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.
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) 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.