Today I took Yirmiyahu for his first physical therapy appointment in five or six weeks.  He lost a lot of muscle tone when he was so sick – he was like a newborn or even less, totally unable to support his head at all for a while.  I asked the doctors how long it would take for his muscle tone to improve, and they told me that they can’t predict when that would happen.  I reminded myself that we worked on muscle tone before and we can do it again but honestly I was discouraged at the thought of starting from scratch again.

I’m happy to say that after about a month, he’s mostly back to himself with even a couple of areas that he’s progressed in!  At today’s session the therapist wanted to assess where he’s at now.  During our session she reminded me about something she told me about a couple of months ago.  At that time, she described to me the special daycare (maon shikumi) for infants with disabilities, where they can get therapies of all types throughout the day.  It’s a full day program from around 7:30 or 8 am until 3 (I think), and it’s very close to our home.  Not only is it free, but we’ll be able to get transportation to and from the door of our home to the door of the daycare, also fully paid for.  Obviously, it’s a no brainer that any caring parent would rush to put their child in this framework.  Isn’t it?

A couple of days after Yirmiyahu was in the intensive care unit, the doctor who admitted him spoke to me and told me that his condition had been critical, and that there would have been no way to help him if we had gotten there even a few hours later.  A nurse from that unit told me that his blood work was so bad that they were all frightened when they heard his results called in from the emergency room to their unit in advance of his transfer.  To hear that his situation was so bad was very hard, really very emotional – it was then that I emotionally just turned off to handle the overload of what I was feeling.  So when ten minutes later a social worker came in and introduced herself, I knew she had come to see how I was handling everything.

To my surprise, she began by mentioning Yirmiyahu’s T21 diagnosis, and then started talking about this specialized daycare program available.  I just listened and nodded my head at appropriate intervals, but I guess my lack of response gave her the impression that I wasn’t going to put him in.  She kept telling me that I have to make decisions based on what is best for him, not my feelings, and how much better it would be for him than being at home.  She repeatedly told me to check it out before making any decisions.  I had such a sense of unreality to have her discussing this with me with Yirmiyahu lying there hooked up to oxygen, a feeding tube and monitors of all sorts.  It seemed really inappropriate that this was the topic that she felt was a priority to talk about right then.

Now that Yirmiyahu is nine months old, apparently it’s now a priority that he go into this daycare.  Today when the topic came up again and I was asked about my plans, I told the therapist that I don’t think this is the best option for him right now.  I don’t speak very openly with therapists and doctors because we have such different paradigms that it makes honest communication very challenging.  When I’m speaking English I can reframe paradigms for others, but I don’t have the nuanced Hebrew to be able to effectively do this.  And I don’t like to sound unintelligent about something that I’ve put so much thought into.  I keep things that could sound controversial or argumentative (that means most of my thoughts about anything that aren’t in lock step agreement with them) to myself.

She listened to my response, then wanted to know why?  I didn’t talk at all about the developmental benefits to a young child of being home with  loving and supportive parents.  Love and emotional security play a big part in a child’s development – even therapeutically, there are exercises that Yirmiyahu does because he loves the people doing them with him, and we do them when he’s rested and interested and stop before it’s too much.  This is really different than therapy – he’s a very good natured baby and usually only cries when he’s tired or hungry, but at every therapy session he spends at least half of the time crying.  He gets tired and wants to rest or be left alone but the clock says we need to be there longer so he has to keep having his body moved in different positions because it’s ‘good for him’.

Anyway, that’s what I didn’t  talk about, because I know how different this is from the way they see things.  The thinking here is the earlier you put your child in a framework outside of the home, the better – and for a child with ‘special’ needs, his therapeutic needs totally take precedence over anything else in his life.  It’s almost like they become their diagnosis first and foremost, rather than being a child with a diagnosis.  That’s a really big difference.  And when you’re not thinking of a child’s holistic needs, you think differently about what is best for him.

What I bascially told her was:  “At both of his evaluations, we were told that Yirmiyahu is excelling in every area of development.  So whatever we’ve done with him seems to be working well for him.  He gets plenty of stimulation at home; he’s not laying in a crib staring at the ceiling.  It doesn’t seem to me that at a daycare they can give him better results than we’ve gotten.”

I often have a strong feeling that there’s an expected script and I’m not reading my part.  My part is supposed to be to along with whatever I’m told is good for him.

I did agree to visit the daycare so that they can see that I’m a reasonable person.  I don’t want to do this because I don’t need to subject myself to more people telling me how what they can offer is so much more than me, people who assume that a parent doesn’t do anything on their own and that the experts are always better.  Doing things that other people want me to do that I don’t really see the value in is something that since moving here I’ve done much more often than I would have liked, but it seems to be part of working within the system.

Avivah

Avivah asked me to post an update for those of you who are concerned. When Yirmiyahu was originally admitted to the hospital on Thursday, we did not realize how serious his condition was. The admitting doctor told Avivah a couple of days after he was admitted that his condition had been critical and if we had come in a few hours later he would not have made it.

Needless to say, that is a very scary thought. Thank G-d we did get him to the doctor and hospital when we did.

After five days, as of this afternoon Yirmy has been taken off all the lovely plug-ins that you see in the image and has been moved from the pediatric intensive care unit to the regular children’s wing of the hospital.  He is eating on his own, making eye contact, crying appropriately, sleeping well and even emitting some of his cute gurgles. He has not smiled yet and is still quite weak, so they are keeping him admitted for the time being. Avivah is with him in the hospital and I am holding down the fort here with my kids.

That is the update until I speak to Avivah again.  She will probably ask me to add some details.

Avivah’s DH

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