Category Archives: Trisomy 21

Ds is turning 12 – thoughts and reflections on raising a child with Down syndrome

parenting, Trisomy 21

Today is our son’s twelfth birthday – I remember so clearly when he was born and shared with you here all about our surprise diagnosis of Trisomy 21 a short time after his birth.

There was a lot I didn’t know and a lot to learn about, but my biggest concern was what kind of life he would have. What opportunities would there be, would people be kind to him?

Last week we celebrated a milestone – after seven months of learning with his fifteen year old brother, ds12 completed his first tractate of Mishnayos. They stayed with it regularly for all of that time, despite having very different schedules, finding time to learn together and finally, they celebrated the culmination last week.

One of my married daughters was here with her family for that Shabbos and commented how emotional it was. It was a big deal. While this is a normative learning experience for a boy this age, most people would assume it to be out of reach for a child with Trisomy 21. He did this because he wanted to, not because we suggested it or pushed him to do it. And he did it well.

I don’t want to sugar coat or gloss over the challenges of raising a child with a disability. There have been times that have been frustrating. Very frustrating. There have been issues that went on so long despite my input and support that I sometimes felt close to despairing that we would ever resolve them. But even those tough issues have improved with time and are no longer the source of angst that they once were.

Sometimes I got lost in the close-up view of the difficulties and lost sight of how amazing he is, focusing on what needed to be improved instead of looking at all that was already so, so good.

But in the last couple of weeks I’ve stepped back to look at ‘the forest’ and am incredibly grateful for what I see. I see a child with a lot of self-confidence, who knows how to ask for what he wants and doesn’t give up. He is smart and capable, he loves people and people enjoy him. He’s kind, helpful, responsible and independent.

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I went to a bris recently with the younger four kids and ds greeted the father of the baby at the entrance to the hall with a hug and congratulatory wishes.

We went inside and he sat at a table with men he knew, and he grasped their hands in a high five cross grip. Then he went to the rabbi of the community and respectfully shook his hand and greeted him appropriately.

My husband wasn’t there so he was on the men’s side by himself. Though most boys his age eventually got bored and played with the elevator and were running around, he stayed seated for the next two hours, joining in appropriately at each stage. (The hard part was when it was time to leave and he just didn’t want to go.)

I watched all of this and wondered, how does he know how to act differently and so appropriately with all of these people despite them all being in the same setting, without any guidance from me?

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I attended his end of the year party a few days ago, and had mixed feelings while watching his class and the class above his perform with drums and songs. He’s in a special ed school, and while I watched, I kept asking myself what he was doing there. Yes, he has Down syndrome and yes, he benefits from extra mediation – but externally he seems to be more capable than the other children I saw. I’m searching for a better word than ‘capable’ and I’m uncomfortable making this statement at all because I have no desire to imply in any way a negative judgment of others.

There was a special breakfast for the mothers after the performance, and I listened to the conversation without participating. I drove a couple of the mothers home and we talked about an issue that came up in the group discussion, and I saw clearly that I think very differently than the other mothers. I don’t expect the school to raise my child; they are my partners and I’m appreciative of all that they do, but I see it as my responsibility to equip him for life. Not the school. This wasn’t their view.

Years ago a much more experienced mother of a child with Trisomy 21 told me that I think differently than most of the other mothers she met, and I didn’t understand what she was saying. She told me the way I take responsibility isn’t typical, and I finally understand her point now.

I’ve been thinking a lot about what academic framework would best serve him going forward. We’ve had a very difficult year because of difficulties ds has experienced on the school van – being hit, kicked and made fun of. When he reacted, I was told he was violent and not welcome on the van. The kids who instigated waited until the aide’s back was turned to say and do what they did, and it took four months until I finally learned what was happening from another mother whose child told her. It’s been a really rough year, and he’s spent a third of the year at home with me.

I’m very clear that there’s not going to be another year like this. I’ve already spoken to the person at the municipality who makes transportation arrangements and put in my strong request for appropriate accommodations for next year. (When I spoke to them at the beginning of the school year, they said they weren’t yet completely set up; when I spoke to them during the year, it was too late, and when I continued speaking to them, they said that ds is the problem and no changes would make a difference.) If they don’t provide appropriate accommodations, I’ll keep him home.

Ds enjoys school, he enjoys his friends – but it’s my input that is moving him forward.

I’ve thought seriously about homeschooling him next year but as someone who thrives on being with people, I’m hesitant because I can’t yet picture how we would fill that social gap.

The principal of the local yeshiva ketana that my teens are at has spoken to my husband and told him they’d like ds12 to join the yeshiva when he’s old enough – that would be in another year or two. (He knows ds because he’s sometimes come to learn with an older brother when it’s between the official learning sessions.) I’m very interested in doing that; perhaps he’ll continue in the mornings at the school he’s at and attend the yeshiva in the afternoons, or perhaps we’ll take him out of the school he’s in completely. We have time to figure that out.

Right now ds is beginning to learn to read his parsha (Torah portion to be read out loud for the congregation) for his bar mitzva; again, this is his initiative and something he wants to do. There’s no question I could do much more with him if he were home than if he continues at school – when he comes home it’s already 2 pm, and by the time he finishes eating lunch it’s time for me to pick up the other kids from kindergarten. So we don’t have quiet time together during the school year and I can’t focus on doing some of the things I’d love to do with him that would make a big difference for him.

So what does raising a child with Down syndrome look like twelve years down the road? We’ve passed the years when everyone looks at a small child and sees only cuteness. I worried when he was young that maybe we were living the best years of his life then and maybe it was only going to go downhill from there.

But now I don’t feel that at all. I see more and more maturity in him as he grows up, and have let go of most of those worries that I had in the earlier years. Now deep in myself I really believe he’s going to do great in life, he’s going to make friends and do things that are meaningful for him. I can’t guess what that will look like – we do talk a lot about when he gets married what will happen and I expect marriage to be part of his future – but I think it’s going to be really good.

So though I’ve had a year of challenge and I still have wishfulness about things I’d like to do and am not doing, at this stage raising a child with Trisomy 21 feels like hope and optimism, of relaxing and trusting the process as he continues on his path of developing into an incredible human.

Avivah

A reading program for struggling readers, and a speech training program for struggling talkers

homeschooling, parenting, Trisomy 21

At the beginning of this school year, I attended a meeting for mothers of my first grader’s class.

When the teacher discussed the different things they would be doing, she mentioned that they would be beginning reading this year. I asked if they would be using the McGuiness reading method, and must have winced when she said they would, since she asked me if I had a problem with that.

I explained that it was extremely slow, and my eleven year old is still not reading Hebrew independently after three and a half years of McGuiness. He is very bright and I expected he would learn to read within a year; he unquestionably had the capacity. I was very optimistic and relieved that Hebrew reading was something I wasn’t going to have to teach when he began at this school but have since learned that the approach is agonizingly slow. I said that it was frustrating and disappointing for me because he wants to be able to read his parsha in shul for his bar mitzva, and I don’t see how that’s going to happen with this slow reading program.

My last comment caused a rash of whispering and shaking of heads amongst the other mothers. Clearly they thought I was completely unrealistic in my hopes for him and were tsk tsking to one another.

It’s interesting that not one of the other mothers came over to speak to me afterwards, even though I’m the only one in the class who has an older child in this school and has experience raising an older child with a disability. Maybe they were all put off by my comment.

One person wasn’t put off, and that was a new assistant. She came over to speak to me privately, and told me that a family member of hers trained in a different approach to reading and has seen a lot of success. She further explained that the course is available for parents so they can teach their own child to read.

I thanked her and looked it up right away when I got home. It’s a video training program for parents, accompanied by a workbook to use when learning with the child. It sounded interesting, but it was expensive and I was afraid to buy something like that and not see it through.

I know my strengths and I know my weaknesses. Systematic application of detailed programs are something I have to put a lot of conscious effort into, and I wasn’t sure that realistically I would be able to follow through. I have a tremendous amount on my plate at any given time, and it was the beginning of the school year and before the fall holidays, which are especially busy times. I was afraid I would buy the program and it would languish mostly unused, leaving me with guilt that I not only wasted the money but didn’t take steps to help my son with reading. I have enough things on my mental list that I wanted to do but didn’t follow through with, and really didn’t want to add something else to that list.

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While I was thinking about the reading program, someone else told me about a speech training method that would help my children’s articulation. Both my eleven year old and seven year old have Down syndrome/Trisomy 21, and thank G-d are smart kids. But their speech can be hard to understand at times. We’ve come very far with the help of Gemiini – ds11 was diagnosed with apraxia at age two, and by age five when he met a new speech therapist, she said it must have been a mistaken diagnosis because he didn’t have signs of it.

It wasn’t a mistaken diagnosis – we did a lot of work on our own using Gemiini and together with our own strategies, that helped him move forward in speech significantly.

The speech method I was told about is called Verbal Motor Learning (VML) and training would begin in December and be held mostly over Zoom for attendees in Israel. Again, I went back and forth in my mind about the expense (about four thousand shekels) and if I had the capacity to apply what I learned on a consistent basis.

Now I also had to consider which of the two programs was more important – reading or speech? Could I do even one of them? But both were so important to me.

After several months deliberating, I finally decided to jump in and get the reading program during Chanuka vacation. I would get started right away and get some traction, and then would sign up to begin the speech training.

Naturally, plans don’t always work out the way we intend.

The materials for the speech program didn’t come for a week, and by then vacation was over. In addition to usually having ds11 home with me (that’s been the case most of the year – a topic for another post), I was then busy setting up and meeting with therapists for the twins and other school meetings for them that had been delayed because of the war.

The deadline for the speech training was coming up. I finally sent in the registration form online, but didn’t get a response back. When I called, I learned that due to lack of enrollment, the Israel training wouldn’t be held and my forms hadn’t been received. I asked if there was another online training available. There was – just one more. It would begin two weeks later, taught in English and translated into Romanian, with the live demonstration portion taught in Romania.

The hours of the course are very difficult for me – two full days a month (9 am to 5:30 pm), then another evening from 6 – 10:30 pm, three days in a row. The training in Israel that was cancelled had been morning hours, with classes twice a week – that was more doable for me. But I decided to sign up, even though I can’t go to Romania for the hands-on workshop.

I’ll share more at a later time about each of these programs when I have more experience with them both. This is where I’m up to now:

It’s been about five weeks since I’ve been doing reading sessions with ds11 and it’s going really well. He loves it and every night before bed – when I’m so tired I really don’t want to do anything – he reminds me that we need to do reading and enthusiastically brings me the workbook. He’s great with a structure and keeps me on track! It’s very, very encouraging to see his progress so far.

Last month, I began the speech training program; right now I’m in the middle of the second month’s sessions. Most of the others on the training are speech therapists who work with non-verbal children; most are in Romania but there are a few from other European and South American countries. I’m the only one from Israel and there’s no one from America.

Even though as the eternal student I generally love learning, this isn’t easy or enjoyable for me. Almost from the beginning I could see what an incredible tool it could be for my boys, if I could see it through. However, I find it draining to sit on Zoom for so many hours. And it’s not easy on my family.

Last month, the twins got completely dysregulated after just one afternoon of me not taking care of them, even though the older boys and my husband were with them, and even though they saw me in the bedroom and talked with me briefly. They both just lost it emotionally.

The hours of the training allow me to get the kids ready and take them to school as usual, and at 9 am start the classes. Often during the week a child will stay home with me for a day, and the kids regularly ask me whose day it is to stay home. Yesterday when asked who was staying home, I told them everyone was going to school that day and I would be doing my classes from the computer, at home.

A few hours later, I got a call from dd6’s teacher to ask me if something was wrong with her, that she was very emotional, complaining that different parts of her body hurt and crying about everything. We had a relaxed and pleasant morning before that, nothing was out of the norm; I never send a child to school who indicates they aren’t feeling well. She was fine.

She came home and screamed and cried literally off afternoon, even though I was home and available for them. I haven’t seen her act like this in months. I believe that something about hearing I would be doing classes while she was in kindergarten caused her to feel like I wasn’t available even though she wasn’t home at the time.

They’ll be waking up soon and I’ll be sure to be extra reassuring and not mention the classes – yesterday morning I literally made only one comment in passing that I would be doing classes. I’m a very strong emotional regulator for her and it was pretty powerful to see how when she thought – not experienced – me not being available to her, it threw her into an emotional tailspin.

Last month the older boys had a couple of days off and together with my husband, took care of the kids while I was doing the training. This month I have chosen to make up the afternoon sessions and review the recording afterward (I usually attend live) so that I am there for them. This is more challenging for me but I hope it will help the twins stay on a more even keel.

Avivah

Ten years after our Trisomy 21 diagnosis…reflections

parenting, Trisomy 21

Last week we celebrated Yirmi’s tenth birthday. It doesn’t seem like a decade ago that we got the surprise diagnosis that our newborn son had Trisomy 21. I suppose time always seems to pass more swiftly than you expect it to.

I’ve learned quite a bit along the way, but the biggest ongoing lessons have been: believe in yourself – you love and care about your child more than anyone and you are capable; believe in your child – you know him and his potential more than anyone; and keep believing in him even when externally it looks and feels discouraging.

As I just wrote that and looked at it, I thought to myself, well, what was so different about that than any child? And the answer is, nothing. But these have been my biggest takeaways during this last decade, and continue to be what I hold in the forefront on my mind.

I’ve shared before that I’ve often felt inadequate, wishing I had the resources to do more for him. I’ve had to put aside thoughts of what other mothers do to support their children and not compare myself.

In spite of what I haven’t done and continue not to do, I have an intelligent and capable son who happens to have T21. He’s doing great and continues to develop and mature. And I’m maturing, too, continually becoming more appreciative of things in the present moment, as they are right now, without holding out for perfection.

I really don’t believe in perfection, but when it came to Yirmi I wanted so much to be able to give him the support I felt he deserved that would enable him to actualize his potential. While that is a noble intention and came from a place mostly of love (but let’s be honest, there’s always ego there), realistically I have to wonder how many human beings on the planet have fully realized their elusive potential.

I had an internal struggle after having Yirmi, since my educational philosophy is based on giving kids the space and time to step into who they want to be and want they want to do. I’m not a fan of pushing kids much. But the proactive moms of kids with T21 whom I most identified with, do a tremendous amount to actively support their children. The accomplishments of their children looked so compelling, and I wanted those for my child, too.

I can feel guilty about it or not, but I am who I am. I’m a fantastic mediator, I’m a good role model of life-long learning, and I provide a lot of hands-on, skill-based learning opportunities. That comes easily to me; I don’t have to read books on how to do it or schedule it in to my day, or work hard to remember I should be doing that. I read quality books to my children, use good vocabulary when speaking to them, and their comprehension and verbal expression reflects that.

Other things don’t come naturally to me…activities that don’t come naturally to me are the things I end up feeling inadequate about. I felt they should be done whether I found them easy to do or not, since my child deserved to have this kind of support.

It’s so, so easy to slip into focusing on what you’re not doing. My challenge has been to let go of that ‘not enough’ voice and actively appreciate where we are now: “My kids are doing great, I’m enough and let’s just keep doing what we’re doing.”

I’ve also found peace of mind about having him in a special needs school. Letting go of my ideal of inclusive learning wasn’t easy. While the school he attends is a state of the art school and I very much appreciate all that they do and how they do it, I felt I failed by not continuing to pursue inclusive school environments. Why not? Because it felt like too much pushing, too much advocating, too much interfacing and educating teachers and administrators. I questioned if it was fair to him to put him in a school system where he was likely to be at the bottom of the class, no matter how hard he tried. I’ve never put my children in high pressure environments, since I don’t believe that’s beneficial developmentally. I wouldn’t do it to my neurotypical kids, so why was it desirable in the name of inclusion to do it to my sensitive, open-hearted child with T21?

I can sum up the last decade by saying, I’ve had and continue to have opportunities to practice appreciating who I am and putting the focus on that. The more that I’ve stayed true to myself, to what I believe- even if I disappoint those who would prefer I promote a different message or take different actions – the more at rest I feel within myself.

We seek to create an atmosphere at home in which our children can find that critical ‘rest’ that is so necessary for development, a place of not having to prove, of being safe, of knowing he is just right the way he is – and this is the same kind of space we should be creating for ourselves as parents.

You can see that most of the last ten years wasn’t about Yirmi – it was about me sifting through lots of information and perspectives, and making room for my own beliefs. It was about letting go of frustrations I sometimes felt when he wasn’t hitting milestones at a pace I would have liked, and replacing it with genuine appreciation and acceptance for his personal timeline. It’s been hugely about accepting and appreciating my own self.

Raising children isn’t for wimps. Raising kids with special needs has the potential to make you look even more closely and deeply at yourself. While I can look at what others do and genuinely appreciate their efforts and be glad for them, I no longer participate in T21 groups that I had considered a source of inspiration, because the inspiration I received paled next to the inadequacy I was left with. Recognizing something can be valuable to someone else but doesn’t serve me at this time, and being willing to let go of it is an important lesson.

Someone asked me today, is it really much harder to raise kids with T21? I paused, because I don’t want to sugarcoat and I don’t want to exaggerate.

Two and a half years ago I went on a two day trip sponsored by the school ds5 was in at the time, and it was such a positive experience for me to be in a room with other parents of children with a diagnosis, and I hope I’ll have another opportunity in the future to participate in a similar kind of getaway. It was a relief to be able to mention an area of challenge, without feeling someone would judge me as complaining or judge my child for being limited.

So yes, there are things that are harder or different, things that have required me to be more patient, to work harder, to do more. Has it helped me grow as a person? I hope so.

I feel the most accurate answer to the above question is, “It’s mostly the same as raising any child, with some differences.”

A teaching assistant of Yirmi’s told me a couple of years ago, ‘There’s nothing wrong with Yirmi and his developmental pace. The problem is the world expects it to be different.” There’s a deep, deep truth to that statement.

Avivah

Back to quarantine…thinking about homeschooling again

homeschooling, parenting, personal development, Trisomy 21

I got a call earlier this week that one of our school children had to go into quarantine. I was hoping that my five year old could have his birthday party in kindergarten with his nine year old brother in attendance before either of them were quarantined and we almost made it, but the night before the party we got a call that ds9 had been exposed to someone with a positive test result. (For those who are new, our youngest two sons have Trisomy 21/Down syndrome and attend a special needs school; our older son began there in the spring, the younger one began in September.) Ds5 had a great party but his brother wasn’t there.

The day after the party I preemptively pulled my five year old out. I took him out not because I’m worried about him getting sick, but because I don’t want to wait for him to be put into quarantine. It’s important for children to have a regular and predictable schedule, and I didn’t want my kids to have the stresses of the staff and scheduling changes that they would have in school while this upheaval is going on, and then to have the restrictions of being in quarantine at home.

That was Monday. On Wednesday, I received a call from the kindergarten teacher that validated the decision to take him out preemptively. In his class, students were exposed to a teacher who tested positive in the afternoon session. (Since my son is the only one who doesn’t attend afternoon sessions I’m wondering who isn’t in quarantine at this point.)

Due to so many staff members at the school getting positive test results (though they all had to get the poke or have regular testing to continue working there), they are combining classes, cutting the school day to half days and there will be no Friday classes. I’m glad they’re finding a way to make it work, and I’m even more glad that those decisions don’t affect us.

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So this situation is providing me with an opportunity.

In recent months I’ve been thinking a lot about homeschooling ds9. When I made the decision to put him in school last year, I felt inadequate in what I was providing for him when he was home, and was sure that the experienced staff could do more for him than me. Though I’m very appreciative of the wonderful staff and all that they do, it’s now clear that I underestimated and undervalued all that I was doing.

What are some of the ways that I think homeschooling would benefit ds9? It’s pretty much the same as for all of our kids, though the stakes are bigger in his case. It would remove the pressures and limitations of the school environment (eg waking up early before his body is ready, the physical exhaustion from 2.5 hours daily of traveling to and from school, the lower expectations academically and behaviorally) while qualitatively offering him better learning opportunities. Being home would benefit his overall health, with more activity outdoors, better quality foods, and lots more love and emotional support.

When he’s relaxed and rested, he’s naturally a much more enjoyable child to spend time with. (Like every single person on the planet!) On the days he stays home from school his behavior and the quality of our interactions is so much improved. There’s no question in my mind that the person he will grow up to be will be dramatically impacted for the good if we make the decision to homeschool him.

That’s where the bigger stakes come in. Kids in special ed don’t get the same experiences interfacing and participating in the typical world as a child in an inclusive framework (be that homeschooling or inclusive education frameworks). I’m concerned that the older he gets, the more limiting the lack of this interaction will be for him. This isn’t a new concern for me; I’ve shared about it before and it’s something I thought deeply about before putting him into the school framework he’s in.

To be good at something, you need to have experience; the more experience you get, generally the more comfortable you feel and the more skilled you become. How can a child learn to interact effectively and appropriately in a world that he has minimal experience with, when there are different behavioral expectations than what he’s used to?

If that all makes sense, homeschooling doesn’t seem like a hard decision. What is there to think about?

My hesitations are regarding my physical ability to homeschool him. Two and a half years after being rear ended and my car being totaled in an accident, my energy remains very impacted and I still need to rest a lot during the day. So my question has been, even if it would be best for him, do I really have the physical and emotional ability to have a younger child who needs a lot of guidance at home? Even with twenty years of homeschooling behind me, this remains a real concern for me.

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Have you ever made bread every week for an extended period? It was part of your regular schedule so you just did it. But if you stopped for a while, then getting back into doing it again felt hard, right?

That’s kind of how I’m feeling about homeschooling ds9. Though I was managing okay when he was at home, there were a couple of challenges together with my energy level, that led me to seek out school as the better option. Now that he’s in school, I see that the support for those challenges isn’t what I expected and isn’t resulting in a better outcome than what I had, but getting back into homeschooling is a mental hurdle.

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I’ve decided to use this quarantine period as an opportunity for me to enjoy being in a homeschooling framework with our nine year old, without any pressure to make an official decision.

Now, if there was the possibility of homeschooling ds5 along with ds9, homeschooling would be an easy choice. They are close friends and play beautifully together, and with the two of them together, they can constructively occupy themselves so that I don’t need to be the source of entertainment all day long. If you’re wondering what the issue with that is: Two and a half years ago we put in our request to adopt him, but were denied by the bio parents. We waited a couple of years and are now putting in our request again. But for now, technically (not in our hearts) ds5 is a foster child and needs to be in school.

So far we’ve been really enjoying our time at home together. We’ve been starting our days with an outing when my energy levels are higher, and that’s been great.

If you’re wondering how could he be wearing shorts and a tshirt in the middle of January – yes, it’s really that warm!
Ds9, a doting uncle with his 15 month nephew

Later, when I need to take an extended nap midday, I let them watch educational videos without even a drop of guilt, something that I berated myself for doing last year. I’m much kinder to myself now than I was last year, and it’s amazing how much easier and more enjoyable everything feels without self-judgment!

Avivah

After a year and a half, both of my youngest children are in school!

parenting, Trisomy 21

Ds4 has been homeschooling for the last year and a half, and made amazing strides. I haven’t mentioned him for a while, so here’s a quick update.

He’s always been smart – I told his bio parents when I first met them that I was sure he would be! – and now is visibly much more confident and secure than he was when he was last in school (March 2019). His physical development has been fantastic – climbing, running, swimming; a father of a toddler with Trisomy 21 met him in a park and told me he can’t keep his eyes off him, that he was inspired to see a child with Down syndrome move like he does. I get the same kind of comments we hear with ds9 – are you sure he has Down syndrome? The regular kind? Really? But he doesn’t look like it….

All of our kids are very good mediators, and in ds9 he has his own one-on-one private tutor for hours every day. He even taught ds4 to swim this summer.

And now, finally, he’s going to school! He’s really ready in every way. And so am I.

We had hoped to send him to a local multi-age mainstream kindergarten a few minutes from our home, but after two conversations with the teacher, it was clear that she may be a good administrator but warmth and flexibility aren’t her strong points (or maybe they just don’t come across on the phone). Her obvious impatience with me and disinterest in having ds4 in her class caused me to eliminate what seemed like an ideal inclusive option, and instead register him at the special needs school that ds9 attends. It’s more important to me that he be in a place where there is warmth and appreciation of who he is, than to pursue an supposedly inclusive option that would leave him marginalized.

Though there’s an afternoon option that every other child in the kindergarten and school attends, I opted not to send either of them. That would mean them leaving home before 7:30 am and coming home at 6:30pm. Instead, they’ll be leaving school at around 1 and home by 2:15 pm. I’ve been told again and again what a shame it is that they’re missing out on all the extracurricular fun activities, but I’m okay with that. Building relationships takes time, and our connection with them would be negatively impacted if they’re gone all day, every day.

I didn’t send ds4 the first two days of school since he had a mild eye infection. Instead, we inaugurated the first official day of school with a trip to a beach at the Kineret.

There was a homeschool meet up scheduled at that same beach for 10 am and though I would have loved to have met other families, the beach isn’t really a great place if you have modesty concerns. We go early in the mornings when we mostly have the beach to ourselves.

Ds12 swimming

Anyway, ds4 has been asking me for months when he’s going to to school, and was so happy to finally go with ds9 on the van this morning!

After I sent them off, it struck me that for the first time in a year and a half, I could do something without having to be conscious of the presence of a younger child. Though I still have two children homeschooling (12 and 14), parenting teens is very different than young children! It’s such a nice thing to have quiet space that isn’t carved out while my children are present.

Less than 90 minutes after putting them on the van, ds9’s teacher called. She notified me that the students in her class had a 45 minute session with a specialized teacher on the first day of school. That teacher just got a positive covid test, and ds9 will now have to go into quarantine for the next week and a half.

I wryly smiled inside – my quiet time will have to wait a while longer!

I’m grateful that at least ds4 was able to go on the school van for the first time together with ds9. I knew having his older brother’s ongoing presence would make the transition to kindergarten easier on him, but even if it was only one time during this early transition to school period, that still has been helpful for ds4.

And so the school year has begun, kind of!

Avivah

How I created and resolved my biggest issue

parenting, personal development, Trisomy 21

For months I’ve felt increasingly pressured about having my eight year old home. In November I finally shared some of that here, and a month later I posted about finding a school for him.

I turned to the local municipality to arrange transportation for him, and feeling the intense need for him to be at school, was initially very frustrated at their laissez faire approach to getting this done. It’s been over two months and no progress has been made, so he is still home.

Now here is the very interesting thing. About two weeks after we found a school for him, I suddenly noticed that it didn’t feel hard to have him at home anymore. Not only that, but I’ve been really enjoying him!

This initially mystified me. I had been working on my mindset with regards to this issue; I wrote lists of things I appreciated about him, I did meditation and visualizations to keep my focus on all the wonderful things about him – and suddenly, with no conscious effort, I appreciate him being at home!

So what changed?? I did a lot of thinking about this, to figure out how and why this shift happened, and I think my experience will be helpful for others.

When I posted in November, I shared about one issue that was challenging for me. But there were others that I told myself I needed to deal with, but felt overwhelmed and alone to deal with them all.

Here’s an incomplete list of some of the things I told myself I should be doing:

  • Digestive issues – These began when we moved here and began letting him have gluten on Shabbos. Even after we removed the gluten again, the issues remained. What to do? a) Figure out how to heal his digestive system while dealing with ongoing digestive issues. b) Do daily or at least weekly laser therapy sessions. What do you mean, you don’t have energy to do this? Okay, it’s true there’s a lot of laundry and cleanup that the issues entail throughout the day, but what kind of mother can’t get herself to do something this important for her child? You need to solve the problem at the root.
  • Speech – Yirmi’s speech content is really good, his articulation is not so good. What do do? a) put him on Gemiini daily for online speech therapy (which means customizing videos to match what he needs); b) set up speech therapy in our new location, entailing lots of paperwork and logistics, then weekly travel to a city nearby. Oh, that feels overwhelming? You feel maxxed out and can’t do it? So now your child has to suffer because you feel tired. You know that the window for doing this is closing and he’s going to suffer for the rest of his life because you didn’t invest in helping him speak clearly when he was young.
  • Reading – He loves to be read to but I haven’t taught him to read in either language. Yes, he knows the alphabet in Hebrew and English but he could be reading in both languages if he had a mother who was more competent.
  • Hearing aids – after many months of a process that was protracted and expensive, we got hearing aids for him. But he pulls them out as soon as I turn my back. Since we have an issue of him leaving the home without telling us, I knew within an hour they would be lost somewhere outside, never to be found again. Solution: sit down with him daily first thing in the morning, keeping him entertained so he wouldn’t pull them out. Why is it so hard to spend two hours nonstop keeping him distracted? Just do it first thing in the day. Make it a priority. Then he’ll get used to them and you can increase the time gradually. You know how important hearing is to speech; of course he isn’t speaking clearly if he can’t hear clearly.
  • Thyroid issues – He gained a lot of weight after we moved here. Figure out why, get his thyroid tested again. Find an alternative doctor who understands the thyroid. Change his diet.
  • And of course, the eloping issue. Watch him every single minute of the day because he needs to be safe.

So now you’ve gotten a peek into my mind, some of the thoughts that were running through my head within a few minutes of waking up and continued throughout the day. Sometimes I just didn’t want to get up and face the day. It felt so hard and heavy, and no matter how much I would do, I had a constant knowing that there was so much that was important for him that needed to be done and I wasn’t doing it.

I would tell myself that I was doing what I could and it had to be enough, I would try to reduce the urgency. But thinking about all of this (and more) was always very close.

I thought it was dealing with the daily issues that was the pressure, that was hard (and it would have looked like it from the outside, too). But I was wrong.

It was my thoughts about how inadequate I was that was draining me and made everything feel overwhelming.

Why did those thoughts suddenly stop being an issue? Firstly, the feedback from the school staff. All I saw was what I wasn’t doing. But they didn’t see all that. They don’t expect parents to do the things that I expect of myself, and they were very understanding about why he isn’t wearing hearing aids, for example. No shaming at all. It was obvious to them that it was a very challenging issue, without me having to explain with more than two sentences.

Not only weren’t they shaming me, they were impressed with Yirmi’s focus, thinking skills, desire to learn, and intelligence. They told me more than once how it was obvious I had invested so much in both boys (since ds4 was there for the interview, too).

A friend who has an older child with T21 told me, ‘No one does what you do for your kids, no one I know expects of their child what you expect of yours.’ I’ve always shrugged off comments like this, because I’m sure people think that I do more than I do. It was really helpful to look at myself through someone else’s eyes and say, maybe they’re right. That replaced the voice saying ‘everyone can see you’re failing’. Not doing enough wasn’t wasn’t reality (though there remain many things that it would be nice if I did); it was my own made up story.

The second thing that changed was I stopped feeling pressured to take care of these issues, knowing that very soon I’d have people to work together with on them, or even a staff that would completely address them (eg speech therapy, supervision wearing the hearing aids). The weight of having to be everything, to know everything, to do everything was so, so heavy. It was a weight that I couldn’t lift and didn’t want to lift. But when I didn’t do it all, there was all that intense guilt and inadequacy.

Three – I dramatically cut my Facebook time around the end of November, and then deleted my account in the middle of January. And now I’m not seeing messages in my T21 groups from all those amazing mothers who are doing the things I’m not doing.

Without the negative messages replaying on a loop constantly, it’s not hard having Yirmi home anymore. In fact, I’m deeply enjoying him, knowing he is completely okay just as he is right now, that I don’t have to do any more than I am, and he doesn’t have to do any more than he is. And that feels amazing. (And I’m sure it feels good to him, too.)

It’s fortunate that I feel no urgency about sending him to school, since the pace the municipality is working – or not working – I don’t know when transportation to his school will be provided. Instead of feeling like I just can’t cope another day, I must have some help…it’s dramatically shifted for me and is all really okay.

It’s in the mind that most of our problems are created and solved.

Avivah

Resolving my inner conflict about special ed and inclusion

parenting, Trisomy 21

In recent months, it seems my only opportunity to write is when I’m up in the middle of the night which thankfully doesn’t happen often, so I’m taking advantage of a pounding headache to catch up here with you!

After I shared about some difficulties in having my eight year old out of his school framework for the last nine months, someone asked me if I considered sending him to school. The answer is yes, I have considered it. I don’t see homeschooling as ideal for him at this point, because so much of my energies are used in management rather than actually doing the things I’d like to be doing with the boys.

However, I’ve felt stuck when considering the school options available locally, and also stuck because my two youngest boys with T21 are doing so well at home. Ironic that them doing so well is part of the challenge that makes it hard to send them to school, isn’t it? If they weren’t doing well, anything would be better, but I’d like to build on their success.

I’m going to try to consolidate years of thinking about this topic into one post and will undoubtably end up sounding simplistic. I have SO much to say about every aspect of this but I’m going to just stick to the briefest of bullet points.

It’s important for a person with a disability to be included as much as possible in normative life – we all learn from interacting with others, how to interact with others. My expectations for my children with T21 are the same as for all my kids, and I want them to be in an environment that would best prepare them for life. To me, that has meant pursuing an inclusive school environment rather than special ed.

However…they have needs that are different that need to be understood and honored in order for inclusion to be meaningful. If there isn’t an understanding or desire for inclusion to happen, then it’s effectiveness will be limited. This is the huge challenge in the world of inclusion.

I don’t believe that competitive environments serve children well, generally speaking. What is most important is a safe and supportive learning environment, where a child’s natural pace and internal desire is honored and appreciated. As a result when faced with a choice of various school options, I’ve generally chosen the less demanding educational framework for all of my children. (That’s a surprise for many who have asked me why my kids are such strong motivated learners!) Motivation comes from the inside and can’t be externally demanded, and a person must feel inner ‘rest’ (to use a Neufeldian term) before he will naturally seek more challenge.

So what does this mean regarding inclusion? The child with a disability in an inclusionary school setting is being expected to participate in a normative setting socially and academically. Ideally, this can be very stimulating and healthy.

It can also be a tremendous pressure. Pressure for the child, to constantly feel different and inadequate, to be working his hardest to barely keep up. To feel like his best is hardly cutting it. And I continually ask myself, is this the environment that will be most supportive of him emotionally, that will allow him to feel he is enough as he is, that he doesn’t have to prove himself? Can his many strengths be appreciated, or even noticed in that environment? Will his successes and hard work be recognized, or will he constantly be expected to do more and work harder?

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Let’s look at something entirely different: people making aliyah.

I’ve just recently moved from the most popular destination for people making aliyah – RBSA. Why is it so popular? Because English speakers can feel comfortable with lots of others who speak their language and understand their cultural mentality. Why does that matter? After all, if you’re an capable adult, then learn the language, get familiar with a different culture and integrate. That’s the ideal, right?

Right. And also, not right. Because we seek the comfort of being known and understood by those who ‘get’ us. Most of us don’t want to live in a state of unremitting challenge.

Recently a neighbor invited me to a small gathering of women; four of us were English speakers and one was an Israeli who understood English. At one point, the Israeli expressed her frustration that even though she understood what we were saying, she wasn’t getting the nuances and understanding the jokes. It was a lot of work and tiring for her to try to follow all that was going on, and she felt out of place despite our welcoming her completely.

———————————–

Back to inclusion. I want my children – all of them – to have meaningful relationships with others. To have people who get them, who speak their language. I want them to be appreciated, as they are right now. Sometimes we stretch them with stimulating opportunities, but I don’t want them to live in a constantly stretched state.

So my belief in inclusion, the reality of inclusion (at least where I live), and my deep conviction as to how children best develop have been somewhat in conflict.

Yirmi really needs interaction with people outside of our family and neighborhood, and the local school options weren’t a good fit. Several weeks ago, I went to visit a special ed school that is an hour away. I had heard very good things about it, but you can imagine that after years of being pro-inclusion that it was quite a mental adjustment for me to consider this. And I really didn’t want to send him so far away (though for perspective, he spent forty minutes on his bus to the school that was just a fourteen minute drive from our home).

The school was wonderful. Surprisingly, it was a better fit for what I was looking for than anything I considered in the center of the country, where there are supposedly so many options. (A friend in the north told me it’s a state of the art school that is considered one of the best.)

The facilities are amazing; the staff members were so warm and genuine in their interactions with Yirmi. We had a tour of the facilities, and at each room we went into (computer room, ceramic studio, gym, commercial kitchen, vegetable garden, petting zoo), Yirmi was the first one introduced to each teacher and Yirmi was the first one every staff member addressed. Their respect for and understanding of how to speak to a child with T21 (no talking down or overly simplifying) came through with every interaction.

I love the special three wheeled bikes they provide so older kids can ride independently even before they transition to two wheelers; the area where they ride bikes has been built as a model of a street corner, with a traffic light, traffic circle, bus stop and crosswalks, so that children are practicing road safety every time they are biking. I also appreciate that they have a Snoezelen sensory room, animal therapy, music therapy and hydrotherapy (in addition to the typical therapy options).

Yirmi was so happy to be there. It was very emotional for me to see how filled up he was by doing the assessment, visiting the different areas and interacting with the staff. I know that it’s been really hard for him to be so socially limited since we moved and his excitement was palpable.

They couldn’t tell me if they had room for him before meeting him, since there are multiple classes and placement is based on ability. They were impressed with both Yirmi and Rafael (who came along with us, naturally), and the principal said a couple of times it’s obvious how much we’ve invested in them, that they both have ‘high abilities’ (I prefer this terminology to ‘high functioning’).

Yirmi was able to visit the class he would be in, and was introduced to the other six other boys between the ages of seven and eight; at a quick glance it looks like five have T21. They teach reading using the McGuinness method, which I think is wonderful, and I’m glad he’ll be continuing to progress academically.

When he was asked if he wanted to go to school there, he enthusiastically said he did, and Rafael emphatically pointed to himself and insisted, “Me, me!” He also wants to go! (The group for his age is full, though, and as soon as Yirmi is settled, I’m going to find something close to home for him – his registration from September for a local preschool fell through the bureaucratic cracks when his file was lost, and it’s unclear if they still have room for him in the preschool that I originally signed him up for.)

Students can attend until the age of 21, and I appreciated seeing the older students as I passed them in the corridors. They didn’t present as the limited special ed ‘outcome’ that I had been concerned about. It was the opposite, actually.

So what does this mean for us? We completed enrollment and Yirmi was set to begin three weeks ago, but the local municipality has yet to arrange transportation for him to get there. That could have been done very quickly (since there are students from our area who already travel there) but hopefully at some point next week it will be in place.

Going back to school has been long overdue, and Yirmi is going to love it! I’m so relieved and grateful to have found a really good option that will provide a warm and stimulating learning environment for him.

Avivah

When I don’t want to write about Down syndrome because it’s hard.

Trisomy 21

Tonight Yirmi (8) was almost run over by a car.

You know how I said in October that I was going to share thoughts about Down syndrome, and then didn’t?

It’s because it’s so hard sometimes. So, so hard.

I’ve asked myself, what’s the point in writing about the difficulties, in telling you how overwhelmed and discouraged and exhausted I sometimes feel? What is the gain, who benefits? Do I need to write to get it out for myself? So you empathize with me? No. So I don’t write anything.

To add to that, I don’t want to negatively impact the perspective towards people with Down syndrome. Because there are so many societal stereotypes to overcome that are hurdles for the person with Down syndrome. So I don’t write anything.

And yet, what about my reality? To ignore all the challenges and not write about any of it seems dishonest. By not acknowledging the challenges, all my positive posts would be taken on their own without any counterbalance to accurately reflect my daily experience.

Yirmi is an awesome kid. Truly. He’s smart and kind and enjoyable to spend time with. 

And he’s been an ‘eloper’ (I’m choosing the more positive term rather than ‘runner’ or ‘escaper’) since before he turned three.

This is common with kids with T21, and it was my biggest concern (other than government involvement) when I thought about fostering a baby with T21. Because I didn’t know if I could deal with it with another child. (I reassured myself that it wasn’t a sure thing that he would become a runner, and maybe without Yirmi’s tutelage, he wouldn’t have been…..).

Generally this is an issue parents face with very young children for a short time that is pretty easily managed by just keeping the door locked. But when kids get older, they become very capable of unlocking doors, climbing through windows, over gates and fences, out of cars….

I’ve spent over five years, every single day, wherever I am, monitoring Yirmi’s whereabouts. Early in the morning before I’ve even fully woken up and opened my eyes, my ears are already listening to hear if he’s awake and trying to leave the house. 

When he was five, we had double sided coded locks installed on our entry door. Overnight, the stress level of every single person in the house went way down. It wasn’t perfect and there were still many instances to deal with, but it dramatically cut down on the management aspect.

And then we moved here 7.5 months ago, which has been so wonderful in so many ways.  Where there are many more possible ways to get out than one, and with a child who is bright, curious, persistent and determined – all our efforts to keep him in fail. Fences, gates, locks…it takes him just a couple of minutes to figure out a way out.

So it comes down to constant surveillance, and that fails, too. Because it’s actually impossible to not take your eyes off of a child in the course of a day.

Since Yirmi turned eight this summer, I’ve realized that he isn’t generally doing something inherently dangerous, he’s not running away – he’s running toward friendship, connection and stimulation. 

It’s normal for an eight year old to want to get out, to see people, to have experiences. It’s appropriate and understandable. I don’t want to turn my home into a jailed fortress (though believe me, I’ve seriously considered it many, many times). It’s been really important for me to remember that this isn’t a behavior issue but a processing issue.

What that means is the natural desire for independence isn’t tempered with an awareness of danger. Additionally, it’s as if he has no memory of anything we’ve repeatedly talked about on this topic – our constant reminders and discussions about needing to ask us before he goes somewhere – even if it was two minutes before. It literally makes no impact.

So things happen.

Tonight I brought him home from playing at the neighbors, and started to prepare the foods he requested. I turned around…and he was gone, again.

I assumed he went to play with the neighboring children in the area near our garden gate (that’s usually where he is), and a few minutes later, I asked my older son to see where he had gotten to.

Before my son left to get him, someone came to our house asking if I was his mother. She informed me that as he sped down the hill from our home on his ride-on car straight into the traffic of the main street that our street dead ends into, he had almost been hit by a car.

She described how he flew in front of a car whose driver slammed on his brakes, missing him by a hairsbreadth. She and another person who saw what happened both told me that he went between the wheels – presumably she meant he flew between the wheels of the car that stopped and the one right ahead of him – but it was clear that it was a very dramatic, very close miss.

It had been five minutes that he had been out of sight.

I went to retrieve him from the store on the other side of the street where he was waiting, not wanting to look at any of the other customers. I didn’t want to hear any comments about why can’t you watch your child, and don’t you know he almost got killed and where were you???

No one has any suggestions about how to keep track of him that I haven’t already tried. All I hear is, “You need to be more careful.”

How? How can I be more careful than I already am? He’s bright and capable – and his processing ability isn’t like a typical kid. So his impulsivity has nothing to balance it.

I know one day this isn’t going to be an issue. But right now, that feels far away and it takes a lot of emotional energy to get through the day. I try to begin my day with quiet meditative time in which I fill my mind with positive thoughts about Yirmi; this makes a huge difference as the day unfolds. When I don’t do it, by the end of a day I feel like I simply can’t live like this. Not one more day.

This ongoing, years-long challenge has been significant not just for me, but all of our family members living at home. It’s draining for everyone; it’s definitely not all unicorns and rainbows, that’s for sure. There are blessings and challenges with every child, and for me raising a child with Down syndrome has meant more of everything. I feel the blessing more and I feel the challenge more.

Avivah

Why should I have to explain my child’s existence?!?

parenting, Trisomy 21

This month is Down Syndrome Awareness month, and what I’d like to do during the course of the month is share some experiences and feelings I’ve had as the parent of a child with Trisomy 21.

Yesterday afternoon, I went to pick up my three year old and eight year old from the park (who both have T21), where they had spent an hour with a babysitter. When I got there, I saw ds8 sitting at the top of the slide, waiting for the girl in front of him to go down (I don’t know how long he was there before I came). After a couple of minutes while I was speaking with my younger son, Yirmi (8) said to me, “She isn’t going down.”

I responded, “Ask her to go down.” He did, and she refused, saying she wanted to go up the slide. He told me she won’t go down. I explained to her when you’re on the slide in the playground and someone is waiting behind you, you have to go down. If you want to go back up, slide down and then go back up around the other side.

She refused, making up different excuses – she wants to slide with her sister, she wants Yirmi to move away so she can climb up the slide. During these few minutes that we were speaking, I glanced at her mother standing close by, expecting her to step in. But she was busy on the phone and despite her proximity didn’t seem aware of our conversation.

After Yirmi had been waiting at least five minutes and the little girl wouldn’t move, I involved her mother. After her mother asked her to go down and she refused, her mother lifted her off.

The girl began screaming, then threw herself to the ground, continuing to shriek.

The mother was speaking to her daughter to calm her down, and as I was getting ready to leave, looked up at me. “Right, he’s a special child?” “He’s a child like any other child”, I replied, feeling impatient at the question. “Yes, but I’m trying to explain to her why he acted the way he did, and she needs to understand.”

“Acted like what?” I asked. “She said he was bothering her.” Heat began to rise in me. “I was watching him the entire time. He didn’t do anything to her – he sat there waiting patiently for a few minutes – all he did was ask her to move once.”

She continued talking to her child, who then said she was scared because he pushed her with his toes when she wasn’t going down.

Now, here in Israel, believe me, kids don’t wait patiently for five minutes for someone on a slide. They do a lot more than push someone gently with their feet – yelling, pushing and hitting is typical behavior. So this clearly wasn’t the issue (especially since I was standing there and talking to her the entire time, I didn’t see it and she didn’t mention it then).

I put the boys in the car. (Edited to add: I didn’t feel good about the conversation to date and wanted to speak to her from a more calm place inside myself, so I went back to leave things on a good note.) The other mother asked me how to explain the situation to her child. I told her that I believe that it’s best when we focus on what is the same between all of us than what is different, whatever the difference is. If someone isn’t acting the way that you like, I teach my kids to give the benefit of the doubt and assume they are a good person. She agreed, but after more conversation with her daughter, said that her daughter is very sensitive, that this behavior wasn’t typical for her, and finally clarified that the problem is that my son being different upset her. So how to explain that?

Deep sadness and frustration filled me at this well-intentioned mother’s question. Sadness that my child goes to a park and does everything right – and somehow the situation is about him, rather than the behavior of the girl.

Sadness that he can’t be seen as any other child. Frustration that the situation isn’t being dealt with the way it would if any other child had been sitting on top of that slide and she refused to move. Not liking something about someone isn’t actually an excuse for behaving badly, you know?

Frustration with myself for not being more patient and understanding and explaining better, while putting my two little kids in the car and then having them calling for me to come already while I’m speaking with her. When it’s been a long day and I’m tired and all I want to do is get home and give them dinner and put them to bed. When I just want my kids to be able to play and have fun at a park, without any conversations or explanations.

Frustrated and sad at the thought that kept circling around my mind afterward, “Why should I have to explain my child’s existence?”

Avivah

Am I amazing or a complete failure as a parent? Allowing myself be imperfect.

parenting, Trisomy 21

Recently we had our final meeting with our foster care social worker. She was the one who did our intake application and interviews, she was there when the transfer was made from the birth parents to us, and she’s come monthly for the last three and a half years for home visits.

Now that we’ve moved to a different part of the country, our file will be moved to a different organization that has jurisdiction locally. Hence the goodbye.

We took care of the formalities, and then she told me how much she appreciated working with us. She said,”Even though there have been times we’ve had strong disagreements (yes, when I found myself facing policies that I believed were harmful for my child!), I appreciate that you’ve always been willing to listen to me and consider my view, and that we’ve been able to talk about it.

She continued: “On a personal note, I have a lot to learn from you as a mother. Leadership Parenting, that’s what your approach is, right? I see that all the time, in the way you say ‘yes’ to your children and how you say ‘no’, really I see it in many different things you do. I can learn a lot from you.”

Picture taken by the social worker

Coming from someone who has been in my house regularly for years and has seen a lot of situations, her feedback was significant and appreciated.

Then there was two days later, when I was so, so, so frustrated with my seven year old and responded very disappointingly. I can’t even remember now what triggered it – it wasn’t something major – it was facing the kind of thing that I deal with every day.

A few months ago I went to a workshop on setting boundaries for kids with special needs. The workshop leader was excellent, but I felt very bothered listening and at the end I spoke up. “I’ve been using all these techniques for years – I’ve raised all my children like this. And it’s important to be clear that this approach doesn’t make it easy to parent a child with special needs – sometimes it just makes it possible to cope. Because I use these all day, every day, and sometimes it is just really hard. I think it’s important to be clear that if it’s hard doesn’t mean someone is doing something wrong.”

Yirmi (who is an awesome kid who happens to have Trisomy 21) will be eight in a week. When I think of that birthday I have to take some deep breaths and remind myself to let go of my idea of when things should happen, and also remind myself that as a parent, I’m enough.

I think that many (all??) parents struggle with these split emotions of sometimes doing great as a parent, and then falling on your face and feeling like a complete failure – sometimes within minutes. And you know what? There’s no contradiction to being a fantastic parent a lot of the time and struggling mightily at other times.

It’s the reality of parenting.

When I’m feeling discouraged and inadequate as a parent, I remind myself that I’m doing my best in every moment. We all are. Sometimes my best looks impressive and sometimes it really doesn’t look good at all, but with the good and with the not so good…..I’m enough.

Avivah