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.

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18 Responses to Changes

  1. Amber Perea says:

    It is so humbling to see my words on your page and I feel honored to be a part of this project. Thank you for allowing me to partake!

  2. neiley101 says:

    Reblogged this on theworldofneil and commented:
    I think we change but don’t really notice it. The ways we learn to cope and strategies we develop – that other parents don’t need – become the norm, and we move on. But gradually we change beyond all recognition.

  3. I’m sorry I didn’t post on the original page – partly it’s because I find it very difficult to post about how having an autistic son has changed me. I’m interested in the reasons why you didn’t quote any of the ‘darker aspects’ you describe? I think for parents like me, and perhaps (and I know this is controversial) particularly those whose child’s autism is severe, there is often great reassurance in reading about others who feel that autism hasn’t been a positive factor in their lives. Perhaps those parents asked not to be quoted directly – I think that’s what I would have done. To tell the truth, I feel a bit guilty about NOT feeling that it’s made me a better person.

    • B's Dad says:

      I think this is a very valid question to ask. I felt a responsibility to reflect the tone and content of the responses I got. Of the many replies, the overwhelming tone was one of positivity and a feeling that autism had changed them for the better. That’s what people wrote. Although the less positive replies gave their approval to be used, it felt slightly intrusive to use their names or quote from them directly. This was not an attempt to censor or hide or spin out some deliberately uplifting message. I think by referencing them it maintained the balance that reflected what I had received.
      Of course, the responses are probably positive because it’s easier to write about the good stuff. I wonder how truly reflective of autism parenting these responses were? I mentioned in the post that my wife would not talk about it- not even to me. Perhaps she represents a more silent majority of people for whom autism has a bad effect. You’ll also notice the absence of my own thoughts on how autism has changed the person I am. I wanted this post to be about what other people felt but I would say that whilst I have felt the positives, I also know the negatives.
      I have always wanted ‘Life with an Autistic Son’ to be an honest reflection of what autism is like, and have never tried to hide the downsides. I totally agree with and understand your assertion that there is reassurance in reading about shared difficulties. I think there’s lots of that to be found on these pages! Perhaps the ‘Changes’ post and subsequent posts and comments will encourage people to share some of the less positive aspects. I will share them.
      One thing that I would add is that, as a reader of your blog, I admire your apparent tireless drive to help your son, your pride in his achievements, your ability to ask questions, face challenges and write about it all intelligently. I don’t think you need to feel guilty about any of those things.
      Thanks for taking the time to write.
      B’s Dad x

      • sue philcox says:

        Thanks for responding in such a detailed and thoughtful way, and for the comments about the blog, which are much appreciated. I think you’re right – it is easier to write about the good stuff. If I look at my own blog, the positive posts far outweigh the negative ones. And sometimes I feel that this gives a skewed picture – it makes people think I’m marvellous and spend every waking moment working with my child, whereas in reality I’m often ratty, anxious, impatient and let him play on the iPad far more than is healthy. I think all parents (and maybe mothers in particular) feel guilt about their parenting in one sense or another but somehow when that child has SN that guilt comes from a darker place and is much harder to admit. Your wife and I need to meet for a coffee. Or a gin!

      • StephsTwoGirls says:

        I think it’s true that we all feel guilty far too much. Nobody is the perfect parent though; no two ways are the same and probably both of them are as right as they can be for your child as they are generally the best you can do. I think in my ‘changes’ I did quote the good and the bad, I never thought to separate them.
        My husband is also not keen on talking about it, or reading about others’ experiences. I think it’s maybe that final bit of not really wanting to accept it – yes he accepts our daughter has ASD, but he doesn’t really want it to be the case, so he’s keeping all the info at arm’s length and reading the bare minimum (that I make him 🙂 ). Mybe we should get mu husband and your wife together to have a non-chat about it ;). Alternatively, Sue can I come too for the gin please?!

  4. I wondered what I would write in response to this question and I couldn’t think of anything. I was so very young when I had my son, and at the time in an abusive marriage. Now every part of me has changed, but which parts are due to parenting a child with autism, parenting children without autism, recovering from trauma, maturing into adulthood, meeting a wonderful new husband… it’s all muddled together. The only thing I can say with absolute certainty, which is as the result of having a disabled child, is that I don’t trust social workers as far as I can throw them. They have been ubiquitously bloody awful. AND I’ve met some fantastic people along the way, especially parents of special needs children – and that’s been wonderful.

    Thank you for taking the time to do this post. I really appreciated reading it and the comments.

  5. miriamgwynne says:

    Humbled to be part of this project.

  6. Elaine Fortunka says:

    Bit humbling just like mikes heartfelt comments

  7. Pingback: How Has Autism Parenting Changed You (Part One)? | Life with an Autistic Son

  8. Pingback: How Has Autism Parenting Changed You (Part Two)? | Life with an Autistic Son

  9. Pingback: How Has Autism Parenting Changed You (Part Three)? | Life with an Autistic Son

  10. Pingback: How Has Autism Parenting Changed You (Part Four)? | Life with an Autistic Son

  11. Pingback: How Has Autism Parenting Changed You (Part Five)? | Life with an Autistic Son

  12. Pingback: How Has Autism Parenting Changed You (Part Six)? | Life with an Autistic Son

  13. Pingback: How Has Autism Parenting Changed You (Part Seven)? | Life with an Autistic Son

  14. Jackie says:

    This series has been wonderful to read. I know it’s too late to contribute but I want to write these thoughts down here while they are in my head. I love your blog so keep it up!

    Autism made me realize that things don’t just happen to “other” people. Autism has shown me that “stuff” happens and it doesn’t mean anything else – I didn’t cause it, my husband didn’t cause it, God didn’t punish me for something I did 20 years ago, and he’s not “blessing” me now. It just means that life is messy and no one gets off scot free. In a sense, autism has been liberating because I no longer sweat the small stuff. I don’t worry that my nine-year-old son has never had a vegetable in his life and can’t ride a bike. Life still goes on. When I hear other parents discussing the fact that little Suzie feels bad about herself because she didn’t get the lead in the play, I want to roll my eyes but then autism also reminds me that I’d be them if I wasn’t me. Finally, I have learned that “normalcy” and “perfection” are really an illusion, and if you scratch the surface of any family, there’s a “special need” lurking in there. We are not as alone as we think.

  15. Pingback: How Autism Has Changed Me | Life with an Autistic Son

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