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.
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