I was speaking with a friend tonight and shared with her a term and concept I had recently learned about, and it reminded me that I wanted to share it with you.
The concept was that of glass children, and I became aware of this by watching a TED presentation called Recognizing Glass Children: What it means to be the sibling of a special needs child. Though special needs children are referenced, I believe that the concept has wider applications than just to the special needs world.
First of all, what are glass children? No, it’s not children who are fragile and breakable. They are actually appear strong (note that I said they appear strong, not that they are strong). Glass children are children who are growing up in a home with a sibling who takes up a disproportionate amount of parental energy. This can be a child with an obvious physical or emotional disability, it can be a child with an addiction, a serious illness, or significant behavioral issues.
The siblings of this child are called glass children because their overwhelmed parents look at them and rather than see their needs…. look right through them.
You might be thinking that there aren’t that many glass children out there, but as I watched this presentation, I thought to myself how many families I can think of who would qualify.
The purpose of the presentation was to raise awareness of the needs of the glass children, and give some tips to parents and those in the community about how to help them. Glass children see the difficulties their parents are experiencing with their sibling, and their role is to be good and not make more problems. So they are. But this role comes at a heavy price, as they grow up having to cope with their needs themselves, feeling pushed aside in favor of their needy sibling.
As a parent in this situation, it can be very overwhelming to be told that your child who looks like they’re coping well – “Thank goodness so and so is doing well” – really needs help. After all, it’s because they’re maxxed out in the first place that they aren’t available for that child. So what can you ask of them? What these parents can do is recognize the reality that their child needs support, and if they can’t provide, find others who can – friends, professionals, family members. Don’t look at their competent facade and assume everything is okay – it’s not.
We all think that our lives are busy, but there are families who are living close to crisis all the time. You may feel busy, but they are constantly living on the edge of their abilities. Look around at families who are struggling with high need children. Can you invite the glass children for play dates, on trips with you, spend time with them? Everyone is caught up with the needs of their sibling, but they need to be recognized, too. This doesn’t have to be something you do all the time. Every small action can make a big difference in the life of a glass child.
On Sunday, I took Yirmiyahu to the eye doctor for an exam and was happy to hear that his eyes look great! I don’t have to go back for another year.
Then this morning I took Yirmiyahu to the pediatric hematologist for a follow-up visit.
A number of people have asked me why he needs to go to a hematologist (a hematologist is a blood doctor). The reason is that when he was born, he had an extremely high leukocyte count – 95,000. About 10% of babies with Trisomy 21 are born with this condition, known as transient leukemia. The hematologist told me, after we got the results of the genetic testing, that there had never been a question in his mind that Yirmiyahu had T21 due to his elevated leukocytes – he said it’s a medical phenomenon seen only in the Down syndrome population. Yirmiyahu received very strong antibiotics to counter this within a short time of being born, and we were very happy to see his leukocyte count go down to the normal range of 20,000 within a few days.
However, children who have transient leukemia are at a much higher risk for developing regular leukemia. As a result, we are in regular contact with a pediatric hematologist to be sure that his blood work continues to be okay. The purpose of this is that if, G-d forbid, there were signs of a problem developing, it would be caught at the very beginning. When leukemia is treated in the beginning stages, the prognosis is excellent.
Today’s appointment was super fast – now that I have the rhythm down of what paperwork to get when, it goes much faster than the first visit. Basically we just do blood work, wait ten minutes for the results, and show it to the doctor. But with all the traveling and waiting for buses, it’s a six hour round trip journey. But the important thing is that everything is okay. We can now extend the time between visits to 3 months, and he was able to schedule my next visit to coincide with the day I have another appointment at the same hospital, which is really nice!
I feel like I’m finally at the end of all the initial testing and medical follow-up we instructed to do – but in January, we start the follow-up cycle, since for a number of tests we were told to come back after six months!
It’s not only because I’ve been so busy that I pushed off the bas mitzva celebration for my dd12 for over a month. It’s also because thinking about planning it was stressing me.
You’d think that since I’ve made so many family events – bar mitzvas, bas mitzvas, brissim, shalom zachors, kiddushes, siyums – that making this bas mitzva really wouldn’t be a big deal for me. In fact, dd12’s teacher said to me tonight that she can tell that I’ve done this before since it looks so easy for me. It’s not that physically preparing is a big deal for me. The shopping, baking, cooking, and set up definitely took a good bit of time and energy. But that doesn’t really phase me.
What was bothering me was the idea of having to entertain a large group of Israeli girls. We were inviting her entire class (34 girls), many of whom dd doesn’t have much of a relationship with, particularly since she doesn’t yet speak Hebrew. It’s a different culture and I felt very pressured because I didn’t want to emcee an event like this in Hebrew. What finally helped me reduce my low grade anxiety about this was my decision a few days ago to call in some outside support – a woman who would bring the music and lead the dancing. This was a huge concern off of my shoulders, since the dances are different here from the US and the girls at this age need someone to actively demonstrate what to do in order to follow the moves.
It was a very busy day, made busier by needing to clean the entire facility that we were renting before using it. It was a good price, but that wasn’t something I was expecting, and it set me back on schedule by a couple of hours. So after setting up the tables with the kids, I went back home to get dressed and put together my talk. No, this really wasn’t part of my plan – I wanted to have everything set up two hours in advance because as I’ve mentioned before, I try to avoid last minute pressures that lead to tension. While I was at home, I finished prepping the last salad, then tried to reach the woman who was supposed to lead the dancing to make sure she was still on for the evening (our phone line was down since Thursday night so she wouldn’t have been able to get through to me), but her line was busy. Finally I called a friend to ask her to bring a music cd just in case the first woman was delayed.
I managed to get dressed and spend a whopping three minutes thinking about what I wanted to say before I needed to leave, and got back just in time to welcome the first guests who arrived a few minutes early. That was when dh told me the dance leader had called him and said she was sick and wouldn’t be coming. But not to worry, she had asked dd’s teacher to fill in. Remember, having this woman here was a big factor in me feeling like I wasn’t responsible for the entire evening, and now I had no music, no one to lead the dancing (which was a big part of the scheduled evening) – but obviously that’s how it was meant to be because that’s how it was, so there was no point in getting frustrated.
We decided against a full sit-down meal, and instead had a salad course and a desert course. The salad course included: tomato olive salad, Moroccan carrot salad, cucumber salad, tabouli, German pasta salad, leafy pomegranate salad and hummous. We also put out crackers and pretzels, as well as a drink table. (Those are dried rose petals sprinkled on the table between the serving bowls in the picture below.)
We weren’t able to put together the slide show we wanted to do, but instead dd18 put together a photo montage of dd12 that was displayed for people to look at when they came in.
Photo montage of dd12
This was really nice, since as her classmates began to arrive, they felt a bit uncomfortable. I suggested they sign the journal with a message for dd, and then they enjoyed looking at the photo montage. A short time after this (though when you’re waiting for something and not knowing when/if you’re going to get it, it doesn’t seem like a short time!), someone arrived with the music cd that had been sent by the woman who wasn’t able to make it due to sickness. Music really adds to the ambience, and we had borrowed speakers so we were good on that front.
We made the decision to limit the adults we invited, in order to keep the focus on dd and her friends. For this reason, we also limited the age of girls attending to 9 and up, though dd is beloved by a number of younger girls in the school and they would have been happy to have come! We invited about ten women, and six came.
After encouraging everyone to get something to eat, I spoke about the security situation we’re facing in our country and began with having everyone say a chapter of Psalms out loud together after me. Then I talked about the spiritual inspiration people can feel at times when they feel their lives are threatened – for example, 9-11 was a country-wide wake up for Americans – but that inspiration doesn’t last long unless it’s acted upon. I tied it into the inspiration of the High Holy days, that are behind us, and the upcoming holiday of Chanuka – the festival of lights.
I shared the quote “The candle of G-d is the soul of man”, and explained that the way we light candles within our souls is by taking action to become better people, to actualize the inspiration we’ve felt. This is is a particularly important message for a girl becoming bat mitzva – because what we’re celebrating is that a young girl is now spiritually an adult and able to serve G-d with the corresponding increased awareness and responsibility. I then shared about how dd had risen to the challenge of making aliyah at an age and stage when this is a very difficult thing to do, and the positive character traits that this showed. Since I spoke in Hebrew, dd16 translated the key points for dd12 to be sure she followed everything.
After I spoke, dd16 spoke about dd12 (also in Hebrew). Although afterward she was felt that she had forgotten to say many of the things she wanted to say, it was heartfelt and very nice – she spoke about how special dd is and how much she appreciates being her sister, and repeated some of her points in English for dd.
My husband and the boys (except for ds19) were there until this point. In the middle of my talk, the teacher walked in, and we were able to begin the dancing right after dd16 finished speaking. This was so, so nice – exactly what I had hoped for. I really wanted something fun and enjoyable for the girls to do together, something that dd12 could do with them without needing to speak. I wanted it to be an enjoyable evening for everyone, not just sitting around, eating, and then going home (not to imply there’s anything wrong with that – it’s just that it wasn’t right for dd).
They danced for a long time and then we brought out the desserts. Dd16 was totally responsible for all of this: three different kinds of jelly roll (white with lemon filling and frosting, white with chocolate filling and frosting, and chocolate with chocolate filling and frosting), chocolate layer cake, Boston cream pie, nut bars, peanut butter diamonds, oatmeal bars, and layered jello and cream. We also put out snack crackers.
While everyone sat down and had some dessert, dd12’s Hebrew tutor spoke. This is the person outside of our family who has spent the most time with dd and is able to see who she is (this is very different depending on if she’s with English speakers or not). She started off by saying something like this: ‘Girls, if you don’t speak English you don’t know what you’re missing, because you can’t really know who (dd) is and that’s a big loss for you! (Insert nice comments about how wonderful dd is here.) So you have a choice, to learn English or to teach her Hebrew!’ She went on to share some lovely ideas that she tied into dd12’s positive character traits.
After this, dd17 spoke. She hadn’t been sure she would speak until I called her up to the front, and decided to speak in English. As a preface to this, I told the girls, “For the next few minutes you’re going to get to see what it’s like for dd12 – except this is what she goes through hour after hour, day after day, week after week, and month after month. You can get a tiny sense of what it’s like to have to sit and listen to someone and have no idea what they’re saying.” Then dd spoke, beginning with one of her first memories of dd12 and continuing by telling dd12 how special she is and how happy she is to have her as a sister. (In case you’re wondering who was listening to her if dd’s classmates speak Hebrew, there were the adult women, the teachers, and about ten of the girls there come from English speaking homes. As far as the Hebrew speaking classmates, they learn English in school, so there was some level of comprehension – though for some very minimal – of what was being said. And most importantly was dd, since dd17 wanted her to fully understand what was being said about her.)
After this, we put on the dance music again. Although the teacher leading the dancing had left, the girls were much more comfortable and they danced, and danced. As someone said to me, these girls just don’t want to leave! I was so glad that everyone was having such a nice time!
Family photo minus ds19
The party ended up lasting for 3.5 hours, instead of the projected 1.5 – 2. We all had a really nice time, especially dd12. This is the third bas mitzva that I’m sharing about here on my blog, and I am so happy and grateful that it went so well!
This is a fifteen minute video made by three typical kids and their three friends with Trisomy 21. In it, they share about the common issues to help others understand what Trisomy 21 is, and how it affects their friends. Though this was geared to be by kids, for kids, it’s suitable for adults as well as kids of all ages. I think it would be great for parents to watch this with their children so they have an understanding when they see someone with Down syndrome about what to expect – and the message is, we’re all much more similar than we are different.
I really enjoyed this video! Take a few minutes to watch it, and let me know what you think – was this informative? Did you learn something new, or get a different perspective on Down syndrome?
Tonight we sat down to plan for our upcoming bas mitzva!
My dd turned twelve on Sukkos, but things were so busy that we decided to push off the actual party for a few days. However, due to delays in getting the place we wanted booked, it kept getting pushed off more and more. When there’s something that needs to be done, my general approach is to do it as soon as possible. The way I see it is, there’s always more to do and there’s usually not going to be a better time, so I might as well get things done as quickly as possible so they don’t cause mental clutter.
We originally were aiming for Saturday night but booking the location was getting too drawn out – we couldn’t get hold of them, and then when we did we had to call again and again, and then it wasn’t available for when we wanted it – and a few days ago we set the date for a week from now. A nice thing about switching to a Sunday evening is the set-up will be much easier, since we’ll have more time prior to when things begin to get everything done. It was worth waiting to be able to rent this place since it’s close to us, a very reasonable price, and has the space that we’ll need.
We wrote up a basic menu plan tonight, and that leaves the next five days to do the shopping, cooking, baking, and organizing. Dh will take care of the invitation either today or tomorrow – that sounds really late, I know, but apparently here it’s typical to give the invitations out just a few days before. We’re planning a slide show, buffet dinner, and music/dancing. I don’t know what to do about the bas mitzva speech that the girl usually gives – dd12 doesn’t speak Hebrew yet and her classmates don’t speak English, and a week is way too short a time for her to memorize it in Hebrew. This will be a much bigger crowd than either of my other girls had for their bas mitzva, since dd12 is in a class of 34, and she’s more hesitant about speaking publicly than either of them were. I’ll probably speak as well so I’ll have to find some time to put my thoughts together – I don’t mind speaking in Hebrew though I might make some grammatical mistakes but I would like my daughter to understand what I’m saying! So that’s something else that I have to think about how to handle.
Things are never quiet around here, but this week will be a bit busier than usual!
Before he was released from the NICU after birth, Yirmiyahu was given two hearing tests. He passed one but failed the second one, and though the technician said that him squirming might have been the cause of the poor test results, we needed to have another test done to check it out.
It was quite a wait from the time I made the appointment until when we were seen, and a couple of days ago we went to our appointment at the hospital where he was born to have the testing done. I like when I can go back to somewhere familiar, but an 8 am appointment means I need to be on a 6 am bus, so it makes for an early morning.
The instructions were not to feed him or let him sleep for two hours prior to the test, which wasn’t very realistic for such a young infant. I tried to give him a full bottle at 5:30 am but he was way too sleepy for that, and travelling by bus in a baby wrap is a good recipe for sound sleep! While I was waiting to have the test done, I gave him the last couple of ounces in his bottle, and the technician going by chided me. I told her, he can either be sleepy or hungry but he can’t be both. It ended up working out well since he had to swallow a syringe full of syrup to make him fall asleep, which he hated the taste of. I got it into him by giving a little squirt from the syringe, then quickly letting him drink from the bottle to wash it down – we did this a few times until he finished the syrup. Even the technician approved!
Once he was asleep, the testing went really quickly. While I held him in my lap, electrodes were attached to his forehead and above his ears, a tiny microphone inserted into his ear, and then different sounds were made while the computer recorded his brain’s response to the sounds. Amazing what technology makes possible!
I was delighted when the doctor finished the test and told me Yirmiyahu’s test results were perfect! I know that hearing is an area of concern for a lot of babies with T21 so this was really a relief. When I took him for an ultrasound on some internal organs a few weeks ago I was told everything was fine – and then I showed the results to our pediatrician – she told me it wasn’t reassuring for a technician to say nothing was there when something had been there before, so I need to take him to yet another city to have a repeat ultrasound done in a different office. But this time, the results are conclusive and there’s no need to retake the test. We have six months before we need to do another hearing test, and I’m so happy for the good news!
Six months ago, I ordered a couple of games from Amazon and had them sent to my mother so she could include them in her lift. My ds5 came home from a visit to her home today with one of them (they still have boxes that are getting unpacked).
I had never played this game and bought it based on the description. When they saw it, a few of the kids said they had played it at friends and really enjoyed it. It’s a card game called Blink, and I got it because I wanted something that kids of different ages could play together, that was easy to learn, fun, and didn’t take too long. (I don’t have the patience for long detailed instructions to learn new games – my kids know, either explain it to me fast if you want me to play with you, or I won’t play – too many other things demand my attention.)
This was so great – it takes about thirty seconds to learn to play, and each game lasts maybe a minute or two. My kind of game! I played with ds6, then ds5, then with both of them, then with dd12, then ds10 – and we all had fun! The basic idea is that you put down cards that have a feature that matches the card on the table – color, number, or shape – it kind of reminds me of SET (another fantastic family card game) but it moves super fast. So I consider it educational in addition to being fun!
I bought this with the intention for it to be a family Chanukah present, but since my mother didn’t know that was my plan, she gave it to ds5 to give to me, and ds6 opened it before it got to me. But we’re all enjoying having it now!
Over the years I was homeschooling, parents often told me that they could never do what I did. It’s just so hard to homeschool rather than sending your children to school, was the sentiment. It’s so much easier to let the teachers deal with them than to keep them with you all day.
For years, I told people that the idea that sending your kids to school was easier was a fallacy. That the more time you spend with your children, the more pleasant they are to be around, the more tuned in you are to each other, and a positive spiral is created. You want to create a negative spiral? Do the opposite.
Well, let me tell you, after over a year of having my children in school, I can tell you that I was right. It takes much, much more energy to raise your kids well when they’re in school all day. They come home tired and uptight, and you get to spend a portion of the time you have with your kids remediating the behaviors that they picked up during their school hours. Then once you’ve emotionally reclaimed them, you put them to bed, send them off to school, and get to start all over the next day. There’s just so much time spent putting out fires and doing damage control.
You want a lovely example of this? Two days ago I went to pick up ds5 from kindergarten. That particular day I happened to be alone – usually the baby is with me – so it was just the two of us walking together on a beautiful day. As we walked along, I said something innocuous, but it annoyed him. So he told me not to say that (no, he didn’t request), and then a minute later, said to me in a demanding voice in which he was clearly trying to provoke me, “Should I tell you to shut up?” Never, ever, have I had a child speak to me like this, and if it had happened, it would have happened once and that would have been the end of it. Though this was the first time that he ever said this, less than pleasant means of expressing himself are becoming too common, and the relationship has to shored up before any correction can be effectively employed. This is what I mean about having to spend time remediating negative behaviors.
Today ds5 and ds3 stayed home with me. Fridays are a busy time at but they were around as I did whatever I had to do – they put Yirmiyahu on the crawling track a couple of times, we read a couple of books, they shaped challah dough, and then the two of them took a bath together. I let them play in the tub for a while, and then they got dressed for Shabbos. While they were getting dressed, ds5 told me, “You’re a cute mommy”. Then he put it to a tune and started singing it again and again. Then he put it to partial Hebrew, ds3 started singing along with him, and then they started singing to each other how cute the other one was. So sweet!
Right now, ds5 is busy slicing up cucumbers for cucumber salad while I write. He’s been constructively busy all morning, and emotionally engaged in a positive way with me throughout this time. I didn’t hear one even slightly negative thing all day, no negative behaviors that are typical on school days – I’m the same parent , these are the same children – but the behavior is totally different from one day to the next, and the big difference is going to school versus staying at home.
Today is Day 30 of 31 for 21, a blogging effort to promote awareness of Trisomy 21.
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Several weeks ago, a family on one of the T21 lists that I’m on shared with us that they had been featured on ESPN. In this fifteen minute video, the father shares with tremendous honesty about wanting to abort his daughter when they learned she would be born with Down syndrome, and his journey towards embracing her as perfect as she is.
Sorry for the long delay in posting – my ds13 returned over a week ago from a month long visit in the US, and brought me a new (used) laptop with him. This was something I had been anticipating with great eagerness since my computer has been out of commission for two months. Ironically, the day he brought it home and I turned it on to use it for the first time, our internet service was cut off – when we registered for our phone and internet service, we authorized automatic deductions from our bank account. The internet service provider broke off from the phone company and now needs a separate authorization, but didn’t tell us – they just cut off our service! We figured out what happened when we tried to log on and got a message from the internet service provider informing us that we needed to take care of payments to have service. That took a week. It is so nice to finally be online and to have a computer again!!
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Today is the Day 29 of the 31 for 21 blogging effort to raise awareness for Trisomy 21, also known as Down syndrome.
When I was in the NICU with Yirmiyahu, after the baby in the isolette next to him died, the next baby placed there was a very tiny preemie. He was born at 23 weeks, and being able to see what a baby that young looks like was amazing. He was so, so tiny but fully formed – he looked like a miniature baby. The length of his entire foot was probably about equal to the tip of my pinky finger. Looking at him and then at my baby, I thought about how babies at 23 weeks of pregnancy can still be legally aborted, and that most babies with T21 are aborted. Yirmiyahu is lucky to be one of just ten percent of babies with T21 who make it to this world.
When my computer went down a couple of months ago, I lost the sites I had bookmarked so I did a search to try to find a particular T21 site again. In the process, I came across a board for mothers who had terminated or were planning to terminate their babies with Down syndrome. It was difficult to read about so many women making this decision, and it was clear that this was a painful decision for many of them.
Something that many women wrote is that they felt it would be selfish of them to let their child live, to suffer from whatever challenges he would be born with. One woman who aborted her baby made a statement that I found very insightful. She had chosen to abort her baby even though there were no obvious health challenges in the prenatal screening other than T21, and wrote that she believes Trisomy 21 isn’t incompatible with life as much as it’s incompatible with society.
Isn’t that profound? And isn’t it true? The difficulties for our children with T21 don’t come primarily from the state of being born as they are – yes, there are physical and cognitive challenges that they will face. But being faced with challenges is something we all can look forward to – not one of us will go through our lives without significant tests in some areas. The real difficulty for a person with a disability comes from having to live in a world in which they are seen as inferior and incompatible. As a society we are so uncomfortable with differences, that many people see it as laudable to prevent a child who will be too different from being born.
I believe that something that helped me to easily accept the news that our baby had T21 was being the mother of nine other children of a range of ages. During the last nineteen years, I’ve learned that just every child is going to have his challenges, no matter how high his IQ or how robust his health. A typical child may be made fun of, struggle with self-esteem, have learning difficulties – just because they’re born typical is no guarantee of their performance at any point in life. However, when you have a typical baby, you’re congratulated – no one feels the need to tell you right after you’ve given birth that your child will one day face some kind of difficulties, though this is absolutely a fact. But when you have a baby with T21, instead of congratulations you get warned about all of the probable issues upfront by doctors with sad faces. This can be very depressing if you believe that doctors have all the information and all the answers. I don’t believe that doctors can know the potential of any child, and since I know every child will have challenges, hearing about our baby having some more easily predicted concerns didn’t frighten me.
The clear message that doctors project, whether spoken or not, is that your child is a problem. I’m not surprised that so many people choose abortion when faced with this attitude. But maybe our children being born a little different isn’t really the problem? Maybe the problem is a world in which it’s normal to believe that that people who are different don’t deserve to exist? Maybe children – and adults – with differences are sent to this world in order to make the world a more loving and accepting place, to remind us that we’re all inherently the same even when we look different?
When I was pregnant, I read a blog in which someone shared about someone who had been told that their baby had markers for T21 and aborted her. When the procedure was complete, they learned that their baby didn’t have Down syndrome, and the grief that they had aborted their healthy child was indescribable. This blogger wrote, but what about if their baby had T21? Would it then have made it more okay to have killed her? Does a child with Down syndrome deserve to live less because he may have health issues or cognitive delays at some point in his life?
These children are our reminder that every single person has value and a purpose in being here, though their beauty and gifts are not often enough recognized in a world in which differences aren’t welcomed.
