Changes

This Wednesday marked two years since our son was diagnosed as being autistic. Much has changed in those two years, not least the tremendous progress my son has made. Other changes include a better understanding of why to keep the child lock on the car at all times, the number of public places we can safely visit and the amount we spend on frozen ice pops per week. Perhaps the biggest difference in those two years has been how both my wife and I have changed as people.

Parenting changes you. How could it not? I think we were ready for the changes both to our lives and the people we were when our first child was born. We were not prepared for the impact our second son would have. If anything, I was more blasé about his arrival than my first son. Having proven to ourselves we could do it once, we felt well placed to face the arrival of another. Just not the arrival of autism in our lives.

Two years on, our whole family is still adapting and still learning to embrace the changes to our lives. When I read back through old blog posts I can see that I have come a long way and have, I think, become a better person. Sometimes I have my doubts. My wife finds it difficult to talk about how autism has changed her, even though it’s obvious to everyone around her that it has made her an even more special person than she already was.

I decided, for this week’s blog post, to ask readers how having a child with autism had changed them. Perhaps in the back of my mind I was hoping that my wife might recognise some of those changes in herself and, at the very least, realise she is not alone. The response was fantastic. So many of you took the time to write, some at length, about the changes you had experienced and undergone. I’d like to say a big thank you to everyone who wrote a response.

Reading through your thoughts on how autism parenting has changed you, there is an over-riding sense that it has made you a different, but better person.

For Amber, the more pertinent question was, “How hasn’t autism changed me?” She goes on to say: “I study, research, and seek out new ways to teach. I went from being a parent that simply expected things from my child to a parent that was willing to put in the work and so I rejoiced each victory he had with him. I went from being a mom that ‘wanted’ to a mother that ‘did’. I have become stronger than I ever thought possible and braver than I knew I was capable of. ” She owes all this, she says, to “my beautifully perfect, imperfect son.”

So many of you commented on how you had developed, as Anita Higgs puts it, “patience & compassion I didn’t know it was possible to have.” Lianne wrote that: “I feel that I have become much more patient, not only because for my son I have to as he needs extra time to process information he is receiving, but also since I have learned how difficult it is for him to understand the world he is living in.” Shells agrees: “its been a time of huge growth for me as a person. I have totally turned around the way I look at parenting my children. I’m so much more open-minded.”

Hand in hand with this goes a more open, less judgmental way of seeing the world. This was best summarised by Beth, who said: “Before I saw what people couldn’t do – now I only see the potential of what they could do. The world seems a lot bigger and far more interesting – and of course the greatest gift of all that autism has brought to me in the supremely amazing little creature that is my nephew – the entire person that he is has taught me that I can love someone this much. I no longer judge people by the behaviour of their children or judge adults by what I may have considered odd behaviour in the past. I visualise the spectrum as a rainbow – and when I meet people now I enjoy learning what part of that rainbow they are walking on. And that is an amazing way to meet people.“

For many, like miriamgwynne, a need to spread a message of autism awareness has become important. She says: “I have much more determination to fight for what is right and defend a child who can not defend himself and I have become a reader and researcher of a subject I once knew little about.” Often this is in the face of what Lianne calls the “sheer ignorance” she has confronted. Worryingly, but perhaps not surprisingly, this ignorance often includes schools and other agencies. As a result, parents like Hayley Thomas are now, “outspoken, knowledgable and will question professionals.” Go Hayley!

Many wrote about their “realignment of expectations” and how they had adjusted their expectations of what life had in store, both for them and their children. That phrase comes from ASD Dad, who also says: “Having a son with autism has changed me in many ways, but one fundamental shift is in the way I prioritize my life. Whereas in the past it was easy for me to get sucked into obligations minor and major, often at the expense of myself or my family, now the path is much clearer: my son comes first.” Life has a different pace for many who commented, like Lianne who said, “life has changed and we are much slower” and Shells, who said: “we are very restricted in our activities” but went on to add, “My son’s differences have set us apart for sure, but I don’t see it as a bad thing, but a hugely enriching thing.”

Some felt able to share some of the darker aspects of autism on their lives: the emotional difficulties, the stress, the frustration, the damaged relationships and the financial impact. It can’t be easy to write about these things and I thank those that did. One thing that was obvious in these comments was that they came from selfless, caring, devoted parents. I don’t know if that’s a change, but it is certainly a list of priceless qualities.

Back in 2009 a Daily Mail article made the provocative announcement that ‘Having an autistic child wrecks your life.’ I don’t think I’ve ever agreed with a word written in the Daily Mail, but there might have been a time when I’d have found myself nodding to this. Surely the awful realisation that your child had a life long disability, the day to day challenges, the shattered dreams, the inevitable marriage problems, the social implications would all take their toll?

But despite these things, this attitude does not match what my experience has been. My life has been changed, but not wrecked, set off course, but not derailed. I don’t know if my life is better, but I am a better person. And it would appear that you feel the same. How else can you explain the comments sent to me this week such as:

“Its been a long road but the journey along it is continuing and getting more interesting. My life has changed for the better.”

“I truly became who I have always wanted to be.”

“I’m very lucky.”

“He’s different. I’ve always liked different. That hasn’t changed.”

I cannot do justice in my own words to the breadth and brilliance of the comments you have sent me. So I’m not going to try to. Instead, I want to share them -all of them- in a series of posts. Over the next week, I will post the comments in full, starting tomorrow. I’ll leave them posted for a short time, before transferring them to a page I have called ‘Changes’.

I think they are well worth reading and hope you will get as much from them as I have. Please keep them coming- I will share them. I hope that, as you read them, you will reach the same conclusion as me: the world is a better place for having our children in it, and we are better people as a result.