Today I took Yirmiyahu for his first physical therapy appointment in five or six weeks. He lost a lot of muscle tone when he was so sick – he was like a newborn or even less, totally unable to support his head at all for a while. I asked the doctors how long it would take for his muscle tone to improve, and they told me that they can’t predict when that would happen. I reminded myself that we worked on muscle tone before and we can do it again but honestly I was discouraged at the thought of starting from scratch again.
I’m happy to say that after about a month, he’s mostly back to himself with even a couple of areas that he’s progressed in! At today’s session the therapist wanted to assess where he’s at now. During our session she reminded me about something she told me about a couple of months ago. At that time, she described to me the special daycare (maon shikumi) for infants with disabilities, where they can get therapies of all types throughout the day. It’s a full day program from around 7:30 or 8 am until 3 (I think), and it’s very close to our home. Not only is it free, but we’ll be able to get transportation to and from the door of our home to the door of the daycare, also fully paid for. Obviously, it’s a no brainer that any caring parent would rush to put their child in this framework. Isn’t it?
A couple of days after Yirmiyahu was in the intensive care unit, the doctor who admitted him spoke to me and told me that his condition had been critical, and that there would have been no way to help him if we had gotten there even a few hours later. A nurse from that unit told me that his blood work was so bad that they were all frightened when they heard his results called in from the emergency room to their unit in advance of his transfer. To hear that his situation was so bad was very hard, really very emotional – it was then that I emotionally just turned off to handle the overload of what I was feeling. So when ten minutes later a social worker came in and introduced herself, I knew she had come to see how I was handling everything.
To my surprise, she began by mentioning Yirmiyahu’s T21 diagnosis, and then started talking about this specialized daycare program available. I just listened and nodded my head at appropriate intervals, but I guess my lack of response gave her the impression that I wasn’t going to put him in. She kept telling me that I have to make decisions based on what is best for him, not my feelings, and how much better it would be for him than being at home. She repeatedly told me to check it out before making any decisions. I had such a sense of unreality to have her discussing this with me with Yirmiyahu lying there hooked up to oxygen, a feeding tube and monitors of all sorts. It seemed really inappropriate that this was the topic that she felt was a priority to talk about right then.
Now that Yirmiyahu is nine months old, apparently it’s now a priority that he go into this daycare. Today when the topic came up again and I was asked about my plans, I told the therapist that I don’t think this is the best option for him right now. I don’t speak very openly with therapists and doctors because we have such different paradigms that it makes honest communication very challenging. When I’m speaking English I can reframe paradigms for others, but I don’t have the nuanced Hebrew to be able to effectively do this. And I don’t like to sound unintelligent about something that I’ve put so much thought into. I keep things that could sound controversial or argumentative (that means most of my thoughts about anything that aren’t in lock step agreement with them) to myself.
She listened to my response, then wanted to know why? I didn’t talk at all about the developmental benefits to a young child of being home with loving and supportive parents. Love and emotional security play a big part in a child’s development – even therapeutically, there are exercises that Yirmiyahu does because he loves the people doing them with him, and we do them when he’s rested and interested and stop before it’s too much. This is really different than therapy – he’s a very good natured baby and usually only cries when he’s tired or hungry, but at every therapy session he spends at least half of the time crying. He gets tired and wants to rest or be left alone but the clock says we need to be there longer so he has to keep having his body moved in different positions because it’s ‘good for him’.
Anyway, that’s what I didn’t talk about, because I know how different this is from the way they see things. The thinking here is the earlier you put your child in a framework outside of the home, the better – and for a child with ‘special’ needs, his therapeutic needs totally take precedence over anything else in his life. It’s almost like they become their diagnosis first and foremost, rather than being a child with a diagnosis. That’s a really big difference. And when you’re not thinking of a child’s holistic needs, you think differently about what is best for him.
What I bascially told her was: “At both of his evaluations, we were told that Yirmiyahu is excelling in every area of development. So whatever we’ve done with him seems to be working well for him. He gets plenty of stimulation at home; he’s not laying in a crib staring at the ceiling. It doesn’t seem to me that at a daycare they can give him better results than we’ve gotten.”
I often have a strong feeling that there’s an expected script and I’m not reading my part. My part is supposed to be to along with whatever I’m told is good for him.
I did agree to visit the daycare so that they can see that I’m a reasonable person. I don’t want to do this because I don’t need to subject myself to more people telling me how what they can offer is so much more than me, people who assume that a parent doesn’t do anything on their own and that the experts are always better. Doing things that other people want me to do that I don’t really see the value in is something that since moving here I’ve done much more often than I would have liked, but it seems to be part of working within the system.