Some words of wisdom here in this short article from the NY Times, about the siblings of children with disabilities:
"These brothers and sisters will likely have the longest-lasting relationships of anyone, relationships easily in excess of 65 years," Mr. Meyer said. "They should be remembered at every turn."
It's not easy to know what to do all the time, when you are parenting. Add a child with special needs to the sibling mix in your house, and the chances of not meeting everyone's needs goes up pretty quickly. This article points out that much of the support in the (broadly speaking) disability community comes to parents and to people with disabilities themselves. There is a lot less attention to the emotional and support needs of siblings.
When Emily was born, my middle child was only 3 and a half. I made mistakes. I know: all moms make mistakes. But I wish I could go back and rethink some things.
Since she was so sick at birth, we had so many appointments with all kinds of people. We had so much new stuff to learn. But she had open heart surgery at 2 months of age, and then things settled down a bit.
We started going to an Early Intervention program weekly, meeting other parents and kids with Down syndrome. It was wonderful for my soul to meet so many other moms (and a few dads) and see so many beautiful children. I loved that weekly visit, and looked forward to it each week. It was the major source of comfort and support in my life, at that time.
But siblings were not allowed. And one day, I had to take my middle child with me, because I could not arrange babysitting.
And she was so sweet. So good. She couldn't come in. But outside the door of the Infant Program was a little playground with a slide and swings, and a bench. It was literally right outside the door, and I could see her every moment.
What I saw through the door: a curly headed four year old girl playing patiently alone on the swings and on the slide, and sitting on the bench talking to herself, swinging her legs back and forth. Occasionally she'd get up to peer through the glass of the door inside. She'd see me and wave, and go back. Go back outside the circle.
Here's what I should have done: I should have cancelled my Infant Program visit that week and stayed home. I should have heard the call of motherhood a little clearer that day.
Well, she assures me she has no lasting traumatic emotional impact of her solitary day on the swings outside the glass door. Truth be told, I don't think she remembers it.
I pray to God she doesn't remember it.
It is hard to raise children with complex needs; hard to not get confused, hard to keep your mind on what truly matters. But I think we need to focus on the siblings, too. They often get shunted to the side, out of necessity---but also, out of focus. Our focus, as parents.
Just a little story from this mom.