Not a disability

I can not describe my son as having a disability, although that is what the professionals say. I can not say that he suffers ,because I am very sure that he does not .In fact he seems to find fun and pleasure in the most abstract of things unlike the rest of us. In an effort though to somehow understand him and to have a better insight into how he is different from other children without autism . I sometimes compare him with what I call a 'natural boy'. For example a natural boy would not run down the street  laughing and screaming and making noises (not one of eleven , anyhow) A natural boy would tell his parents when he was hungry, he would also eat voraciously unlike my son.

I do not for one minute think that my son should be like the natural boy but I do gain some insight into what is going on inside my sons head . I think it is worth making a comparison. One important reason being it helps me to worry less when my son displays behaviour that is somewhat odd to the outsider, one who has little or no experience of autism might panic when faced with a child who insists on finishing books on certain days or takes two hours to eat a bowl of pasta (especially when it does not taste just right).

It is not the behaviour that troubles me, it is though, the fact that it persists, all be it in a milder form as he gets older. And that is where the 'natural boy ' comes in handy. I see that my son has the same aspirations as the natural boy he wants more or less the same things he just goes about them in a different way .

My heart was in my mouth as I watched my son cross a road, not a busy one I must add, he started a running commentary on what he was doing  and waved cars to go past him as he calculated the timing of when to cross, he also jumped in the air several times when he realised his timing was off. He succeeded in getting across the road , eventually . Much to my relief, I congratulated myself on not intervening and felt that he could be trusted in the future.  

Some might say it would be better just to except my son the way he is and get on with it , which for the most part is what I do . But , the fact is he will one day have to join the rest of the world , the world where there are more natural boys than autistic boys . A understanding of both to me at least is helpful.

Medication

Since my son first received his diagnosis I have resisted using any medication of any kind, his mother had read that a lactose free diet might relieve the symptoms of autism I was willing to try that, but to no avail. As it was, his diet did not consist of more than a glass of milk a day, so hardly the cause of his autism. Many parents I am sure agonize over whether or not  their child should be on some kind of medication .I think personally that a child has a lot of developing to do psychically  and emotionally and drugs will only stunt that development there are ways to stimulate a child with autism, to calm them , give them focus , and channel their frustrations in a different direction. I would rather my son spent two hours playing computer games than being subdued by some drug .

I have read about squeeze boxes, where the child can be squeezed for want of a better word. The pressure put on their bodies has a very calming affect and this effect can last some hours after the pressure has been taken away. Off course anything that fascinates your child or distracts their attention away from disruptive behaviour can only be a good thing, and just as effective as any drug. A good method is too create a place where the lighting is low and there are no distractions except perhaps soothing music or sounds. It is difficult but not impossible to get inside the mind of your autistic child . Their hypersensitivity magnifies every experience so it would follow that removing any kind of stimulus from  their immediate  vicinity would have a calming effect. Surprising as it may seem autistic children can be reasoned with, if you can find the right reasons for them not to behave disruptively they can and will see sense. They do after all have a very linear way of thinking.

I think it is important to note that the drugs are being administered primarily to control behaviour. Not to cure a physical ailment. These drugs do not eradicate autism , and I think I owe it to my child to at least allow him the chance to learn to live with his autism  on his own terms. I also feel that it is important not only to research the drugs but also the person administering the drugs.(what are their reasons ,why have they come to their conclusions).

When all said and done, medication can and does help,  some very mild antidepressants for example have shown to enhance the lives of autistic people. However I personally will continue to resist the use of them unless I can see no other course .

Will there be a cure

  So much has been said about autism, but still really little is know about where it comes from and why it is here.We understand how to treat it and how to get great results from all children on the spectrum but we are still not certain what causes it and if we do discover what causes it will we then be able to cure it ? I think not  because to me I feel it is so deep routed in the psyche of the autistic person that it is in fact part of their character just like being artistic or musical or whatever.In my experience it is not just black and white, all  autistic children are different . Agreed they follow some similar behaviour patterns, but when you get down to it they all have their very own characteristics .I have yet to meet an autistic child with a nasty bone in their body though.

When I think of my son , I am sure he is blessed, I have heard from other parents of autistic children , they tell me their child is ridiculed at school and many have moved their child to a special school where they have in fact flourished . Sadly though this is not the ideal , because ultimately the child will eventually have to leave that school and live in the world. But none of that has come my son's way. True I did give the evil eye to a few of his class mates from time to time if I thought they were giving my son a hard time, I don't know how far that went to protect him from cruel jibes .I know that he himself tried to work it out with some of his less friendly classmates , by facing them and asking them what their problem was. Very courages on his part, but he does not see it that way , to him he had to get to the bottom of why he was being treated in a negative way. Now it seems he is almost the class mascot his class mates have embraced his differences and now even protect him if necessary.

All of this takes a weight of my shoulders, because as he moves into his final year of primary  I can bask in the knowledge he will be attending main stream secondary school .

First year in Scotland

In my son's first year at his Scottish school and his first Christmas in his new life, he was about to become involved in the School Christmas assembly, to which the parents of P1 and P2 are invited. Several weeks prior to this event the teachers had been preparing the children as there was a song and some acting involved  and most of the children had lines to learn. Up until about two days before the assembly my sons teacher was committed to have him be involved, but at the final rehearsal she felt that he was just not ready, he was not focusing and although he knew his lines he was not delivering them with any consistency. So it was with great reluctance she made the decision to exclude him .Instead he was to sit with his learning assistant and she would guide him through the proceedings. He did get to dress up though, new white shirt and a very colorful bow tie.

While watching the assembly I could see he was very excited,  and that his teacher had made the right decision. Although at the time it saddened me I still drew comfort and warmth from watching him obviously enjoying himself and also I could see very clearly how well he was being looked after.

Every year at assembly his role has grown and gradually over time he has been given more and more to do. Until his last performance, where he performed a magic trick  and sang a song (Where did you get that hat ?) With great aplomb. He is now capable of doing this because of all the hard work and effort put in by all the people who have been with him every step of the way. For about three years now he has been attending a drama club, where when I first asked how they felt about having an autistic boy in their class they replied "not a problem".

Once a week he has guitar lessons and again his teachers (A husband and wife team) have no problem in teaching a boy on the spectrum. Some of the people he encounters in his life have an understanding of his autism and some just go with the flow,  the fact is his character is celebrated not suppressed,  his light is allowed to shine at every opportunity.  Only on a few occasions has he encountered fear at his obvious difference from others. Fear and ignorance. For the most part though he has faced very little prejudice and although I think that some of that has to do with the fact he looks like most other children, in fact he is really quite handsome , I feel I can still celebrate the society I live in, for it's forward thinking.

Cure , Yet to be found

I feel it is important to make some mention of the so called qualified people who insist that autism is something that can be cured, I am off the opinion,  it can no more be cured than being gay can be cured,  but that does not stop people trying to cure gay and autistic people. I really do not know, so I am only making a guess here, but when faced with a child on the autistic spectrum any parent is going to first do a lot of research then look at the not so conventional methods out there for the so called cure for autism which I should repeat does not exist.

I have come to this conclusion simply because in my opinion the fundamental effects of autism on any child or adult is emotional, that is to say emotions are felt more keenly by people on the spectrum. How do you cure emotions? Not all autistic children are the same as their heightened senses affect them in different ways, granted there are many similarities, but one child might hate to eat chicken while another will only eat chicken. My son on first meeting him can be very sociable but if physical affection comes into play he can be very stilted and awkward, some autistic children give the most amazing hugs and so on.


What worries me and also makes me a little angry are the people who profit from all of the confusion, the people who profess to have had made noticeable progress with autistic children,  when the child was going to progress anyway. The people who charge exorbitant fees for so called cures that have no scientific basis and are just pure conjecture.  

What I am trying to say is autism is not tangible, you can find no evidence of it, it is not the colour black, a heart doesn't beat faster or slower,  they say there is an anomaly in the brain, but only after using the most sophisticated M.R.I. scan can this be detected and it is more to do with firing neurons than a defect or mutation.So is that the firing neurons of an autistic child, or does an autistic child fire these kind of neurons, or did the autism develop very early in pregnancy and these firing neurons only confirm what has already been diagnosed. Or is the only difference that the child has heightened senses,  that when exposed to our modern world ,the child cannot cope, so it implodes.


You tell me. Trouble is you can't. Because you don't know.

The Diagnosis

When I first received the diagnosis for my son my biggest and most overwhelming fear was that he would not progress, that he would stay the same.From age two' to the time of the diagnosis at age three and six months' he had barely learnt anything, or so it seemed to me. Although we could play and have great fun together it seemed like he was not learning. He was eating and growing but his intellect did not seem to grow. At his preschool they were trying some techniques to help his cognitive skills progress,  but it seemed like very slow progress,  and if he did not attend for a few days, he appeared to have forgotten everything.

I am a little ashamed to admit it but of all things,  if he did not progress it would have been the hardest thing for me to come to terms with. I love my son and no matter what it is unconditional. I would do whatever to make his life a happy one but if he had stayed more or less the same I would have found that very challenging.    As it was though that did not happen and he has made progress consistently since the diagnosis. I most definitely think that without all the help and support he has been given, he would have taken a lot longer to get to where he is now and none of this would have happened without the diagnosis.

In my minds eye I liken my sons path to independence like that of a child learning to ride a bike. I am running behind him holding the saddle waiting for the right time to let go so he can cycle on his own. The only thing is I have been running for a long time and there are others running along side me. We are all cheering my son on  almost willing him to cycle on his own.

I am sure I am not alone, with what I thought originally,  and I am sure there are many parents who like me still grapple with a small amount of guilt. But when all said and done we all of us just want the best for our children, and when faced with having a child who not only has to overcome the day to day challenges of living but also has to learn a whole set of coping skills whilst trying to keep up with their peers, it can be no surprise that hoping and praying for any kind of progress would be a natural thing.

Now I am very confidant my son will achieve independence.

Sleep

Every night to settle my son into sleep we have a ritual,  that took perhaps two or three months to perfect, it is essential we follow this ritual otherwise he would find it very difficult to fall asleep.It started when one night he was having trouble sleeping so I told him, "why not dream about something that makes you happy"."Like what Dad "was his reply. So from that day I have to come up with a dream he can have and woe betide me if I repeat a dream. There then follows a whole speech I have to do, as follows:

You could dream about being a detective, you could dream about you and me , packing a suitcase, going to St Johns road , to catch a Taxi to the airport to get on a plane to go to Hollywood. You could dream about eating an Eiffel tower made out of french fries, or perhaps eating a Buckingham palace made out of chocolate, or perhaps even a Edinburgh castle made out of chocolate. You could dream about taking a trip to Disney land Paris , or Disney Land Florida ,or perhaps even Disney land California.You could dream about jumping off the moon on to your bed, you could dream about mummification, you could dream about making an advert. You could dream about eating an Empire State Building made out of oat cakes. Finally you could dream about taking a trip on an Ocean Liner that has three restaurants, two swimming pools , two cinemas, a theatre, a dance studio, a performing stage, a nail bar, a hairdressers, a Costas and a McDonalds.

I have recited this every night for about six years he never tires of it, some of it he suggested himself. Needless to say more often than not he falls into a deep untroubled sleep and I am so used to this routine that I fear I might have trouble sleeping if I did not complete it myself.

Off course when I share this with other parents they find it a little odd, certainly now he is in his twelfth year, but as far as I am concerned whatever it takes, for him and in turn me, to have a good nights sleep then it is worth the repetition. My only puzzlement is when will he decide that he no longer needs me to go through this routine? When is he going to start behaving like a young teenager, guarded of his space and time?  Bearing in mind that in six years he has missed this routine five times and each of these times I was not present. I ask the question, not expecting an answer like many things attached to my sons development, I know at the end ,the answer is not always what I expect.