Today is Day 22 of 31 for 21, a blogging effort to promote awareness about Trisomy 21, also known as Down syndrome.
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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!
Avivah
Oy! I wish I had told you about where you live shaping what you might or not get therapy wise… One of the biggest “perks” we discovered when our baby was born at 26 w. 9 years ago, was that by living in the J’lm area we had so much more access to early therapy. Our son only started physiotherapy at 7 months old, but then again he was in hospital till 6 months. And by the time he was one year old, he had supplemental therapies.
What I was told (by my therapist and a doctor in NICU) is to fight , fight, fight and never stop demanding what I feel my kid needs. While I have nor always be atop of things (my own fault), I know that many doctors who’ve seen my son are surprised with how well he turned out (the outlook was not great, and he’s learning in mainstream class with kids his age, and doing well too), and have been told more than once that it’s because I never let go.
Please continue doing what you’ve been doing so far.
Also, PG, you’ll get the Feurstein evaluation soon. I have a friend with a T21 kid who had weekly therapy there while they live in J’lm and when the child turned 2 they had to move back to chu”l. Since then they go back to the institute once or twice a year and are in constant touch, and that’s how they continue getting guidance for their child’s therapy. Maybe you can work out something similar for Yirmiyahu.
On the other hand, you should be aware that the blanket statement for child development is physio from a few months old, but only once in a while (as in guidance and exercises to do with the kids) and only more serious work (therapy every week or 2 weeks) from 6/8 months onwards if the baby is still not “catching up. Occupational therapy not before 1 year old if not 18 months. As for speech therapy, it’s rarely given before 2 years old…
That said, it IS possible to get all the above well before these dates, but you might need the help of a good pediatrician to pull some strings.
Don’t give up!
So sorry you’re having such a hard time. I haven’t checked your blog for quite a while and didn’t realize you had another Blessing. Congratulations! I will pray that things start falling in place for you to get the support and services he needs.
I am not clear on exactly how much therapy my nephew had here in the States, but he did have OT/PT and speech, even as an infant. The house was a train station with therapists coming in and out. Please email my sister in law and she can tell you what is “normal” here in the States in terms of support for infants in this situation. I also gave you the email addy of another friend, in Canada, who had a T21 baby there almost 11 years ago. She also had LOTS of therapies, starting early on and continuing for many years.
Nathalie is unfortunately right. In areas with a higher concentration of institutes, schools, therapists etc. (Jerusalem being foremost) you will get more help.
Also, the benefits you are entitled to have a lot to do with how much advocates have been able to push lawmakers to provide via the sal briyut and bituach le’umi, not necessarily with how much they need.
And of course protexia helps everywhere here.
I am sorry you are having such a hard time with this. I have a few friends with children with T21 and I remember some of them mentioning getting a lot of early intervention and the importance of it. I think a lot of these services did happen to be in Jerusalem. I would be happy to give you their numbers if you are interested. Someone mentioned an organization called Siach Sod that was helpful in special needs situations. I also remember my friend getting a private massage therapist for her baby daughter which was supposed to be helpful. I wonder if you can maybe even do it yourself for Yermiyahu. And here is an interesting link about vitamin therapy and T21.
http://www.doctoryourself.com/turkel.html You deserve a medal just for your perseverance in trying to get your baby the best help he can get. Hang in there!
Thanks for the link, Regina – very interesting and it supports the conclusion I’ve come to in terms of vitamin supplementation for Yirmiyahu.
Where we are, Early Steps does an evaluation around 2 months old (If I remember correctly) to determine which services are needed and then therapy usually starts at 3 months old. Whatever therapy is determined, it is given every week or even twice a week in the home for 3 years. Yosef, got only OT once a week in the beginning, since there is some overlapping in ot/pt therapies at that age as long as they don’t have other issues, He didn’t get speech right away, since he didn’t have feeding issues( he was nursing full time at that point) and kept his tongue in etc; But I have friends who did get st for their infants due to feeding and or swallowing issues etc; That may be a way for you to get speech, since he is not nursing well you can ask for a feeding evaluation. once we got the OT, we asked for pt and then speech and then speech twice a week.At some point after one of the evaluations (maybe around age 2) his ot was reduced to once every other week since his fine motor skills were well within age range, but even so, he still gets ot every other week even now, since I have my pediatrician writes a prescription for it. Have you got any of the books by Glenn & Janet Doman, like how smart is your baby etc;? We also started the signing time DVD’s at a very early age. I hope that you will be able to get all the therapies for Yirmiyahu soon!!
Thanks for sharing your experience with this, Gilla! I have two of the Doman books (How Smart is Your Baby and How to Raise a Physically Superb Child), and this together with two other books specific to developing gross and fine motor skills in children with T21 are what I’m basing my efforts on. How early did you start the signing dvds?
Avivah, did you try contacting Ezer Mizion in Bnei Brak? See if they have a specialist dealing with advice for children/babies with T21. I don’t know if they do, but if they have someone knowledgeable there, I would imagine they could give you lots of advice.
We lived in the north in Mitzpe Netofa (near Tiverya) with our children, and I have to say the health care and schooling in the north is a lot different than in Jerusalem. I do not believe you are going to have the same wide array of services. Although the North is so much cheaper rent wise…I guess living near a center (either Jerusalem or Tel-Aviv) might be better. I don’t know for sure, as I have never lived in the center. I feel like even the quality of ulpan is different in the North.