Today I went to pick up an item from someone I didn’t know, and when I got there, was invited in and given a drink. While in the kitchen I noticed a picture magnet on the fridge of a young woman with Down syndrome. So naturally, I asked who she was.
Turns out it was the sister of the person whose home I was in, and because I was on a timeline I needed to get back home and couldn’t settle in for the long chat I’d have wanted to have. But I did tell her I would love to have that longer conversation sometime, and she told me she’d be happy to, telling me that her sister Tikva Juni was “amazing”, “a powerhouse” and a motivational speaker who has traveled across the US to speak. (You better believe I plan to speak to her parents, too!)
I was fortunate to find one of Tikva’s talks online. It is a powerful description of what it feels like to be different, and how others can make the world a more welcoming and inclusive place for everyone. It’s definitely worth your time!
I’m a day late in posting for World Down Syndrome Day, but I loved this video so much that I just had to share it with you!
This was made by fifty mothers of four year olds with Down syndrome in the UK who were on a Facebook Down syndrome group together. Each one signed the song together with their child while sitting in the front seat of their cars, and a couple of dads edited the clips and put it together.
What’s the message?To me it shows the joy and love in having a child with Down syndrome, and I think the hashtag that accompanies it is powerful in its simplicity – #wouldn’tchangeathing.
I know, Down syndrome is supposed to be a bad thing, right? But that just hasn’t been my experience at all. And I love seeing so many other moms expressing the same thing.
We have just under a month before Tehila’s wedding and then twelve days later Michal will be getting married!
A number of their friends have commented that I must be stressed out planning for two weddings so close together. No, I’m not. 🙂
Having said that, I’ve been conscious about creating space inside myself to keep centered. That means recognizing what is necessary and what isn’t. So even though I technically have time to write here, there’s been a longer lag than usual since I’ve been choosing to leave myself some time that isn’t filled with activity in the evenings.
It’s not just planning for the two weddings but also the time of year that it falls out that adds to the intensity of what needs to be done. Of course there’s the week of sheva brachos celebrations nightly following each wedding – I didn’t know until my son got married that it’s the sheva brachos that really wipe you out!
The second wedding will be the night before Purim; we’ll celebrate Purim, and the next day we’ll go right into the Shabbos sheva brachos we’re hosting. When people hear the specifics of the dates they look at me and ask with great intensity, “But HOW are you going to do that???”
I tell myself (and them) I’ll just keep it simple and it will all get done. That works to keep me from getting stressed about it all.
A couple of days ago, someone said to me, “All the work you’ve done on yourself for years is going to come into play right now.” She’s a life coach – can you tell? 🙂 She’s right, though. Years ago I could have done everything that needed to be done, but not without stressing myself and everyone around me. I wouldn’t even have had the goal that I have now, let alone the internal tools to meet that goal – to enjoy this very special season of life and to be emotionally present and relaxed.
So much to do!
——————————
Here’s an update on some of the non-wedding stuff I’m busy with this week:
Right now we’re working on making different school arrangements for ds15. The new program he was in hasn’t actualized in the manner it was originally described. Good people and good intentions, but different than what we signed him up for and not a match for him.
I’m starting the process of registering Rafael for a specific day care for the coming year – this day care has a special inclusion program and there’s a lot of demand for the very limited spots. I met director yesterday, got the registration form, and toured the facility. In a couple of days the evaluations and letters of recommendation I requested last week from different professionals should be ready.
If you’re wondering why I’m putting Rafael in day care since I’m home with the other kids… there are things I need to do because he’s a foster child. I was initially told he needed to start day care this past September when he was nine months but I pushed for him to be able to stay home with me for another year. My goal is to find the best option for him; I have a good feeling about this particular program and think it will be a good match for us.
Speaking of educational plans for next year, I’m also beginning the application process for Yirmi to attend a gan safa (kindergarten with a language focus) in the coming September. Though it seems incredibly early to be thinking about next year, it’s not! This is exactly when all the applications start to go in for the next school year. This week I’ve been working on getting his paperwork together and hope to open a file for him with the municipality this week. I’ve been told that I’ll need to advocate strongly to get him in to a gan safa since they prefer to place children with T21 in lower functioning frameworks rather than with ‘typical’ children with language delays. But there are enough parents who have already done this that it’s not blazing a new trail to get this accommodation.
It might seem ironic or confusing that I’ve just spent all this time and energy to procure an authorization to homeschool him for the current school year and here I go turning around to get him into the school system for next year! It’s actually because of the positive experience dealing with the bureaucracy that I feel ready to deal with this gan process. Prior to this, I was concerned that if Yirmi was in gan safa (which I think he would LOVE!), I would be refused an authorization to homeschool him the following year. Now I’ve decided to take the advocacy for him one year at a time and not worry about what will happen too far down the road.
Oh – and yes, Rafael is still waking up in the middle of the night! Not loving that very much. 2 am looks much better to me when my head is undisturbed on my pillow. 🙂 Actually, 7 am looks much better to me when my head has been undisturbed from my pillow at 2 am. 🙂 So goes life!
Our little Rafael is growing fast and just celebrated his first birthday!
It’s been ten months since he joined our family. Ds11 told me he doesn’t feel like it’s been that long – on one hand, it feels like he’s always been with us and on the other, time has flown by!
Here’s a picture of Yirmi (then 4.5) and Rafael (2 months) in the first hour after he arrived home.
Yirmi holding Rafael on his first day home
Here they are again, ten months later!
Yirmi (5.5) and Rafael (1)
Rafael is super active, cute and generally a very happy little guy. We appreciate that except at 2 am, when we would rather he sleep. 🙂
One year old – hurray!
Grateful for this little member of our family and we look forward to many more birthdays to come!
It’s been so busy with the engagement and wedding preparations, but I wanted to share with you about the meeting we had at the Ministry of Education.
We got to the Ministry early but were refused admittance since the guard said he didn’t have authorization for us to enter that day; he refused to call the people we told him we were meeting with and told us it was our problem to call them ourselves. Since I had never had direct phone contact with any of those who would be on the committee, I was stumped as to how we were supposed to do that.
He also refused to let us sit on the bench on the opposite side of the checkpoint just two steps away. Finally, ds5, exhausted after traveling two hours to get there, lay down on the floor and put his arms under his face to use as a pillow. Then the guard let me sit with him on the bench. 🙂
I decided the only thing we could do was wait for them to let us know we were late and call in an authorization for us to go in; fortunately it wasn’t much longer before I received a call from the secretary asking if I forgot that we were supposed to meet that day. Just as I answered that call, an experienced guard came in who knew how things were supposed to be done and directed us to where we were supposed to go (the new authorization wasn’t waiting there, either!). Not the most auspicious beginning for an important meeting!
We entered the room where three officials were waiting to meet with us together with all of the children we are homeschooling, and I right away noticed their eyes fall on Yirmi (ds5) and linger there. While they were asking us about ourselves and we were responding, Yirmi went over to one of the officials, tapped her on her arm and asked her for paper to draw. The woman was quite warm and friendly to him, and he returned happily with his paper to his seat while we continued the meeting.
Then they started questioning the kids. Ds11 felt the most pressured; as the oldest sibling present, most of the questions were directed to him. Some of what he was asked: if he wants to homeschool, if he wants to go to school, doesn’t he think it would be better if he could do what his friends are doing, does he think he’s on the same level as his friends….
Ds11 responded that he was happy homeschooling, he wasn’t interested in going to school, his friends in school don’t especially like being there and aren’t learning more than he is. As she kept asking and asking, I could see in his eyes that he couldn’t understand why she kept asking similar questions to those he had already answered. It felt like she was working to elicit a negative response from him.
She asked him what he would do if I let him go to school for one week; he answered but at this point, I decided this line of questioning had gone on far enough. I asked rhetorically, “If a child wants chocolate for breakfast every day, should I give it to him? I’m the parent and I’m the one who will decide what is right for my child educationally.”
She disagreed, and told me that an eleven year old is mature enough to make these decisions for himself. Clearly we have a different perspective. 🙂
They asked each child all about what his academic schedule, extracurricular, friends. When one of the officials pulled out a book in Hebrew and pushed it toward ds11 to test his reading, I saw another son’s face blanch. He is reading in English and Hebrew, but due to dyslexia it’s not yet on the level of what is typical for a child his age. He’s doing amazingly, though, and we all see huge progress on that front! (I shared about the approach I’ve taken and the materials we use for him here.) But understandably he didn’t want to be tested out loud by strangers.
I motioned to him reassuringly and told him aloud that he didn’t have to read if he didn’t want to. I felt it was really important for the security of our children that they knew that I would protect their boundaries. Another son also said he preferred not to. The official was about to put away the book and I told him he didn’t ask Yirmi if he wanted to read! Yirmi loves to read books and of course he enthusiastically agreed! He isn’t reading aloud yet and there’s no rush on our parts; our focus is on input, input, input and not on testing the output (ie testing). We’ve recently started Hebrew with him – because he sees his brothers learning with dh and is constantly requesting to learn with him as well – and we’ve been doing flashcards in English for years. But he looked very cute looking into the book studiously and then beaming up at them.
There was extensive questioning about how I would address Yirmi’s educational needs, and didn’t I know how much benefit the child and the parents get from the special education system? My focus is not on expressing negativity about a different system but on what I feel I can offer in the home environment, and that’s what I shared. I added that I don’t feel I have to know everything and am quite comfortable reaching out for support and help when necessary.
When the meeting was finally over – it was probably about an hour long – as soon as we walked out one of the boys right away asked if they’re ever going to have to do that again. They hated it! And I hated that they had to do it – it’s an intimidating process even for adults and too much pressure for a child. Afterward I found out that legally I could have refused to bring them but I thought that it was mandatory since the school year had already started. (That’s what I was told.)
Dh and I felt the meeting went as well as could be hoped for; they were clearly charmed by Yirmi and him being so natural and comfortable lightened the atmosphere for everyone. Overall I felt comfortable with the officials and so did dh.
The next day dh happened to pass one of the officials who was waiting outside a building he passed, and the official told us they had all been very impressed with us. That was hopeful but nonetheless, I didn’t jump to any conclusions about what the outcome would be – particularly about Yirmi. I’ve been told it’s very difficult to receive approval to homeschool a child with special needs, particularly if those needs are immediately apparent (like with Trisomy 21). And this is where my main concern about this outcome lay.
When the email came, I held my breath while I opened it. There was an individual file for each child, and after opening the first one, went to Yirmi’s. It said the same thing as for all of his brothers.
The results? We received authorization to homeschool each of the following children: ds11, ds10, ds8 and ds5.
Yes, we received the first authorization (as far as I know) in the State of Israel to homeschool a child with Trisomy 21!!!
After the meeting, l- r: me, ds5, dh, ds8 (behind), ds11, ds10
I feel like writing a bunch more exclamation marks and jumping up and down and can’t think about this without tearing up with happiness. We were ready to go to court to appeal if we were denied permission, but I kept picturing a peaceful and pleasant outcome of our meeting with the Ministry of Education officials. My mantra I repeated to myself over and over again was, “It can be easy, it can be easy.”
I have to add here that this was a huge personal victory for me. I had so much anxiety about this process for so long, and once he got to age 5, finally put my concerns to the side and did what needed to be done. My thinking had caused me to feel disempowered and threatened, and I consciously worked to release the fear I felt about dealing with these officials. They’re only people. It’s so easy for fears to grow and grow, unless we recognize them and let them go.
What does this mean for now? The approval is for one year, which means it will need to be renewed for the coming school year. Since home visits are part of the homeschool requirements, we will be seeing one of these officials another two times this year when she comes to visit. One positive outcome of having a social worker regularly come into my home as part of the foster care process is that I’ve become much less sensitive about having officials in my home. I don’t agree with having home visits as part of the homeschooling oversight process and think it’s invasive and inappropriate, but I’m not threatened by it.
We’ll take it one year at a time and trust that things will continue to work out for the best!
Someone shared this wonderful story with me of an adoptive father of 12 children, most of whom have Trisomy 21. What in the world compelled this couple to travel across the world and adopt these abandoned children from various countries?
If I had read this story before I had a child with Trisomy 21 I simply couldn’t have related to it at all. I had no part of me that could understand people who did things like that, and could only assume they were on a completely different elevated plane from myself. I mean, why make your life harder?
Rafael, 9 months
I have a really different perspective now that we have our two treasures with T21. Since we brought Rafael home I know that people sometimes put me on that elevated plane that I used to put others on, but from where I’m standing, it looks completely different. It isn’t about picking up a heavy burden and suffering; the reality is so, so much love and blessing and gratitude and faith for all of our beautiful children.
Here’s the story I’m referring to – take a couple of minutes now to go and read it! A Story of Hope and Love
I can’t even try to guess about seemingly negative things like why the author’s sister suffered as she did, but everyone can clearly see that it led to something very beautiful all these years later – his huge family of children with special needs – as a result of her being in his life.
Ds8 told me a few days ago, “I’m glad that Rafael has Down syndrome. Because if he didn’t, he wouldn’t be part of our family.” I’ve never articulated it in that way to our children, but he’s right – for us Down syndrome was the positive ‘hook’ that brought Rafael into our family!
Our social worker called tonight to remind me about a request she had made of me at her last visit. The social worker who did the placement for Rafael with our family is moving on to another position after many years doing this work. We were asked to send a picture and note for the placement social worker; they will be making a book from as many children that she placed as possible.
It was late when I remembered about this but luckily dh hadn’t yet gone to sleep for the night. Rafael was just waking up so even though the timing wasn’t ideal since he was drowsy, we managed to get a few quick pics. Rafael (now 8 months old) is such a good sport – it doesn’t matter how tired he is or if he’s just opening his eyes from a nap – if someone he loves is giving him attention, he’s a happy baby!
Deliciousness!!
I haven’t really written much about our little treasure. I don’t know if you could find many babies who get as much love and attention as this cutie – our kids don’t get tired of telling me how much cuter he’s gotten since the day before- and he returns their love in full with his heartfelt smiles and laughter.
Two blog readers sent me the following clip of a couple who adopted a baby girl with Trisomy 21 and have made it their mission to convince parents considering giving up babies with T21 to keep them. I was in touch with the husband both with Baby M last September and with Rafael seven months ago. With Baby M, he was the direct liason with her birth parents; with Rafael, to access some of his connections to help cut through the legal paperwork that Rafael had been caught in.
The clip is in Hebrew, but for those of you who understand this, it’s very moving. I watched it several times and felt choked up each time, especially when the woman describes going to the hospital for this abandoned baby they had heard about who was going to be having major surgery. With no legal standing, nothing but a desire to help this baby who had no one, she told the staff she was the mother, and then as soon as she held the baby told her, “Tamar, Tamar, Mommy is here, and and Mommy promises that she’s never going to leave you. ”
The reality remains that too many babies with Down syndrome are given up every year. Not because the parents aren’t capable of raising them but because of advice or suggestions they are given, the fears they have, the stigmas they may feel…. Accurate information goes a long way in encouraging parents and dispelling the fears that lead to giving babies up.
After Yirmi was born five years ago, I anticipated that I would go to hospitals and speak to parents who had gotten the diagnosis of T21, particularly those who were considering giving up their babies. Despite my willingness and even signing up to be on the roster of parents called in this situation, I was never contacted. Though I’ve spoken to parents of infants and children with T21 and supported them in different ways, reaching out to parents in the hospital obviously wasn’t meant to be my focus. It’s touching to see the passion and commitment of this couple for whom this is their mission.
>>From your vantage point of five years into this, I’d love to hear what you feel are the best “tools” to help children with apraxia. I know you used Gemiini and flash cards. Beyond the obvious emotional support we offer to our children, I’m looking for practical advice. Thank you!<<
I’m happy to share what has been helpful for us!
First of all, even if your child isn’t speaking much, assume he understands. If he doesn’t understand yet, he’ll understand more as you give him lots of verbal input, filling his day with words and concepts. Building his receptive language reservoir is a precursor to his ability to express himself. Eventually the expressive ability will come.
Keep in mind that communication of any sort is the building block upon which speech is built. Don’t think because it’s not speech that it’s irrelevant to the question of how to deal with apraxia – communication skills are vital.
BUILDING RECEPTIVE LANGUAGE:
– Flashcards – The most obviously visual way to build receptive language is by using flashcards of words and pictures. (At some point I wrote about using the Brillkids program, which is bascially online flashcards and words – it’s a great program and I only stopped using it when I got a new computer and didn’t reload the program onto it.) Yirmi now repeats each word after me when we do flashcards so it’s become an expressive speech support at this point as well.
We also read lots of books.
– Actively engage your child in your world. Talk to him about what you see, give him space to have a turn talking, even when he doesn’t yet talk. Pay attention to his cues and respond to them. When your child sees that his attempts at communication are effective, he will continue to try to communicate. Like everything else, the more he practices communicating, the better he will get.
– Encourage verbal expression through play and constant interactions. I got the book Play to Talk, by Dr. James McDonald when Yirmi was an infant. I loved that Dr. McDonald (whose work spans decades and is an amazing advocate for late talking kids and their families) says that parents are the answer to a late talking child’s challenges, and that the home is the best place to learn and practice communication. It’s a big shift away from the prevalent attitude that paid professionals are the answer. His website is a great resource, as are his books. On his webpage about children with Down syndrome (and this is relevant to any late talker), he writes:
“After all these years, I am confident that parents can help children with Down syndrome give and get a great deal in life if they are willing to do a few simple but often difficult things:
play in the child’s world habitually
make children enjoyable play partners before they are obedient students
don’t worry about school language before children have a good vocabulary for daily natural communication
be very careful not to expect too little (by doing too much for children) or to expect too much (by setting up impossible jobs)
pay more attention to positive little steps than to things you may think are mistakes
act and communicate in ways children can do (matching)
interact back and forth throughout the day
be sure children are giving to you as much as you are giving to them”
I learned from Dr. McDonald to go into Yirmi’s world, not just to try to pull him into mine. That includes imitating the sounds he makes rather than only expecting him to imitate the words that I say. Also, I learned to simplify my sentences to match his level of expression to encourage him to respond; it actively pulled him into verbal interactions with us.
– Mediate the world for your child – Mediation is the heart of the methodology taught at the world famous Feuerstein Institute in Jerusalem. It was there that one of their facilitators told me that most people have to be trained to learn this, but that a small percentage of the population are natural mediators – and she informed me I’m one of them! For that reason it’s really hard for me to explain mediation, because it seems like pointing out the obvious to describe it.
Basically, rather than assume he will make the connections on his own, mediation is when you consciously facilitate your child’s exposure to the world around him.
Here’s a nice video that might give a bit more insight into mediation and the Feuerstein approach: Looking Up on Down Feuerstein video
Sign language – I taught Yirmi sign language when he was a young toddler, knowing that language was likely to be a challenge. This has been a hugely important tool for him, since he’s been able to express himself before he had the verbal ability to do so. As his speech has improved and become more clear, he’s dropped the signing. If someone doesn’t understand what he says verbally, he’ll repeat himself by saying the word and signing at the same time. Signing Times videos were a great resource. I also used Signing Savvy to look up words that I wanted to teach him – this is a site with lots of short videos demonstrating hundreds of signs. Signing Savvy was a resource for me to learn the signs, not a video to show my son.
– Gemiini Educational System– I’ve been using Gemiini regularly (I aim for a daily basis) for Yirmi since he was 2.5; we were one of the early families using it for a child with Trisomy 21. At that point it was primarily being marketed for kids with autism. It’s since become a well-known resource in the T21 world.
Gemiini is a web based program that uses a video modeling approach and integrates a number of speech therapy techniques. There are lots of amazing testimonials, including one woman who called me after a blog reader read about us using Gemiini and put her in touch with me. She had a 9 year old daughter with T21 who was completely nonverbal – withing two weeks of starting Gemiini, she began speaking!
Yirmi wasn’t one of the kids who had an amazing jump in speech right away. Actually, it took about a year and a half until we started to get speech – we seemed to be on the very slow track. I’ve already told you my belief that it’s important to keep my eye on the end goal and not get discouraged when the progress in front of me seems slow or doesn’t seem to be happening at all. I never asked about the severity of his apraxia but I can assume it was significant, based on how long it took us to see changes. But we knew changes were happening.
The first thing we noticed is that he began to move his mouth as he watched, trying to imitate the shape of the mouth he was seeing on the screen. As a 2.5 year old, he had never done that. He had only a few vowel sounds that he could make when he started, but eventually he started imitating other sounds.
To sum up a response by Laura Kashbar, creator of Gemiini to the question of how do you know if Gemiini is having an effect: “1) Receptive language improves – is your child understanding more? 2) Gemiini is switching the focus from a daydream state/passive network into active network; when waking up from a daydream there are some things that will happen: a) Eye contact, b) child seems more with it, not in his own world so much, c) will pay attention to sounds when in the past he ignored it, d) get feeling from him that he’s more present. 3) Will see new sounds, new babbling, be more aware of mouth. 4) Fine motor skills increase – great indicators of neurological changes. 5) Gross motor improves dramatically. All of these come together over time to get student going where he needs to go. There’s a global improvement that happens, it doesn’t start with expressive language – it starts with all these other things.”
PHYSICAL DEVELOPMENT:
There’s a very significant connection between speech development and physical stimulation. Everything in the body is connected and the better the body works, the better the mind works. Exercise creates neurogenesis. Of particular importance are activities that integrate cross patterning movement (the hand and feet working in alternate motions).
– Walking/running – This is the ideal cross patterning activity. A saying coined by the Institutes for the Achievement of Human Potential is “Two miles of walking equals talking.” (For a young child, the focus would be on crawling and creeping, which works on lower motor levels of the brain. Don’t rush this stage in order to get to walking – crawling is super important developmentally.)
I’ve been trying to encourage walking for Yirmi when we need to go somewhere, even though I can get where I need to go much, much more quickly if I stick him in a stroller or carry him. This summer he’s been attending day camp (his first time ever!!) and we’ve been starting our day by walking to the bus stop and then from the bus stop to the camp. There are a lot of distractions on the way and this short walk from the bus to camp takes a long time. I try to leave extra time in my schedule whenever I take Yirmi anywhere because I want to encourage him to walk and at the same time, I don’t want to be impatient or feel pressured to get somewhere by a certain time.
He isn’t yet consistently walking very far but stamina is built little by little. Like everything else, we’ll continue to support him and with time his ability will increase.
– Trampoline-In a Facebook group for parents of children with T21, a parent shared that her speech therapist recommended jumping on a trampoline to benefit her son’s speech. That suggestion resonated with me as it matches my approach to therapy and development – to do it in a way that is fun and a natural part of your daily life. He loves the trampoline, and so does every else in the family! (There are lots of great health benefits to using a trampoline as well, like stimulating the lymph system,building immunity and increasing muscle strength – more benefits here.)
Jumping on the trampoline – fun and great for speech!
Yirmi quickly learned to do tricks on the trampoline. This physical acuity has extended to when he’s on the ground – he started regularly jumping with both feet within a week of using the trampoline, and shows off his somersaults whenever we have guests!
– Swimming – we put Yirmi in swimming lessons a couple of months ago. He was really scared to do more than sit on the second stair at the public pool and I realized it would take many months to build even basic comfort in the pool at that short weekly lesson. So soon after that I bought an above ground pool to give him a chance to practice daily and build his comfort in the water. He and our other boys now spend hours every day in the pool and his comfort in the water dramatically increased in a very short time.
He imitates what he sees his brothers doing, and has learned to keep his face in the water. He can also stay underwater for up to six seconds, simultaneously using the arm motions like those used when doing the breaststroke.
To continue to support Yirmi’s physical development, I’m planning to build (or more accurately, for my kids to build :)) a pergola in our yard where we can hang swings. I’m hoping we can integrate monkey bars into the frame, since brachiation is a wonderful therapeutic activity (and of course, fun!).
I’ve been wanting to do this since the end of last summer but ds18 has been at school and not available for a long enough period of time to spearhead this project. He graduated high school three weeks ago and the next day began his job as head counselor for a local camp – now that he’s finished that job, he said he’ll make time to start this project in the next week or two.
Nutrition- we don’t give Yirmi gluten or dairy, both of which are difficult to digest and clog the digestive system. The digestive system/gut fuction is intrinsically linked to brain function. A mind that is clogged up doesn’t work as well. He continues to eat a fairly clean diet – minimal processed foods, mostly proteins, vegetables, fruits, and whole grains/legumes.
Reflex integration – I am very interested in doing reflex integration work with Yirmi, and after a lot of research on the topic chose a specific cold laser protocol. However, when I attempted to purchase the QRI cold laser this past winter, due to a technical problem with order processing we had to drop the idea for the time being. If at some point someone will be able to bring it for us from the US, we’ll try purchasing it again! Parents have had great results from the laser but obviously I don’t have a personal testimonial on that.
How is Yirmi’s speech at this point, as a newly turned five year old? He began saying words when he was four. He’s now speaking sentences of up to seven words (though it’s still hard for non-family members to understand him), mostly words of one to two syllables. His speech has accelerated very quickly and seemingly out of the blue, but it hasn’t been out of nowhere – we’ve been supporting his speech in these various ways for years.
Can you believe that Yirmi just recently turned 5?
Until Yirmi was born and we received the birth diagnosis of Trisomy 21, I knew very little about what that entailed. I had the stereotypical perceptions of people with Down syndrome based on very limited personal connection. When Yirmi was born, my eyes were opened to a much broader, more appreciative and more accurate way of seeing people with differences.
Though people tend to assign a lot of significance to the differences (skin color, religion, political affiliation, income level, abilities), we’re all more alike than different, and we all benefit when we place more emphasis on what makes us similar. More than anything – every one of us wants to be valued for who we are. And this has been my focus in raising Yirmi.
Yirmi and his big sister
We had a 3 hour appointment with a developmental pediatrician very recently (the first since leaving Karmiel 2.5 years ago), who was blown away by Yirmi. She kept exclaiming that she’s never seen a 5 year old with T21 like him in her decades of working in the field.
She said that he is bright, communicative, emotionally present, focused, takes initiative, and has the confidence to try new things in a new environment. She told me that these aren’t qualities that she’s seen in a child with T21 of this age, particularly combined with a language delay like his (‘Usually these kids are shut down.’).
A week later I took Rafael for his intake appointment, and again she remarked on how taken she was with Yirmi. “He’s so emotionally intact.”
Why is it the norm for a child with T21 to not be emotionally intact? To not be confident or communicative in new situations? To not trust their abilities? To not be willing to try new things? To not keep trying to be understood?
Could it be in part because of how those with whom they interact regularly treat them? Are the frameworks in which they spend most of their time focused on what they can’t do instead of what they can? Are they being defined by limitation instead of possibility?
Playing on the trampoline with Daddy!
People have told me Yirmi doesn’t act like he has Down syndrome, or that he must have it ‘just a little bit’. What does that even mean??? What limited perceptions are those comments based on?? You can’t have T21 just a little bit – either you’ve got it or you don’t. He definitely has garden variety Down syndrome, present in every cell of his body.
Though professionals have told me that Yirmi is doing very well, it’s not because he’s inherently different or better than any other child with T21. I’m not holding him up as an ideal or trying to imply he’s the most amazing child with T21 ever. Comparisons of performance and impressing anyone else isn’t my goal – he is who he is and and regardless of percentages or testing or anything else, he is enough as he is right now.
Having said that, in line with the 80/20 principle, I believe 80% of children with T21 can be doing just as well if given similar support. I don’t think he should be as unusual as the professionals say he is. Actually, I think a lot of kids with T21 are already doing great but probably most of them are also being treated like outliers.
I passionately believe that every child deserves to be treated with respect. With respect for where he is right now, with support for whatever limitation he has at this time, and with belief in who he will be in the future.
It’s not hard to do this. It’s really not. It may be counter cultural, but it’s not hard. People think I must ‘work so much’ with Yirmi. I don’t see what I do as work; he’s not my project to fix. What I do that I think is of the most value is to parent him the same as all of my other children – I look at what his needs are and try to find integrated ways to support those needs in our daily lives.
One example of how we integrate support in a fun way – trampolining!
In my opinion, the most challenging thing is to recognize the aspects of your thinking about your child that are limiting, and then to change those thoughts. Your actions will follow your thoughts, and your child responds to your thoughts about him. If you think your child is capable, you’ll have different expectations and take different action than if you think your child has significant limitations.
To consciously shift from a paradigm of limitation to possibilitymeans seeing the potential in your child and acting in alignment with what you trust he will become, long before you see that in him.
If he can’t yet talk or can’t yet walk, it means believing that if you keep giving good quality input, that you can trust the timing of the output (ie performance) even when it’s taking a lot longer than you would like. At age 4, Yirmi still hardly said any words. Now a year later, we’re seeing an explosion of speech. And I trust that we’ll continue to see significant gains with time.
Shifting that paradigm means reflecting your child’s positive inner value to him even at times that he’s immature, irresponsible, unreliable, hypersensitive, or mean. It means trusting your child’s potential and holding on to that vision even when external circumstances might give you reason to feel discouraged.
And that’s something that benefits every child, regardless of diagnosis!
Can you believe it’s only been six weeks since R joined our family?!? He so quickly became an integral part of the family that my younger boys told me they can hardly remember him not being part of our lives!
R – 10 weeks old (photography by Chani Ceitlin)
During this period, we’ve constantly been asked (literally in almost every conversation): “Why did you choose foster care rather than adoption?”
The answer is simple, not based on idealism or preferences but need. Here in Israel, babies with Trisomy 21 who are given up aren’t usually available for adoption – they go into the long term foster care system. And so we went where the babies who needed families were.
I have been very pained seeing babies with T21 being given up because of their diagnosis. According to the placement social worker, they are the only children voluntarily given up as newborns – not those with much more complicated medical diagnoses or those with a more limited long term prognosis.
R – 10 weeks old
It was a combination of our strong family values and the desire to be part of the solution rather than complaining about the situation that prompted us to begin the qualification process to be foster parents specifically for an infant with T21.
“Practically speaking, what does it mean to foster?”
Our intention is to raise R as a member of our family in every way and unless his foster care status changes, he will be with us until he is an adult (age 21). While in many ways this is very similar to an open adoption- regardless of how we feel or what our intentions are, R is not legally our child.
That means that we will have social workers coming into our home at least monthly to check on him for the next two decades. It means he has a different last name than my other children. It means visits from the birth parents. It means significant decisions for him have to made in conjunction with his birth parents and social workers, and my personal preferences regarding his care can be overridden. (It also means that I needed signed permission before posting any of these pictures!)
Most significantly, if his birth parents were to change their minds they could at any time take him back. Though it’s unusual for children who were given up because of their special needs to later be taken back, it does happen.
I can’t lightly skip over this possibility because it has created a pervasive sense of unease within me that I didn’t anticipate. I’ve shared this feeling with our social worker, and her answer is to sympathize but say, “This is the reality of foster care,” and to remind me that it’s the birth parents’ right to take him back whenever they want.
“Will R be able to be adopted at some point?”
When we were shown R’s file, we were asked if we were willing adopt him if his status changed. We immediately said ‘yes’. However, based on what was explained to us about why and when children are transferred to the adoption track, it seems to me the likelihood of him being placed for adoption is extremely low.
We didn’t go into fostering without a great deal of thought and discussion as a family. We knew there would be challenges and we decided that letting fear of the unknown keep us from offering our home to a child in need wasn’t the right choice.
And though it would be understandable to hold back a tiny piece of one’s heart for self-protection, we’re not letting fear keep us from unreservedly loving our newest addition.
Though the external circumstances aren’t perfectly smooth, we’re so happy and grateful he’s part of our family!
Avivah
**Thank you to the wonderfully talented, patient and sensitive Chani Ceitlin for her photography!**
