There have been a lot of trips with Yirmiyahu to various doctors, but almost none of them have been at my initiative – they’ve been following up on things that the doctors have asked me to do.  Obviously it’s been important to get all of these medical tests done – checking his heart, intestines, blood, hearing, sight – but I want to help Yirmiyahu beyond basic health maintenence.  There are so many parts of him that need to be developed, just like every child, but supporting him in these ways will require more consciousness and education – and this isn’t in the realm of the medical world.

That means I need to turn to those who specialize in those areas for assistance, and today Yirmiyahu and I headed to Jerusalem for his evaluation at the world famous Feuerstein Institute.   When I was first trying to connect with them, it took a while to speak to the person in charge of the evaluations for infants, but once I did she scheduled me for an appointment less than three weeks after we spoke.  She told me they have a long waiting list but they give top priority to the parents of infants with T21, since early intervention is especially critical for them.

It was a cold and blustery day, with pouring rain and many hours of bus travel, a day that I held Yirmiyahu for twelve hours straight (with a short break when he was on the mat for part of the evaluation).  And it was worth every second.

The Feuerstein approach is based on the concept of cognitive modifiability, which I think is similar to what neurodevelopmentalists  call neuroplasticity.  That means that the brain isn’t static but grows with use.  Professor Feuerstein has repeatedly shown that a person can be helped to develop his cognitive abilities in a very conscious and purposeful way.  Mediated learning is a big part of this approach, and the goal is to help a child to learn to think, not just to memorize facts.   Their goal for children with T21 is full integration beginning with school and eventually marriage, work and/or post high school studies.

People come from all over the world to benefit from this approach.  In the waiting room I met a mother whose youngest child is now 13 and has T21.  She told me they live in Argentina but since he was two years old they’ve been coming to Israel for six weeks every year (right now it’s summer vacation in South America) for her son to have intensive daily therapy at the Institute.  And since he’s the youngest of twelve children, when they started coming she was bringing seven children with her for those six weeks!  She told me she searched all over the world and this was the best place she found.  Her son was just bar mitzva and did all the leining – she said that his progress thanks to the Institute has been amazing and worth all the efforts in coming.  I wish I could have spoken to her longer – she’s the first parent of a child with T21 that I’ve met in person since Yirmiyahu was born – but after a few minutes of chatting the evaluator arrived and our conversation ended.

I had the chance to meet with Professor Feuerstein, a living legend at the age of 90+ who has been a leader in this field for over fifty years.   He did a short evaluation of Yirmiyahu (this was in addition to the main evaluation) and though it was a bit difficult for me to hear everything he said (since Yirmiyahu was complaining in my ear and the professor didn’t speak very loudly), he was very enthusiastic about Yirmiyahu’s development so far.  He clearly delights in working with children and was warm and encouraging.  He himself has a grandchild with T21 who is in his early 20s now.  He concluded our conversation by telling me to be sure to send him the invitation for Yirmiyahu’s wedding.  🙂

I think Yirmiyahu is developing well, but I don’t really have anything to compare to.  So it was helpful to get feedback from those who have been working with the T21 population for so long.  At the end the evaluators commented it’s uncommon for them to see a baby with T21 like Yirmiyahu.  I knew they weren’t referring to his extreme cuteness 🙂  so  I asked what that meant.  They said that he’s amazing!  I asked what that meant, and they said he’s doing so well in every area – good mouth closure even with a stuffy nose, minimal signs of low muscle tone, attentive to people and sounds, good eye contact and tracking, a lot of verbal babbling  – this isn’t typical for the infants they see.  I’ve been worried that I haven’t been doing enough for him, as well as worrying that the breathing issue caused by his sensitivity to his formula has been compromising his development and this was really reassuring.

I then asked what their thoughts on low/high functioning children were.  One evaluator told me that what matters isn’t the starting point but how much the parents invest into the development of their child, because that’s what determines the outcome.  I told her that while that may be true with older children, I can’t see that it applies in our situation because Yirmiyahu is only six months old and if he’s doing so well, maybe he was born advantaged.

Both evaluators immediately disagreed and said that they noticed a number of things I’m doing that I may not be conscious of that are benefiting him in his development.  I had to ask what I’m doing, since I thought I was just holding him while I was speaking with them!  The examples they gave were all what I consider just being a responsive mother – establishing eye contact, talking to him, holding him securely, showing him things.  Then one said, “What you’ve done that is unusual is believe in his abilities and treat him accordingly.”  They also said that carrying him in a wrap is wonderful for his development since he gets to see so much of the world from a different vantage point than being on the floor.

I put Yirmiyahu on the waiting list for weekly therapy services there (speech, OT, PT), but it will probably be months before there will be room for him.  I don’t know how I would work out a weekly trip with him to Jerusalem, but I’m thinking that if I can do it, it would be very beneficial to work with people who have experience with the specific needs of kids with T21.  They were taken aback when they learned that he’s not getting any kind of therapy where we live except for weekly physical therapy, and asked why.  I told them what I was told, that there’s no benefit to him getting speech therapy until he’s talking, no benefit to occupational therapy because he’s too young, and in any case his physical therapist can integrate elements of all the therapies into his weekly session.  They asked what I thought about that.  I told them that I don’t agree but I’m not going to fight for services because it won’t benefit Yirmiyahu to be seen by therapists who don’t think he needs help and don’t know what kind of help he needs.  I’m learning what I can on my own and trying to add it into the day as much as I can.

As a mother I don’t look for support from the traditional medical representatives, which is a good thing since I’d be very disappointed if I was.  What they like is when you do what you’re told without asking any questions or without any thoughts of your own ( last week a doctor told me with disapproval: “You’re an intelligent woman but you’re independent”).  As a result, I’ve minimized talking about any initiatives I’ve taken with Yirmiyahu.  Even things that to me seem really minor and pretty close to mainstream seem to annoy them – a little example of this is when last week a doctor asked if I give him iron, and I said that it’s included in the vitamin supplement for people with T21 that he gets daily.   Then I was asked with annoyance, why are you giving that instead of the iron supplement that we give to all children?  Honestly, I really don’t think this should be a big deal.  Don’t think that I’m going to bring up craniosacral work, nutritional support, neurodevelopmental techniques…So you might be able to understand how nice it was to be validated rather than criticized for my efforts to help him!

Not only were they encouraging about how he’s developing now, but also about his future.  They’ve worked with so many kids and seen what can be accomplished, so they really believe in kids with T21 and are matter of fact about their ability to accomplish things that most people believe to be unrealistic – namely, to live a normal and meaningful life.

Avivah