I would imagine that guilt is something that heavily affects every parent of an autistic child. And I can say that with a fair amount of confidence, since I can’t remember the last time I didn’t feel guilty.
When Sawyer first started cruising the furniture and turned in to a beautiful little devil child, I felt guilty that he had made our summer holiday less relaxing for our friends. Like all my close friends and family, they accepted Sawyer for who he was and loved him unconditionally, but that’s easy for me to say now it’s being said with retrospect. At the time, when you’re living it and feeling the fact that your son isn’t acting like the other children his age, you just don’t have the ability to detach yourself from the situation and look at it from a reasonable perspective.
We’ve already talked about how I now look back on that holiday and realise I was seeing first signs of autism in Sawyer. You know that I can now recognise that the way he reacted to the sudden change of routine and surroundings was pretty textbook for autism. I can now associate his inability to keep still, sit or nap with sensory overload, and I understand that it must have felt completely devastating to his little 10-month-old mind. But would you like to know what I put it all down to at the time, bearing in mind that autism/ADHD had not occurred to me in any way? I put it down to the fact that I had gone back to work the month before. I put it all down to being my fault.
When I found out I was pregnant in May 2012 the guilt was overwhelming to the point that it completely clouded any feelings of joy or excitement for a long time. (Naturally I feel guilty for saying that. Are you starting to see how this works?). Sawyer was almost 2 when we found out he would be getting a baby sister, and I couldn’t fathom how I would manage to love anyone else as much as I loved him. Would I have to share my love out from now on? How would I possibly love my second-born as much as my first? I felt guilty that my first-born would have to share his parents, and guilty for feeling scared about how I would feel about my un-born.Of course when it came to it, it worked out just the same way it does for anybody who has more than one child – the love didn’t share out between them at all – but my heart got bigger.
Throughout my pregnancy, Sawyer couldn’t talk to us about how he was feeling, and he didn’t have the capacity to sit and listen to us explain things to him. He didn’t sit long enough for us to read any books about baby siblings, and he wouldn’t understand what a new baby gift was all about. Should I have taken him to more mother and baby classes when he was tiny? Should I have persevered and insisted he sit whilst I read books to him as a toddler? Perhaps I didn’t speak to him enough as he was growing, and that’s why he has such a speech delay. I spent a lot of time back then trying to work out what I did or didn’t do that had meant Sawyer was so delayed in some aspects of his development. It was confusing to me that he had hit so many milestones at around the expected times, yet his language and communication was so bad. I concluded back then that it had to be my fault in some way. I mean he was fine as a baby, wasn’t he?
Later, whilst we sat on that soul-destroying waiting list for diagnosis, my focus moved from how I’d managed to break my son by not reading to him enough, to what I had done during pregnancy that had made him autistic in the first place. I must have rattled a million ideas around in my head trying to make sense of why this had happened to him. I still enjoyed the odd glass of wine here and there throughout pregnancy with him, and I definitely ate soft-boiled eggs. Perhaps my baths had been too hot, or I shouldn’t have flown to Egypt in my second trimester. Strangely, I was so caught up in wondering how I had broken Sawyer that I sailed through my second pregnancy with relative ease. I acted much more instinctively, did what felt right for me and my body and didn’t spend (have) the time to do very much else. I just didn’t think that much about the fact that I was pregnant, and of course, I feel guilty about that now.
These days I have a very different relationship with guilt, but it is definitely still there, bubbling under the surface and attacking on the challenging days. And I find that guilt leads to guilt, so once it grabs hold of you, you’ll pretty much belong to it until something positive happens and allows you to make a break for it. For example, I feel guilty when Sawyer is invited to birthday parties because instead of feeling excited for him, I worry about how he will cope with the sensory overload. If the party goes well and he has a good time, I feel guilty that I doubted his strength and if it goes badly, I feel guilty that I allowed him to be put through the stress of it all. It has occurred to me (and by that, I mean it literally just occurred to me) that actually what I feel guilty about these days is that I’m making it all up as I go along. I don’t know if letting Sawyer play with Thomas toys all day is the right thing to do, or if I should encourage him to do something else even though he wont enjoy it. I don’t know if avoiding certain social situations is the right thing to do or if I’m making it worse for next time. I don’t know if I’ve done enough at school to ensure he is being afforded the same opportunities as the other children in his class. I don’t know.
I’ve come to accept that guilt is not going to go away, in the same way Sawyer isn’t suddenly going to stop being autistic. I’ve learned to cope with guilt by acknowledging it as a normal part of the process, and by looking back on all the things I felt guilty about that now seem laughable to me. My current battle is feeling guilty that I look forward to my daughter growing up Neurotypical. I look forward to normal parents evenings, play dates and birthday parties. I look forward to taking her to busy shopping centres without worrying about how she might react to the noise and bustle, and I look forward to having conversations that don’t have to revolve around Thomas the Tank Engine. I look forward to all the things that other parents take for granted, and I feel guilty for being excited about them. But I also accept that in a few years, I will look back on these feelings of guilt and I will smile about how I felt guilty for no reason.
And I’ll probably feel very stupid for assuming that a teenage daughter would be easier to cope with than an autistic son.