No more speech therapy

 Just before my sons 11th birthday I received a letter from his speech and language therapists informing me that she no longer needed to visit the school to give my son speech and language lessons as she felt he was doing just fine on his own. He was being 'discharged' as she put it. That small piece of paper representing many years of work from many different people. In affect saying we had succeeded, all of us,  in our hard work. A proud moment and one that underlines the belief that early diagnosis is key.

When I think that my son was well over four years old before he could even form a sentence,  to his command of language now. I find it truly astounding, but then I did not attend school with him nor did I attend  his speech and language sessions or his social skills classes. So I did not witness the slow progress he was making as it was happening. I was however there to have conversations with him when ever he wanted to speak,  I find that I have developed the habit now of turning off the radio in the car or stopping what I am doing if he has something to say, so that I can give him my complete attention.

We were told very soon after his diagnosis that any kind of encouragement was vital in his progress. So to compliment him when he spoke,  and when he put more than two words together, also when he used words instead of noises when communicating, was of extreme importance. What was not explained was how to get him to understand that he was in fact being complemented. Since his grasp of language was so basic and his response to anything I said to him was usually no response at all. I was at first at a complete loss as to how to make him understand that I was, in fact encouraging him.

I learnt though over time,  that accentuating everything I said,  and using very pronounced inflection when I read to him was having an effect,  and he started to show glimmers of understanding. My theory is that he understood what was being said to him but he did not understand what the need for language was, almost as if he was sending me pictures into my mind, (I did not receive those pictures) of what it was he wanted to convey. Now if it just happened that a picture he was sending coincided with me giving him food or taking him to the toilet or whatever,  then my pre empting his needs was only encouraging him to talk less. So I developed a technique of waiting,  until he used noises or even language to ask me for something,  and then getting very positively animated when he did. I devised a game,  were I would throw one of his soft toys from one room in the house to another, he loved running after the toy to retrieve it, and it was at these times of heightened emotion on his part that I would talk to him with very exaggerated facial expressions and accentuated inflection.  It took a bit of discipline on my part but it did make a difference ...

First year at the Scottish school

In his first year at his Scottish school my son was in a class called P 1-2. This in effect meant that some of the class would go on to P3 and some to P2 in the following year. Although he was of the age to go to P3 his teachers felt P2 would be a better option for him as he was still under a great deal of stress in class and needed all the support they could provide. He was in fact only really held back six months. It was a good decision and met with no resistance from me.

 Autistic children, I have found, or any children with extra challenges in life, are not so different from their peers. So the less we treat them like they are different the more able they are to just get on with life. My son had to be allocated a place in his classroom separate from the other children so that he could better focus. But whenever it was deemed possible he was encouraged to join the other children(Now, at age 11, he sits with the rest of the class for the whole day). At the beginning of each school day he was given clear instructions about what he would be doing that day. These tasks would be displayed on a noticeboard directly in front of him on removable labels and as each task was completed the label would be removed. He, like many autistic children, functioned well when he knew what was ahead. Such a simple exercise, but invaluable in his education.

 As he has got older he has become more able to cope with surprises, partly because I have made a point of surprising him and then being there to calm him, partly because life has surprises and again I would be there to calm him. Also, I think, because he has grown in confidence. This of course refers to 'desensitization', a great buzz word among the professionals. What I have yet to read about or be told about is that 'desensitization ' can take years. Years of constantly repeating the same set of actions to quell whatever it is that is causing your child distress. In my son's case his obvious ease in the company of dogs is a huge achievement and one that has taken at least seven years. To watch him holding a lead with a dog on the other end brings me no end of pride and admiration for his obvious bravery and fortitude. As I still get night tremors when I think of how he first reacted to dogs. He still has other challenges, and it could be many more years before he over comes those challenges but I am encouraged with the knowledge that he is better at coping than he was a year ago and a year before that, and so on ...

Inclusion:: maybe not

Christmas 2007 came and went and my son's visits with his mother were successful. They spent about four or five hours of good positive time together on three separate occasions. It felt like both he and his mother were excepting the situation and, odd though it might have felt to him, he seemed to have found a place in his mind for thier new style relationship. A struggle for any child, but for a child with autism I suspect that once the situation is assessed, processed, and looked at from all angles it can be accepted. That is one of my son's best attributes; his ability to move on, although his initial shock at any new facet to his life is felt very keenly. He does have the capability to see beyond life's upsets to a better place, even if it is not the desired place.

 Our immediate future was set, at least for the next eight or nine months. I would study to get my taxi license and my son would spend each day becoming more and more familiar with his new life. I was able to take him to see his mother on several occasions as my life now centered around his. The next big challenge was to be when I was ready to start work again. The issue of my licence and start day coincided with the school summer holidays. I had to find some childcare so I could work. Not long after arriving in Scotland, and on the advice of the child psychologist, I had joined the local autistic society. For a small fee I would have access to a summer play scheme (a place he loves to be)that they ran for five weeks in the summer holiday, although they could only allocate him three weeks. It was something, and it left me with only another three weeks to worry about. My local council subsidize leisure centres all over the city and they all run a summer camp for children. With the help of another charity which supported children like my son I signed him up. The idea being that the charity would visit the summer camp and explain to the staff all the things to expect from an autistic child. My local council are very vocal in their championing of 'inclusion', as they call it. Their claim was that no matter who you are you will be catered for.

 Sadly, what they said and what they actually did were quite different. It was explained very carefully to the staff at our local leisure centre that my son needed and would benefit greatly from having a clear menu of the days events, and that is was better to write it in his presence. Which, as I now understand it, is autistic childcare 101. This did not happen. Also, he was unsupervised when changing for swimming. I had previously explained that he would need help to dress and undress and also dry himself properly. This caused him great distress as he was being teased and bullied by the non autistic children, of which there were many. They did, however, have the presence of mind to call me so I could collect him. I tried two more days then pulled him from the camp, on the third day he was there for about 20 minutes. Another lesson learned: never again would I trust anything I was told by anyone in connection with my son unless I had first hand knowledge of their advertised abilities. I started work proper on the day he went back to school, happy in the knowledge I had chosen the right profession ...

Sense of the occasion

There are many challenges facing a parent of a child with autism and these challenges present themselves on a daily basis. I have found that over time I have learnt to incorporate them into our lives as if it was the most normal way to live. But then there is just the two of us. I can't imagine what it must be like in families of two or more children. For my son the essential routines he is most afraid of are baths and showers, hair cuts, and toe and finger nail cutting. To avoid the screams, and the tears, and the abject fear on his face. I used to attempt to do these tasks when he was asleep. He had a lopsided hairstyle for at least the first four years of his life and would confuse his other carers when they noticed that some of his finger nails were cut and others were not. I reasoned that in hospital people got bed baths all the time and that was considered hygienic, so why not my son. Of course this method was somewhat lacking, and every now and then I had to bite the bullet and carry out these tasks the more conventional ways.

 As far as baths were concerned, you would think I was lowering him into the bowels of hell, not a nice soothing refreshing bath. Lord only knows what the neighbours thought on those fateful evenings when I had to bath him. Over time though I have learnt to make the bath water tepid, and I came up with the idea that he could wear his swimming trunks and goggles and pretend he was at the swimming pool because he loved going there (before you ask I have no idea why).

 For his hair, it became increasingly difficult to cut it while he slept because over time it was becoming thicker. I would have to hold him or ask someone else to hold him if I tried to cut it when he was awake. I trained to be a hairdresser in the dim and distant past so I knew what I was doing, but as he got older and stronger he was able to escape my grasp. The lopsided style prevailed. One day I decided I would have to take him to the barbers, and hang the consequences. I could handle half an hour of embarrassment as he tussled with the barber for the sake of a decent haircut for once. I need not have worried. The minute he walked into the barbers he was enthralled with all of it. The noise of the clippers, the atmosphere, the people and what they were doing, the mirrors, and how the light reflected around the room. Also, the sense of the occasion, the ritual of being invited to sit, the barber getting a booster seat. He was mesmerised by it all. It was one of the best moments of my life, watching him sitting perfectly still while someone did what I had so dreadfully attempted for all those years.

 As to his finger nails; well I file them. He can bear that far better than having them cut no matter how gentle I am or how many different ways I think of distracting him or what treats I might offer him if he is a good boy. The toe nail cutting ritual has been the hardest to make a calm and matter of fact like task. For many years I just had to hold him as firmly as I could and cut the toenails as quickly and efficiently as was possible. We then went through a period of me first giving him ten minutes warning, followed by him psyching himself before the cutting. This was taking about 45 minutes at first, but over time, and now that he actually enjoys baths, I can do it when his toenails have been softened by the water ...

Heightened senses

With the experience of the last visit to his mum behind us I felt we could risk going to visit at Christmas. The telephone conversations they were having sounded like relatively relaxed affairs and he seemed very much his old self. The added value of taking him to see his mum was that I had quality time with my brother and his family. Also my son was able to spend time with his cousin.  I realise now how important their relationship was and is. I have read various articles about how autistic children show a rapid growth in cognitive ability when an animal, usually a dog or a horse, or a certain type of person,  is introduced into their life,  somehow something is stirred in them a spark lights a flame which continues to burn and burns  most brightly when they are in the company of this being. I don't pretend to know why this happens but I do have a theory.

 Since all autistic children have heightened senses then it would follow that they would also have an ability to communicate on a deeper level without words. That is to say they can read the vibe or aura of a person or animal and are able to tell almost immediately if they will be happy in the company of the animal or human. I mean we all sense atmosphere when we go to a restaurant or a theater or maybe a party, we can all of us sense if there is a good or bad feeling in the air. Autistic children to me are able to separate the wheat  from the chaff in the mere blink of an eye. Of course woe betide you if they don't feel good or comfortable or safe in your company.If my son does take a dislike to some one it is not necessarily for ever he can be won round but his fight or flight instinct is certainly on full alert when some one new comes into his life.

When he was a baby of about 11 months a friends dog stuck their head into my sons carry cot and barked very loudly.  It shocked my son and took him a while to settle. Ever since then he has had a problem with dogs,  panics when he see's them,  chastises me for not warning him that a dog is walking in our direction. I made the big mistake of trying to explain to him why he felt like this when he saw dogs,  thinking,  if he was to reason it out he might start to feel less afraid off course the complete opposite happened. He changed the story from being barked at,  to being bitten when he was a baby. I embellished his experience if you like and he reveled in it. By trying to make things better I had made things worse. It may of helped him understand why he was afraid of dogs but it went no way in helping him get over the fear. The reason gave him a get out clause it meant he could be afraid with impunity.

Eventually with the help of a friend, who had a fairly placid dog,  we were able to desensitise him,  he was able to go for walks and stroke him,  generally get relaxed around a dog in close quarters. It did not go all the way to rid him of his fear,  but it certainly helped a great deal. Now my son can talk to himself and calm himself down when he see's a dog approaching . But he is still much more influenced by humans ...

Sixth Birthday

The first five birthdays of my son's life where odd affairs, he did not show any signs of actually understanding what was going on. He did not know for example that a present was something to be opened,  and that before it was opened the contents were to be anticipated,  that ones heart was to beat a little faster in this anticipation. He fared no better at Christmas, it was his sixth Christmas though when things began to change. He spent that Christmas with his favourite cousin and her obvious excitement was I am sure infectious almost as if she was teaching him how the whole present thing worked. She is almost two years younger than him and was just as excited opening his presents as she was her own. By the end of the day he seemed to have at least grasped the concept,  also he got some presents that he really liked,  and as it turned out wanted.

His birthday falls a little before Christmas so it was the following year his sixth birthday, six months into our new life, that again with the connection he felt with another child, also a girl, he seemed to finally understand what was going on. Approaching his sixth birthday I really did not know what to do and it was purely by chance that a German girl in his class invited him to her house for a cookie making party which coincided with the evening of his birthday (her parents were working in Scotland for a two year contract) It is tradition in Germany to do this every year friends and family gather and make Christmas cookies, the girl in his class had taken a shine to my son and he had also formed a bond with her so he was looking forward to going. I prepared a birthday cake for him to bring with us and explained when we got there what day it was. I think they thought it a little odd that on such an important day I had not arranged anything else but they kept there thoughts silent. As he had said nothing about his approaching birthday and shown no interest in the fact he was going to be six I just did not have the heart to make a formal celebration on the day,  but as it happened it was arranged for me.

Another tradition in Germany is to have the child celebrating their birthday sit on a chair while the grown ups lift then in the air and everyone says something,  I can't remember now what. After making the cookies and decorating them, to round of the evening the father of the girl asked if we could do that with my son. "Yes!" I said,  by this time,  he was very much in the party mood enjoying the atmosphere and the company,  feeling very secure. The act of being lifted and the obvious excitement of everyone around him responding with smiles and laughter some how cemented the day in his mind. "This is my birthday" I think he thought "mine" We both left that evening enjoying our respective warm glow's."Its my birthday" my son said ...

Living with Dad

The experience visiting his mother, although a heart wrenching one, was invaluable,  it taught me some important lessons. I could see that taking my son out of his comfort zone could be very traumatic for him but he did recover,  he had the emotional 'where with all' to bring himself up. His mother obviously had no clue about autism and by all accounts she was not going to do anything about learning more. When we did finally talk about our fateful visit her first words were. "Well this is not going to go away" bearing in mind,  that he was now nearly six and he had had his diagnosis since he was three and six months,  and that he was diagnosed when we still all lived together. Her seemingly naive and ignorant approach was wholly incongruous. This all was enough proof for me to lay down some ground rules about seeing his mother,  I felt it was very important he maintained a relationship with her,  but I knew I had to some how protect him from the truth.

So until he was old enough (probably I was thinking around 16) he would not spend the night with her unless he asked to do so and she was completely prepared ie;she had the food he liked, she lived in a quiet house and she had things for him to do.  As far as my son was concerned,  he recovered from his ordeal and although he never said it at the time,  I think he felt living with his dad was the very best option. I have heard other parents talk about how they know what their children are thinking and even sometimes can communicate with them telepathically. What I gleaned from my son was that he was shocked at how much of a stranger his mother had become and also he had recognised her ability, intentional or not, to some how block his learning and perception. In short, her obvious frustration at his autism caused his mind to short circuit, again I have no proof of this but it seems to me, that instead of guiding him she was trying to lead and control him to a better understanding and perception of his young life.

Of course the perpetrator,  would never own up to such behaviour. That would only reflect badly on them and also shoot holes at any doting mother image they were trying to portray. It is hard not to be bitter,  but that does not serve any good purpose. When all said and done my son loves his mother and it is unconditional .Very lucky for her I am thinking,  with a bit of smoke and mirrors I can still make her seem like a devoted mum who has his best interests at heart ...