I recently became aware of a number of fascinating online lectures that have been made available for free online. These are from the 2012 AutismOne/Generation Rescue Conference. Just look at the list of topics – they’re all so fascinating that I want to listen to them all! Not that I have the time to do that, but I wish I did!
This year they had a track for T21, since 10% of those with T21 have autism as well. The T21 talks are listed at the bottom of the page of recordings, just scroll down if you’re interested. I’ve only listened to three of the T21 lectures, but I appreciated them all. I’ve spent a number of hours learning about the biochemistry of T21, and I was very impressed at Dr. Anju Usman‘s talk, in which a number of these points were very simply and succinctly explained.
What I love about things like this is that there is so much known about what is going on with these diagnoses, and there are people who are taking action based on that information. I just love this kind of information. You won’t hear it from your doctor. You won’t hear it from most people around you. I’m learning to keep quiet with medical professionals because if I even mention anything slightly non-mainstream that I’m doing for Yirmiyahu (eg the pediatrician didn’t like that I give him a special vitamin supplement formulated for those with T21 that includes iron – she would prefer that I only give him the iron supplement that they recommend to all babies, the physical therapist didn’t like that we made an appointment at the Feuerstein Institute for an evaluation- and to me these hardly touch an alternative approach), I’m spoken to in a way that I find disempowering and unsupportive.
But there is a lot – a whole lot – that we can do to help our children outside of the standard recommendations given. There is so much information here that will be of value to any parent, regardless of if they have any kind of diagnosis or not – for example, I’d been thinking about what I can do to rebuild ds13’s digestive system, which has necessarily taken a hit as a result of the high dosage of antibiotics he’s been given to treat the hip infection. Then I saw Biofilm, Bugs and Bowels: Rebalancing Your Child’s Gut, and watching this reinspired me to get back to making fermented vegetables on a regular basis, something I’ve been wanting to do but haven’t had enough motivation to push to the top of the list. The curried sauerkraut is now in two jars on the counter. 🙂
There are tracks about: nutrition, biomedical research and treatments, gastrointestinal, chiropractic, vaccines, education, therapies…there’s so much good information out there, and even if we learn just a tiny bit, that tiny bit when applied will help our families.
Finding something to feed Yirmiyahu has been an ongoing saga. A while back I posted about needing to supplement nursing since he wasn’t gaining weight, and I made a homemade goat formula that I was very pleased with. He was gaining weight on it, I was delighted that he was getting high quality real foods and he looked great. Then we couldn’t get raw goat milk, so we used pasteurized goat milk instead. Then the company that produced it had some kind of restructuring and the goat’s milk disappeared from the stores for a time. My milk supply kept dropping and the supplemental bottles had become his mainstay. So I had no choice but to buy formula.
Somewhere in there, Yirmiyahu got sick. I assumed it was a cold that would pass, but it didn’t – his breathing became noticeably raspy and stayed this way beyond the time a virus should have passed. I felt this was due to a milk allergy, though the doctors told me it’s because he has Down syndrome. I asked them why his breathing was normal for the entire time that he exclusively had mother’s milk, and they said it was just a coincidence. Yep. Three different pediatricians saw him and all recommended we use a nebulizer, which we tried but it wasn’t helpful. When I told his physical therapist my concern, she said as long as he gains weight, it’s not such a big deal – but if you’ve ever struggled to breathe, you know that it’s far from a small deal.
When the goat milk became available in the store again, I immediately went back to it. His breathing remained noisy. I tried the dairy formula, and I couldn’t tell if it was a coincidence that he seemed a little better or not. I tried again a couple of weeks later, and after just one bottle of pasteurized goat milk formula, he was obviously more raspy. I reluctantly back to the formula since I still didn’t have access to raw goat’s milk (the herd had been dried out, as was the herd of a friend who had been contacted on our behalf) – but his breathing still wasn’t good.
I took him to a naturopath for cranio sacral work several weeks ago and she right away commented on his breathing. I told her that I felt it was caused or at least affected by a dairy allergy, and after a few minutes of observing him, that was her assessment as well. She watched him drinking his bottle and noticed that he began squirming and showing signs of discomfort, and she showed me small red bumps on his knees and behind his ears that were signs of what she called ‘asthma of the skin’ (this is a translation of the Hebrew, I don’t know what it would be called in English; an Israeli friend told me it’s not eczema but didn’t know what it is in English). She suggested a non dairy formula and I told her I really didn’t want to try soy, but she felt it would be better than dairy.
So off we went to buy the soy version. You don’t know how hard it is for me to feed my baby formula, it’s just so much not the way I believe that babies should be fed. (If you’re wondering what I mean, just look at the ingredient list – the top ingredient is some kind of sugar, skim milk powder for the dairy version and then lots of vitamins added in.) And to give the most nutritionally vulnerable member of our family this stuff…..but his breathing really worried me. Within three days of the soy formula, his bottom was bleeding, he had red rashy marks on the top of his head and the skin all over his face looked bumpy. No more soy.
At this point I became determined to build up my milk supply again so that he could have my milk. I notified my family that this would be my top priority. I spent an entire day in bed with Yirmiyahu, just nursing, pumping, eating and drinking lots of fenugreek tea (to increase milk production). I was trying to pump about every 1.5 hours, since I learned that what I had been doing previously (every three or four hours) wasn’t enough. I continued doing this for the next several days to the best of my ability, working around appointments and the things I needed to do. And there was hardly any increase in my supply. At this point my reality and my desire to nurse Yirmiyahu collided and I had to have a very honest talk with myself about what I was capable of. Back to the dairy formula for lack of a better choice.
Last week I had to take Yirmiyahu for blood work and his pediatrician told me his breathing was worrisome. I agreed and told her that I planned to switch him to a different milk substitute as per the suggestion of our naturopath. She became very annoyed and told me for these issues you don’t turn to a naturopath, you go to a doctor. She then suggested we give Yirmiyahu two different medications daily via an inhaler- one medicine four times a day, one to be given twice a day (one is a steroid). How long was he supposed to get this until it made a difference, I wanted to know? She said they were to be given daily the entire winter.
We bought the medications and dh gave it to Yirmiyahu for a couple of days while I was in the hospital with ds13. When I got home, he told me that he was concerned at the reaction to this that Yirmiyahu seemed to be having. My strong feeling was is that we need to remove the allergen first and then see if there was still a breathing issue.
And that brings us to today – I began giving Yirmiyahu almond milk and will be observing his reaction for the next week. I hope that this agrees with him; if I could get raw goat’s milk again I’d go back to it in a second. Hopefully this is the point where he starts to get better!
>>I’m glad you didnt (at least seem) to be upset by my comment. (She’s referring to the comment quoted in the beginning of the post, ‘Am I out of touch with the realities of raising a child with T21?‘) (The reason I felt bad about what I wrote wasn’t because I took any of it back, but because what was the point? What’s the point in bursting your bubble and trying to get you to look at the negative instead of looking at the world with rose colored glasses.)……I guess that was exactly my issue with your last post- it seemed very much like you were romanticizing it.<<
I’m going to post a response but a private email came in on this in the meantime, and it’s so similar to my perspective that I’d like to quote it here:
>>As for romanticizing kids with special needs I would love to point out to your commenter that everyone else gets to romanticize / have rose colored glasses about their kids, why can’t we have them about ours. The medical community here is working as hard as possible to keep our “expectations” reasonable as are our friends and community. But they get to have unreasonable expectations of their “typical kids”. !!! Not every kid is going to be a Dr/Lawyer or even employable. There are plenty of 20 somethings who can’t find themselves…. I don’t think there is any chance that mothers like us have a chance of being too optimistic with all the gloom and doom out there.<<
It’s so interesting to me that some people – I’ll assume they’re all well-meaning – feel the need to make sure I’m ‘realistic’. I wonder why that is. Do they really think I don’t have an awareness that there will be difficulties as my baby gets older? Believe me, I’d know that even without being told! Do they think that I don’t have challenges right now? I can assure you that I do. Do they believe I’m harming myself or my family by choosing to find happiness in the life that I have right now? I can’t see why that would bother them.
Last year my children entered school after homeschooling their entire lives, and shared some of their observations with me. One dd said that she learned that it’s not considered cool to have a good attitude – she was struck by the pervasive negativity in conversations that she heard taking place every day. I told her then, it’s not just high school girls – it seems more socially acceptable to grumble and complain, and in some ways seems people prefer it that way. It’s common and it’s predictable and that makes it comfortable for listeners.
I don’t talk about my expectations for Yirmiyahu. Not here (other than my recent comment that we expect him to live an independent and productive life as an adult) and not in real life. That’s because I’m not interested in hearing that it’s not possible. When professionals (to date that includes doctors, a social worker, and a physical therapist) have told me about what to expect – even what they intended as encouragement was negative – I’ve kept quiet and nod my head to acknowledge that I hear them. Then I continue believing that things can be better than their predictions and looking for encouragement from those who are further down the path that I hope to take. And fortunately, those people do exist!
If you’re going to share your dreams, it has to be with others who can support you, who can believe in what you believe in. You have to guard your dreams from ‘dream stealers’ – people who for whatever reason will pull you down and tell you it’s for your own good.
A couple of days ago I was finally able to schedule an appointment at the Feuerstein Institute in Jerusalem for an evaluation for Yirmiyahu. It was so nice to hear someone – who has years of experience working with children with Down syndrome- talk about how bright they are, how capable, about all they can accomplish – and how critical it is to actively and consistently support them to enable them to overcome the challenges that come along with their extra chromosome. I wasn’t told, ‘It’s nice that you’re so idealistic, but you really should understand all the limitations of a child with Downs.’ Not at all. What I was told is that belief in our children is a major part of their success.
I’m reminded of a story of a student asked to write his life goals as part of a school assignment. He got very into it and wrote a detailed plan for the ranch he would own, etc – when it came back, the teacher had given him a failing grade. She told him, ‘You’re the son of migrant workers- there’s no way you can ever accomplish this. It’s totally unrealistic. Rewrite your paper to have goals that are more in line with who you are, and then you’ll be able to get an A.” The boy took back his paper and said, “You keep your A, and I’ll keep my dream.” This story was shared years later by a wealthy man living on his own ranch, living out the details he had penned so many years before – the boy who refused to sell his dreams short.
Those who think I’m naive, unrealistic, that I’ll change my tune when my son gets older – I know you mean well and I appreciate your concern. Nonetheless, you can have your reality and I’ll keep my dreams.
>>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.
Yirmiyahu, five months
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.
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.
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.
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!
Have I ever mentioned that it’s never dull in our house? It’s really not. I keep waiting for a quiet period but it seems that lasts for a few days at the very most!
Along with the high school applications/interviews/testing that has to be completed in the next week and a half for ds13, we have learned that the deadline for submitting applications for most seminaries is Chanukah. You know, one thing I thought would be nice about having my kids in school was that I’d be clued in to things like this because everyone else would be preparing for the same thing at the same time. However, it hasn’t played out like this since we’re looking into different options for ds13 and dd16 than their classmates so we’re having to figure it all out on our own.
After recently requesting the applicationfrom the seminary that dd16 is most interested in, it arrived in the mail today. (We skipped her up a grade this year and she’s now in her final year of high school, which is how we got to this point so quickly. :)) We researched several choices that we thought would be suitable for her, and narrowed it down to one program in England. Yes, I do think it’s very ironic that we’re living in a country with so many seminaries, and we’re looking into something out of the country. From everything we’ve heard, it would be a really good fit for her, and we all appreciated the specifics we learned from the informational booklet included with the application.
I told her last night that we’ll try to get the application completed by Friday and get it into the mail right away. Once they process the application, they’ll notify us about the interview process with a representative in Israel.
Fortunately, dd18’s seminary application isn’t due for a while (yes, she just had a birthday – for those who noticed the change in digits :)) so we have a bit of a breather on that! She visited the specific school in Jerusalem that she’s interested in and is pretty sure that’s where she wants to be, and I’ve spoken to the head of the program briefly to ask about the specifics. I think it will be great for her.
Having both girls in seminary and ds13 possibly away at a dorming school for high school (though we’re hoping the new local option will work out for him) in addition to ds19 who is already living away from home is something that will definitely shift how things look in our home. For now, though, we’re enjoying having almost everyone still living at home.
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.
I was speaking with a friend tonight and shared with her a term and concept I had recently learned about, and it reminded me that I wanted to share it with you.
The concept was that of glass children, and I became aware of this by watching a TED presentation called Recognizing Glass Children: What it means to be the sibling of a special needs child. Though special needs children are referenced, I believe that the concept has wider applications than just to the special needs world.
First of all, what are glass children? No, it’s not children who are fragile and breakable. They are actually appear strong (note that I said they appear strong, not that they are strong). Glass children are children who are growing up in a home with a sibling who takes up a disproportionate amount of parental energy. This can be a child with an obvious physical or emotional disability, it can be a child with an addiction, a serious illness, or significant behavioral issues.
The siblings of this child are called glass children because their overwhelmed parents look at them and rather than see their needs…. look right through them.
You might be thinking that there aren’t that many glass children out there, but as I watched this presentation, I thought to myself how many families I can think of who would qualify.
The purpose of the presentation was to raise awareness of the needs of the glass children, and give some tips to parents and those in the community about how to help them. Glass children see the difficulties their parents are experiencing with their sibling, and their role is to be good and not make more problems. So they are. But this role comes at a heavy price, as they grow up having to cope with their needs themselves, feeling pushed aside in favor of their needy sibling.
As a parent in this situation, it can be very overwhelming to be told that your child who looks like they’re coping well – “Thank goodness so and so is doing well” – really needs help. After all, it’s because they’re maxxed out in the first place that they aren’t available for that child. So what can you ask of them? What these parents can do is recognize the reality that their child needs support, and if they can’t provide, find others who can – friends, professionals, family members. Don’t look at their competent facade and assume everything is okay – it’s not.
We all think that our lives are busy, but there are families who are living close to crisis all the time. You may feel busy, but they are constantly living on the edge of their abilities. Look around at families who are struggling with high need children. Can you invite the glass children for play dates, on trips with you, spend time with them? Everyone is caught up with the needs of their sibling, but they need to be recognized, too. This doesn’t have to be something you do all the time. Every small action can make a big difference in the life of a glass child.
On Sunday, I took Yirmiyahu to the eye doctor for an exam and was happy to hear that his eyes look great! I don’t have to go back for another year.
Then this morning I took Yirmiyahu to the pediatric hematologist for a follow-up visit.
A number of people have asked me why he needs to go to a hematologist (a hematologist is a blood doctor). The reason is that when he was born, he had an extremely high leukocyte count – 95,000. About 10% of babies with Trisomy 21 are born with this condition, known as transient leukemia. The hematologist told me, after we got the results of the genetic testing, that there had never been a question in his mind that Yirmiyahu had T21 due to his elevated leukocytes – he said it’s a medical phenomenon seen only in the Down syndrome population. Yirmiyahu received very strong antibiotics to counter this within a short time of being born, and we were very happy to see his leukocyte count go down to the normal range of 20,000 within a few days.
However, children who have transient leukemia are at a much higher risk for developing regular leukemia. As a result, we are in regular contact with a pediatric hematologist to be sure that his blood work continues to be okay. The purpose of this is that if, G-d forbid, there were signs of a problem developing, it would be caught at the very beginning. When leukemia is treated in the beginning stages, the prognosis is excellent.
Today’s appointment was super fast – now that I have the rhythm down of what paperwork to get when, it goes much faster than the first visit. Basically we just do blood work, wait ten minutes for the results, and show it to the doctor. But with all the traveling and waiting for buses, it’s a six hour round trip journey. But the important thing is that everything is okay. We can now extend the time between visits to 3 months, and he was able to schedule my next visit to coincide with the day I have another appointment at the same hospital, which is really nice!
I feel like I’m finally at the end of all the initial testing and medical follow-up we instructed to do – but in January, we start the follow-up cycle, since for a number of tests we were told to come back after six months!
