Down Syndrome: The Not-Always Easy Track

It happens so often. Someone sees that your child has Down syndrome (or any other disability), and you can see (or you imagine you see) them wondering how you manage. They may look at you with pity.
So how does the special-needs parent react? We smile and say how we love our child (and we DO), and how well he is doing, how talented he is in some ways (and He IS). But even on those off days when we feel that we fell into a bottomless pit, we still put on the "it's nothing" act, and somewhere inside we wish people could accept our child AS IS, without being almost perfect, without him having to measure up to everyone else. And we wish that we could sometimes admit that this is not always an easy track to run on. But we worry that if we admit such a thing, it only strengthens those who say that their lives are not worth living, and so we shut up and smile and something inside cracks a little bit.
That is why parent groups are so great. Because there we can let the “Gosh, DS hurts” sometimes show. But occasionally , or even not so occasionally, even at parent groups, the parents of older children drown new parents in this positive tone that has not even the slightest tint of “it can some times be hard”. I guess they are trying to help the new parents see the tremendous possibilities that their tiny babies have. But what happens is that new parents are afraid to admit that they really didn’t WANT a kid with Down syndrome to start with, and that sometimes they are frustrated “out-of-their-minds”. So let’s sometimes be honest. Down syndrome can be a real pain at times. Now that does not mean that my child is not the light of my life. She is. And she has every right in the world to exist, blossom, and achieve.
And new parents, hear: Shoot for the stars. But know that if you feel like G-d kicked you in the shin, its Ok to be at that place occasionally. Just don’t stay there.

“What, He can talk?”

Today I called up a fairly “fresh” parent whose newborn has Down syndrome. I wanted to invite the couple to the celebration a young man with Down syndrome is making on completing the study of Mishna Mesechat Shabbat. This is no small feat, and a few years ago he successfully finished a different portion, and knew it well.
Her reaction was: “What, he can talk? He can walk?!”
Now it would be one thing to blame this on poor information given to the parents, doctors with outdated information, etc. But it just so happens, that I remember talking to this mother a few months ago, over the phone, at length. Somehow, the message didn’t get through, and I don’t suspect my delivery. Some parents really have trouble believing the GOOD things about our children. I have one mother I have been talking to for two years already, and she still finds it hard to believe that her son can progress. Coupled with the fact that she does not take him to early intervention therapy, her son’s chances for am optimal life are slim. She is making a self-fulfilling prophecy of failure.
The big question is, what causes this type of attitude? An encounter years ago with a low-functioning child? Grandparental attitudes? A feeling that one is deserving of “punishment”, or unable to be successful? There is no way to know. But I do know that those of us active in outreach to new parents have to be aware of the possibility of these types of reactions. We have to try and stay in contact with the parents, encouraging them, and coercing them a bit, until they see for themselves, that yes, kids with Down syndrome do talk. And walk. And a world of a lot more.