On each and every trip we take out in the car with J, it is a round robin trip of asking for fast food from each of the various outlets which seem to litter every town and city.
McDonald's,KFC, Burger King, whichever is coming into view with their enormous lettering up to the sky, I will hear "cola,chips, chicken" emanating from the back seat. Not one request mind you. But a request repeated over and over again, gaining in volume and intensity as we near their premises, and then replaced by crying, banging and shouts of "cola, chips" as we go past their eatery.
Now, as we take similar routes daily and weekly, J can predict when each one will be appearing in his view line.
I have made observations before that J would be happy to travel round all day in the car, stopping off at each takeaway, and to him that would be a productive and enjoyable day.
But, yes, as we are all aware, fast food is not good food. It is not healthy or kind to the body and is just fat and salt made flavoursome and colourful thanks to the array of food colourants and additives.
One interesting fact which I learnt a while ago, and when I say 'fact' I am not quoting from Debretts guide to fine dining, rather a little info passed on in conversation with a friend ( which is not to say it is not true!) is the following :- McDonald's only put a gherkin into their burgers as it takes their food from being classed as a dessert to a meal. In lamans terms, there is so much sugar in their savoury foods, that under government guidelines they would have to advertise them as desserts, but by placing a slither of gherkin within the sauce, they tip the balance over from sweet to savoury.
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Wednesday, 28 April 2010
Sunday, 25 April 2010
Awareness of others
If you are reading this and already know about autism or learning difficulties more than just basic facts, you more often than not will be able to tell if a person has either disability, as the tell tale signs are more obvious to those exposed to it on a regular basis.
Those that have little or no understanding of these can be excused to an extent their ignorance.
However, ignorant and rude are not the same.
Before autism came into my life, I like to think that I was a kind person who never judged others and did not stare, point, comment or mock anyone appearing to have special needs.
But, now it has touched my life, I am hyper aware of those who have these disabilities and I make extra special time to smile, converse with the more verbally astute and make them feel no different to anyone else.
The other day I was in traffic and my eyes wandered over to the pavement where I witnessed a grown man of around 25, crawling on his hands and knees. He was not a drunk, druggie, or having a joke. He had learning difficulties. I could just tell.
I felt sorry for him that he had no-one with him. It seemed to me that he was over loading outside of his comfort zone and he reverted to behaviour that comforted him and made him feel safe.
But, the one emotion which I felt strongest, was anger. Anger at the ignorant, rude, down right imbecilic men sitting in their van in the other lane of traffic, making gestures and comments towards this man. Now I could go into stereotyped mockery of these men in their white van, The Sport newspaper taking pride of place on their dashboard, and cigarettes in dirty, chewed down nailed hands, but really I have conjured up a good image of them in my description, and there I will leave you with your own assumptions of them.
I only wish I could have a magic cloak, which I would wrap around all people with autism and learning difficulties, and protect them from those that are contemptuous and disrespectful.
Those that have little or no understanding of these can be excused to an extent their ignorance.
However, ignorant and rude are not the same.
Before autism came into my life, I like to think that I was a kind person who never judged others and did not stare, point, comment or mock anyone appearing to have special needs.
But, now it has touched my life, I am hyper aware of those who have these disabilities and I make extra special time to smile, converse with the more verbally astute and make them feel no different to anyone else.
The other day I was in traffic and my eyes wandered over to the pavement where I witnessed a grown man of around 25, crawling on his hands and knees. He was not a drunk, druggie, or having a joke. He had learning difficulties. I could just tell.
I felt sorry for him that he had no-one with him. It seemed to me that he was over loading outside of his comfort zone and he reverted to behaviour that comforted him and made him feel safe.
But, the one emotion which I felt strongest, was anger. Anger at the ignorant, rude, down right imbecilic men sitting in their van in the other lane of traffic, making gestures and comments towards this man. Now I could go into stereotyped mockery of these men in their white van, The Sport newspaper taking pride of place on their dashboard, and cigarettes in dirty, chewed down nailed hands, but really I have conjured up a good image of them in my description, and there I will leave you with your own assumptions of them.
I only wish I could have a magic cloak, which I would wrap around all people with autism and learning difficulties, and protect them from those that are contemptuous and disrespectful.
Saturday, 24 April 2010
"Cola chips"
Every single day, no matter what time, whether it is straight after a meal, in the middle of the night, or immediately as I collect him from school, the first thing J says is "cola, chips".
It has become a habit of his, but it is a real request and not just echolalia.
As his food fads are so severe it would be easy to fall into the trap of just feeding him McDonald's, but this would be detrimental to his physical health, and as he is already a big chap - tall as well as well built ( not fat) and at nearly age 8 he is wearing age 11-12 clothes, so he needs to be kept in shape and healthy.
He also uses the phrase as a wind up. He knows it will get him a response at some point, so will continue to say it, getting louder, changing the tone, becoming upset, or just saying " cola, chips, noooooo" and then laughing hysterically.
I can say no a thousand times and he would still ask.
With me saying no, he enjoys the interaction, however negative it is, and will then continue in his quest for "cola, chips" over and over again.
On the occasions he does get a McDonald's, he will eat his chips as if he had been starved for a century. Fistfuls of chips are shovelled into his mouth and even as he chews one mouthful he has a fistful of the next batch ready to cram in. He would win any food eating championship contest I am sure, even against those American hot dog winners. J would be chip champion extraordinaire and win a Gold for Britain.
It has become a habit of his, but it is a real request and not just echolalia.
As his food fads are so severe it would be easy to fall into the trap of just feeding him McDonald's, but this would be detrimental to his physical health, and as he is already a big chap - tall as well as well built ( not fat) and at nearly age 8 he is wearing age 11-12 clothes, so he needs to be kept in shape and healthy.
He also uses the phrase as a wind up. He knows it will get him a response at some point, so will continue to say it, getting louder, changing the tone, becoming upset, or just saying " cola, chips, noooooo" and then laughing hysterically.
I can say no a thousand times and he would still ask.
With me saying no, he enjoys the interaction, however negative it is, and will then continue in his quest for "cola, chips" over and over again.
On the occasions he does get a McDonald's, he will eat his chips as if he had been starved for a century. Fistfuls of chips are shovelled into his mouth and even as he chews one mouthful he has a fistful of the next batch ready to cram in. He would win any food eating championship contest I am sure, even against those American hot dog winners. J would be chip champion extraordinaire and win a Gold for Britain.
Tuesday, 13 April 2010
The Channel 4 programme
Last night there was a programme on Channel 4, titled Young,Autistic and Stagestruck.
I have watched a lot of programmes made about autism. The recent ones have followed children and young adults in their daily lives and the struggles they have to deal with.
What I have always found is that they do not show the most severe types of autism. All the children featured have good speech and language and therefore the person viewing, the ones who have no understanding of autism, not the ones who, like me are watching to learn more about their own autistic child) presume that all autistics are the same.
This does nothing to bring to attention the many children and adults who have poor language and communication.
The programmes last night was the first one that didn't get me angry at the portrayal of these special children. Yes, most had excellent language, but this time the film makers showed two children who had difficulties with understanding and communicating.
The programme premise is about getting a group of children performing a stage production.
But, what it also does is to show the real plight and suffering they endure.
One boy, who I took a shine to, was incredible with his verbal communication, but this then highlighted what he feels internally. His mother was a rock, and listened to him talking about wanting to kill himself as he hated the way he felt inside and what his autism did to him.
Now, I have always said, even though I wished my J wasn't afflicted with autism, that I am glad he is more severe and in my opinion not aware he is different to neurotypical children. But, this boy made me think. Does J know he is different, struggle inside, and wish he was neurotypical, but unable to communicate this to me or anyone? If so, then it has made me even more determined to make his life a fabulous one.
What I also saw were teenagers, in the grip of hormones, desperate to have a relationship with the opposite sex, but struggling to make these bonds.
Two such teens, bonded. However, you could see the stilted, awkwardness about them when trying to get close. They both knew that people cuddle and kiss a person they like, but when they both cuddled each other, they were almost robotic in their movements and I could tell they were not really enjoying it, as a neurotypical person would, but it made them both feel they were achieving something that both they and their parents thought would elude them.
I also loved seeing the children, when not being filmed directly but in the background, doing their little 'auty' things, like flapping, dancing, body jerking, etc. These children really are special, and I have my very own one!
I have watched a lot of programmes made about autism. The recent ones have followed children and young adults in their daily lives and the struggles they have to deal with.
What I have always found is that they do not show the most severe types of autism. All the children featured have good speech and language and therefore the person viewing, the ones who have no understanding of autism, not the ones who, like me are watching to learn more about their own autistic child) presume that all autistics are the same.
This does nothing to bring to attention the many children and adults who have poor language and communication.
The programmes last night was the first one that didn't get me angry at the portrayal of these special children. Yes, most had excellent language, but this time the film makers showed two children who had difficulties with understanding and communicating.
The programme premise is about getting a group of children performing a stage production.
But, what it also does is to show the real plight and suffering they endure.
One boy, who I took a shine to, was incredible with his verbal communication, but this then highlighted what he feels internally. His mother was a rock, and listened to him talking about wanting to kill himself as he hated the way he felt inside and what his autism did to him.
Now, I have always said, even though I wished my J wasn't afflicted with autism, that I am glad he is more severe and in my opinion not aware he is different to neurotypical children. But, this boy made me think. Does J know he is different, struggle inside, and wish he was neurotypical, but unable to communicate this to me or anyone? If so, then it has made me even more determined to make his life a fabulous one.
What I also saw were teenagers, in the grip of hormones, desperate to have a relationship with the opposite sex, but struggling to make these bonds.
Two such teens, bonded. However, you could see the stilted, awkwardness about them when trying to get close. They both knew that people cuddle and kiss a person they like, but when they both cuddled each other, they were almost robotic in their movements and I could tell they were not really enjoying it, as a neurotypical person would, but it made them both feel they were achieving something that both they and their parents thought would elude them.
I also loved seeing the children, when not being filmed directly but in the background, doing their little 'auty' things, like flapping, dancing, body jerking, etc. These children really are special, and I have my very own one!
Saturday, 10 April 2010
Oh great another one
I forgot that last summer J would urinate in the garden. He would go outside as soon as the door was open and stand on the patio and wee. I had to remind myself to keep getting him to go to the toilet every hour so as to cut back on the amount in his bladder when out in the garden.
This weekend the weather has been lovely and so the patio door is open a lot more. I thought he had done a wee out there yesterday, and today I caught him in the act.
Now I know this is not laziness. It is just another of his 'little quirks'. However, even though our house is detached and set well back from the road, we do still have neighbours each side.
One set of neighbours cannot see into our garden as we have such high greenery and trees.
But the other set can.
This set moved in last year, and she was frosty from the start. We both attempted to say hello to her, but were greeted with a nose in the air head turn. I could understand if her house was better than ours, but it isn't - it's smaller and cheaper and semi detached. Bitchy to say I know, but if you are going to behave like a snob, at least have more than the people you are being snobby too!
I am aware of her attitude and so you can imagine my hesitance to allow J outside, as she would probably be aghast at what occurs over here. And to see J, who is nearly 8 years old, but the size of an 11 year, jibber jabbering away in his nonsense language (" awashee har, gwanny gwanny gwanny,a why har anar") , and then urinate over the patio, she would surely faint with horror.
This weekend the weather has been lovely and so the patio door is open a lot more. I thought he had done a wee out there yesterday, and today I caught him in the act.
Now I know this is not laziness. It is just another of his 'little quirks'. However, even though our house is detached and set well back from the road, we do still have neighbours each side.
One set of neighbours cannot see into our garden as we have such high greenery and trees.
But the other set can.
This set moved in last year, and she was frosty from the start. We both attempted to say hello to her, but were greeted with a nose in the air head turn. I could understand if her house was better than ours, but it isn't - it's smaller and cheaper and semi detached. Bitchy to say I know, but if you are going to behave like a snob, at least have more than the people you are being snobby too!
I am aware of her attitude and so you can imagine my hesitance to allow J outside, as she would probably be aghast at what occurs over here. And to see J, who is nearly 8 years old, but the size of an 11 year, jibber jabbering away in his nonsense language (" awashee har, gwanny gwanny gwanny,a why har anar") , and then urinate over the patio, she would surely faint with horror.
Wednesday, 7 April 2010
Welcome to Holland - by Emily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Tuesday, 6 April 2010
This song sums up my love for J
.
http://www.youtube.com/watch?v=Mq4c5K35WvA
It is by Sade.
It always get me as I relate it to not only J but all my children.
Please listen to it and the words.
,
http://www.youtube.com/watch?v=Mq4c5K35WvA
It is by Sade.
It always get me as I relate it to not only J but all my children.
Please listen to it and the words.
,
Fight Fight Fight
That is all I ever seem to do to get anywhere with the Local Authority.
Why is it that parents who are already struggling to cope emotionally,physically, mentally and financially with a disabled child, then have to struggle to get any sort of help and support from the very people paid to do such a thing.
Disability Living Allowance is a phone book thick pile of form filling. Answering question after question. Then, once sent to their offices, the form is looked at by someone who has no training or understanding of special needs and disabilities and is only looking for 'key words'. If you have taken your time to honestly fill out their forms, but omit their secret special 'key words' then you will not get what is entitled to you.
An example - I knew we were entitled to DLA. I filled it out correctly and honestly. I receive a standard letter, 12 weeks later, stating we were not entitled to anything from them. Why?
Well, autism, does not feature on their 'key words'. However, 'organic brain dysfunction' does. These two are one and the same, just different words. When I re-applied using these 'key words', 12 weeks later we got an acceptance letter. How disgusting is that?
If I had not done my homework, and trawled through the Internet I would not have found this little jewel of information and would still be poorer for it.
Now on to Carers Allowance.
This is paid to you if you cannot work as you are caring for someone who gets DLA. You can work up to 16 hours per week and still claim, but the majority of us carers have to do this caring job 24/7 so a part time job is out of the question.
So why is it that the allowance is little over £45 per week? How the hell is someone supposed to live on that amount and not work? It is a joke. A joke which this and every other Government love to play, all the while having their swimming pools drained and hedges topiaried.
We have a team of social workers specialising in disabilities in our area. They are a bunch of 'professionals' (I use the term loosely for some of them) with whom you liaise and supposedly get help for a variety of things such as a phyc for your child, a nurse to talk about health concerns, a dedicated worker who is there for you when you need help and advice, an occupational therapist etc.
But these 'professionals' lack a certain something. That being, in my opinion, any kind of pro-activeness. They are re-active.
We had been on a waiting list to get on to a waiting list to see the occupational therapist for one year. Yes you read that correctly - a waiting list to get on to a waiting list! Then, once on the waiting list to see the OT, it took another full year before we got an appointment.
I am only touching the tip of the ice berg here with the faults and failings of the services provided for children with disabilities and their families.
One day perhaps, this Government, the Local Authorities and those in charge of providing these services will get their acts together, stop wasting valuable money on 'team building' exercises and corporate lunches and jollies to top class hotels to discuss how they might achieve a better class service and actually deliver one.
What good is it to a child in a home environment that is struggling to cope if these 'professionals' are not interested until it is too late?
Our area has a respite building for children. The children that get in there are from homes with abuse. The authority do not provide any respite for disabled children who are not from abused homes. Can you see what I am saying here? They only allow children in once they have been abused ( and by abused I refer to physical violence) and not before. So the families struggling to cope get no help, are then pushed to their limits, snap, and then the child is helped. Where is the help before this occurs? Logic dictates this. Sadly logic is missing from most social workers and their office staff.
Why is it that parents who are already struggling to cope emotionally,physically, mentally and financially with a disabled child, then have to struggle to get any sort of help and support from the very people paid to do such a thing.
Disability Living Allowance is a phone book thick pile of form filling. Answering question after question. Then, once sent to their offices, the form is looked at by someone who has no training or understanding of special needs and disabilities and is only looking for 'key words'. If you have taken your time to honestly fill out their forms, but omit their secret special 'key words' then you will not get what is entitled to you.
An example - I knew we were entitled to DLA. I filled it out correctly and honestly. I receive a standard letter, 12 weeks later, stating we were not entitled to anything from them. Why?
Well, autism, does not feature on their 'key words'. However, 'organic brain dysfunction' does. These two are one and the same, just different words. When I re-applied using these 'key words', 12 weeks later we got an acceptance letter. How disgusting is that?
If I had not done my homework, and trawled through the Internet I would not have found this little jewel of information and would still be poorer for it.
Now on to Carers Allowance.
This is paid to you if you cannot work as you are caring for someone who gets DLA. You can work up to 16 hours per week and still claim, but the majority of us carers have to do this caring job 24/7 so a part time job is out of the question.
So why is it that the allowance is little over £45 per week? How the hell is someone supposed to live on that amount and not work? It is a joke. A joke which this and every other Government love to play, all the while having their swimming pools drained and hedges topiaried.
We have a team of social workers specialising in disabilities in our area. They are a bunch of 'professionals' (I use the term loosely for some of them) with whom you liaise and supposedly get help for a variety of things such as a phyc for your child, a nurse to talk about health concerns, a dedicated worker who is there for you when you need help and advice, an occupational therapist etc.
But these 'professionals' lack a certain something. That being, in my opinion, any kind of pro-activeness. They are re-active.
We had been on a waiting list to get on to a waiting list to see the occupational therapist for one year. Yes you read that correctly - a waiting list to get on to a waiting list! Then, once on the waiting list to see the OT, it took another full year before we got an appointment.
I am only touching the tip of the ice berg here with the faults and failings of the services provided for children with disabilities and their families.
One day perhaps, this Government, the Local Authorities and those in charge of providing these services will get their acts together, stop wasting valuable money on 'team building' exercises and corporate lunches and jollies to top class hotels to discuss how they might achieve a better class service and actually deliver one.
What good is it to a child in a home environment that is struggling to cope if these 'professionals' are not interested until it is too late?
Our area has a respite building for children. The children that get in there are from homes with abuse. The authority do not provide any respite for disabled children who are not from abused homes. Can you see what I am saying here? They only allow children in once they have been abused ( and by abused I refer to physical violence) and not before. So the families struggling to cope get no help, are then pushed to their limits, snap, and then the child is helped. Where is the help before this occurs? Logic dictates this. Sadly logic is missing from most social workers and their office staff.
Monday, 5 April 2010
One of his tricks
Something J used to do was to vomit at will.
He would either cough and cough until he was sick or he would find where I had hidden his favourite foods and gorge on them until he was sick - then gorge some more. He had a trick of drinking all the milk from the fridge - sometimes four litres at a time, and he would then vomit this up in the garden.
I am pretty sure it is a sensory thing and also a control issue - he can make himself sick at will which in turn gives him pleasure.
Now, this behaviour stopped a while ago, but as of yesterday evening he has started to do it again. I hear him coughing away and then trying to retch. When he does bring something up he starts laughing and giggling and is very happy with himself.
I do know this is not a virus as when he has had a vomiting virus he is very lethargic and lies on the floor in a foetal position making very low groaning noises and little whimpers.
So I am now finding little puddles of vomit around the house. The bleach is therefore out in force yet again!
He would either cough and cough until he was sick or he would find where I had hidden his favourite foods and gorge on them until he was sick - then gorge some more. He had a trick of drinking all the milk from the fridge - sometimes four litres at a time, and he would then vomit this up in the garden.
I am pretty sure it is a sensory thing and also a control issue - he can make himself sick at will which in turn gives him pleasure.
Now, this behaviour stopped a while ago, but as of yesterday evening he has started to do it again. I hear him coughing away and then trying to retch. When he does bring something up he starts laughing and giggling and is very happy with himself.
I do know this is not a virus as when he has had a vomiting virus he is very lethargic and lies on the floor in a foetal position making very low groaning noises and little whimpers.
So I am now finding little puddles of vomit around the house. The bleach is therefore out in force yet again!
Sunday, 4 April 2010
My Faith
I have always had a faith. I was raised in the Church of England faith.
I was Christened and Confirmed.
I became a Server to the vicar.
This picture to me speaks volumes. I hold it very close in my heart.
But I still ask 'why me, why my son'?
Saturday, 3 April 2010
Bear in the Big Blue House
This American children's programme has been a part of our lives for 7 years!
It is J's all time favourite programme and over the years I have recorded it on VHS from the PlayHouse Disney channel, then bought them on VHS, then upgraded to DVD and now record on the Sky+ Box.
It is made by Jim Henson productions who made the Muppets and Fraggle Rock ( I loved both of those as a child). J will watch them endlessly all day every day and never gets bored.
I must say that he will not give this much time to any other programmes, however Noddy does feature a little.
For a child who is nearly eight years old it may seem unusual that he likes programmes aimed at pre-schoolers, but I know he will be watching them well into his teens and most probably adulthood.
I buy a lot of Bear items from eBay as they do not make anything new, apart from the DVDs.
Is it sad that I can sing over 20 Bear songs from the show?! Answers on a postcard please.
It is J's all time favourite programme and over the years I have recorded it on VHS from the PlayHouse Disney channel, then bought them on VHS, then upgraded to DVD and now record on the Sky+ Box.
It is made by Jim Henson productions who made the Muppets and Fraggle Rock ( I loved both of those as a child). J will watch them endlessly all day every day and never gets bored.
I must say that he will not give this much time to any other programmes, however Noddy does feature a little.
For a child who is nearly eight years old it may seem unusual that he likes programmes aimed at pre-schoolers, but I know he will be watching them well into his teens and most probably adulthood.
I buy a lot of Bear items from eBay as they do not make anything new, apart from the DVDs.
Is it sad that I can sing over 20 Bear songs from the show?! Answers on a postcard please.
Friday, 2 April 2010
Just had a thought
- Last December we saw the paediatrician at school. We have seen her twice before, and unless you specifically ask for another appointment, you only see her once a year as a matter of routine.
Now, last December J's sleep pattern was erratic and causing him to be ill.
A typical night would evolve as thus :-
8pm - Wind down for bed
9pm - Bed - (landing actually)
10pm -'La laaing' to himself, interspersed with hollers and giggles.
11pm - Crying as he has been told numerous times to go to sleep
12 midnight - Asleep
4am - 7am- Awake and chattering and singing ( well he knows a few words to certain nursery rhymes)
He had dark circles under his eyes and was lethargic most days.
Now, upon being told this, the supposed expert decreed that he didn't have a sleep problem.
Needless to say, she is not a professional I would trust to help.
,
What must it be like?
I wonder what his world is like.
To not have any worries about life,money,health, family etc. His only concerns are whether his basic needs can be met by the person caring for him and whether there is a toilet he can access with ease.
To have the assumption that what you think and feel is what every other person thinks and feels.
To seek out stimuli that can give pleasure, but which is viewed with stark wonder by others.
To use toys in a non playing form. He likes regular Lego and Lego Duplo ( the larger pieces) but will not build a house, rather he'll collect four to five different coloured pieces ( at present - red,blue,yellow,green and black) and move them around on a shelf then stand back and observe them from differing angles.
He has never tried to play with toys appropriately and it is very hard to buy presents for him.
Sensory items such as bubble tubes can cost a fortune for a proper one. If we were to kit his room out with a few sensory items that we know he likes, we'd be looking at spending several thousand pounds.
When I watch him wombling about the house or garden I do wonder if he is bored. He doesn't seem to be, but as I will get no response from him if I were to ask, I will never really know.
To not have any worries about life,money,health, family etc. His only concerns are whether his basic needs can be met by the person caring for him and whether there is a toilet he can access with ease.
To have the assumption that what you think and feel is what every other person thinks and feels.
To seek out stimuli that can give pleasure, but which is viewed with stark wonder by others.
To use toys in a non playing form. He likes regular Lego and Lego Duplo ( the larger pieces) but will not build a house, rather he'll collect four to five different coloured pieces ( at present - red,blue,yellow,green and black) and move them around on a shelf then stand back and observe them from differing angles.
He has never tried to play with toys appropriately and it is very hard to buy presents for him.
Sensory items such as bubble tubes can cost a fortune for a proper one. If we were to kit his room out with a few sensory items that we know he likes, we'd be looking at spending several thousand pounds.
When I watch him wombling about the house or garden I do wonder if he is bored. He doesn't seem to be, but as I will get no response from him if I were to ask, I will never really know.
Well so far
..with the new meds I am giving him all I can say so far is that he has become quite hyper. Not a good thing!
I am being optimistic however as he has not been at school for a week and I kind of think that has an impact on his behaviour as he has not been able to exercise his mind and body as much as usual.
Unfortunately for all of us, we have another two weeks of no school, thanks to the Easter holiday.
He now takes all his meds with ease - thankfully.
When I describe him as 'hyper' I mean that he giggles and laughs continuously at nothing in particular. These giggles and laughs are not endearing though as they go on for up to twenty minutes at a time and upset his middle brother (who thinks he is laughing at him). They are very loud and are not abated by any direction away from it.
Of the few words that he can use, and use with meaning and understanding of what he is saying, he reels them off with non-stop passion.
"Granny,Granny,Granny,Granny,Granny,Granny,Granny,Granny,Granny" and times this by one hundred and you may see why my head is hurting.
He does not stop saying it either, no matter what you try. I repeat it to him, as sometimes he needs you to repeat what he has said to satisfy him, but it does not work.
He has also broken the rocking chair of which I have had since he was a baby. Sentimental values aside, it is also monetary, and he costs us a lot in the damages he causes. I know he is not malicious in his actions, but it is hard to have a child who is not able to comprehend the results of his actions, and who you cannot reprimand, as he doesn't understand. It is getting harder as his middle brother is at an age where he understands that what he does or says can have a negative outcome.
I am being optimistic however as he has not been at school for a week and I kind of think that has an impact on his behaviour as he has not been able to exercise his mind and body as much as usual.
Unfortunately for all of us, we have another two weeks of no school, thanks to the Easter holiday.
He now takes all his meds with ease - thankfully.
When I describe him as 'hyper' I mean that he giggles and laughs continuously at nothing in particular. These giggles and laughs are not endearing though as they go on for up to twenty minutes at a time and upset his middle brother (who thinks he is laughing at him). They are very loud and are not abated by any direction away from it.
Of the few words that he can use, and use with meaning and understanding of what he is saying, he reels them off with non-stop passion.
"Granny,Granny,Granny,Granny,Granny,Granny,Granny,Granny,Granny" and times this by one hundred and you may see why my head is hurting.
He does not stop saying it either, no matter what you try. I repeat it to him, as sometimes he needs you to repeat what he has said to satisfy him, but it does not work.
He has also broken the rocking chair of which I have had since he was a baby. Sentimental values aside, it is also monetary, and he costs us a lot in the damages he causes. I know he is not malicious in his actions, but it is hard to have a child who is not able to comprehend the results of his actions, and who you cannot reprimand, as he doesn't understand. It is getting harder as his middle brother is at an age where he understands that what he does or says can have a negative outcome.
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