Category Archives: Trisomy 21

Look who is turning 2!!!

parenting, Trisomy 21

I can hardly wrap my head around this little cutie pie turning 2!!! Does time seem to be going faster and faster or it is just me?

It doesn’t seem that long ago that we brought Rafael home from the hospital.

So how has this boy been doing??

Overall he’s been doing great though there has been some disappointing and upsetting developmental backtracking . Remember that video of him being so excited to learn to stand? He was standing all the time, and looking like walking was on the near horizon.

And then – the holidays ended and he was back to daycare. He was continually sick and always seemed tired and weak. He completely stopped standing, let alone move forward with anything else. His physical therapist told me a couple of days ago that it’s like he’s gone backwards several months developmentally, which is exactly what I see.

That’s the hardest part about fostering, that sometimes I have to do something I don’t believe to be in his best interests because that’s what the system demands. I can see it’s daycare isn’t good for him, and yet I still have to do it because they think a child does better in an outside educational framework. I pushed hard for an extra year for him to be at home with me and got it, and have to remind myself to feel grateful we were able to delay daycare as long as we were.

An issue that’s been challenging for us is that Rafael has shown very little inclination to eat from the time we started offering him solids at 10 months. From that time, he never ate more than two teaspoons a day total and only of few very foods. Nothing sweet. Nothing mushy. Nothing too chunky. Cucumbers and rice cakes were the only constants he would agree to.

Though he was medically approved for a specialty formula from the time he was a small infant, we didn’t often give it to him because we used donated mother’s milk. Only when we ran out would we use the formula, and it was very apparent that he never got sick except when he had formula for more than two or three days.

Recently he went through a month long period of one cold after another, nothing serious in and of itself;  the daycare staff told me it’s typical for a child in his first year of daycare. But he wasn’t eating much and he was even throwing up small amounts of formula – and my husband finally said, that’s it, we’re getting him off this formula.

I worried, how can we do that when he’s hardly eating anything? I mean, this child doesn’t eat. The formula was my security blanket, to know he was getting nourishment.  My husband said, the formula is making him sick, we’ve got to give him something else.

I had thought of replacing his formula with chicken broth several months before, but his speech therapist said she didn’t want me to do that. That night, we went cold turkey on the formula.

He was a very unhappy child for about a day and a half, during which time he very reluctantly would drink some small amounts of chicken soup from his bottle. But within two days, he was feeling much, much better. He suddenly was healthy again.

Not only that, suddenly he wanted to eat.  A lot. It was crazy and striking and amazing.

He began to intently watch everyone eating and literally overnight started to motion to have that food. And then he’d finish it, and have more. And then more of something else. After 14 months of trying and trying so many different foods and so many different ways to get him to eat, it was miraculous. I was afraid to believe it, afraid it was just a fluke.

But it wasn’t. And a couple of days after that, he stood up for the first time in six weeks.

So that’s all been very recent and very exciting!

The next thing that I’m working on is getting his sleep adjusted. Before he went to daycare, he would take a morning and afternoon nap, and sleep through the night. He was generally an extremely happy and good natured baby.

Then that all changed. He stopped sleeping through the night and the much shorter nap he had at daycare was much less than he was getting at home. He has been really grumpy and miserable when I pick him up, purely as a result of exhaustion. I estimated he was losing about 3 hours of sleep daily. That’s a LOT.

But by the time he gets home it’s mid afternoon and too late in the day for another nap.  So that’s the challenge right now which I feel very optimistic about resolving.

I don’t have a camera but my oldest daughter came by for dinner tonight and I asked her to snap some shots to share with you in honor of his birthday.

Me and Rafael, 2 years old.
Me and Rafael, 2 years old.
Me and Rafael, 2 years old.
Me and Rafael, 2 years old.

Rafael has a way of showing very clearly his feelings for someone. When he sees someone he loves, his face lights up and he reaches both hands out to him- my boys love being the one to pick him up from daycare because they are then the recipient of his beaming smile and outreached hands.

Just like this!

 

Oh, my gosh, how we love this boy!

Avivah

Mainstreaming for next year – questioning the status quo and who cares what the experts say?

parenting, Trisomy 21

This past week, ds12 started school. He started at the beginning of Chanuka and had the chance to get started when the days were shorter than usual and the class smaller than usual.  He’s really enjoyed it so far, and I trust that he’ll continue to enjoy it after Chanuka vacation when the class routine gets back to normal.

I had a wonderfully productive conversation with the principal of the school that ds12 is attending, who agreed to accept ds6 for the coming year. They’ve never had a student with Trisomy 21 before, but he said, “The question isn’t if we’ll accept him, but how to make it work best for him.”

Such an amazing attitude and I’m so grateful that it was so easy. I was expecting it to be hard, to spend weeks researching different options and approaching different principals of mainstream educational institutions and trying to convince them to take Yirmi. I was concerned that I wouldn’t be able to place him in a school that religiously was similar to where I would send his brothers. This quick and heartfelt acceptance was Hashem’s loving kindness to me.

I let the principal know that I don’t consider school a babysitting service, I don’t want Yirmi to be mainstreamed just for social purposes but that he’s bright and we know he will learn – with modifications and support when necessary – and our hope/intention is to keep him in the same school through eighth grade.

I mentioned this to a friend who asked if I thought this was realistic – on the part of the school and for Yirmi himself. Yes, I do. As with any child, I expect there will need to be adjustments and re-adjustments made over time.  As with any child, there are likely to be frustrations and disappointments.

I also know he’s capable and believe he will become more capable only by being challenged with new opportunities and being in a framework where there are expectations of him to rise up to. If I don’t believe in him, who will?

Sometimes I worry that I’m creating a situation for Yirmi where he won’t fit in anywhere – too advanced for peers in the special ed world, but still struggling to measure up in the neurotypical world. As with other choices I’ve made that weren’t the typical path, I sometimes wish I could see how it would turn out, to have a prototype child who goes down each path, so I could know now what my choice should be.

But none of us get that luxury. We have to listen to our intuition and make the choices that feel best for us based on the factors in front of us. As comfortable as it would be to take the path that is recommended by the ‘experts’, that path hasn’t been shown to lead to the kind of life I want Yirmi to have.  All those who have raised their kids with results that I’ve admired, have done it in spite of the system – usually with great resistance from the system – and with great personal involvement.

So, I periodically have to remind myself, stop being so worried about taking the path that makes sense to me!

Back to that dilemma of mine about Yirmi not having a place to fit in. When I read the book Taking Tamar, written by a single mother who about thirty years ago adopted a child in Israel with Down syndrome, she expressed the same concerns. Her daughter was considered unusual in her accomplishments. Unfortunately, the author died a short time before I read the book; I would have loved to have spoken to her about this.

I brought up this concern to several parents who have children with Down syndrome over the last couple of weeks, who all agreed it’s a realistic concern. Then I circle back in my own mind and ask, what’s the choice?

To know how much he’s capable of, but to deny him opportunities to develop because it will push him beyond his comfort zone, to choose to push him on a track that would limit him because it could potentially be socially more comfortable? Can I consciously choose to let the bar settle wherever it settles, knowing it will decrease his functioning in every area of his life?

And what about my fear that at a certain point people won’t want to be his friend and will spend time with him as a charity case? That fear needs to be challenged. Isn’t it possible that people will like him for who he is, that he doesn’t have to be more or less than who he is to be appreciated and valued in the mainstream world?

Right now, he’s in a mainstream but personalized academic framework. He’s thriving, the other kids love him, the staff loves him, and he loves going to school. I’m really, really happy with where he’s at.

Sometimes I think it’s good to look ahead and plan for the future, and sometimes I think I’m borrowing trouble by worrying about the future when all I can do is live in the moment. Right now he’s doing great. Right now, it’s clear that being in a class with neurotypical peers would be most beneficial for him.

I don’t know what will happen down the road. I don’t know how we’ll deal with the challenges that come along and I can’t predict what those challenges will be. We’ll just have to make the choices that we feel are most supportive of him at that time.

Avivah

Free time?? Staying on top of things takes lots of time!

aliyah, parenting, Trisomy 21

Someone asked my husband what I do with all of my free time now that the youngest two kids aren’t home with me all day. It’s down to just three of our boys homeschooling.

Guess what? I’m still plenty busy. But I definitely have more breathing room, which I’m super grateful for.

I’ve been having regular meetings with teachers and therapists for both Yirmi (6) and Rafael (almost 2). Though it seems the school year has hardly begun, I need to start preparing for Yirmi’s placement for next year. The first step is to get a certain kind of evaluation done, which has to be organized through the Dept. of Social Services. Most kids have this done at an earlier age but since he’s never been in the system until now, we’ve never had him tested.

You think it’s easy to reach a social worker at social services? No, they’re backed up and phones aren’t answered, messages aren’t returned. I was very lucky because after two weeks of trying to get through, someone spoke to the social worker directly about me and got permission to give me her personal phone number.

Once I had that, it took just a few seconds to get through! I had to get together various paperwork and reports for appointment, which was a pleasure – she even told me to bring flyers for my Leadership Parenting workshops so she can give them out to her clients!

While I was sitting with her, my phone rang. The Ministry of Education wanted to arrange a home visit for the next day regarding the kids who are homeschooling. Sure, why not? I have nothing to do with my days but have appointments. And so three representatives spent an hour at my home, asking all about how we homeschool and speaking to our three boys currently homeschooling.

Then the next day I had an appointment with Rafael’s speech therapist, who has asked me to have regular daily sessions in Hebrew with him working on language, and another daily session in English also working on play skills.

Then the day after that I had yet another hearing test for Yirmi. His hearing tests have been inconclusive – they show some kind of hearing loss but we can’t tell if it’s due to fluids or something permanent. That test had to be done in two parts because his patience for participating ran out. That test has confirmed significant hearing loss and now we need to see the ENT again, and from there hopefully we can start the process to get him hearing aids.

Then today I got a call from Rafael’s speech therapist that she just saw his hearing test that I sent her, and though I was told it was fine by the audiologist, she says he is showing some degree of hearing loss as well. Now I need to move forward on more testing for him.

Tomorrow I have blood work scheduled for both of them to have ready for the pediatric endocrinologist next week to check thyroid function. And the next day a school Chanuka party for Yirmi to attend (all parents are invited).

Then there was the meeting in Jerusalem that I attended to learn about the changes to the inclusion law in Israel and how that will affect Yirmi’s school placement. Basically, discrimination has now been legalized. It’s very clear that inclusion in this country is only an option for the children whose parents have a willingness to fight for their child (every parent there who I spoke to, hearing that he will be going into first grade said something along the lines of ‘Get your boxing gloves on!”), combined with ample financial resources and/or the luxury of a parent who isn’t working full-time to facilitate his inclusion.

Very sad that despite it being well known that inclusion benefits not only the child but the other children in a positive way, a country as advanced as Israel is moving towards the Dark Ages.

I’ve spoken to one school about Yirmi and they said they might consider it for the year after next but not the coming school year. The problem is they hear ‘Down syndrome’ and they’re so concerned his needs will be too much for them that they don’t want to meet him to see who he actually is and what he’s capable of (much, much more capable and much less extra effort on their part than they’re thinking).  I’m going to need to have a follow up discussion with that principal.

It’s never boring and I haven’t yet found myself with an abundance of extra time to sit around in a quiet house and nothing to do but meditate. 🙂

Avivah

Trehalose – supplement that melts brain plaque and improves cognitive function

health, nutrition, Trisomy 21,

I’m a proponent of biomedical healing, which very simply means, identifying the imbalance inside the body and then treating it with appropriate foods and nutritional supplementation. This can lead to significant health improvements or even complete restoration of one’s health.

Today I want to share about trehalose.

Trehalose is a supplement that dissolves beta amyloid plaque, the plaque found in the brains of those with Alzheimers.  It’s well-established that most adults with T21 who have not had preventative supplementation will develop Alzheimers.

When your child is young, thinking about cognitive decline in adulthood seems far away. As the parents of several children in their twenties, I can tell you that the years go by much faster than you would believe when your children are young.

Not only that – I’ve seen first hand reports from parents of children with T21 beginning this cognitive decline  in their first and second decades of life.  In the video below, Dr. Skowron shows the audience a slide of a brain scan from a four month old with Down syndrome that already has these plaques on it. That is downright terrifying.

So if you’re a parent of a young child with Trisomy 21 (or autism), this isn’t information that is applicable in the distant future. It’s relevant right now.

Here’s an excellent talk by Dr. Jared Skowron – Dissolving Amyloid Plaques in Autism and Down syndrome. He makes what are usually dry and complex topics easily understandable and interesting.

In a Facebook group that I’m on, I also see parents of young adults with T21 seeking help for their cognitive decline. Reading their descriptions of how much their child’s function has changed for the worse is heartbreaking. But what is incredibly heartening is to watch these same parents posting improvements and reversals of the decline as they add the appropriate biomedical supplements to their child’s diet. Trehalose is an important (though not the only) addition.

Trehalose is a white powder that is half as sweet as sugar that is easily added to food or drinks. I add trehalose to Rafael’s bottle along with his other supplements; I add it to a serving of unsweetened applesauce for Yirmi every morning before he goes to school, together with his supplements. I give it to them to prevent the plaque forming and causing damage in the first place.

A really nice side benefit of adding trehalose for us has been that they no longer resist taking their supplements, some of which have an unpleasant flavor. You know the saying, “Just a spoonful of sugar makes the medicine go down”? 🙂

Where can you buy trehalose?  I got my first order of trehalose from Amazon; it was $16.49 for a pound. Someone brought that to Israel for me when she came. Then I had the opportunity to buy lift space and I made a purchase of 25 kg from bulksupplements.com.  That was $149 for 55 pounds of trehalose, so obviously it’s significantly less expensive to buy it in larger amounts. Since I don’t know of anywhere in Israel to buy trehalose I was glad to have an opportunity to stock up. (In case you’re wondering, I don’t benefit financially if you click on these links.)

Though I’m sharing about trehalose in the context of supporting the health of a child with Trisomy 21, this has obvious application to those who are suffering from dementia.

Trehalose is inexpensive, tastes good and has major benefits….pretty amazing stuff!

Avivah

What did I tell the grandmother whose children want to give up baby with T21?

parenting, Trisomy 21,

October is Down Syndrome Awareness Month and I’d like to share about a call I received this afternoon.

The call was from a grandmother of a new baby with Trisomy 21. The baby’s parents want to give him up for adoption (it would probably be long term foster care) because the father says he is too sensitive for a child like this. Currently the parents are at home and the week old infant is in the hospital.

Rafael - 10 weeks old
Rafael – eleven days after homecoming

She is very unhappy with their position and has unsuccessfully tried to convince them to keep the baby. The parents aren’t yet open to speaking to anyone, so I let her know that if some point they want to speak or come visit and meet our boys, I’d be happy to do that.

The last time I spoke to a grandmother in this situation was two years ago, Baby M’s grandmother. One thing I gained from that very painful and drawn out situation that left me feeling like part of my heart was ripped out, was the increased ability to detach emotionally and release judgments of those choosing to give up their child with Down syndrome.

I told the grandmother that anything I tell her about having a child with T21 is preaching to the choir – we’re in agreement.  If you’re wondering some of what I might say, here are a couple of past posts:

What I would tell new parents of a baby with Down syndrome

Questioning reasons for giving up a baby with Down syndrome

Things we did to help our baby with Down syndrome thrive

Rafael, two weeks after coming home
Rafael, a week and a half after coming home

What I feel is most important is not to try to convince these parents, who are right now in a state of shock and confusion. They need time and support to feel all of their feelings and to know that all feelings are allowed. They are understandably afraid of the unknown and overwhelmed.

As a foster mother who was blessed to bring home a newborn with T21, I can’t tell you how much compassion I have for these parents. I sometimes think of the trauma that Rafael’s birth parents experienced and the difficult emotions that must continue to be part of their lives, whether repressed or expressed.  When parents give up a baby, the baby is gone but the emotions aren’t.

20170220_214324

It’s hard to listen to people you love contemplating taking actions that you don’t support and can’t condone. But that’s what these parents need most right now – someone to really listen to them without judgment and without telling them what to do.

Only when they feel truly heard will they be able to listen to and consider any other information or perspectives. Does that mean at that point that they will agree with the grandmother’s perspective and keep the baby?  No.

We don’t listen to people with the intention to get them to do what we want. We listen to them because we care about their feelings and want them to be truly heard.

Even when it’s hard.

Especially when it’s hard.

Avivah

Rafael is standing! – video

parenting, Trisomy 21

I haven’t yet taken a picture of our kitchen renovation, which is still in process and I’m wating until it’s a bit more complete before sharing. But you’ll get a glimpse of it in this short video on a busy erev Shabbos of Rafael standing up!

Rafael is now 20 months old and is doing great in every way! His latest thrill is practicing standing up on the edge of the couch or bed (he climbs up himself), causing everyone in his vicinity to simultaneously gasp and lunge for him. He falls forward at the very edge and then looks at us all with a huge grin while we’re taking deep breaths to calm ourselves!

You’ll see the grin I’m referring to in the video below. 🙂

 

When I see children learning to stand or walk, what always strikes me is how they have an intrinsic desire for mastery. They don’t get discouraged that they can’t yet do it. They want to go beyond what they already know, and keep trying and trying until they do it.  And they enjoy it along the way!

I’ve often thought how we could benefit by adopting a similar attitude to learning new skills, especially when we fall short. Rather than shame or blame themselves for not knowing how to already do it better than they do, these little learning dynamos just get up and try again with a smile.

Avivah

Embracing transitions- renovations, slowing down, starting school

homeschooling, personal development, Trisomy 21

Have you been wondering where I’ve disappeared to?? This has been my longest absence from blogging in twelve years!

It’s been a busy summer and while there were lots of good things, it was unusually challenging. Our DIY renovation added a huge amount of work and upheaval – every single item from every single room in our home except one was moved and the new spaces for some of those things still aren’t ready for them.

It’s been a big transition for us all.

I enjoy doing hands on activities, but while doing the actual renovation work I still needed to cook, clean, do laundry (without a sink for two weeks, without a washer for two separate weeks), buy groceries, etc – while also needing to oversee the project, constantly buy more supplies (the workers in several building supply stores all know me by now!) and teach the younger boys how to do the various renovations tasks…

I also still have these lovely children to be a mother to and that doesn’t mean constantly asking them to do yet another task or trying to meet their needs as fast as I can so I can get on to a job that is waiting to be done. My biggest effort in the midst of everything going on and all the emotions being expressed,was to still be a decent person to live with. That’s a big job when there is so much stress being experienced by so many people!

As far as how things are progressing – the bulk of the main work is finished and the new kitchen is fully functional. Yay! (When the sinks were finally in I felt like I was living in luxury!) Yes, I owe you all a picture!

There are still a number of small details before it will be completely finished. As much as I really, really want it all done, I made the decision to set further work aside until after Rosh Hashana. It was frustrating trying to get any work done with our youngest two boys around and when I tried I often had the feeling of two steps forward, one (and sometimes two!) steps back!

In addition to working with young children around (have you ever tiled a floor while living in a home and keeping your children off those tiles for 48 hours while the glue and then the grout sets?), things kept happening that diverted my energy or physically made it impossible to move forward with the intended renovation work, day after day: several of the boys were knocked out by a stomach virus, a very sick baby for three weeks, falling on a nail and not being able to move one hand for a week, badly smashing a finger in sliding door, spending thirteen hours in Jerusalem at the emergency room with a child who got plaster in his eye (and having the car overheat on the way there and then got a flat tire on the way home)….

There were so many unusual things happening one on top of another, that it became clear to me that Hashem (or maybe my unconscious) was giving me a message: slow down or I’d be forced to slow down.

Though I wanted everything DONE – what I really, really needed was to put my endless list of things to do aside and give myself a mental break by not thinking about all that still needed to be done.

Even with all of the challenges, I’m so happy to have tackled this project! By taking some time off from the work I’m able to breathe and look at what a huge accomplishment this has been instead of getting caught up in all the little details remaining.

I’m really pleased with how the new kitchen is shaping up and how much more spacious our main area is. One huge benefit that I didn’t anticipate is that I can now be working in the kitchen and still be involved in whatever the kids are doing.

——————————-

Last week Rafael (20 months) started at day care; it’s a wonderful program with full inclusion and he will have his own assistant for two hours each morning to help him participate fully in the activities. He will also be getting therapies there and the therapists will give instructions to his personal assistant, who will integrate their suggestions into her time with him as he does the group activities.

This week Yirmi started school! I’m not one for taking first day of school pictures but fortunately for me, the mother of another little boy in his class took this one for us!

Ds6 feeling shy and proud!
Ds6 feeling shy and proud

His teachers have all told me how impressed they are by him and what a pleasure he is to have in the class. And he loves it! It took a lot of persistence and advocacy to get him into this program (gan safa) which was sometimes emotionally wearing, but after the first ten minutes of being there with him, I felt so grateful that I stuck with the process. I think he’s going to gain tremendously!

I sent Yirmi to a Hebrew speaking camp for a month this summer to help prepare him for school. His English comprehension is excellent but his Hebrew is minimal. I told his teacher that he doesn’t understand Hebrew yet, but yesterday she told me he seems to understand a lot of what is being said to him and responds accordingly.  I attribute this to him paying attention to tone and body language – but maybe his camp experience helped prepare him more than I thought!

——————

So who does that leave homeschooling? As I enter my nineteenth year of homeschooling, we now have just three boys homeschooling (9, 11, 12).  I’ve had very little kids at home for throughout all these years and suddenly I don’t.

I expected to feel some ambivalence and sadness at this transition point, but that’s not the case at all. I have so many things I’m constantly dealing with and I’m grateful to be able to slow down and move away from the very intensive schedule that I’ve had for so long. I’m ready to embrace and enjoy this new stage and give myself a pat on the back for all my efforts with each of them until now. Though I’ve often wished I could do much, much more than I do, I’m willing to let that go and instead focus on what I have done!

My intention for the coming year is to be able to focus my time and attention on the boys at home in a way I haven’t been able to do when constantly stopping and starting to take care of younger children.

But my even bigger priority is to arve out some renewal time for myself!

Avivah

 

Why do I want my son to attend gan safa?

homeschooling, parenting, Trisomy 21

First of all, the exciting news is in – Yirmi has officially been accepted to gan safa!

“Do you mind sharing a little bit more about how and why you decided to put Yirmi into the school system and not to homeschool him at this point?”

When it comes to homeschooling, there’s what I want to do and then there’s what I  actually do. If the two lined up, Yirmi would continue homeschooling.

There are two things that currently concern me: 1) acquisition of Hebrew language and 2) acquisition of friends.

I live in RBS, the largest English speaking community in Israel. It has some wonderful unique features that make living here a pleasure; the flip side is that as a homeschooler Hebrew is something I need to work to expose my kids to, and I’m not finding this easy to do. The most effective way to learn Hebrew is by being in a Hebrew speaking environment and having Hebrew speaking peers. I’m not providing that.

Secondly, though Yirmi enjoys playing with his brothers and their friends who come over on most days, he doesn’t regularly play with friends his age. This isn’t because there is a lack of kids around or because he doesn’t play appropriately (he does), but because I don’t get him out in the afternoons. I’m not regularly setting up the playdates that mothers have invited him to, I’m not getting out to the park  – while I’m not beating myself up for this, I’m being honest about my limitations because our kids need us to be honest about what we can really do, and to find alternatives if we can’t do it.

After years of being the mom who took her kids everywhere, who took her kids to the friends they were invited to (since most mothers would rather invite kids over than go out), who after moving to Israel took her kids to the park daily for years… I’m tired. And while I’d like to have more energy to take him out daily, I don’t.

“Can you share why you prefer gan safa to special ed?”

While gan safa is officially part of the special ed framework, in my area it is filled with typical kids who have language challenges of some sort.  (It’s not coincidental that our sizeable English speaking population has a high number of kids in gan safa – in other areas I’ve been told that gan safa is filled with kids with significantly more learning challenges.)  Kids who are cognitively more limited are put into a different gan system (gan ‘pigur’); kids with autism are put into yet a different system (gan tikshoret).

I’d like Yirmi to participate in an inclusive environment as much as possible. With the law that just passed here in Israel, I don’t know if it will be realistic anymore once he gets into grade school.  It will unquestionably be much, much more difficult than it has been for kids with special needs until now, and it hasn’t been a walk in the park for any of them even with favorable laws to work with. We’ll cross that bridge when we get to it. But at least for now, he can benefit from a mainstream environment.

I’ve been asked why I don’t want to put him into the typical gan classroom. Going into school will be a huge transition. When taking into account not yet speaking Hebrew and having expressive language delays, it would be overwhelming for Yirmi to be in a class of 35 kids. I think all kids benefit from being in a smaller class environment, and gan safa is usually a class of about 12 kids with three teachers. Honestly, I think all kids would do best in an environment as supportive as this, but certainly it sounds like the best fit for him at this time, when taking into account the various options.

I don’t have any information on the specifics of the gan yet, but hopefully this will be a wonderful new experience for Yirmi!

Avivah

 

 

Becoming the squeaky wheel for the sake of my child

parenting, Trisomy 21

It’s a busy 3 week period for our family – a new grandchild, my oldest son’s first anniversary, my son turning 16, our 26th anniversary, today Yirmi turned 6 and in two days my oldest will turn 25!

I started the morning by getting the super good news that Yirmi was accepted to gan safa (kindergarten with a language focus). (I mentioned a month ago that I had a lot of conflict about this decision and have gone back and forth for months about if I really want to put him into the school system. I decided that if he was accepted, it would be beneficial for him.) It’s been a couple of months since I met with the committee; I called several weeks ago to verify his placement and was told he probably would be placed in gan safa. But, she added, call again in a week to confirm.

So I tried to call again. And again. And again. This office is notoriously difficult to get hold of. Yesterday someone answered and told me to call the secretary of the person in charge of placements. I called her repeatedly. It went to voicemail every time.

So this morning when the head of the health clinic asked what was happening and offered to call using the personal cell number of the person I was trying to reach, I was happy to accede to her offer! And very delighted when I got the good news that he has been accepted and things are in place for him academically for the coming year.

Why, I wondered to myself, was I so worried? ‘You see, Avivah,’ I said to myself, ‘everything doesn’t have to be so hard. You were worried for nothing.’

Several hours later I got a call from someone from the office of special education in the city who after spitting out her name rapid fire, wanted to know where my children attend school. When I told her they were homeschooled, she asked about our religious affiliation. I told her I wanted to know her reasons for asking before sharing any of that information. She refused and after I refused again, she told me it’s about Yirmi’s kindergarten (gan) placement.

I knew it.

Call me paranoid, but telling them my religious affiliation was a trap that I wasn’t falling for. Here’s why. If I tell them that we’re charedi, they’ll tell me no charedi gan safa will take children with Down syndrome. If I tell them that we’re dati leumi, they’ll tell me they’re full and don’t have room, or that the dati leumi schools won’t accept him since we’re charedi (they already tried this tact in our face to face discussion).

So I told her we’re in the middle and either choice would be fine for us, that what matters most to me is that he’s in a framework that appropriately meets his needs. She really wasn’t happy with my answer.

She asked for the name of the school that my high schooler attends, the better to pin a religious label on us. I couldn’t help but laugh at the perplexed silence following my answer, because it’s a middle of the road school and it didn’t help her put us in the box. “Oh, so you really are in the middle”, she responded slowly.

So much for my happiness and relief of the morning to know his school placement had been finalized. No, she said very definitively, Yirmi absolutely hasn’t been placed in gan safa and no one was authorized to tell anyone about his placement and don’t you know all the classes are full already? And lest you think I can’t hear between the lines, it means too full for a child with T21.  Their lack of space really isn’t a compelling argument to me, since I gave in my application very early (ie before most other parents). While this year there are honestly a larger than usual number of applicants to gan safa, ‘lack of space’ simply means they’re giving the spaces to kids they view as highest priority.

It would be really nice to feel that those in charge of making these educational decisions care about my child.  I don’t have that confidence. After all, they’ve never seen him. (Knowing that putting him in an inclusive school environment means that I’ll be spending the next 13 or so years of my life fighting for his basic educational needs to be met has been a huge part of my conflict about putting Yirmi into the school system versus continuing to homeschool him. Maybe, I’ve wondered, I should save my energy to spend on educating him myself and we’ll all come out ahead?) I suspect their decisions are mostly about funding.

I don’t like to use my energy in a negative way and I’d really prefer not to expend so much energy in advocacy, but it’s all about being the squeaky wheel if you’re a parent of a child with special needs – unless you want to put him in the special ed framework. And things just got a lot harder today, when a law passed in Israel that removes additional funding for a child with special needs who is in an inclusive educational framework; they will now get the same funding as any other student.

(Here’s how that works and why it is so damaging – a child can be successfully included when he receives extra supports to be successful in the mainstream classroom. Take away the extra supports and he will fall behind and will then have to be placed in a special ed setting. Where his school will then receive full funding for him.)

On a more positive note, today we were offered a slot for a new speech therapist to work with Yirmi. (The first therapist didn’t feel she was making progress with him and that he’d do better with a therapist who had more experience working with children with T21. He was then put on the waiting list for the more experienced therapist.) When I say we were offered a slot, that sounds rather magical, doesn’t it? What it actually means is that I repeatedly approached them and told them it wasn’t acceptable for an extended period to go by while we waited for his name to reach the top of the priority list again.) I did again this morning when the director was there, and she pushed him to the top of the list right then. The squeaky wheel gets greased.

On another lovely note, we celebrated Yirmi’s sixth birthday with a barbeque dinner with family and friends. (After closely observing ds9’s birthday party, he was very clear about what he wanted! He requested a specific menu and went in person to invite a couple of neighbors to attend.)

He’s growing up so much. There have been concerns over the years that have disappeared, and others that I still have that I need to remind myself to take a long term view on and not get uptight about. And even more than that, not to blame myself for not having done more (because that’s the road I go down…) – like that he’s not reading yet because I wasn’t consistent enough. (The irony is that the two brothers ahead of him are both very late readers and I never had this guilt with them!)

I often marvel at Yirmi’s depth of sensitivity to the feelings of others and love seeing his full-hearted acceptance and love of those who are in his life. He loves learning and is always ready to go on an outing or have a new experience. He’s a great kid and continues to enrich our family!

Avivah

 

Dsicussing palate expansion for Yirmi with orthodontist

dental health, health, Trisomy 21

When Yirmi was born and we were told his Trisomy 21 diagnosis, my mind was flooded with thoughts. It was in the first couple of hours that I thought about a study I had read about regarding Weston Price who did a palate expansion with a teen who had Down syndrome. This teen was very cognitively limited, and the expansion created dramatic changes for him.

How could something that seems so minor make such a big difference? Since the center third of the face of those with T21 doesn’t grow properly, it compresses all the major head glands. This specifically can prevent the proper functioning of the pituitary gland and all its hormones, which has many, many consequences.

Yirmi was also born with a very high and narrow palate. I addressed my concerns about this holistically from the time he was four months old, taking him for weekly cranial sacral adjustments and requesting work specifically on his face and inside his mouth. I stopped those appointments about the time he was three, around the time we moved to RBS, since I didn’t find someone I was comfortable continuing treatment with.

For almost six years, from that first night I was sitting in the waiting room processing our surprise birth diagnosis, I’ve been thinking about palate expansion. But I’ve delayed a visit with an orthodontist because frankly, not only is it a significant expense, it’s very tiring to have to advocate and explain all the time. I learned of one orthotropist in Tel Aviv and considered making an appointment with him, but decided to try my luck with local orthodontists first.

For several weeks, my to-do list included calling to schedule a consultation. Every single day, for weeks. And every day, I’d push it off. I finally made the call a few weeks ago and the night before our consultation, I emailed a list of links to studies and research that had been done regarding palate expansion and children with T21, with a request for the orthodontist to look at it so we could discuss it when we came in.

I had this funny feeling when I walked in to the office that everyone knew who I was, and not because they read my blog! I was definitely wondering if my email had been discussed among the staff. When I left, one secretary commented to me, “Good job with that email!”

I was impressed with the orthodontist, who told me he had read everything I sent him, and was ready and willing to discuss it all with me. He wanted to ascertain that I understood that not every child is going to experience every single benefit, which I know. I told him my specific hopes for Yirmi having the expansion, and he said that all of those were reasonable.

The good news is he’s agreed that Yirmi is a good candidate for palate expansion, despite his young age. (Palate expansion is usually recommended for a later age, but for the above reasons I feel he’d benefit by having it done as soon as possible). We’ll need to wait a little  longer until his molars are a bit bigger, so the device will be able to be anchored to them.

I was reflecting afterwards about how I created tension for myself, just by telling myself how difficult it was going to be to find an orthodontist to agree to work with us. Don’t we all do that, so often? It really couldn’t have been a more pleasant and positive meeting. I hope that when we’re ready to do the molds that everything continues to go well. But for now, the first big step forward in this direction has been taken, and I’m so relieved and grateful!

Avivah

Edited to add: I linked to this in the comments but am linking here so you can easily access this summary of the benefits and some other information put together by Dr. Erica Peirson.