.
His foot was turning red from, what we later learnt, the infection.
We finally saw a triage nurse who said he would need to be seen at the main hospital.
Great! Wasted our time on that then.
Up at the A&E department, we waited an hour to see a triage nurse, before waiting a further three hours to be seen by a doctor.
J had behaved perfectly, sitting in his wheelchair and not making much fuss, considering he had a nail embedded in the sole of his foot.
When we finally were called through to see the doctor, I reminded them that he had learning difficulties and would not co-operate and did not understand what they were saying.
I was told by the first nurse that she was very good with children and he would be fine with her.
J screamed when she tried to lift his foot up to see.
So she knelt on the floor to have a look.
J screamed and would not keep his foot still for her.
She muttered something and disappeared back behind the curtain.
Ten minutes later another nurse appeared, and she too was very good with children, apparently.
When I explained about J, I was again met with not much acknowledgement of what I was saying, and felt as if they knew better and I was being over the top.
J screamed at her attempts to look at his foot.
She scurried off.
A paed doctor appeared, blustering in with the curtain swishing with her presence, and she declared J would need an x ray. Ha! If he won't keep still for a simple exam, how will he keep still for this? "Oh don't be silly, they are very good in children's x ray, and know what they are doing".
Well, in x ray we started off with a nurse, an x ray technician and a helper.
We tried him getting on to the trolley. Scream.
We tried him sitting in a chair. Scream.
We then tried him in his wheelchair, moving all the equipment around, bending and contorting it to reach him. Scream.
A further two nurses were called in to help.
I was given a lead apron to wear so I too could help.
Scream, scream scream.
J had turned beetroot and was sweating.
I was sweating and was trying to balance myself crouching down and holding his knees, whilst the lead apron dragged me with the gravity towards collapse.
After 45 minutes, I had proved that Sure deodorant does not work for 24 hours. It may work for the lovely svelte girlie who is rock climbing and jumping over things, but for this mum, stuck in an x ray room, with a screaming 6 year old, it let me down.
So, we were sent back to the department.
We sat for a further thirty minutes before anyone dared appear.
We were being moved to a side room. One that had walls and a door. Not sure that was going to keep the noise away from all the other patients.
The paed doctor appeared again, and was "very disappointed" that we had failed getting her the x rays. I explained, yet again about J. For a paed doctor she was not very in touch.
I asked about him being sedated for an examination. As they still hadn't gotten a look at his foot.
Paed doctor looks at me as if I have asked her to hack his foot off with a rusty blade and be done with it. "Oh no no no. I don't like giving sedation unless it's really needed".
Perhaps if I were to start screaming too, she would have considered it.
So, we were now stuck in this side room. Bare white walls. A strip light running down the middle of the ceiling. A solitary wall sticker of Winnie the Pooh pigging out on a jar of 'hunny' peeling at the edges.
J was calming down and lying on the bed.
I was sitting on a hard plastic flimsy chair wishing I could make this better for him and escape this place.
Suddenly a very tall and imposing male doctor appeared. He was authoritative but listened to me.
He took in what I was saying and muttered to his fellow companion he needed X to be called down now to help.
He administered some drug up J's nose.
This drug would either calm him down enough to feel spaced out and allow them to examine him, or it would make him hyper. Wow what a great drug! Sleepy or hyper and no-one would know how it affected him until it had been sprayed up his nostrils.
J did not become passive. But neither did he become hyper.
Then, a further 20 minutes later, tall doctor, his companion, (this is a bit like Dr Who, but not the lovely Mr Eccleston alas) and X ( a nurse from the paed ward upstairs) came in, held him down on the bed, looked at his foot, produced some metal instruments, and 'clang' I heard the sound of the nail being dropped into a metal kidney shaped dish.
His foot was cleaned and bandaged and he was given a tetanus shot along with some antibiotics.
It was all over. We could go home. Hurrah!
In total we had spent nine hours at the hospital.
It was dark when we left to go home.
As soon as we walked in the door, the nasal drug had decided to work its hyper wonders and J became manic. He behaved as if he had been fed sugar coated happy pills. But, at least he could bear weight on his foot, albeit limping, but not crawling along like before.
I did feel that if we had been listened to and the staff had an understanding of learning difficulties we would not have been treated the way we were, with added stress being applied because they knew better than me.
And I know this is a common occurrence for many other parents and their special children.
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