worst case scenario

Warning: This post contains some traces of denial, in spite of my intentions to have dealt fully with this issue in previous posts.

Take it one day at a time and don’t look too far ahead. Good advice for any parent, especially an autism parent. It was not what I wanted to hear, however. I wanted predictions. I wanted to be told, of course he will talk, of course he will go to mainstream school. I wanted to know that he would be indistinguishable from other children. Really I just wanted him to be happy, but I saw all those things as prerequisites for happiness.  Once I had that reassurance I would be able to concentrate on helping him in the present without all this worry about the future.

When the Speech Therapist told me about non-verbal children who go to school with their books of communication pictures strapped to their bags, I  nodded and smiled, but I was horrified. Why was she telling me this? And saying it like it was good news? She must be crazy.  Not talking was not an option. I was not ready to make the leap required to imagine that these things might become a part of my world. In a very short space of time I have become completely at ease with these things. We are absolutely rocking picture communication, as well as makaton signs and I would not be without alternative communication. To me it’s not alternative, it is communication. My son can tell me stuff – it’s awesome. In fact I sometimes forget that other parents don’t have to regularly spend an evening sorting through laminated pictures of people having baths and stories and brushing their teeth.

But I have been here before, or somewhere like it. I should have known better than to go into a panic about imagined worst case scenarios. My daughter has Hypermobility Syndrome (Her diagnosis is actually EDS Type III but people tend not to have heard of that). By the time she was diagnosed I had heard about people with EDS ‘ending up’ in wheelchairs. I hate that expression, it sounds like once you have ‘ended up’ in a wheelchair nothing further is possible. I was determined that whatever else happened she would not ‘end up’ in a wheelchair. It was the worst that could happen. And it would not happen because I would simply not entertain the idea.

Well I was wrong on both counts and I even find it slightly hilarious that I used to think like that. She uses a wheelchair almost all the time, and it is by no means the worst thing that has happened to her. The last few years has been like watching her body crumple from the impact of an ultra slow-motion crash with everyday life. She downgraded her dreams one by one, until even the downgraded versions were ridiculously out of reach. It would take her the whole day to get up and dressed. To my mind the way out of this was positive thinking; set some goals, work out the steps to achieve them. I became increasingly frustrated as she refused to engage with this version of how things would go. She would become animated about new ideas for how to style her extraordinary hair, but new ideas for college courses left her flat. Eventually she said: I am already trying as hard as I can. have to live my life now, and I want to enjoy it. I don’t want to spend my time thinking about a future that may never come. And my favourite quote: it takes all my energy just being a bum.  I didn’t like it but I had to accept that taking it a day at a time worked for her in its own way. She is certainly one of the most vibrant people you are ever likely to meet, and she has carved out a life that is full, joyful, and very different from what either of us imagined. I thought I had learned a valuable lesson from all of this, but it seems I had to learn it all over again for Leo. Hopefully I have managed it a bit quicker this time around.

I faced some of my fears for Leo when we visited a garden centre at the weekend. Daddy was looking at greenhouses for an extended period and we were trying to entertain ourselves, first with the water features (a bit too fascinating – careful Leo I don’t fancy paying for a broken one), then the micro pigs (I loved them but Leo was firm in his total lack of interest). Finally we compromised by looking at the carp pond. I heard a voice behind us, very loud and confident, sounding as if he was in the middle of a conversation with somone: Hello my name is Edward and this is my mother Genevieve, what is your name? It was a young man aged between about 16 and 19. It took me a few seconds before I realised he was talking to me. He wasn’t making any eye contact so I still wasn’t sure I was supposed to answer. I hesitantly introduced myself and my sons. He made some more comments and asked some questions; do we have pets, does Leo go to nusery, does he have any nicknames? He looked steadfastly at the water the whole time as his mother stood alongside him. She smiled and made some friendly comments of her own. I was impressed by the way she gently supported and guided him, whilst letting him be himself. I hope I am not being too presumptous by thinking that he was probably autistic. We had a pleasant if unconventional conversation until Leo became agitated and we had to leave. Putting aside the issue of speech, this was my worst fear, a son who was visibly autistic into his teens. And yet he seemed happy, his mum seemed happy. They looked like they were having nice lives.

In my ‘about’ section I say that I do not know what severe autism means. The reason I say that is that I think it is possible for someone to be severely affected without that being obvious to others. However, when people ask if Leo is severely or just mildly autistic I think I do know what they mean. It’s about visibility. When he gets older will you be able to tell? I still don’t know. But I do know my goal is not to make him fit anyone else’s idea of normal at the expense of his happiness and ease with himself. I want him to be happy, I want him to make his own choices. I want him to live a life that has meaning for him. That may be a conventional get a job, get married kind of a life or it may not. These are vague goals I admit, and I hold them for him very loosely. But the only way to get there is a day at a time.


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