I first came across Ellen Seidman's writing when she wrote a guest post on the blog of a woman I had met online. The post, about how Ellen would like to see people approach her son Max when they first meet him, inspired me to write one of my earliest pieces for AC, "Special Needs Children: Telling All Their Stories."
Reading through the featured article, I was reminded to visit the blog Ellen writes about life with Max, who has cerebral palsy as a result of a stroke he had shortly after birth. And again, I found Ellen writing about something with which I could completely identify: that urge to compare our kids with other kids.
In her article Ellen gives advice to parents on how to cope with having a special needs kid. One thing that worked for her, she says, was to stop looking at where Max ought to be in his development. She learned to forget about the typical milestones of child development, and instead celebrated the milestones that Max came to. In a recent blog entry she talks about a magazine article that described the experience of another family whose infant had suffered a stroke, particularly about how deflated she felt when she read all the achievements of this other child.
Things Max has yet to do.
My heart sank, as awful as that may sound. It did. Not because I wasn't happy for this beautiful little boy— I was. Not because I didn't think it was an important article for raising awareness about pediatric stroke— I did. But still, that "Why not my child?" feeling swept through me. We got Max so, so, so much therapy back then. We still do. We've done everything we humanly can for him. And yet, he cannot pick up a Cheerio. He cannot speak in full sentences.
- Those times that make you wonder: Why didn't we get the happy ending?
I can very much identify with that feeling. Wanting to be happy for all the accomplishments of another child who has struggled to do what typical kids and their parents take for granted. Wanting not to seem bitter when the War Amps commercial comes on and some other mother is gushing about all the great things they have done for her child, all the things he can do because of the prosthetics and the computers, and all the special programs that help her kid feel normal. Wanting to be happy for a friend whose child has just won an award for some extraordinary piece of scholarship, or who has been chosen for a sports team, but secretly thinking that parent has no idea how lucky they are just to have a normal child.
I identify much more with this sentiment than the whole "Welcome to Holland" thing the psychologist was so eager for us to embrace when our son was first diagnosed. Maybe it was the travel analogy. I am not a traveller by nature. I like to be in familiar surroundings. Taking a bus across town to check out a new shop someone has recommended is a big deal for me.
Most days we are able to resist that urge to compare our kids with other kids. Now that they all use the toilet by themselves, dress and feed themselves, speak in something that could pass for complete sentences (some of the time) and have each mastered a few basic academic skills it's easier to let go of the comparisons. The hardest part is the first 3-5 years of a child's life, when they're so busy exploring and learning and growing. When it's really obvious just how far behind your kid is. Not behind some ideal of a normal kid, but behind all those neurotypical kids in your extended family and your neighbourhood. To be frank, that's a feeling I can really do without ever having again.
So I try not to compare. And like Ellen, I'm hopeful for what the future will bring. I am thrilled when my son learns to add and subtract whole numbers - even if he learns it when his classmates are beginning to add and subtract fractions. I am thrilled when one of my daughters discovers she can read music or play an instrument, when another masters a difficult dance move or martial arts technique, or when they manage to have even a single day where the cleaning and organizing wins out over the chaos and mess they create.
It doesn't take away all the sorrows and the stress of living with special needs kids, but it helps to stay focused on all the blessings they bring into our lives.
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