Category Archives: Trisomy 21

What I would tell a new parent of a baby with Down syndrome and a fun video featuring Yirmi!

March 14, 2016parenting, Trisomy 21down syndrome adoption, new baby with down syndromeAvivah

Friday morning I got a call from our pediatrician, asking if she could pass our phone number to a new mother who just had a baby with Trisomy 21.

Two weeks before that, a blog reader forwarded an email to me about a newborn baby with T21 who is available for adoption to a religious Jewish family in the US.

Two weeks before that, another blog reader forwarded information to me about a woman in Israel who had given birth to twin boys with T21 who was shattered and devastated.

I gave my number to the doctor for the new mother, was in touch with the contact about adoption for the newborn baby and spoke to the mother of the infant twins.

What would I tell a new parent about raising a child with Down syndrome?

I know, it can feel overwhelming when you get the news. Maybe your mind is racing and you can’t believe that this has happened to you – this is supposed to happen to ‘other’ people. And now you’re the ‘other’ person. Maybe you’re unable to stop crying, maybe you feel that you did something wrong that you’re now being punished for. All of the doctors and staff (nurses, social worker) who spoke to me gave the impression that this was very sad news.

But I want to share with you a much more accurate perspective. It’s not sad. It’s not bad. It just is. Your child has been born with a medical difference, and that feels significant.

But it’s not nearly as significant as you might think. In fact, I would say that the less you pay attention to the diagnosis and the more you connect with him as your baby, the happier you’ll all be.

Here is what I think the most important things are to know in these early days:

Raising a child with T21 is pretty much the same as raising any other child.
He is capable of so much more than you think – put aside any preconceptions of who he is and what his limitations will be. No matter what the doctors tell you, they have no more idea than anyone else what his potential is.
Trust his potential and support his process in the way that is right for who he is, not who you think he should be. He doesn’t have to prove himself.
Most importantly, just love him. You are going to get so much love back. One day you’re going to look back and remember how you cried and felt devastated when he was born, and wish you could redo your initial response to reflect all the joy your child has brought into your life.

****************************

I just discovered this short video that ds8 and ds3 recently made together when I was out of the room. They aren’t supposed to touch my computer without permission but I was glad to have it and am sharing it with you because it’s an spontaneous and unscripted slice of our every day life with a child who happens to have T21. I’d love to know what your reaction to this video is!

********************************

When a child with T21 is born, there’s an assumption hanging over his head that he’s less inherently worthy because he’s different. We presume that having differences is a bad thing.

It’s really not.

But because of this negativity surrounding Down syndrome, parents feel like there’s been a mistake somewhere, something unfair has happened to them that shouldn’t have happened.

There are no mistakes in this world. Your child isn’t a mistake. His entrance into your family isn’t a mistake. You were divinely chosen to receive this child.

Not because you’re spiritually better than anyone else and ‘can handle it’. Not because you are worse than anyone and ‘he is your test’.

He is a child with unique gifts and abilities. He will shift your paradigm of parenting, he will teach you things you didn’t know you needed to know – and my personal feeling is that we won the lottery against all odds when Yirmi was born!

Avivah

See the person, not the disability

November 18, 2015parenting, Trisomy 21Avivah

This week someone introduced me to another woman, mentioning that I had a special needs child.

“No,” I responded, “I don’t have a special needs child. I have a child with special needs.”

“What’s the difference?” the woman I was being introduced to asked, sincerely puzzled. (The woman making the intro immediately apologized and said she knew better and was sorry to have used that term.)

Honestly, I’m not a dogmatic person. I know this seems like a really small thing. But I simply do not want my child or anyone else’s child labelled in this well-intended but limited way.

So I explained, “My son has Down syndrome – he’s not a Down syndrome child. Down syndrome is part of who he is but it doesn’t define him.”

Ds22 told me he thinks it’s too subtle a distinction for people to make, but I don’t agree. It’s just a matter of nicely sharing a different perspective with people. No one is purposely trying to be offensive or insensitive by using this term. I’ve introduced my preferred term with doctors, nurses, therapists (alternative and conventional) and anyone else who has used the special needs version to me and almost everyone I’ve spoken to has understood very quickly what I meant.

Actually, at this point I don’t usually mention when people meet Yirmiyahu that he has Trisomy 21. There’s really no reason to. Someone will either notice or not.

Despite not being very verbally expressive yet, Yirmiyahu is bright and communicative. People realize he has a language delay; it’s obvious. But it’s interesting how few people realize he has T21. Even in the hospital, a nurse who had been caring for him asked me if it was true that he had T21 – she said she hadn’t realized until it was mentioned in his medical briefing.

Recently after a friend of dd15’s visited, she told me she didn’t like how people treated him after learning he had T21. I suggested she consider not mentioning it anymore. To us, his diagnosis isn’t a big deal and she didn’t think it was significant to mention – to us it’s almost like saying someone has glasses or brown hair except that we’re more proud of him than that!

As soon as her friend heard he had T21, she went from speaking to him in an age appropriate way to commenting to dd15, “Oh, that’s so cute, he pointed at the bird – I think he knows what it is!” As if he suddenly lost a bunch of brain cells and stopped being the engaging little boy she was enjoying before that. If Yirmiyahu had overheard her he probably would have been wondering what happened to her brain cells. Seriously, he’s 3. He understands everything.

The reality is that Trisomy 21 isn’t the problem. It has its challenges for sure, but the real challenge, the biggest challenge, is society and the limited expectations and lack of acceptance there is for those with developmental delays or disabilities.

This is all tied up with the terms people use. When you speak with more awareness of a person having an identity outside of his diagnosis, you’re part of the solution. And it’s so easy to do – a slight shift in how you describe someone and you’ve made the world a place that’s more respectful of everyone!

Avivah

A strikingly different and refreshing idea about acceptance of others

July 21, 2015personal development, Trisomy 21Avivah

Several weeks ago I attended a play called, “Seeing the Beauty in those who are Different”. I really wasn’t sure what to expect and had some apprehensions about attending since I knew it had something to do with Down sydrome and I have a problem with the limited and stereotypical presentations of those with T21.

The two person play was powerful but left me with mixed feelings. The play was followed by a question and answer session with the audience that was compromised mostly of teen volunteers who worked with children with various disabilities. The director who played the main character with T21 led this and his comments were quite insightful.

Afterward I spoke to the director and I shared with him my ambivalence about seeing a person with T21 portrayed in a way that might feed into common social perception. He agreed with me that people with T21 can and do achieve wonderful things and live mainstreamed lives. But, he said, the unfortunate reality is that many people with disabilities don’t have the family support that my son has. He explained the background of the character to me, and said that far from being stereotypical, the main character has a lot of strength and independence – he is living in an assisted living facility, forgotten by his family. He works, buys his own clothes and despite his loneliness, refuses a visit from someone he suspects is doing it out of pity. He has no outside support and yet he maintains a courageous attitude toward daily life.

At the end of our conversation, I asked the director, “How would you sum up your message in this play – to accept others?”

He adamantly said, ” Who am I to accept someone else? Acceptance implies that you’re better than someone else. We don’t say we have to accept someone who we feel equal to and certainly not someone we feel is above us. What I want people to do is look into another person’s eyes and recognize their humanity, and interact with them from that position.”

I was struck by the power of this thought. To me acceptance was a pretty good thing to strive for societally but his comment helped me recognize that I was living with a limited sense of what acceptance really is about.

It was a major paradigm shifter for me that can be applied to many situations that go far beyond the disability community. Really, it applies anytime you encounter a person or idea who isn’t aligned with you and your way of thinking – to see the person and not focus on his actions, and relate to him from a position of respect and honest connection.

How does this idea about acceptance impact your way of looking at those who are different than you?

Avivah

All Lives Matter – Karen Gaffney

July 15, 2015parenting, Trisomy 21Avivah

Earlier this year a friend told me she cried when she found out that Yirmiyahu had Down syndrome. I asked her why? After all, I didn’t cry. “Because it was so hard.”

That’s what I would have thought before I learned about Trisomy 21, too, but it’s not the reality. That’s a perspective based on very limited information that isn’t globally applicable. No, I don’t have the amazingly sunny personality that enables me to see bad things as good things – I’m a very realistic person. Reality is what a friend of mine with a daughter with T21 told me several years before Yirmiyahu was born: “Down syndrome is just not that big a deal.”

I know it’s hard to believe. Yes, people with Trisomy 21 do have challenges but they also are capable of far more than what is generally assumed to be true. Learning this as a mother of a very new infant with T21 gave me an entirely different perspective and vision.

Below is a talk by T21 advocate Karen Gaffney. Karen herself has T21. Hearing Karen speak is such an encouragement to me and in the TED talk below I think you’ll also appreciate what she has to say.

Avivah

Guess who’s turning three?!

July 4, 2015parenting, Trisomy 21Avivah

Guess who’s turning three?

Close your eyes and guess!

Can it be?

There are a lot of words the doctors used when they told us about Yirmiyahu’s Trisomy 21 diagnosis.

Most of them were sad. And depressing. And limiting.

There wasn’t one word that intimated to how our lives would be enriched. Not one hint that he would be smart, capable and personable.

There was just one thing I remember them saying that was accurate: “How your child develops depends very much on how much you invest in him.”

Do you know what it means to invest in your child?

Love him as every other child.

Include him as every other child.

Believe in him as any other child.

Did we ever guess what joy was going to become a daily part of our life when this little boy was born?

Even if they had told us we wouldn’t have believed them.

Sometimes words are just inadequate.

Avivah

The countertops arrived and my new kitchen is ruined – expectations, disappointment and acceptance

June 8, 2015homemaking, marriage, parenting, personal development, Trisomy 21Avivah

I haven’t written about my kitchen renovation progress even though the counters were installed a week ago.

The counter is beautiful. And the cabinets are beautiful.

But the shade of the countertops isn’t a perfect match for the cabinets. The cabinets are a pinkish beige and the countertop is a yellowish beige and while that doesn’t sound like a big deal, it’s off. It’s not what I was envisioning.

The loss of a dream can be a very painful thing.

********************

When Yirmiyahu was born and I found out he had Trisomy 21, I accepted it very quickly – in less than a minute. No regrets, no what if, no wishing it would be different.

But most parents go through a mourning period after learning of the diagnosis, because it’s hard to let go of your dream of who your child will be.

***********************

Why was it so easy for me to accept my newborn son had Down syndrome and after a week I’m still struggling to accept my countertops being a different shade than I anticipated?

When I got the news about the T21, it was clear that was the reality and there was nothing that was going to change that. The only option was to look forward and do the best I could to nurture the child I had.

I also have a very strong belief that everything in this world happens as it’s meant to happen, when it’s meant to happen, to whom it’s meant to happen. G-d doesn’t make mistakes and nothing about Yirmiyahu or him being part of our family was a mistake.

But this countertop…it felt like a mistake. My mistake. I have a good sense of what looks right together. This isn’t the kind of mistake that I should have made. Except that I did and how it happened doesn’t really matter.

And – I don’t want to call it grieving because that should be saved for really serious situations – I’m feeling a sense of loss and sadness. I invested a lot into this project because the final vision of what it would look like motivated me. After the countertops arrived, I lost all interest in finishing the kitchen. I wished I hadn’t started it. Better to have kept the old tiny yucky kitchen than to invest myself in a project that didn’t turn out the way I wanted, my mind said.

While I can accept what G-d sends, it’s harder for me to accept a mistake that I made and realize, this is also the way that G-d wanted it.

*****************

As long as I’m wishing I could change the countertops, tell myself that I can’t bear looking at it every day, think how it’s a reminder of my failure – I’m not going to find acceptance. And without acceptance there’s no emotional peace and definitely no happiness.

Acceptance truly is the answer. Acceptance will only come when I can internalize that this is how it is, this is how it’s meant to be and this is G-d’s will just as much as something that doesn’t have any element of human involvement attached to it. It means focusing on what I have, not on what doesn’t fit my image of how it should be.

When I begin to let go of my insistence that something is wrong and realign my vision with the reality that’s now in front of me, it’s freeing. I can focus on what’s right. I have a well-designed kitchen that uses the space well, that’s easy to organize. I have all the features in my kitchen that I wanted. All while staying within my budget.

Since what I want is emotional health, serenity and peace, this is what I’m choosing. To accept that I don’t always get what I want, to enjoy what I have, and to notice what a beautiful countertop I have – even if it’s not the right shade.

Avivah

The absurdity of the high functioning label

May 6, 2015parenting, Trisomy 21Avivah

Recently a guest, after observing Yirmiyahu (2 3/4 yr) for a while, asked, “So, is he high functioning?”

Should I proudly say, ‘yes’, as if he’s better than someone who doesn’t get this lucky label?

People are not machines or vegetables that are sorted according to quality and priced accordingly. Inanimate objects can be rated with cold, measurable terms like ‘high functioning’ for the retail market but this is totally inappropriate for human beings.

I understand why people ask and it’s intended as a compliment. They see Yirmiyahu doing well and use this term as confirmation of his abilities. But Yirmiyahu is not high functioning. He is not low functioning.

He’s a living, breathing person with his own unique strengths and abilities, as well as his own challenges. Like every one of us.

Did you ever stop to think what in the world does it mean to be ‘high functioning’? Who gets to determine what the standards are, to check off the abilities of a fellow human being on a paper grid?

Is childhood a competition between the haves and have-nots, between those who can and those who can’t? Are we so arrogant as to think that because we or our children are blessed with certain abilities that it makes us better than those who have different abilities?

Defining success in life is individual. Different people want different things and will need different strengths in order to have lives that are meaningful to them. We have each been created with the abilities we need to fulfill our unique purpose in life. We aren’t meant to be the same and we shouldn’t be rated as if we are.

The reality is that people with disabilities are being rated from the time they’re born. They’re constantly being graded on a scale of performance that may or (more likely) may not be relevant to their individual lives. That same scale will ignore any strengths that haven’t been determined by some official somewhere who doesn’t know the child or his life, and the child is then rated according to his functioning.

Fair? No. Accurate? No. Is someone better than someone else with a similar condition because he’s been labeled ‘high functioning’? No.

So why do we use these ridiculous terms?

Are you wondering about how Yirmiyahu is doing? He’s awesome. He’s smart and communicative and he’s living life on his own timeline. Sometimes that looks impressive and sometimes it looks like there’s a delay, but none of it means that he’s ‘functioning’ better or worse.

If you never thought about these terms until now, join the crowd! I’ve thought a lot over the years about the importance of giving a child space to develop at his own pace and this has informed my approach to homeschooling and parenting. But I didn’t question the usage of terms like ‘low functioning’ or ‘high functioning’ until I had a child with a different developmental curve; it was then that it became alarmingly clear to me that we limit and damage our children when we label them in this way.

Avivah

Why I’m teaching sign language to ds2

December 31, 2014frugal strategies, parenting, Trisomy 21Avivah

Years ago I read about the benefits of teaching babies sign language, in time to teach dd14 a couple of basic signs when she was about a year old. I didn’t really know many signs and my motivation to teach my infants wasn’t strong enough to push me to extend myself to learn more.

Enter the birth of my youngest, now 2.5. I knew that with a diagnosis of Trisomy 21, he was likely to experience communication difficulties. I decided to assist him in expressing himself rather than waiting for speech. At 14 months, when I began introducing early reading I also began introducing signs.

Neurodevelopmental therapists oppose teaching sign language to a child with T21, believing that the frustration to want to express oneself encourages a better degree of clarity in speech later on. I trust their many years of experience but I’m not willing to withhold a way for my child to communicate now for the sake of later gains. Every person wants and needs to be able to communicate with others, and deserves to be given the tools to succeed. Especially children for whom it’s more of a struggle than others.

There are plenty of benefits to using sign language for all young children. Young children understand so much more than they’re able to express, and giving them ways to let you know what they want is very helpful to you both. Sign language encourages language comprehension, fine motor skills and is cognitively stimulating.

It’s not hard to learn basic signs. I’ve learned a number of signs from the Signing Times website; when I needed others, I looked them up at Signing Savvy. The Signing Savvy site has a much wider vocabulary of words but the video quality can’t compare to that of Signing Times. They’re both great free resources.

Yirmiyahu is limited to the signs he learns by what signs I learn. Recently a while went by and I kept telling myself I needed to look up more words and not getting to it. So I began considering buying signing dvds for him to watch. When I looked into this, I learned that Signing Times has a digital subscription option – with a free monthly trial that gives unlimited access to the programs they have available. So I signed up!

So far we’re enjoying this a lot. There are several series that include Baby Signing Times and Signing Times. Each series has a number of programs that are grouped according to topic and taught together with songs. The program host has an engaging and fun way of presenting the signs and is extremely clear. Our boys ages 5, 7 and 8 are enjoying watching with Yirmiyahu and me, which is really nice. They’re learning the signs and that’s helpful so that they aren’t dependent on me to translate what Yirmiyahu is ‘saying’. And they can also help me translate when I’m not remembering what sign Yirmiyahu is using! (Yirmi has a better memory than I do!:))

When the host introduces a sign, on the opposite side of the screen is a picture of what she’s demonstrating along with the word written out. This reinforces Yirmiyahu’s reading program, which has many of the same words.

Another thing I really appreciate is that the children in the programs are diverse and reflective of children in the real world. They include a number of children with Down syndrome and other disabilities; children with disabilities are usually shut away from others and having them portrayed as naturally as any other kid is extremely important.

Watching these programs has made it easier and more fun to learn signs. I don’t know yet if I’ll sign up for a subscription when my trial runs out but I’m certainly enjoying the access that we have now!

Avivah

Tips for supporting a child with Down syndrome

September 16, 2014nutrition, parenting, Trisomy 21Avivah

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?

September 11, 2014Trisomy 21Avivah

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.

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

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this: