Monthly Archives: September 2014

Tips for supporting a child with Down syndrome

Now that Yirmiyahu is two and in my last post I shared the assessment from the professionals at the Feuerstein Institute that he’s doing unusually well, I thought I’d update on what we’re doing to be supportive of him.  Hopefully this will be of some help to someone else wondering what steps can be taken to help a child with Trisomy 21.

With a long standing passion for nutrition and alternative health, it’s my conviction that what you eat really, really matters.  It affects many more things in the body than we can imagine, and scientists are constantly discovering more and more connections.  I also believe that children with T21 need more specific support than the neurotypical child, and will continue to need more support throughout their lives.

Diet – what we do is very basic.  Yirmiyahu eats a whole food diet that includes proteins, fruits, vegetable and fats (mostly coconut oil and olive oil, some butter) and limited grains.  This is the same as everyone else in the family though we’re more careful with the fats he gets.

We use very minimal amounts of processed foods and don’t give him foods with gluten (wheat protein) or casein (milk protein), both of which are very difficult to digest and can affect the body in negative ways.  We limit these with our other kids but are more careful with Yirmiyahu.

For the first two years he didn’t get any sugar;  now he gets a Shabbos treat along with the other kids if he answers a parsha question (the question we start with for all of our kids when they are little is, “What day is today?” “Shabbos!”  Yes, he knows the sign for Shabbos.  :))  Again, this is similar to our other kids.

Nutritional supplementation – I have a strong preference for supplements that are as close to how they were created in nature but we live in an imperfect world and that’s not always possible.  Our experience has been that the symptoms associated with T21 require more targeted treatment than what food based supplements offer.

Fermented cod liver oil – okay, this stuff is awesome!  It has vitamin D, DHA,  essential fatty acids (and a host of other stuff I’m not mentioning), it strengthens bones, teeth and the immune system.  It’s a superfood that everyone could benefit from.

Probiotics – probiotics are great for everyone, but for someone with a less optimized digestive system, these are critical.  We switched from lactose base probiotics to soil based probiotics several months ago.  I now use Prescript Assist; a little bit goes a long way.  I give him about a 1/4 – 1/2 of a capsule daily.  Homemade lactofermented veggies are another  wonderful source of probiotics but Yirmiyahu isn’t yet a fan of them.

Saccharomyces boulardii – I love this stuff!  Remember Pac Man, the arcade game of the 80s? That’s what this reminds me of.  This probiotic yeast gobbles up the bad yeast and isn’t killed by antibiotics.  This isn’t something I’ve read of anyone else using in the T21 or natural foods world but it’s very valuable for us.

Blood tests when he was in the intensive care unit as an eight month old showed Yirmiyahu had candida.  Since I had researched candida extensively several years before I knew exactly what this was, but asked the doctor for his thoughts on what it was and what the consequences were.  He told  me not to worry about it, it didn’t matter.  Well, it mattered to me since this overgrowth of fungal yeast will manifest itself in many ways as it increasingly breaks down the body.

Yirmiyahu had a good diet but he constantly had loose stools that seemed to burn his skin – his bottom would be bright red and often bleeding after he had a dirty diaper no matter how quickly we changed him.  I tried different things to improve this but the best I could do was slather on a thick layer of zinc oxide cream, which didn’t do anything to improve the underlying problem.

When I added saccharomyces boulardii to his bottles, within a very short time his stools normalized and his rash disappeared.  Since I changed his probiotic to Prescript Assist at the same time, it took me a while to be sure which of the two was responsible for the improvement.  I began leaving out the probiotic and it became clear this was what was making the difference for him.  Since I began giving this to him at the beginning of the summer, he’s had only one bad rash.  What used to be a regular sight has thankfully become unusual and I hope this continues.  I love this stuff.

This is especially helpful for us since Yirmiyahu gets antibiotics twice a day and I can put it into his bottle together with the antibiotics, unlike probiotics which are neutralized by the antibiotics and have to be given at a different time for them to be beneficial.  I ‘m unhappy about these antibiotics but have some peace of mind that I can minimize some of the negative side effects by using this.

PQQ – this is a relatively new kid on the block in the scientific community and is Yirmiyahu’s newest addition.  Every person with T21 has neurons that are constantly dying – you understand this is a big concern, right?  That means you can’t assume that your child as he is now, will have the same mental capacity in twenty years.  It’s well-known that Alzheimers is a huge issue for people with Down syndrome as they age.  That’s bad, bad, bad but thankfully there are steps we can take at this young age to counteract this.

PQQ is one of them.  PQQ not only slows mitochondrial decline, it helps grow new mitochondria.  This is a big part of why I supplement – not to see immediate results, but to help Yirmiyahu maintain his cognition now and avoid the inevitable cellular damage later down the road.  He’s on a starter dose of .5 mg per kilo daily.

A very nice bonus is that within a couple of weeks of beginning PQQ, Yirmiyahu became noticeably more verbal.

Multivitamin – we used to give him a multivitamin formulated specifically for people with T21, but switched when he was about 14 months to a different multi that was recommended based on his specific bloodwork (actually it’s an autism multi – GI Pro for anyone who may be wondering).

I’m doing a thorough blood work up later this week and will likely make some changes to his current protocol based on the results that come back.  I suspect something is going on with his thyroid because the soles of his feet are dry; he had this symptom in the past (it took a long time until I learned it was a symptom of hypothyroidism) and it cleared up with supplementation.  I’m not sure what I’ve changed that his feet are dry again; I suspect it may be because I stopped the additional methylfolate, selenium and B12 I was giving but I don’t know if it’s a combination of all three or one particular supplement that is responsible for this.  (All of these are in his multi and I thought he was getting enough through this. )

His thyroid testing when he was about a year old showed elevated TSH and by the time he was eighteen months, we got into a much better range thanks to supplementation.  We also corrected his hypothyroid symptoms; he had become very weak and lethargic.  The doctor said it was normal for T21 and his blood work was normal; I sent his blood work to two people in the US for feedback and made adjustments to his supplements based on their feedback.  He wasn’t properly absorbing nutrients because of his extra chromosome and it was thanks to the addition of supplements that this was corrected and very soon he was back to his energetic and active self.

Ideally his thyroid should be tested every six months (this is a typical recommendation for someone with T21) but this time it’s been somewhat delayed since I wanted growth hormone testing done along with monitoring his blood cell count (we keep an eye on signs of leukemia because of his history), and needed to get that referral from the endocrinologist; I had to wait three months to get the appointment with the endocrinologist that I wanted.  This week when we do the blood tests, hopefully he’ll only need to get pricked one time.  I wish these tests weren’t  necessary but since they are, I try to minimize the discomfort to him by combining as much as possible at one time.

For us, supplements have been very important in helping Yirmiyahu stay healthy.

Hanging exercises – when Yirmiyahu was an infant, we began encouraging him to bear weight by putting his fists around our thumbs as we lifted him a tiny bit.  Now every time we pick him up (unless we’re in public, since people will tell us we’re doing something dangerous), we let him grasp our thumbs and pull himself up.  This little habit has brought big benefits to Yirmiyahu.

It’s strengthened the muscles in his hands, which is critical for fine motor function.  it’s also strengthened his abdominal muscles.  He climbs up ladders, slides – he’s totally independent in the playground; despite being so small he manages to climb things intended for children taller and older than him.  Recently he shocked and amazed the pediatric endocrinologist when he grasped the edge of the wall mounted sink in her office and began swinging from it.  I didn’t think anything of it, but she told me to turn around and watch what he was doing, exclaiming, “Look at him!!  Look at him!  Look what he’s doing!”  She couldn’t believe a child with T21 could have so much muscle strength at such a young age.  Ideally I would have him using the monkey bars daily to further develop this but I don’t have them available and so for now, our thumbs it remains! :)

Early literacy program – we use a computer program called Brillkids for early reading that Yirmiyahu really enjoys.  When he sees me sitting at the computer, he signs ‘words!’ and tries to climb up onto my lap!  This program includes categories of commonly used words – transportation, foods, colors, toys, actions, people, animals, etc – and it gives him regular familiarity with concepts and this translates to better understanding the world around him in addition to hopefully setting a foundation for reading.  I try to do the computer program twice a day with him and more when possible but five times a day is my max (this is at his initiation).  We’re up to lesson 70.

Signing – I’ve taught Yirmi a number of signs and this has been very helpful for him to be able to express himself since his cognition is way beyond his verbal expression, as is true of all young children.  The words I’ve taught him are those that are useful for him day to day – for example, when I noticed how frightened he became when he heard fighter jets roaring overhead, I taught him ‘airplane’, ‘loud’ and ‘scared’.  Now he has a way to tell us what he notices and what he’s feeling – when he hears them from a distance, he will tell us he hears an airplane, or that it’s loud, but only tells us it’s scary when they’re very close.  He also can tells us when something else scares him.  I need to spend some time thinking about what vocabulary would be helpful for him now, so I can look up those signs and teach them to him.  Signing is a wonderful tool.

Communication – I talk to Yirmiyahu a lot and explain what we’re doing as we go along, and have been doing this since he was young.  Most of this is intuitive.  I have one of the books by Dr. James McDonald called Play to Talk, and this helped me tweak what I was doing to be more effective.  He writes a lot about how a parent or sibling is the best play partner for a child and it’s through play that a child learns the most.  He gives clear guidelines for how to make interactions with your child a meaningful opportunity for communication and connection.

Craniosacral work – I take Yirmiyahu about once every 5  – 6 weeks to a wonderful osteopath who does craniosacral work on him.  She works on different specifics each time depending on what area of the body she sees needs the most balancing.  She almost always works on his respiratory system since this is a part of his body that has always been weaker.  This week she did a lot of improve circulation and to help flush out his system (important since people with T21 are less able to get rid of toxins on their own).   When he was an infant, one eye would periodically get goopy, but after she began working with him to release the underlying block in his facial structure, this disappeared.

I’ve asked her to work on his palate since it remains high and narrow even though it’s improved quite a bit since he was born.  This is important since the pituitary gland is above the palate and I want that to function as well as possible.  It was easier for her to work on this when he was younger since now when he bites down, he has teeth!  She does most of the facial work externally and very quickly; most of her time is spent on the rest of his body.

Siblings – my kids are crazy about Yirmiyahu and I can’t overstate how important they are in his life.  He has constant playmates and plenty of opportunities to see and model typical behavior, which is no doubt why his social skills are so good.  He doesn’t have to be taught to take a turn or throw a ball to someone – it’s part of his daily life!

**Disability Is Natural** The mindset that underlines everything I do and how I do it is based on accepting Yirmiyahu exactly as he is right now and believing in his abilities.  I was gifted with the book Disability Is Natural when Yirmiyahu was very young.  Quite some time ago I commented to my husband that over the years, my paradigm of what I assumed to be true and what I now believe had shifted in several key areas that changed my life – pregnancy/birth, education and health/nutrition.  With all of these I grew up accepting what everyone did as the norm until something prompted me to explore an alternative viewpoint, and each paradigm shift dramatically changed my life.   I commented to him rhetorically, “I wonder what the next life-changing paradigm shift will be?”

This book was it.  This prompted my next huge shift in thinking about a topic I had never given much thought to.  It is so powerful and I think it should be required reading for everyone on the planet. :)  Seriously.  This will give you so much food for thought and affect your parenting of all of your children and others you interact with in a positive way.  Fortunately, the author has a website with a free newsletter so you don’t have to spend a penny to read more – http://disabilityisnatural.com/.

When I read this book, I kept thinking, this woman thinks like me!  (I did keep wondering how with her personality she dealt with the constraints of the school system and the necessary advocacy – and then in the end she wrote about discovering homeschooling and stated that she wished she had done that from the beginning!)   This paradigm has helped me to find the inner balance of being proactive in addressing Yirmiyahu’s needs and fully accepting who he is.

Avivah

Feeling confused…why is Yirmiyahu doing so well?

Yirmiyahu, age 2

Yirmiyahu, age 2

I’m back from a long day in Jerusalem!

Our visit to the Feuerstein Institute went well.  The eight staff members I met were all professional, warm and caring.  Yirmiyahu was part of a group of five children; I knew he would be the youngest but didn’t realize there would be the big gap there was.  This is the youngest group of children at the Institute right now.  He’s 26 months, and the other four kids were all 3.5, almost 4.  So he’s really, really much younger.

Fortunately this didn’t pose an issue for Yirmiyahu!  Far from it.  He did great.  Even though he woke up at 5:30 am and was tired from traveling and a disrupted sleep schedule, was in an unfamiliar place with unfamiliar people – ie far from his sparkling best – he participated fully in each session.

There’s no question that there’s a lot to gain from being at a place like the Feuerstein Institue, but I decided not to pursue further participation at this point for a number of reasons.  A big part of that decision is that even though Yirmiyahu is so much younger than the other children in his group, he’s more advanced than all of them.  Initially when I had questioned putting him in a group of kids who were older (not realizing how much older they would be!), they said it would advance him to be around older kids.  But I don’t believe that will be true in his case.

There would definitely be benefits but as of now, the other considerations outweigh them.

Since Yirmiyahu was very, very young I have felt he wouldn’t benefit from being in a special education setting, and that conviction was strongly reinforced yesterday.  I don’t look at him as a child with special  needs and don’t treat him like a child who is limited – because he’s not.  Despite my belief that it’s best for him to be with typical kids, I agreed to put him in this group of children with developmental delays because of the incredible reputation of the Feuerstein Institute.  But I felt increasingly uneasy as he sat around the table with the other children.  It felt like a mismatch for who he is and what his needs are.

I paid close attention to everything each therapist did in every group and how they said it because I wanted to soak in as much as I could to hopefully apply their strategies at home – and I was continually struck by how similar it is to how I speak to Yirmi.  That was a big eye opener to me and I began to understand what the evaluator meant when she told me at his six month evaluation that I was intuitively doing the things with him that they usually have to teach parents.  I spoke to a mother during a break and asked her about the experience at the Institute.  One of the things she said is that there are some people who intuitively do these things with their kids, it’s natural to them and they don’t see what the big deal is.  It seems I’m one of those parents.

At the end of the day, I was speaking to a different mother whose daughter was in Yirmiyahu’s group and asked her something specific about her daughter.  She told me, “You’re not going to have an issue because your son understands everything!”  I asked her how she could possibly have noticed that, and she said it was obvious that of all the kids he was the one who understood in every situation right away what he was being asked to do and did it.

Also at the end of the day, the occupational therapist exclaimed, “Your son is amazing!”  She asked if his therapists locally are going crazy by how well he’s doing.  I asked her why she said that – I don’t know any kids with T21 in person who are his age to gauge his progress and anyway, I try to avoid comparing my kids to anyone else so I don’t have the perspective to see what she’s seeing.

She responded that she sees many, many kids with T21 and he’s unusually advanced.   She seemed surprised that this wasn’t blatantly obvious to me.  I mentioned that the way the therapists spoke in the sessions was similar to how I speak with Yirmiyahu, and she said it’s clear that I’ve been mediating (to use a Feuerstein term that means to actively help your child process and make sense of the world) since he was born.  I often hear comments that he doesn’t look or act like he has T21 which I mostly disregard, but the feedback from staff members at this institution is based on many years of experience so that counts for more than the casual comments of someone in the park.

I’m frustrated with my lack of clarity about all of this.  When people told me over the years that my kids were so well-behaved or kind or responsible, I thanked them and knew what efforts I had made that led to that result (along with a huge dose of heavenly assistance – our efforts are never soley responsible for our success).  I could tell you how to do it, too.

But in this situation, I don’t have that same feeling of confidence, of knowing that I did this and it led to that result.  I know what I’ve done and could give you a list if you asked me but I couldn’t tell another parent with the same confidence I can when it comes to parenting issues, do this and you’ll get this result.  I keep wondering, could it really be this simple to successfully raise a child with T21?  It can’t be, right?

I don’t want to downplay what I do with Yirmiyahu.  But I see what I do with him as mostly being a responsive mother just like many mothers out there and have a hard time imagining that this is unusual.  I don’t sit around doing therapy.  I don’t sit around practicing speech.  I don’t sit on the floor playing educational games every day and I don’t read him books every day.

Staying close to his siblings during waking and sleeping time :)

Staying close to his siblings during waking and sleeping time :)

Mostly I just love him.  I talk to him like I talk to all of my kids, I know he’s smart and capable and I expect of him what I expect of all my kids.  And he gets lots of love and stimulation from all of his siblings.

I remember predicting to myself in the early days (when he was less than a week old and in the NICU) that when he got older I would hear how lucky I was and that he must have been born high functioning.  I was prepared to hear it was luck and I didn’t anticipate the professionals being so verbal about it being a direct result of my efforts.  It’s nice but I’m uncomfortable with it.

Yirmiyahu, 2 years old

Yirmiyahu, 2 years old

I feel a lot of humility and gratitude for how well Yirmiyahu has done.  Even though there are things I’ve done and I know they matter, it seems like it should take a lot more than the efforts I made to see the results that surprise people so much.  (I don’t see anything surprising, he’s doing well but I don’t think he’s a superstar.)

Is it possible that because I loved him as he was from the time he was born, actively mediated the world for him, believed in his abilities and kept my expectations high, that he could be doing so well?

Food for thought.  I’d love to hear your thoughts and experience!

Avivah

Finally – an opening at the Feuerstein Institute! Now what?

flash-placeholder[1]When Yirmiyahu was six months old, I took him to the Feuerstein Institute in Jerusalem for an evaluation.  At that time I put him on the waiting list for services there, and was told he would probably get in at the beginning of the school year.  Last year.

So here we are a year and eight months later, and I just got an email saying they have a space and do I want it?  It’s in a group setting and begins this week.  He’ll be the youngest of five children with various developmental delays, and the three hours will include speech therapy, occupational therapy and instrumental enrichment (this is a Feuerstein term, it’s nothing to do with musical instruments).  The first two therapies they said differ from typical therapies because of their focus on cognition.

You might expect me to be jumping with joy but the truth is I felt a lot of ambivalence when I got the message.  First of all, it’s expensive.  I was told that I should get some kind of money back from the insurance company but I don’t know how much and I don’t know when I would see that money.  It definitely wouldn’t all be covered and I don’t know what’s going to be involved in getting a refund through the health care system.

In addition to that expense is the cost of traveling to Jerusalem every week.  That’s  not cheap and it’s also not a short and easy trip.  This is my biggest concern.  Yirmiyahu is thankfully a very healthy and active toddler.  His willingness to sit on the bus lasts about ten minutes and the forty minute bus ride to the pediatric endocrinologist last week required a lot of active involvement on my part to keep him from climbing down.  Three hours on a long distance bus that won’t allow for getting up and walking around is really, really exhausting.  That trip would be followed by a local Jerusalem bus for another half hour of travel.  So it will be a minimum of seven hours of traveling, not including wait and transfer time, for a three hour appointment.  It’s a full day – I would leave Karmiel at 6 am and hope to be back by 4:30 pm.

And then I thought, this is the only place in this country that believes in our kids the way that I do, that knows what they can do and supports that.   I expect Yirmiyahu to be an independent and capable adult and it would be so, so helpful to have other professionals actively supporting that, who have the knowledge and experience to guide us. That support would be worth a lot to me.  I still find a lot of encouragement and reassurance from the one evaluation at Feuerstein when he was six months, and there’s a lot to learn from them! 

I decided to put aside my thinking about the limitations and difficulties involved in participating, and trust that if this is what he needs, we’ll be able to make it possible.  He’s  now scheduled to begin tomorrow.  I told them I can’t commit to a year or even more than a month since I have to see if continued participation is feasible for us, but I’m really looking forward to a positive experience there.

Avivah

The sudden inflow of old friends into my life

friendship-heart[1]I have been having the most amazing experience in the last two weeks.  Suddenly several good friends from the past who I lost touch with are popping up again into my life!  It’s uncanny.  One person would be really nice but this sudden inpouring of people who remained close to my heart even after losing touch is just incredible.

Two of these reconnections came through my ds21.  He called a couple of weeks ago and told me to guess who his new roommate is.  I guessed the son of a friend who lives in Israel who I used to be close with.  ‘No’, he said, adding in an offhanded way, ‘though he also just started at the yeshiva’!  It turns out his new roommate is the son of a good friend in Canada who he was together in gan with – in Israel – when they were both three!  His yeshiva has only 37 guys, mostly Americans, and yet the son of two friends from Israel (who used to be our immediate neighbors in a building of only four families) and another young man from Canada – and of course my son, who came from the US – all ended up together!

The next friend I lost touch with when I moved from Israel to the US about 15 years ago.  Initially we sent one another letters (remember what communication was like before cheap/free international calling and email?) but over time that petered out.  She somehow found my contact information and we enjoyed our first talk in 15 years.  She said to me, “Avivah, it doesn’t feel as if any time at all has gone by when I’m talking to you!”  It really didn’t.

Lastly is the reconnnection of a dear friend from high school/seminary.  She was with me at my stepfather’s funeral when we were both 16, she was there when my mom flew to Israel for my wedding and her luggage got left behind – she accompanied my mom to the airport to pick it up an hour before my wedding was scheduled to begin.  (In case you’re wondering, we held off the reception until they got back – it was a mad rush.)  We last saw each other when my oldest was three months old.  And now after 21 years, thanks to a picture posted by a classmate of hers on Facebook, we reconnected.  (Please daven for Chaya Raizelle bas Chana Shaina that the medical diagnosis she receives today is clear.)

When I had considered trying to get back in touch with friends, I thought maybe they wouldn’t be interested, they’d be busy – life moves on and maybe I still felt a connection but they didn’t.  But it wasn’t like that at all.  They were all as delighted to speak with me as I was to speak to them.  The connections you make when you’re younger and have more time for friendships are very difficult to duplicate as you get older and busier.

I’ve been blessed with friends who are such incredible people – they were then and they’ve only become more amazing women throughout the years.  As I listened to each of them, I kept thinking what special people they are.  I’m really, really fortunate to have people in my life who have inspired and encouraged me and during our recent conversations, they continued to do so.

I have such a deep sense of love for these friends and I’m so grateful that it was possible to for us to be in one another’s lives again after so long.   True friendships are a special gift.  Now we have to make the effort to keep the rekindled friendship going!

Avivah

Helping kids regroup from the behaviors picked up at camp

>>Do you have any advice for doing “damage control” after camp/preschool etc? After being home with me all year my kids had a fantastic summer at an amazing camp- but several weeks later I’m still trying to remedy the things they picked up there- name-calling, saying hurtful things to each other, as well as more tantrums and less listening, etc. Camp was great but is it worth it??<<

I so much understand this question!

The first time we encountered this phenomenon was when my oldest went to sleep away camp for three weeks when he was 12.  Camp was a wonderful experience for him but it took three more weeks at home until he returned to his pleasant and relaxed self.  The week he came back was the first and only time I ever heard a curse word from the mouth of any of our children.  He was much less pleasant to be around; it was like he forgot how to get along with everyone during the time he was away.

I’ve experienced this several times since then.  It’s a direct result of kids spending a disproportionate amount of time with their peers.  The behavioral changes reflect the increased attachment toward their peers and the diminished attachment to you and your values.  Camp and school both can lead to this dynamic, but so can long vacation days at home if your child is playing with friends all day long.

At the beginning of this summer, I set boundaries to proactively address this, and set a limit of four hours a day my kids could play with friends – 11 – 1 and 4 – 6 pm.  I purposely didn’t let them play for four solid hours with friends since the break in between was helpful in them reconnecting to me at home.  Even so, this was sometimes too much for one child and my older kids kept commenting how nice it would be when we get back to our less peer oriented year round schedule.  They’re quick to notice the signs of peer dependence sneaking in!

Time, connection and reasserting boundaries is the answer to this.  Your kids need to detox and they need your support and love while they slowly discard the behaviors and speech that they picked up while at camp.  Spend as much time in a relaxed and enjoyable way together and try to really enjoy each other.

Then when you see certain behaviors crop up, address them from a place of love and strength.  Be clear about what kind of speech and actions create the home environment that you want to have.  If you hear someone speaking or acting in a way that isn’t in line with that, gently but firmly help them correct the behavior.  (I’ve written at more length about how to establish and enforce boundaries but it’s been a while and you’ll have to search the archives for it.)

An example of something I do with my kids is have them repeat what they wanted to express in an appropriate way.  If someone says something like, “You’re so stupid, why are you always bothering me?” one thing you can do is:

A) Reflect back the feeling – ‘you sound frustrated’, ‘it’s hard to have people using your things without permission’.

B) Then move directly into modeling how they can better express that – “A nicer way to express that would be, ‘Please don’t touch my things without my permission.'”  Then have them replay the scenario using the words you modeled for them.  You can do something similar with physical misbehavior.

Then keep doing that for years :) and one day you’ll enjoy the benefits!

Avivah