Today I was reading a lovely booklet that I picked up yesterday at the Child Development Center where Yirmiyahu has physical therapy (he’s now going once a week).  It’s intended for new parents of infants with Trisomy 21, with encouragement and inspiration based on Torah sources.

As nice as it was, one aspect of it bothered me somewhat – how having a child with Down syndrome was repeatedly referred to as a nisayon (test/trial), and the encouragement offered was accepting this perception as the reality.  I understand that a lot of parents have a hard time with the news that their baby has T21, and they can find comfort in seeing their painful experience as having deeper meanings in the spiritual world, and that’s not a bad thing by any means.

This reminded me of a conversation with dd18 a few days ago, when she shared with me about a book she was reading.  The gist of it was ‘why do bad things happen to good people?”, and an example of a bad thing was having a child with a disability.  Dd said that it bothers her to think of our baby being seen as a bad thing when to us he’s just pure sweetness – we think he’s the most wonderful baby in the world!  Our entire family is so in love with him and though he’s only five months old, he has been such a joy to us from the very beginning.

After Yirmiyahu was born and we announced the news that he has Trisomy 21, some people told us what a great attitude we have, commenting on our advanced spiritual level and amazing faith.  They heard what we said but they didn’t understand what we were saying.  We weren’t on a high spiritual level and we don’t have deep levels of faith.  Our perception wasn’t, “Oh, this is so hard but let’s put a good face on it and tell ourselves that it must be for our good.’   We really felt like he was a special gift to our family.  The difference between feeling you’ve been given a gift or being given a challenge are very significant, and how you respond will correspondingly be different.

If your friends all were gifted with Chevys and you received a Lamborghini, would you feel like you were missing out because you got something different from them?  Would you feel that you were saintly for accepting your car without complaining because you wanted to have what everyone else had?  No, you’d be thinking how lucky you were to get a Lamborghini and be so grateful to the one who wanted you to have something extra special!  What if you needed to pay more for premium gasoline and take your Lamborghini in for more frequent check-ups to keep it humming smoothly?  You’d understand that a more finely tuned machine requires more delicate handling and would willingly pay the price to maintain it well because that’s part of having an Italian luxury sports car!  Well, that’s how I felt about Yirmiyahu – we were the family to get a Lamborghini baby.   I truly believe we were given a baby filled with so much love -was not to test us, not to punish us, not to grow us through a challenge – but because G-d wanted us to have the joy of having a very special gift.

We live in a world in which there is so much competition, and we may want to be better than others but not different in any other way.  So having a baby who looks different and is expected to have a delayed developmental curve seems like a bad thing.  But when we’re so busy looking at what we don’t have, we can neglect to notice what we do have – and children with Down syndrome have some unique gifts, gifts that bring tremendous light into the lives of those around them.

I don’t want to seem like I’m living with my eyes shut, I’m in denial, or have plastered rose colored glasses on my face.  I know that there will be challenges.  There have been challenges.  There have been and will continue to be challenges with all of our children.  That’s parenthood.  But my primary feeling is that G-d gave us Yirmiyahu to make our lives richer and happier.  Saintly I’m not but grateful…absolutely.

Avivah

I’ve learned a lot since Yirmiyahu was born five months ago about infant development.

When I first began researching, I saw repeated references to the importance of tummy time.  And I had no idea what was so important about tummy time!  Though my first nine children spent plenty of time on the floor and slept on their stomachs, I couldn’t have told you why it was important developmentally or imagined the long term benefits in a variety of areas.

I shared about the crawling track that we built for Yirmiyahu when he was ten weeks old, and very briefly summarized why time on the stomach is very important to a baby’s development.  Crawling is a critically important stage that babies should go through that has short and long term benefits on their physical and cognitive development.  I planned to post with more details about how crawling benefits a baby, but then found the following two articles.  It took me some time to piece together the benefits from various references here and there, but these two articles put it together in one place.

The importance of crawling on the stomach

Baby crawling – how important it really is

Don’t think these are relevant only to those who have babies with delays.   As a parent of a child who is expected to have a different developmental curve, I want to understand about what is healthy for development and why, but this is good information for typically developing infants as well!

Avivah

I thought this article was so beautiful that I just had to share it!

Called Loving a Child on the Fringe, the single mother of a four year old daughter shares a bit of her journey into motherhood of a child with Trisomy 21 who wasn’t at all what she expected or wanted – but finds herself unexpectedly enjoying the journey that she never wanted to take.

Avivah

This is a fifteen minute video made by three typical kids and their three friends with Trisomy 21.  In it, they share about the common issues to help others understand what Trisomy 21 is, and how it affects their friends.  Though this was geared to be by kids, for kids, it’s suitable for adults as well as kids of all ages.  I think it would be great for parents to watch this with their children so they have an understanding when they see someone with Down syndrome about what to expect – and the message is, we’re all much more similar than we are different.

I really enjoyed this video!  Take a few minutes to watch it, and let me know what you think – was this informative?  Did you learn something new, or get a different perspective on Down syndrome?

Avivah

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

Today is Day 21 of the 31 for 21 blogging effort to increase awareness about Trisomy 21.

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(Edited to add: While the concept is great and it worked well, I can’t recommend it.  The silicon nipple lasts for just a month before cracking; I bought several bottles and used a number of the nipples included and this was my experience with every single one of them.  This is something that shouldn’t happen so fast and makes this bottle a frustrating and expensive option.  With our second baby with T21, I used the MAM bottle, which also encouraged a strong suck, helped the baby keep his tongue in his mouth,  just 40 shekels for the bottle (versus 160 shekels) and the nipple never cracked.) 

Every time I go out with Yirmiyahu and pull out his bottle, I get curious looks and if the person is close enough to me, they ask me about it.  Here’s why:

It looks a little bit different, doesn’t it?

After spending weeks working to get Yirmiyahu to be able to exclusively nurse, after a couple of weeks I saw that he didn’t seem to be getting enough.  I still don’t know why this is – maybe I didn’t have enough milk, but I think it’s something else.  Unfortunately I don’t have any professional feedback on this so I’m just guessing.  Anyway, since my efforts to remedy this on my own weren’t working, I agreed to the suggestion that we give supplemental bottles.

The bottles were great – I was able to see how much he was getting and that was reassuring, as was seeing the return of wet and dirty diapers.  But something more troubling also presented itself.  When I had taken him to the doctor as well as the physical therapist just three weeks before, they had both commented on how good his mouth closure was.  Since infants with Trisomy 21 have hypotonia, the lack of muscle tone can make it harder for them to keep their tongue in their mouth.  I credited Yirmiyahu’s good mouth closure to nursing.

However, within two weeks of a regular bottle, his tongue began sticking out a lot more frequently.  This isn’t a surprise, since sucking on a bottle requires a baby to thrust his tongue forward, and nursing requires him to pull his tongue inward.  But surprise or not, it was disturbing to me – was this the price I had to pay to help him gain weight?  I was feeling stuck between a rock and a hard place, when a friend suggested the Haberman feeder.

The Haberman feeder was created for babies with feeding difficulties, but I think it’s a good choice for all babies.  It’s the only bottle that a baby has to use his mouth in a similar way to breastfeeding.  There are a number of benefits to this, but the one that most interested me was that it would help Yirmiyahu build his oral motor strength, just like nursing.

Now, getting him to drink from this wasn’t so easy.  While he could finish a five ounce bottle in twenty minutes or so, it took him four hours to drink the same amount the first time we tried this bottle.   This was problematic because we needed to get his weight up, and for a few transitional days I gave him feedings from regular bottles as well as from the Haberman to be sure he was getting an adequate amount to eat, while giving him a chance to learn how to eat from this.

However, we got through that period and have been using just this bottle since then.  Just as quickly as we saw his tongue begin to stick out more, we’ve seen it go back to how it was before.  This would take a lot of speech therapy to overcome if we stuck to the regular bottle, so it’s a big savings in time and energy!

Another benefit is that excess air being gulped in along with the milk is eliminated due to the bottle design.  Yesterday I happened to sit down at the park bench next to the school nurse and she asked me why we didn’t burp Yirmiyahu a few minutes after he started drinking his bottle.  I hadn’t consciously thought not to burp him, it’s just that he didn’t need it.

Here’s a short clip of Mandy Haberman, the designer of this bottle, showing how it works:

The disadvantages to this bottle that I’ve experienced are:

– Cost – it’s not cheap!  We spent 160 shekels on this, which at the current exchange rate is over $40. Contrast that with bottles that are considered upgrades/higher quality and priced at 40 – 60 shekels.   (Updated to add: two nipples are included with the bottle.  Since the nipple lasts only for a month before cracking and becoming unusable, this dramatically adds to the cost of using this bottle.)

– No lid – when you travel with this bottle, there’s no lid to prevent spilling.  I haven’t found much leakage to be a problem as long as there’s no milk in the top part of the bottle, since it required suction to get it out.  But when there is milk in the top reservoir, I just wrap a cloth around it in the diaper bag to prevent any leaking and that seems to work fine.

Avivah