The day the world changed forever

This post is about a specific day in my autism journey that changed everything. It was a very tough day, one of the hardest of my life, but it was also one of the most important which ultimately meant we could really start to help our little boy. I guess, without wanting to sound too wanky, it was the day of an epiphany after which my world would never be the same again.

The background

When the Bean was 2 years old he started nursery and it seemed to go well at first but over the next 6 months or so the problems started. The staff at the nursery were starting to get more and more worried about his development and his behaviour. He didn’t display behaviour problems in the normal meaning of the word, i.e. aggression, but there were concerns about his danger awareness, safety and just generally the way he was. In addition to his odd ways his language was delayed and he was not catching up. His nursery were concerned enough to get the early years’ service involved and they managed to get some inclusion funding so Bean could have a 1-1 supervisor when he was there.

During this time Zoo was born which added to the general chaos in our lives. Whilst my wife was starting to get seriously worried about Bean, I was still clinging to the notion that he would be ok and would just catch up. The autism word had already been used but in my mind this was crazy talk. My son was not autistic! He just had a bit of language delay and was very “strong willed”. I convinced myself that he would be fine, I mean after all Einstein didn’t talk until he was 4 so it was all going to be ok. I even read a booked called the Einstein Syndrome which was about a group of kids who have language delay but go on to do brilliant things in engineering and science. Obviously this was what MY son had!!!

My wife, on the other hand, was sick with worry and knew that something was very different about our little boy. We argued about this many times. The problem is that the dynamic in our relationship has always been that I am the optimist and she is the pessimist. On many occasions in the past my optimism has been the more useful mind set, steering our decision making in the right direction. I’m sure my wife won’t mind me saying that my optimistic outlook is generally a bit of better guide for action than her pessimistic one. But clearly this is not always so and sadly this was one of those cases. I basically had my head up my arse with regards to the whole autism thing and convinced myself that my wife was worrying for nothing and perhaps suffering from a bit of post natal depression after Zoo’s birth. In my head the “problem” was with her not Bean. Writing this now I feel like a complete twat but that’s the benefit of hindsight.

The day it all changed

This particular day was the one where reality grabbed me by the scruff of the neck, yanked my head out of my sphincter and forced me to see what my wife had seen all along. On the day in question Bean was approaching his third birthday and was due to go to nursery for a morning session. His one to one supervisor was ill that day and my wife was busy with Zoo, hence I opted to be Bean’s supervising adult at nursery. So basically I spent the morning at a busy nursery with my son close up and in the presence of around 20 other kids of his age.

It was this experience that shattered my illusions completely. It’s really quite hard to put into words just how different Bean was from his peers. It was almost like he was a different species. Sure he looks like a perfectly normal little boy but his behaviour marked him out dramatically from all the other kids. I think part of my problem was that Bean was my first born and so my experience of how kids “should” be was limited. But seeing these “normal” kids playing together, interacting, talking to me, coming up to me and showing me what they were doing, being interested in me in a way that my own son rarely was really hammered home just how different Bean was.

But it wasn’t just the level of interaction it was the very way they played. The other kids were all engaging with the wonderful activities that had been laid out by the staff at nursery, joining in with songs, doing craft activities etc etc. None of this was of any interest to our Bean. He was lining up animals, tapping chairs in sequence, crawling under chairs, doing a bit of spinning around and climbing on things. Sure some other kids were doing these things from time to time as well but this was ALL our son did. This was, of course, what he did at home all day so it was no shock per se, but seeing him play alongside normal kids and seeing just how limited, unimaginative and repetitive Bean’s play was in contrast, really hit me hard.

I remember looking around during that morning trying desperately to spot the other odd kids so that I could convince myself that it was not just Bean. The internal dialogue was along the following lines: “Ok so he’s a bit odd but there are bound to be some other similar kids. I’m just focusing too much on the negatives, let’s have a little look around and observe these other children. There must be some more like Bean and that will mean he is ok!” Sure, some where quieter and more withdrawn than others, some were busy some were calm, some occasionally did odd things but none of them were even close to being like our boy. Basically he stuck out like a sore thumb. Even mustering my most irrationally positive, rose tinted, silver lined perspective  I could not even begin to convince myself that Bean was like any of these other children.

What was most revealing was very little of this was to do with his language delay. Up until now this was what I had focused on, I was sure that if he could just catch up on his talking then everything else would be fine. The experience that day though told me that the language delay was only a symptom not the cause. It was clear that Bean processed the world in a different way to most kids, he wanted to do different things to other kids, he played differently and interacted differently in short his brain was just different. So on the outside my boy looked perfectly normal but it was obvious that the most important organ in his body, the one that controlled everything else was not the same as other humans.

What was worse though was that it was also absolutely clear that he was not happy in that nursery setting. At home our Bean was a very happy and content little boy but at nursery I saw an anxious child, who was stressed and unable to cope. As his brain was different it became immediately obvious that a mainstream educational environments, that was focused on delivering learning to normal neurotypical kids, were clearly not going to cut the mustard. Even with a 1 to 1 supervisor it was clear that this was never going to work.

The aftermath

So this was the day that I accepted my son had autism. It took a few days to process the information and finally be able to say the words out loud but in reality I knew that it was the case as soon as we came home that morning. I don’t mind admitting that this caused be to cry several times. Firstly I was worrying about my son and secondly I realised what a dick I had been to my wife. She had been telling me for months that something was up, here was the woman who spends every day with Bean telling me something vitally important about my own son and I dismissed it as post natal depression or just her “worrying”. The feeling of shame was crushing.

A few days later my wife and I had a heart to heart over a meal and a bottle of wine. It was one of those conversations that was a permanent game changer and for the better in this case. One of our strengths as a couple is that we have always been pretty good at talking things through. And whilst I can be a bit of an arrogant twat who is “always right” from time to time I also will admit when I am wrong. So I apologised to her unreservedly, more tears were shed. She expressed how lonely she had felt over the last few months, how frustrated she was with me and about how angry she was with me. More tears. I told her how utterly guilty I felt about letting her down but assured her I was on board now and would never fail her in this way again. More tears but this time they were good tears.

The way forward

We agreed then and there that my guilt and her anger were luxuries we could not afford to indulge. What was important was that we had a son with significant special needs and he had to be our focus. Dwelling on past failures was not going to do him any good. Me wallowing in guilt or my wife punishing me for my fuck up was not actually going to help Bean. These things needed to be put in the past and we needed to think ahead as to how we were going to deal with this situation. So she forgave and I stepped up the mark and began immersing myself in the world of autism. From that day we have focused our efforts on the bean and whilst there have been some minor disagreements over the ways to proceed we have tackled the problems together as a couple. The day described above was very painful for me, but it was perhaps the most important day in our autism journey as it was the day we started to really deal with things as a family together.

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2 thoughts on “The day the world changed forever

  1. […] punctuated, for me anyway, by one “penny dropping” life changing day that I have written about before. We had both accepted our son was autistic about 9 months before he formally got the diagnosis so […]

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