White knuckles

Well it was a tough day but we got through it, I exaggerate .It was a tough 45 minutes, let me explain. I had already primed my son for his first trip on a bus alone.First we took the journey together with me pretending to be an innocent by stander ,occasionally pointing out land marks on the way and finally showing the stop he should get off. The next step was to see him on to the bus then wait at the other end to make sure he got there in one piece , this he did with aplomb. he actually took it a step further and waited for me at our front door.

Full of mixed emotions I could do nothing but kiss his head and proclaim how proud of him I was. It has made me reassess his progress and understand better the pigeon holing aspect of his character ,seems each task is approached with it's own set of emotions and that his processing of the semantics of any given task are stored neatly in his computer like brain .

 Over the years his confidence in his abilities has grown and so he has always been willing to re approach  something that he has found difficult in the past , it seems he is able to fine tune his personal assessment of his abilities and with encouragement (important) he will try again. A good example is tying his own shoe laces . I had always bought him shoes with Velcro fastenings (something that is proving more difficult as his feet grow) but peer pressure, and his obvious sense of style led him to asking me to buy him converse lace ups no less. He struggled with the laces for many months but he persevered and eventually he learned to tie them. He was careful not to wear them to places where he might have to remove his shoes .

Which suggests to me a much deeper cognitive understanding than I had thought he had. Like any human there is a lot going on in his mind the problem he has sometimes, which is also a benefit, is steely like focus .Any time I interrupt him from the particular task he is focusing on he can get quite upset, needless to say  his calm returns quickly.

As he grows and learns it seems his depth also increases and I am discovering that by pushing him and showing him he can easily grasp what it is I am trying to teach him he can eventually complete the task (recently he made toast ) .I just have to repeat my self many many times before he finally understands what it is I am putting across. Experience is key in all learning, feeling an emotion for the first time is daunting but returning to that emotion and recognizing it,s effect can lessen the impact.

Age 12 Negotiations

My son is now 12 years old . We agreed that at this age he would officially move into his bedroom, after much discussion !  I was trying to understand his need to continue to sleep in my bed even though we no longer slept together and we both agreed that 12 was a good age for him to sleep in his own room . I have  slept in his bed in his bedroom since he found the confidence to sleep alone , that was about a year ago. For the life of me I can not truly fathom the reason for this. I am pretty sure other boys of his age crave the privacy of their own room and go to their rooms at the earliest opportunity. It has created a situation in our house where neither of us really have our own space.

For most of my son's short life he has had trouble sleeping , to him it would appear it is an activity he can sacrifice for other pursuits. It took many years to establish a routine for him , my understanding of this is that he had no problem being asleep ,just getting to sleep was his greatest challenge. If you have ever lain in your bed feeling very tired but unable to fall asleep you will have some inkling of what my son goes through on a nightly basis as a matter of routine. I think the feeling of loosing wakefulness and gradual slip into sleep genuinely frightens him. Our bedtime routine is my attempt to make the transition into sleep as calm and soothing and undaunting  as is possible.

          As he grows older he becomes better at coping with the feelings he experiences, whilst falling asleep. And on nights when I am not with him , (I have managed to leave him for a total of 3 nights, he slept very successfully at my brother and sister in law's house)  when he is forced to go to sleep on his own, he has managed well but I can sense his relief when I return and we go back to his routine. He also does not like to fall asleep in complete darkness ,not unusual for any child.

As the years have passed in his so far short life I have thought long and hard about his sleeping habits, and although it appears to me that the act of falling asleep is fearful to him . Actual sleep is something he welcomes. He has many dreams which he is excited to tell me about . Very gradually, he is learning how to cope with the process of falling asleep on his own. He is better able now to reassure himself that he is safe and that no harm will come to him should he allow himself to succumb to sleep. I do feel he is still fearful of falling asleep but the brave lad he is ,has taught himself a coping strategy.With a little help from his Dad.

Alarm Clock

As part of my drive to encourage more independence in my son I have bought him an alarm clock. We had a practice run , I showed him how to turn it off and told him it was only for school mornings or days when we had to be up early . The idea being that he will get used to getting himself out of bed . Well the first morning was really quite dramatic, I off course was expecting it to go off so was waiting in anticipation for his reaction.

The sound of the ringing was drowned by my son shouting "Oh my God Oh my God ". As he dived to grab the clock and turn off the alarm. To his credit though he did not complain and it was not until the third day, of these rude awakenings, that he asked me why I had decided to get him an alarm clock." Well " I said "now that it is getting close to you going to high school , I thought it would good for you to be more independent, getting up in the morning on your own , Is part of that"

"Oh " he replied "OK" and said nothing more .

I know my son wants to grow up and do grown up things, I know he is excited about going to High school and I am counting on his enthusiasm for this new time in his life , to inspire more independence in him. I am hoping he will be swept along on the tide of all of his peers and their first steps into young adult hood . But it is definitely not a case of sink or swim ,he will receive a lot of support.

At the High School he will attend they have a special department set up for  children such as him. At present his head teacher is applying for a tablet for him to use at school. He will be allocated a 'buddy' to help him .I am sure it will be quite daunting for him to have to pack up everything every hour or so to move from class to class. There is also a quiet room where he can escape too if it all gets to much and it will be explained to him that he can do this at any time. The amount of pupils at the High School is about 5 times the amount at his primary.That in itself gives my son a challenge along with all the other things he will be trying to cope with.

I am confidant though, that I will be the one having a panic attack before him.

Pondering the future

I find myself of late pondering the future ,not mine you understand but my sons ,having negotiated most of primary school with few incidents, my son is now in his last year. He will begin secondary in August of 2014. If I don't take him to the secondary he will have to get a bus .So we are going to have a few practice runs, where I will gradually introduce him to independent travel. First I think I will travel on the bus with him looking at the various landmarks,then he can do the trip himself. I remember myself at that age worrying when I was on the bus that I might miss my stop.So this is likely to be a very interesting time.

As I am a lone parent,( as we are now called officially ) and only work part time, I often think about, my son's ability to be independent. I would like very much to be able to work full time but this is not looking likely for at least the next year or so. At present on the school mornings,  although I do not have to dress him any more,  he takes a very long time to dress himself unless I am constantly encouraging him . To think of him doing this alone, because I would be starting work around 5 or 6 in the morning , is inconceivable to me. Preparing himself breakfast is another hurdle to overcome. The one constant in his behaviour is his habit of going off task. He has overcome so many things , he tries new foods, he is less afraid of cats and dogs , his writing improves on a weekly basis. But teaching him to concentrate on one thing and one thing only until that thing is done is proving to be very difficult.

It is not as if he does not have a sense of urgency, because he most definitely does. When there is something he is interested in, a new Dr Who, a new bop it toy, an opportunity to skype with his mum he is very motivated. But he can not seem to muster that motivation at will for some of the more mundane tasks in life. We are all of us after all doing something at some point in our days as an end to a means and the more mundane activities in life are  unavoidable , but sadly necessary.
I am at a loss as to how to convey to him that, his dressing slowly has a direct effect on what time he gets to school. Almost as if he see's the things he does as little play-lets, which he subsequently pigeon holes in a place in his brain .The more interesting play-lets he summons in to his mind at will when he is involved in a less interesting task, ie getting dressed for school. This can then lead to him laughing loudly with a look of satisfaction on his face."Why are you laughing " I will ask.
"I am laughing about "..................... and then he will relate something to me that may have happened weeks, months, or even years ago.

If he has a reason for anything that he is doing he does it with great focus, if he perceives what ever task he is on as important then the task gets done diligently. I am hoping that as he enters  puberty and starts to take more of an interest in his appearance (not just dressing up) perhaps then he will be more independent dressing himself in the morning. Only time will tell .

Life with flow

We all of us wish for our lives to have flow ,I would bet that the majority of the working population ,arrive at work within one or two minutes of the same time every working day.If for some reason this routine is interrupted ,for example: bus breaks down or an accident on the road ,our initial reaction is one of panic , tainted with a sprinkle of anger, flavored  with frustration. Now all of these are unsettling feelings and in an autistic person they are greatly heightened .In an autistic child  the emotion is magnified even greater.The trick is to learn to cope with these emotions and go on with our day unruffled.

As my son gets older , he is becoming better able to handle the little upsets life puts in front of us ,but I have also noticed that I have been working hard to make his day go as smoothly as is possible. And not just for his peace of mind .I have become so adept at this that I find I am following routines as much as he is. It was at this realisation that I decided I needed to shake things up a bit .So I have tried from time to time to do the unexpected .Go swimming in the morning instead of afternoon , go on a Saturday instead of Sunday serve pizza on Tuesday (normally pasta night) instead of a Monday, or my god ! As well as a Monday .Not very radical you might think but for my son quite major events to cope with. I have been trying this for some months now and it seems he is learning to better cope with the unexpected. Although when I mentioned  I would like to change the supermarket we visit he actually pleaded with me not to.

Off course we are all very aware of how life does not always go the way we plan , and we all have our own coping strategies, whether we know it or not .Deep breathing helps me I find ,and also trying to find the funny side of a situation that has gone wrong. For my son though I am not entirely sure what goes on in his mind when things don't go to plan .I do know that he is capable of severe panic , but lately I have noticed he responds well when I ask him to calm down and just think for a minute. He has recognised the benefit of thinking through the apparent disaster (the swimming pool is closed; and so on) it improves how he is feeling calms his fast beating heart, he is I think realizing that Dad might actually know what he is talking about.

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 .