Life Changing … Not Life Destroying

There’s a funny thing that happens with medical practitioners when labels change. A thing that took me by surprise, and not in a good way.

You see, in the last few weeks, I have had the very strange experience of being subjected to what I will call ‘shallow caring’. This is a strange phenomena where medical people metaphorically put their hand on my shoulder and imply that I am living a life that must be difficult, impossible and life destroying. It’s a strange and slightly humorous situation that always seems to end with the suggestion that my children would be far better off with professionals (read teachers) taking some of the ‘burden’ of raising my children.

But I think the part of this that I find most amusingly irritating, is that some of these are the same professionals with whom I have had to previously work hard at convincing that my children actually needed help. The difference? Labels, not behaviours.

You see, both my children have SPD; my son is also profoundly gifted and my daughter J is probably gifted, but untested. The behaviours associated with those two diagnoses are not always easy to handle – particularly for my son and daughter. But neither condition, in my experience, is generally recognised as medically or educationally significant in Australia. So every accommodation, whether medical or educational has been hard-fought. Every problem has been minimised or mythologised away. It’s kind of bizarre.

With two new labels – ADHD and autism for my son, suddenly I’ve gone from the parent who ‘has it relatively easy, oh yes, maybe a few challenges’, to ‘she must be in a living hell’. It’s one of the strangest transformations I have ever witnessed. (For the record, the solution to both has been ‘put them in school’ except with a few really clued in professionals who ‘get’ my son and daughter).

But for anyone who does even a modicum of research, they’d know that these two sets of conditions have more in common than they have differences. SPD is not currently recognised as a separate diagnosis despite mounting evidence, but is listed as one of the characteristics of both ADHD and autism. And there is an extremely strong link between profound giftedness and autism (See James Webb’s book, or the many studies on behavioural and genetic links between high IQ and autism). In fact, it’s really hard, even for professionals, to tell the difference between SPD and either ADHD or autism. Ditto for profoundly gifted and autism and ADHD.

For me and my family, the two new labels haven’t really changed anything. There are a few new tools in our box on how to handle some situations that have worked better than previous tools. So more of a slight upgrade to a 1.1 tool-shed, maybe. There’s no life-changing refocus, no real aha! moment … because we’ve been dealing with the same sets of ‘behaviours’ for years (in all of us to some extent, to be honest). We just had different labels. It’s a shuffling of the deck.

Our childrens neurodiversity has been life-changing for our family, not life destroying. And this weird twist in our tale has taken me rather by surprise. And though I am a little annoyed by both reactions, I am also deeply amused that a label can so profoundly change people’s responses – even when there is no difference in the behaviour of my children.

I think these reactions we’ve experienced speak more to other people’s assumptions and preconceptions about what these different labels mean than to anything to do with our reality. My children are neither ‘destined for greatness’, ‘easy to live with’, nor ‘destined for disaster’, and ‘a terrible burden’. They’re my kids. They have their good days and bad days, their great moments of wonder and their desperate tragedies as only kids can. They are happy living their own lives in their own energetic way. And yes, our life looks a little different from other families. But I and my DH are neither sainted perfection, nor devilishly over-controlling ‘pushy parents’.

We’re just parents. And our kids are just kids.

Over time, and with lots of trial and error (an awful lot of error truth be told), we’ve found ways for our family to stay sane together. To look after everyone and make sure we all stay balanced and happy. It may not be in a way that is comfortable for other people – particularly for some in-the-box medical professionals. But it seems to be working for the moment …

And as far as I’m concerned if what we do works for everyone in our family, that’s all that matters.

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What are your experiences? What have you done that has helped you and your family?

6 Replies to “Life Changing … Not Life Destroying”

  1. "neither sainted perfection, nor devilishly over-controlling" Love it all. I get a sense of what a friend once called "connected acceptance", supported by humor and protection.

  2. Oh wow, maddening and amusing at the same time. The only thing that has changed is that there is a label now, and now the professionals wake up in response to that label like a vending machine that just received money in exchange for candy. Gah! You handle it so well.

    Seriously, thank you for sharing this because it really brings to light that we as parents may know more than the professionals!

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