Tuesday, March 9, 2010

I noticed very early on in Ralph's life, that many people have very low expectations for a child with Down Syndrome. I'm glad that he wasn't my first or second child or I might have been inexperienced enough to listen to them.

A neonatologist at Ralph's first hospital was one of these people. She insisted that Ralph would have feeding issues and would likely need a surgically implanted feeding tube. Many preemies and babies with DS do indeed have feeding issues, but her attitude made me wonder if some of these problems may be exacerbated by doctors with negative attitudes and low expectations.

Being an experienced mom and used to being in charge of caring for my own children, each of Ralph's hospitalizations were an exercise in humility. Asking permission to feed, to hold, and to bathe your own child is highly unnatural and demeaning. In order to preserve my sanity I learned to play the game.

After his first seven weeks in the hospital, I figured that if Ralph could bottle feed, great, he would be able to come home. If I insisted on breastfeeding him in the hospital it would be long drawn out ordeal to prove that he could gain weight. So I played the game and got him home where he was entirely my responsibility. Then I taught him to nurse in the comfort and privacy of our home.

Did he do great? Nah. But I've learned to adjust my own expectations. I don't need any help.

Now I'm thinking about potty learning. I know typical kids who are not fully trained until Kindergarten or later! I know that the expectation for a child with Down Syndrome is that low or much lower. Says who?

Ralph is showing signs of readiness. He stays dry for long periods of time. He signs "potty" when I change his diaper. He says "poop" and holds his nose when he is dirty. OK, "poop" really sounds like bbbffff, but I can understand him! I can't ignore these signs. And, now that he is not taking Lasix anymore I feel like he has a great chance of success.

I've been thinking so much more about Ralph's future lately. When I think of SSI and Medicare and group homes and sheltered workshops I can't help but think, why? And, says who? He's young and I have the privilege of helping him aim high. We may have to adjust our expectations at times, but that is OK.

I pledge to continue to ignore low expectations for all of my children, but especially for Ralph.

3 comments:

Regina said...

Very well said! And I agree with everything you said. If he's ready to potty train, then why not try? I know some ds kids that potty train even earlier than non-ds kids.

Christine said...

Good for you and for Ralph!

TheRextras said...

I'm learning from you.

Expectations are indeed powerful. Like love. :) Barbara