Lets Talk About Grief.

A while back I wrote this. http://sharon-theawfultruth.blogspot.com.au/2012/01/letter-to-jim-sinclair.html

While I think Jim Sinclair makes a point worth reflecting on for all parents of children on the spectrum, I know at least in my own case and the many parents I speak with, we are not wishing for different children. What we hope for is the removal of impediments and suffering their autism presents. Few parents would wish to have a child born with a life long disability. No parent wants their child to have a hard life, or a lonely life, or one filled with anxiety and self doubt.

Yes there's projection in those fears for our kids. Feeling sad because your child doesn't make friends, and friends are important in your life is projection. Perhaps it doesn't bother your child to wander the playground unhampered by the chattering and interference of others. But what of the child who's despondent at their lack of friendships despite much effort? Of course that will break the heart of those who love that kid.  Even if some of our sadness as parents is based on our own hopes for our kids (and we all do it, the basis of Jim's generalised assertion about parents contains projection too) the fact is it still hurts. And some days the hurts add up, we can feel overwhelmed and a wave of grief may follow often unexpectedly.  Sometimes we've spent so much time in our heads intellectualising autism and what it means to our kids we delay the emotional processing that needs to also take place. Sometimes we focus on 'getting on with it' and pat ourselves on the back for not wallowing only to find down the track we have unresolved feelings about raising a child with a disability. Sometimes it takes a while for the full effects of their disability to come into sharp focus, when it does triggering a range of responses, guilt and grief often chief among them.

I watch my little guy at kindergarten lately and see a boy who though has much social motivation is disconnected from the rest of the pack. There are multiple possibilities for why. I know he finds the fast pace of their conversations hard to process. I also know he's more focussed on doing what interests him than accommodating the interests of others for the sake of appeasing them. Friendships are about give and take, and Harri is a while off understanding this. Meanwhile the other kids are forming their cliques. The few boys who patiently try again and again to engage Harri because he's usually doing something cool, like squashing caterpillars, are ignored more or less. They'll stop trying eventually. Then in a couple of years when Harri's interest in other kids grows and the importance of mates becomes more pressing for him (given as I said he is naturally a social little guy) I worry it will be too late. That he will have become ostracised. They will have become tired of him destroying their things, and knocking down their block towers, and hitting when they interfere in his play, and ignoring them when they call out to him. I worry how this will affect his sense of self and his capacity to make it through the school years. I can't help feel sad that this social stuff is so hard for him.

The long term terrible possibilities I'm considering before they've begun, even if they do border on catastrophisation, are not without possibility.  They happen to people on the spectrum all the time. Social isolation, depression, suicidal ideation. Obviously it does no parent any good to dwell in that space continually. But like a tired swimmer, sometimes your head sinks below the surface, you let go for a small moment, before getting your head above water to take a deep breath and continue swimming again. Sometime, just when we think we've reached the shore new challenges present themselves, opening sores you may have thought were long healed, and we're off and swimming through murky waters again. And you know what? We are allowed to feel sadness and grief about that. Despondent, tired, heartbroken and even angry. Sometimes things are just shit, life's not all moon dust and rainbows.

This isn't just about acceptance or not of your child. You may completely accept your child as they are and have no motivation to change or 'cure' them. It's about the ongoing concern that all loving parents have for their kids. That they be happy, healthy, have positive supports, live relatively independent lives. That they will be safe. I'd suggest parents are biologically hard wired to want those things for their kids (unless they're psychopathic) and so accepting that your child may have to work a lot harder to obtain those and witnessing your child struggle in achieving them is painful. Add to this the other common issues such as sleep difficulties, epilepsy, anxiety, GI issues, sensory sensitivity, difficulty communicating, motor skill challenges and so on, and it's easy to see how autistic people can find life hard going, and of course that affects those who love them. My point is, we shouldn't get angry when parents talk of grief. We shouldn't shame people for experiencing normal human reactions to hardship. And we shouldn't assume once the diagnosis is some years behind them that parents won't continue to experience episodes of overwhelming sadness. The answer to supporting parents through their grief is compassion and support not judgement and derision.