My turn now. All week I’ve been sharing readers’ responses to the question, ‘How has having a child with autism changed you as a person?’ It was never my intention to share my own thoughts on this, although I touched upon them in the ‘Changes’ post.
But as I read through and shared all the fantastic comments this week, I found myself considering my own question more and more. I also found myself asking, ‘what could I possibly add that hasn’t already been said?’ So many of you nailed what it is to be the parent of a unique and exceptional child with autism, and the effect it has had on you. If you’ve read them I’m sure, like me, you found yourself nodding in recognition. I also found myself greatly admiring the positive outlook and hope that so many people have obviously found.
But there were one or two comments that really stood out for me, and they were not the positive ones. A blogger I admire raised an interesting question about the nature of what had been shared in these comments, asking where were the comments that shared the more difficult, less celebratory impact of autism? This struck a chord with me and made me question how representative a sample of autism parenting those responses were. Where were the parents for whom autism had dealt a devastating blow? Are we to believe that autism has a wholly positive effect, or is something being left unsaid? Is it easier to share the positive effects than the negatives?
Let me make one thing really clear: I believe that having a child with autism makes you a better person. All those contributors were, undoubtedly, right to suggest so. I’ve seen it in the people I meet, the blogs I read and the accounts that have been shared on this site. I do however, think that the more difficult, detrimental effects of autism were less well represented. I understand this- who would want to share such pain? But I do think that, if we are to be honest about autism, then it’s important to share all aspects of the truth.
So here’s my truth: I have experienced some of my lowest ebbs in the last five years. I have experienced despair and I have harboured feelings of anger. I have felt bitterness towards my child and I have resented the life I have with him. I have handled situations in ways I regret and I have, on more than one occasion, been a total knobhead to those around me. I have shown weakness when my family needed strength. I have struggled on some days from the moment my eyes opened until the moment my head hit the pillow. I have grown fearful and anxious about the future and unable to look forward. There have been periods when I felt my heart breaking every single day. I have felt the hopelessness and the guilt of a parent who does not know what they are doing.
At times like this, I have not liked myself very much.
So is this the person I have become? Is this what autism parenting has done to me?
Of course not. Whilst all of the above is true, it is by no means the complete picture. In fact, it’s just a small part of the person I have been. More importantly, these negative feelings and characteristics have become less prominent as time has passed. I think that, increasingly, I share the qualities that have been the subject of most of this week’s posts. Autism has brought me patience, strength, tolerance, focus, determination, gratitude and a whole host of other qualities that modesty prevents me from dwelling on. And of course it has brought the most amazing child into my life. Like all those other contributors, I am a better person and I am lucky.
But people are complicated and emotions are complicated. I still have bad days.
I started writing this blog because I could not find books by people who were struggling with autism. If my blog had a purpose, it was to show that not everyone automatically knows how to cope with or embrace the differences in their child. If I was new to autism and reading these recent posts, I might not recognise some of the experiences described. I might even question how and why I wasn’t in such a positive place. Why wasn’t I a better person?
So this post is for anyone who is at the start of the ride. For those who don’t feel like a better person. I have not forgotten, nor will I ever forget, what it is like. I still struggle with my son’s autism and there are still days when I am most certainly not a better person. But those days are far fewer than they were.
As a teacher, I meet hundreds of parents. Some are brilliant parents and some less so. But I have never met the parent of an autistic child who I did not think was amazing. These parents have been given the gift of brilliance by their children. I am sure you will get there too.