This past Thursday was my last day at Shalva in Jerusalem, something that I had very mixed feelings about. I don’t enjoy the long travel time to get to Jerusalem, but once I’m there I enjoy it so much. The therapists are so encouraging and warm, about me as a mother and about Yirmiyahu. It’s nice to be with other moms with babies with T21, and it’s just overall a really warm environment.
Then there’s the local child development center, where Yirmiyahu goes for weekly (soon to be twice a week) therapy. As appreciative as I am for the services being offered locally, the environment is really different. Here’s an example. This past Thursday, the speech therapist at Shalva and I were discussing the feeding issues with Yirmiyahu. I mentioned that I started giving him Chewy Tubes to chew on, and the therapist exclaimed appreciatively and impressed, “Wow! You have everything!” She’s told me a number of times what a great mom I am and appreciates the time and energy I put into researching options to help Yirmiyahu.
Now here’s how the same conversation would go at the child development center. I mention the feeding difficulties and tell her I gave him Chewy Tubes to gnaw on. She would say (we didn’t have this conversation but it’s been exactly the same in every conversation): “What is that?” I explain. “What makes you think that’s a good idea?” I explain. She asks me, “Did someone recommend this or did you just decide on your own to do this?” Sometimes she just says, ‘hmm’, and sometimes she tells me the research doesn’t support whatever it is I’m talking about. You get the idea. It’s just a very different kind of conversation in the two places. In one I end up feeling appreciated and in the other I feel defensive and almost attacked.
Today I had an appointment at the child development center and though our regular physical therapist wasn’t able to be there today, the speech therapist already scheduled to join our session was. I’ve gotten used to a certain kind of attitude though I don’t like it, so today was a really nice surprise. Even a few minutes into our meeting, I already had a good sense of rapport and warmth with her.
Then we had the assessment, which was a total pleasure. She began by asking me to tell her about Yirmiyahu, so what could I say? Except the truth, that he’s amazingly cute and communicative and intelligent. I know, you’re not supposed to say that a baby with T21 is intelligent because the traditional medical model tells parents that these kids are born mentally retarded which is a total lie and sorry, I have to rant for a minute and say these doctors are going to be held accountable in some lifetime for the stunted potential of all the children whose parents treated like them they were retarded as a result of what they were told. I just spoke to a mother like this a few days ago and I thank God that I happened to meet her and give her some hope because after speaking to the doctors, she had absolutely none and having a more realistic and hopeful picture will change the quality of her life and her baby’s life.
Anyway, back to me and the therapist. I’m a straightforward person so despite knowing that people will think I’m in denial or living in a dream world, I tell her the truth, that he’s very bright. She asked me, “Really, you think he’s intelligent?” I tell her, ‘Absolutely, and very attentive, aware and curious.’
And guess what? Throughout her assessment she kept commenting spontaneously not just about his cuteness, but about how curious and aware and attentive he is. At the end, she told me that his communication is very good, specifying all the ways she noticed this. I asked her, “Do you mean for children with T21, or for typical children?” And she said that his communication skills are on the same level as a typical infant, and that she can’t find a single area of concern. The feedback at the child development center tends to be lukewarm, and meeting this therapist and having this feedback was really a very nice shift.
I’m hopeful that we will have more of these kind of interactions as time goes on….but it was really a poignant and sad feeling to say goodbye to the wonderful staff at Shalva where this was typical rather than unusual.