A discussion starter on a facebook page about autism siblings made me realize I haven’t really shared that part of my family life since I started blogging 9 months ago. I know I’ve written about my other children, especially my teenage daughter (God bless her!), but I haven’t written about their experience as autism siblings. My first reaction when I thought of a post like this was, “No way, it’s too much. I could write a BOOK!” Then I actually made myself sit down and write. Well, it’s not quite a book, but it was too long for just one post (I like to keep my posts under 1,000 words so people like me have the time and energy to read them!). So I’ve decided to post it in two installments. Part one will focus on my oldest child as a sibling, then part two will focus on my youngest.
My autistic daughter, (G), is my middle child – my oldest, (E), is three years older than her, and my son (J) is three and a half years younger. When E was younger she had the logical questions – Why is G different?, Why does G jump and flap like that?, Why won’t G talk?, Why do we have strangers (therapists) coming to our house?. She went through periods of acting out to get attention because everyone in the house seemed so focused on G and not on her. We figured out our own ways to explain to her, “Your sister’s brain works differently,” “G needs help because her muscles aren’t working the way they should,” and the acting out faded – and my husband and I made extra efforts to to give E the attention she deserved. I KNOW there are times E “fell through the cracks” (and still does) but we do our best.
I think E has been shaped by autism in ways our younger son hasn’t, because she was alive (ages 3-7) for her sister’s younger years and was part of the journey to diagnosis – a journey filled with anxiety and fear that I know she saw in my husband and me. In the process of the autism diagnosis, we also had mitochondrial disorder and epilepsy scares that involved overnight hospital stays and surgery – we went through A LOT, and she SAW a lot in our home with therapists coming and going (and the therapy always involved lots of crying on G’s part), but all that was over by the time our son was born. I know a lot of oldest kids feel “knocked off a pedestal” when a younger sibling is born, but E went through much more than that.
It’s been hard on E at school. There have been times when kids at school have called G a freak to E’s face. When all you want to do is fit in, having a sibling who goes to a “different” school and has “special needs” makes you a target. E’s participated in a sibling therapy group, which she HATED, but loved the once a month “just hang out” group they have at G’s school. Unfortunately, the older siblings tend to drop out, and when E showed up a few times last year and was the oldest kid there, she stopped going too. I wish she had other people to talk to about her experience. I’ve tried to point her towards some online groups and people, but she wants no part of it.
There’s no such thing as a perfect person, and there have certainly been times when E has been downright mean to G, but then again they’re sisters and I think fighting, mean-ness and teasing is part of any sibling relationship. There have been times when I’ve had to intervene and tell E to “back off.” But even though she can be tough on G, she is also VERY protective. SHE can tease her G, but if anyone else does they better look out. E has no patience or sympathy for anyone mistreating her little sister. And there are times when they are just precious together. G practically worships E – as an example, for Valentine’s Day G only made ONE card at school – was that card for Mommy or Daddy? Nope. She made her one Valentine’s Day card for her big sister. And E appreciates it – she has that Valentine card displayed prominently in her bedroom. When G had her choral concert at school, E did her make-up. And last month when G got her first period ever (that will be another blog post!) E was absolutely AMAZING – so gentle, so patient, so comforting.
Now that she’s a teenager her questions are more complex. E wonders, as does the rest of the world, what causes autism – whether it’s genetics or environment or some interaction of both. A question that seems to be fading is if her little sister will ever be mainstreamed – it doesn’t look like that will ever happen. She worries about her sister’s future, and wants to do her part in making sure her little sister doesn’t have to worry about anything. As I said, she’s very protective. She may have her moments (as do I!) but there is NO doubting her love and devotion to her little sister.
My oldest always roots for the underdog and goes out of her way to show kindness to those who appear on the margins. She has had her own issues to deal with over the last few years and I’ve watched her struggle and fight and persevere. In many ways she is older than her years. She is one of the most awesome people I know. I’m sure there are many things that contribute to her being this awesome person, and I know that her experience of her sister’s autism is one of them.
Next up, my son as an autism brother…