Accepting your child’s diagnosis can be quite a significant hurdle to jump. But more parents are taking Yogi Berra’s famous advice: “when you come to the fork in the road… take it.”
As parents of ASD kids, our stresses and concerns are undoubtedly as different and unique as the many, many degrees of the spectrum. But I imagine one thing we all share is that we worry about our children’s futures.
The future is a place many of us can’t let ourselves go to until we’ve found some steady ground in the new- now, post diagnosis indeed, some of us still don’t like to go there directly, often or even at all.
But it is always there.
Some years ago, when I worked in a government role meeting with newly diagnosed families (I must have seen hundreds of parents) I was struck by how many asked me what they could expect in the future. I told them that I wished I had that crystal ball.
It’s never a good idea to dwell on our fears about the future, however there are some ways that we can tackle this difficult aspect of our parenting in a way that may empower rather than worry us. From the time we’re given a diagnosis (and often long before) there is so much about parenting a child with autism that is disempowering. I always encourage clients to find ways to reinstate that power. Our kids need us to do that. The most obvious and immediate way we do that is by putting therapies in place. There’s something we can do about the ambiguity, and fear for the future. We can turn our pain into purpose. Try to find a way to benefit your child.
Pay attention to what the politicians/ government are doing for disabilities (i.e: the NDIS – National Disability Insurance Scheme) and make sure yours is a very careful and informed choice. I personally feel ashamed of how this country treats its most vulnerable. Remember this …
“Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”― Margaret Mead
Support those causes and petitions with which you feel aligned or start one yourself about something you feel strongly and passionately about on change.org.
Have expectations, even if they are a little farther along than what the outcome will be. There is nothing sadder than seeing parents/ professionals who seemingly have no expectations at all. I don’t know how often I’ve heard “we can’t be seen to be giving false hope.” Sure, of course not. But worse than that is giving no hope at all.
Try to put a plan in place for your child’s care, in case something should something happen to you. It’s an awful thing to have to consider, and often involves a difficult conversation but it is important, and should offer you some peace of mind.
One family I was seeing actually relocated to the country in order to better manage their new reality, and last I heard everything was working out very well. A smaller, close-knit community and a slower pace all around has been great for their eight year old boy with Aspergers. Luckily his five-year-old sister was also happy to relocate. I realise this is not possible for everyone.
My husband and I have often fantasised about moving somewhere quieter – a simpler and healthier life for our boy. Somehow the thought of a small and friendly community, where our child is known by the locals, seems like a safer option than the big brash city. I’m not sure why this is, as small towns also have psychopaths and bullies, but it’s food for thought from time to time.
This fantasy has been in part inspired by the article Autism’s First Child by John Donvan and Caren Zucker. It tells the story of Donald Trippett who was the first person ever diagnosed with autism
Donald is described as having had a long and happy life in a small town in Mississippi where he’s something of a local legend and known for his extraordinary mathematical skills. I love that he assigns everyone he meets with a number and never forgets it.
It’s the ‘long and happy life’ part of this story that got my attention of course (and naturally an affluent background helps) but at the end of the day, what is it we all want for our kids? We want them to be safe, happy and loved and for that reason, the future is a place worth going to, to figure out any way we can to help create a better one for them.
Importantly look after yourself, now and every day so that you can be as big a part of your child’s future as possible.
You can have far greater impact on your child’s life if you’re here, and fit and well. Take breaks, take time out, and take care; as often and as much as you can. Looking after yourself is one of the best things you can do for your child right now.