Today is Day 22 of 31 for 21, a blogging effort to promote awareness about Trisomy 21, also known as Down syndrome.
After Yirmiyahu was born and I shared the news with people that he has Trisomy 21, I felt so encouraged to hear that there were significant resources in Israel to support his development. Now that he’s three and a half months old, I’m feeling much less supported and encouraged.
I’ve been to plenty of doctors for Yirmiyahu – I’m not going to enumerate them because I think I have in the past! I’ve also taken him to the Child Development Center, where he’s supposed to get supplemental therapies. Before the holidays he had one physical therapy appointment, and I have another scheduled for next week. While I appreciate that, I kept feeling that there should be a lot more early intervention happening.
I haven’t been passively waiting for outside help – I’ve been trying to put together a neurodevelopmental program for Yirmiyahu on my own. I don’t mean to sound whiny, but I really don’t think I should be needing to reinvent the wheel and figure out everything myself- I’m not living in a third world country and Down sydrome is something there’s a lot of experience with.
I spent weeks trying to reach the national support organization for parents of children with T21 – no luck. They never answered or called back in response to my repeated messages. I tried to reach the clinic in Jerusalem that specializes in Down syndrome – no luck. Again, no one answered or returned my calls. Finally last week I went into the local health clinic to find out about getting services for Yirmiyahu, and was told I need to speak to his pediatrician (who I’ve seen a number of times already and never suggested anything). I made an appointment for the next morning.
That night, I called someone in Jerusalem with an eleven year old son with T21 to find out what is normal – maybe my expectations were totally off? She told me the norm is that from the time the baby is very little, he gets therapy at least three times a week – once speech therapy, once occupational therapy, once physical therapy. I also learned that she was able to successfully breastfeed her baby exclusively thanks to the exercises the speech therapist gave her. Nice.
Now armed with the knowledge that others in different parts of the country in the same situation as me are getting significantly more services, I went to see the pediatrician. She told me that the Child Development Center here is perfectly fine and if they don’t offer more services, it’s because it’s not necessary. Then she demanded, “What kind of occupational therapy are they going to do on a baby so young?” and without giving me a chance to answer, told me that there’s no such thing as occupational therapy for a three month old.
So I went to go see the doctor who is in charge of the Child Development Center. She reminded me that I had already had an appointment in the beginning of September for physical therapy and that I had another one scheduled for the end of October. Yes, but doesn’t once in seven weeks seem….well, pathetic? Apparently not.
She told me that she will meet with me in a month to discuss this because she doesn’t want me to feel deprived or to think that I’m not getting services I should be getting. Personally, I think she should worry less about my feelings and more about making sure my baby gets the support he needs. When I told her that in other parts of Israel parents of babies with T21 are getting multiple therapies a week, she told me that a baby should only have one person working with him and that’s the physical therapist.
This was so frustrating. Despite it being well-known how important it is to help babies with T21 very early on in their lives, somehow this isn’t happening here. I felt like I was in the Twilight Zone when I was talking to both of these doctors. My partial comfort is that I’m working with Yirmiyahu on a few developmental areas and I hope he’s not suffering for lack of support, but it would be nice to get some support from trained professionals.
Later that day I was happy to get a call from the Feuerstein Institute in Jerusalem, which specializes in brain development and rehabilitation, and they’ve had a lot of success working with children with Down syndrome. I had been trying to reach them for several days and left a couple of messages, but due to my experience with not having my calls returned, I wasn’t expecting to hear from them. It was so validating to speak to someone there who told me this is absolutely a critical time to start working with him. She told me the person who works with babies will call me and we can schedule an evaluation – this is private, however, and I don’t know how long their waiting list is for infants. (I’ve heard that it can be months for adults.) Hopefully we can get him seen soon.
You know what the doctors seem to be most worried about? His weight. Although he’s gaining weight nicely now that he’s started supplemental bottles, he still remains under the average growth curve. (I pointed out that on the T21 growth chart he’s in the fiftieth percentile but was told that’s not relevant. Why is there a different growth chart for babies with Down syndrome if it’s not relevant??) My Israeli friend laughed when I told her about this and told me this is what they tell most mothers in the country, that their babies need to gain weight. I suppose that’s reassuring but what would be more reassuring is if I could actually get some meaningful assistance for my baby!