I've been thinking a lot about something you and the other ladies were discussing last night, (Ed: at a local support group for mothers of children with special needs) and I think it gives me a little clarity regarding something that I think has been bothering me, maybe subconsciously, maybe not. It’s the whole denial issue. It seems that the recent trend has been for all the mothers of young children with Down syndrome who I have met, to state their intention to mainstream their children (mostly girls) with shadows, in regular yeshivos. I know that one Brooklyn girls’ yeshiva has taken several girls with Down syndrome into the preschool in the last few years; there is one in another local yeshiva which I know of personally. I have heard that several other schools have taken girls, as well, in the last few years. "After all", they say, "my child is doing so well", is "high functioning". The superiority can be cut with a silver knife, at times. I feel like I have to defend myself for putting Tova into a Bi-Y Program (I consider myself lucky to have gotten a spot for her in that particular program) and I'm made to feel guilty about it.
Tova is the youngest of my 4 children. My older 3 children are all very academically successful. I wanted to give Tova a chance to be successful in an educational environment too. The academic curriculum is challenging for most special needs children. I am gratified now, that after the initial period of adjustment (she did not "get" it for the first few months) she is doing beautifully academically, and although she is still technically in the "baby class" she has moved up to a reading group with kids in the second class and she is keeping up, AND she is doing beautifully socially and has wonderful play skills, has plenty of friends, everyone loves her (it’s not fake, she has lots of ‘chayn’) and she is thriving in her environment. So why do I feel guilty? I feel I'm just trying to be honest with myself about my child and her limitations and I want her to succeed, and that makes me feel good. Why do I feel like these other mothers just want to say that their child is "normal" in a "normal school" which makes them better than my delightful, high functioning child who is learning!
I've got to work on not caring what other people say or insinuate, but it still hurts on some level.
I was blown away by the turnout last night. Also, I think it was so important for the young mother who spoke up to hear that it was OK that she did not connect with her baby and that she should not lose hope because her feelings were normal. I felt a lot of empathy in the room. It is very important to feel that you are not alone in the world with your feelings and experience. And, Yeshuas Hashem Kiheref Ayin -- in this case the yeshua will hopefully be for Hashem to open her heart and allow her to see her baby as a positive happening in her life. Hopefully it will happen for her, soon.
We all cried when our special children were born, at least initially. I cried for ten days straight after Tova was born, and then I dusted myself off. I knew that I had a baby in medical crisis who I had to take care of, so I had to let it go, and I B"H was able to. But I had already bonded with her, and it was easier, and I consider myself lucky for that. I understand, though, that not everyone can cope the same way.
Thanks for listening.
This article first appeared in issue #14 of Down Syndrome Amongst Us