One of the blogs I follow religiously…not kidding, I worship this woman…ok, sort of kidding…is Diary of A Mom by Jess Wilson. She is the parent of 2 beautiful girls, and one of them is on the autism spectrum. The best part of Jess’ journey is that she has learned and evolved. She does not strip her blog of her older posts, which don’t reflect where she is as a mom and autism advocate presently. But she refers back to them to show us all that when we know more, we do better.
When we look outside ourselves and our situation, we find different ways of looking at our situation or our world. Her biggest a-ha’s have come from listening to a growing number of friends who happen to be autistic adults. They are helping to educate Jess (and the world) about what it’s REALLY like to live with autism…not what it’s like to live with a child with autism. It’s good stuff, folks.
So, Jess’ blog and parent support. One of her posts (actually many of them) speaks to this issue of how parents respond to the autism diagnosis for their child. Her view on what that diagnosis really does (as well as her candor on how she was handling it herself) is kind of eye-opening. The post is called “D-day” and you can read it here.
Also, if you want to read her initial reaction to the diagnosis, read her letter called “Welcome to the Club” here.
My ideas on how to help support families aren’t all my own. They aren’t even completely related to how things went with my son. They come from my evolving view of autism from a professional and parental point of view. As I’ve watched Early Intervention jump in to support families, it goes all kinds of different ways – it looks messy and families are still grasping at all kinds of straws. I’m not sure how much “support” families feel as they are left to figure it out with EI being only a piece of what they might be told they need.
The parts that do relate to me are this: parents are scared. They don’t see hope. They don’t know if what they’re doing is right. They want to know it will all be ok. To be honest, it’s only recently that my husband and I have had conversations that relate to hopefulness and a future. My son is 16, an 11th grader in high school. It took until 9th grade for us to see how things might actually work out for him. And even though everything isn’t perfection (his grades…meh), we see his interests growing into something he can do in the future. We see college in his future, but what that experience looks like (i.e. community college/living at home? Going away and not seeing us for weeks?) is still very much up in the air. But we are confident that we can help him make those decisions based on conversations that will be informed by his strengths, needs, and overall experiences he’s had and how those have worked or not worked.
This is what we need to focus on at all ages. As parents, if you have a child who is too young to tell you what they think, you are going on what you *do* know…what works well for them, what doesn’t; what they are good at, what they need a lot of support to do. And nothing else – other people’s experiences, the new “cure” or technique, all of the so-called experts – should convince you to go against what you know better than anyone.