When Yirmiyahu was about six weeks old, I found time to call a couple of people with older children with T21.  Both of them warmly congratulated me and when I asked about what they found helpful for their child, told me the most important thing was to love him.  I understand the importance of this advice – too much time is often spent mourning the diagnosis instead of falling in love with the special baby that we were gifted with – but at the same time, I wanted concrete information.

I loved Yirmiyahu before he was born and didn’t have any ambivalence when I learned about him having T21; what I wanted to hear was what could I do to help him moderate the difficulties that come along with his diagnosis.  I got almost no suggestions to this question other than take him to therapy.

Not long ago, I shared what we’ve done with a mother in Australia who wanted to know what she could do to help her baby with T21.  Since I started researching this when Yirmiyahu was 2 days old (thanks to being moved to a hospital room where I could access the wifi!), I was fortunate to gain a lot of information early on.  Some of the things we do are based on reading done since his birth, others are things that we implemented based on my prior knowledge of nutrition or child development.  Almost all of these suggestions would be helpful for a typical baby, too.

Nutrition:

1) Breastfeeding – this is very important for every baby, and a baby who is born nutritionally depleted (as those with T21 are, regardless of the health of his mother) benefit even more.  I’m grateful that for the first ten weeks Yirmiyahu got exclusively my milk (though we then began supplementing since we had challenges with weight gain); my plan had been to continue in this way long term but unfortunately things didn’t work out that way.  Our main health issues have come from introducing formula and if he was exclusively nursing we could have bypassed a lot of this.

2) Nutrivene-D vitamin supplement – individuals with T21 have an extra chromosome in every cell of their bodies, which means that there is 50 percent more metabolites; this creates a situation called ‘gene overexpression’.   There are ways to treat this overexpression; I think of it as adding vitamins so that he has the same proportion as those without the extra chromosome.  There are those who say this is unproven and a waste of money; there’s nothing in my research that leads me to think this is an unnecessary or unimportant addition to his daily diet.  Yirmiyahu gets a half teaspoon daily, split between two bottles.  The taste supposedly is unpleasant but we haven’t had any problem with him drinking it along with his formula.  (Here’s an article that covers some of the relevant biochemical issues.)

3) Edited to add – I have since learned that cod liver oil is not recommended for children with T21! Fermented cod liver oil and butter oil – these work synergistically together, and he gets 1/4 t. of each daily.  I emailed the Green Pasture company to find out how much DHA was in each teaspoon, and they sent me the following information:

Each teaspoon of fermented cod liver oil contains:

• 1825 IU vitamin A
• 427 IU vitamin D
• 150 mg EPA
• 90 mg DHA

What I especially like about both of these oils is that they are food sources of these nutrients, not artificially boosted, so the body absorbs them more completely.  These are beneficial in many ways, but a main concern of mine in addition to supporting cognition is improving bone health – individuals with T21 have underdeveloped facial bones, which I believe is connected to their nutritionally depleted status.  Adele Davis wrote about underdeveloped facial bones and their connection to nutrition many years ago.

4) Probiotics – about 9 billion cfu daily – I mix this into one of his bottles along with the Nutrivene.  Yirmiyahu was born with transient leukemia and in his first days of life had very high dosage antibiotics administered to bring his white blood cell count down to the normal range. I began giving this at six days old via his feeding tube (I mixed it with the milk I expressed); probiotics were critical to rebuilding his digestive flora, but are very important for everyone.  Gut health is at the root of all health.

5) Baby GAPS protocol – we’re beginning to introduce other foods using the baby GAPS protocol.  This begins with meat broth, gradually building up quantities and adding in blended vegetables, meat, chicken, etc.  I plan to add a little bit of juice from our homemade kimchi into his bottle of broth in place of the recommended yogurt.  Since individuals with T21 are almost always sensitive to gluten and casein, as he gets older I intend to keep him on a gluten free, casein free diet.

Physical/cognitive development– physical development leads to cognitive improvements, and cognitive improvements lead to physical development, so I can’t separate this into two separate categories.

1) Crawling track – we keep him on his stomach as much as possible, though not nearly as much as recommended by Glenn Doman.  He doesn’t like being on the inclined track for long with his head downward, but we’ve found he loves being on it with his head positioned upward and can stay there for a while in this position.  I attribute his strong muscle development mainly to the time he’s spent on his stomach.  Last week his physical therapist, who usually doesn’t make any comments about his development, told me she was impressed by how well he was holding certain positions.  She has a traditional perspective on physical therapy which sometimes contradicts the neurodevelopmental approach (eg doesn’t see tummy time or crawling as important, just sitting and standing), but rather than disagree I go on doing what I’m doing and let her by surprised when he’s doing so much better than she expects.  🙂

2) Balance exercises – we lift him up and down ten times, several times a day, and from side to side ten times a few times a day.  DH also does a swinging set of exercises with him.  All of these are according to the Doman suggestions, though as with everything, I don’t do anything as much as he recommends.  These are really fun and Yirmiyahu loves them, and I appreciate things that are easily and naturally integrated into life that don’t feel therapeutic but are beneficial.

3) Grasping exercise – this begins with having a baby grasp your finger when put into his palm, and then continue until he can support his weight fully when holding on to your thumbs.  When Yirmiyahu was born he had very low muscle tone, and the instinctive reflex to grasp something was totally missing; to expect him to independently support his weight by holding on to something seemed wildly unrealistic for him.

But we kept encouraging him every day to grasp our fingers and when he did, bit by bit would slightly pull our finger away to encourage a firmer grasp.  Now he can pull himself up from a laying position while holding on to my thumbs; several people have recently commented on how strong he is when they gave him a hand and he began to pull himself up!

4) Baby wearing – I usually wear Yirmiyahu in a wrap when I go out.  This is great for his vestibular system and also good for his cognition, as he experiences the world more actively than if he were lying in the stroller.

5) Cross patterning – these are exercises that are done to strengthen the connection between the right and left hemispheres of the brain. We recently began doing this once or twice a day; three of us manually do these exercises with him by moving his arms, legs and head in the rhythmic, alternate motion that is used in cross-crawling.  I have mixed feelings about this because Yirmiyahu hates it.  Right now we only do a couple minutes at a session.  I’m considering changing this to a two person team, moving just his arms and legs; maybe he’ll do better with this.  I’d like to build up to five minutes twice a day. (Update: we tried patterning with two people, and it’s much, much better!  He usually smiles or looks content for most of the time; when he starts to cry we stop right away.  Now that it’s so much more pleasant for him, I don’t feel ambivalent anymore, and I think within a day we should be able to build up to ten minutes a day, broken up into several short sessions.)

6) Oral motor exercises – I do these sporadically with Yirmiyahu; these are exercises to help increase his oral motor awareness and strength.  It would be good if I were more regular, but I got off track when ds14 was hospitalized.  I plan to be more consistent about this as he begins solids.

7) Deep pressure exercises – I began doing deep pressure with Yirmiyahu when he was four days old and in the NICU.  I began with squeezing each part of his hand and arm slowly and deeply, to help him build awareness of his limbs; when he got out of the NICU I could touch more parts of his body so I then moved on to doing it on his legs and feet.  I try to do this at least twice a day, and coordinate it with diaper changes.

8) Massage – I massage Yirmiyahu about once a day, usually at the time of a diaper change.  Massage benefits muscle tone and motor functioning.  Here’s a paper about the benefits of massage for children with T21.  He also gets a professional massage once a week at his visit to the naturopath.

9) Music – music benefits the brain and also prepares a baby for speech, by improving his auditory tonal processing.  We play classical music almost every day, usually Mozart but I like Vivaldi’s Four Seasons and Rossini is my favorite classical composer so they also get regular airtime in our home.

10) Books – Jim Trelease writes in the Read Aloud Handbook about parents of an infant with T21 who constantly played audio recordings of books; he met them when the girl was beginning college.  Hearing lots of language is stimulating, particularly books with patterns (eg ryhmes).  When I read with the littles, if Yirmiyahu is awake he sits on my lap to listen.  We also just started accessing audiobooks from our library in the US (very exciting!) so now we often have stories being read aloud.  When reading with just him I keep the words very simple, just pointing at something and clearly telling him the name of it.  This is something I’d like to do a lot more of but I don’t have the materials or time to create them, so I work with what I have and it will have to be enough.

11) Alternative health therapies – I take Yirmiyahu to a naturopath every week who does craniosacral work, reflexology and massage with him.  I love taking him because he LOVES this!  He has the look of a little prince as he languidly stretches out and enjoys it all.   The craniosacral work is particularly important to keep the bones of the head and face in alignment.

This is a bit of a complex topic but one thing I’m hoping is that this will help expand his palate, which is very high and narrow, which affects the pituitary gland which in turn affects growth.  (Most kids with T21 are smaller than their same age counterparts.)  More active plans for expanding his palate will wait until he’s older though this is something I began thinking about within the first hour of learning he had T21.

Yirmiyahu also has lots of older siblings who play and talk with him plenty, so he gets lots of love and attention!  We repeat sounds that he makes back to him, and try to clearly articulate sounds and exaggerate the shape of our mouths to make it easier for him to imitate.  We try to be sure whenever he’s awake that he has some kind of stimulation but in the same integrated way that you would treat any baby.  I feel it’s very important that it doesn’t feel to him or everyone around him that everything is therapy, since it reinforces the disability label and mindset.

I have an intake appointment at Shalva in Jerusalem at the end of February, and once they have a slot for us hope to take Yirmiyahu once a week for a morning of therapies – speech, physical and occupational- he’s only getting physical therapy right now.  We’re on the waiting list at the Feuerstein Institute in Jerusalem and we’ll see how to manage that once we get to the top of their list!

There are neurodevelopmental programs that take six to eight hours a day, but I can’t do anything like that without neglecting everyone else in our family.  And I honestly don’t want to do a program like that because it feels imbalanced to me (not to say that it’s imbalanced for others; if they can do it and stay sane, that’s fantastic!).

Yirmiyahu is just one member of our family, and him having T21 doesn’t make everyone else’s needs disappear.  So I do what I can in ways that I can fit it into our day.  Something that was really helpful about getting the positive feedback at the evaluation at the Feuerstein Institute, when they told me that he’s on a very different level than most babies with T21 that they see, is that it helped me let go of the feeling that I’m failing him by not doing more for him and instead feel positively about what I am doing.

Avivah

I received the following comment to my recent post, ‘Down syndrome – our special gift‘:

>>I hate to be a downer, but its all very easy and good to say that someone with down syndrome is a special gift when they’re a baby, but when they’re 40 or 50 and never grow up, are constantly a child that will need to be looked after, even when you’re old and will need someone to take care of you… how, then, can you say “I got a lamburgini”? I really think you’re not in touch with the realities of what it means to have a kid with downs syndrome. Yes, as a baby they smile a lot, but theres limits to how different they are from all other babies. Its when, as they grow up, they don’t really grow up much and always need more care than other kids, even well into adulthood… Well, I’m interested if you’ll still be singing the same tune then.

Can you tell me- what are the special benefits of a 20 or 30 year old with down’s syndrome? Or a 10 or 15 year old?<<

I’m sure there are others who think I’m deluded to feel grateful for the child we have, as he is, and so I’m glad this was asked so I can share a bit more of why I feel the way I do.

To the person who wrote this comment and others who are wondering the same thing:  I wonder if you have children who have reached their late teenage years or beyond?  I’ve found that those with older children have an understanding that a child being born typical is no guarantee of later results.  It’s nice to think that your newborn baby will bring you nothing but joy and gladness, and sometimes it works out like that – and often it doesn’t.  From my  observations I’ve seen that most families I’ve met (and spoken to about what’s really going on in their lives) has experienced significant challenges with at least one child, and milder challenges with the others. By significant challenges  I’m referring to depression, molestation, addictions of all sort – in addition to the more common learning disabilities, rebellion or extreme unpleasantness.  Plenty of these children are extremely bright.  High intelligence is no guarantee of anything – right now on the news there’s the horrific story of the extremely intelligent young man who entered an elementary school and started killing little children and their teachers after killing his mother.

Or what about parents of children who are born healthy in every way but at some point have serious health challenges?  Or whose child was born prematurely or suffered a birth related injury that causes brain damage, or at a later age suffered an injury that caused brain damage?

My point is that your question makes a false assumption that all parents won’t be faced with very real and even frightening situations regarding their children.  I can’t emphasize this point enough because this reality puts the above question into perspective.   There will be challenges from your children – major challenges at some point – and there’s a false security that comes from pretending otherwise.   I hope I’m being clear about this before I proceed to responding to the specifics of what was asked.

I don’t think that Yirmiyahu will ‘constantly be a child who will need to be looked after‘ when he’s 40 or 50.  Those with T21 who were raised in past generations didn’t have many of the benefits available to children born in this generation.  Never before have things looked so good.  My expectation is that Yirmiyahu will be able to live an independent and productive life as an adult.  Is this living in a dream world or in denial?  No, this is is a reasonable outcome based on all we know now about Trisomy 21 and what adults with T21 are currently accomplishing, what can be done to help our children reach their potential, and this is how we will raise Yirmiyahu.  As world famous brain specialist Dr. Reuven Feuerstein has been known to tell parents what they can look forward in the future for their adult children with T21 – ‘his/her wedding!’

Children with T21 usually have cognitive delays.  Delays doesn’t mean that they never move forward – it means that they get there more slowly.  A baby with T21 will usually crawl later, walk later, talk later – but they get there.  We plan to mainstream Yirmiyahu as he gets older – a child with Down syndrome might enter a typical first grade classroom at the age of 7 instead of 6, and graduate high school at 20 instead of 18.  He may need academic modifications in order to be successful.  I can accept that.  As far as potentially lower IQs, I haven’t seen high IQs correlate with increased success or satisfaction in life, and people with a lower IQ can still have a meaningful life.

>>Can you tell me- what are the special benefits of a 20 or 30 year old with down’s syndrome? Or a 10 or 15 year old?<<

I’m not there yet but I believe we’ll find them – keep reading and I’ll keep you posted when Yirmiyahu is 20!  🙂

>>I really think you’re not in touch with the realities of what it means to have a kid with downs syndrome.<<

You’re entitled to your opinion.  I think you’re overly negative about what it means to raise a child with Down syndrome.  🙂   That’s okay, I’ve also seen some older children and adults with T21 that would have given me a similarly negative impression if that’s all I had to go on, and it’s because I’ve researched this so much since Yirmiyahu was born that I was able to put that in perspective and now have a better sense of what the landscape really looks like.  There are lots of reasons to be optimistic and encouraged about raising children with T21 in this century.

If you have a child or relative with T21, what has been your experience?  I’d love to hear the perspectives of others.

Avivah

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