This morning I woke up feeling inadequate to deal with the needs of all of my children, and felt particularly guilty that I’m not doing enough for Yirmiyahu. I was originally told that he’d get an appointment at the child development center around the age of 4 – 6 months, and I thought that it would be okay to wait for that. I’ve bought some books and have doing some things at home with him to aid in his development, and thought I was on the ball. But at ten weeks old, I’m now feeling like I’m behind since I’ve been told recently by several parents of children with Trisomy 21 that I’m supposed to be getting him to therapy appointments by now. That’s not so easy here since I can’t make the appointments until they’ve processed all the initial paperwork we’ve submitted so I have to wait for them to contact me.
Well, G-d is very good to me and knows my limitations, because this morning as I was sitting in the doctor’s office for another child, the child development office called to tell the doctor that they had an opening for today and wanted me to have it, but weren’t able to reach me. She smilingly looked at me and told them, “They’re sitting right in my office this minute!” I was so happy to get the appointment with a physical therapist and get the process started for him.
Later that day when I went for my appointment, I was a bit disappointed about it all. No, not disappointed. Discouraged is more accurate. When I got there, they asked me questions about the baby and a number of questions I didn’t see as directly relevant to a physical evaluation, like how old he was when I found out he had Trisomy 21, where I was notified about it, how they told me. But they finally finished with that and I was happy we were going to get down to business of them evaluating him physically and giving me suggestions of exercises I could do with him at home.
That wasn’t what they had in mind! They were nice, but I can’t explain the tone that all of the questions/comments were made in – very kindly, not quite condescendingly and not quite patronizingly, but it didn’t make me feel warm and fuzzy at all. I felt like it was a psychological intake, and that somehow everything I said was a reflection of my poor parenting. For starters, my husband didn’t come – it didn’t even occur to us that he should. They wanted to know why (he has to work!) and said that he really should be there for every single visit. Then after asking about our family (Did you finish high school? Really, you finished high school?), children (where do they each go to school? How do you get them to school each day?), I was asked about if I give Yirmiyahu any vitamins. I told them yes, that I supplement with Nutrivene-D, a special formulation for people with Down sydrome, as well as probiotics. (What? Did the doctor tell you to do that? And you thought it was okay to give that to him on your own?)
Then they told me that I don’t support his head properly when I hold him. A bit later they asked me what position he sleeps in, and when I said that he sometimes is on his stomach, asked me what gave me the idea that I should do that. I explained I do this specifically to help him develop his muscle strength and because tummy time is known to be very important developmentally, and they told me that even though I thought I was helping, I’m endangering him and there’s no benefit to him anyway.
Then they weighed him – he’s hardly gained any weight. They told me that he needs supplementing with formula since the nursing is too tiring for him and taking too much effort. (I’ve been very concerned about if he’s been eating enough, so in this case I appreciated their feedback although I didn’t totally agree with their conclusions.)
They put him on the padded table to watch his movements for about fifteen minutes; they said that his body motions are at an eight week level, which I suppose is good since his gestational age is eight weeks (he was born at 38 weeks). They seemed to say that because there are movements that are ingrained in a young baby from before he’s born that then disappear, that what we were seeing might be from then and not reflective of his movement ability now. I wasn’t sure what the significance of this was.
When it was finally time to leave after an hour and a half, I put the baby in the wrap. And then I was told that was dangerous, that I was causing head extensions and I needed to put him in differently. By this point, he was screaming and needed to be fed, and I didn’t have much patience anymore for listening to someone tell me that every single thing I was doing was harming him. I had walked in with so much positivity and as I walked out, I felt like all the things that I had done specifically to aid in his development had been turned around as wrong. It wasn’t the best feeling that I’ve ever had.
But this was just the ‘getting to know you’ meeting, and hopefully next time we’ll actually move to more assessment and skill development. For now, I’m going to have to pat my own back for the efforts I’m making with Yirmiyahu, and will continue to stay open to their assistance and suggestions.