Feeling confused…why is Yirmiyahu doing so well?

Yirmiyahu, age 2

Yirmiyahu, age 2

I’m back from a long day in Jerusalem!

Our visit to the Feuerstein Institute went well.  The eight staff members I met were all professional, warm and caring.  Yirmiyahu was part of a group of five children; I knew he would be the youngest but didn’t realize there would be the big gap there was.  This is the youngest group of children at the Institute right now.  He’s 26 months, and the other four kids were all 3.5, almost 4.  So he’s really, really much younger.

Fortunately this didn’t pose an issue for Yirmiyahu!  Far from it.  He did great.  Even though he woke up at 5:30 am and was tired from traveling and a disrupted sleep schedule, was in an unfamiliar place with unfamiliar people – ie far from his sparkling best – he participated fully in each session.

There’s no question that there’s a lot to gain from being at a place like the Feuerstein Institue, but I decided not to pursue further participation at this point for a number of reasons.  A big part of that decision is that even though Yirmiyahu is so much younger than the other children in his group, he’s more advanced than all of them.  Initially when I had questioned putting him in a group of kids who were older (not realizing how much older they would be!), they said it would advance him to be around older kids.  But I don’t believe that will be true in his case.

There would definitely be benefits but as of now, the other considerations outweigh them.

Since Yirmiyahu was very, very young I have felt he wouldn’t benefit from being in a special education setting, and that conviction was strongly reinforced yesterday.  I don’t look at him as a child with special  needs and don’t treat him like a child who is limited – because he’s not.  Despite my belief that it’s best for him to be with typical kids, I agreed to put him in this group of children with developmental delays because of the incredible reputation of the Feuerstein Institute.  But I felt increasingly uneasy as he sat around the table with the other children.  It felt like a mismatch for who he is and what his needs are.

I paid close attention to everything each therapist did in every group and how they said it because I wanted to soak in as much as I could to hopefully apply their strategies at home – and I was continually struck by how similar it is to how I speak to Yirmi.  That was a big eye opener to me and I began to understand what the evaluator meant when she told me at his six month evaluation that I was intuitively doing the things with him that they usually have to teach parents.  I spoke to a mother during a break and asked her about the experience at the Institute.  One of the things she said is that there are some people who intuitively do these things with their kids, it’s natural to them and they don’t see what the big deal is.  It seems I’m one of those parents.

At the end of the day, I was speaking to a different mother whose daughter was in Yirmiyahu’s group and asked her something specific about her daughter.  She told me, “You’re not going to have an issue because your son understands everything!”  I asked her how she could possibly have noticed that, and she said it was obvious that of all the kids he was the one who understood in every situation right away what he was being asked to do and did it.

Also at the end of the day, the occupational therapist exclaimed, “Your son is amazing!”  She asked if his therapists locally are going crazy by how well he’s doing.  I asked her why she said that – I don’t know any kids with T21 in person who are his age to gauge his progress and anyway, I try to avoid comparing my kids to anyone else so I don’t have the perspective to see what she’s seeing.

She responded that she sees many, many kids with T21 and he’s unusually advanced.   She seemed surprised that this wasn’t blatantly obvious to me.  I mentioned that the way the therapists spoke in the sessions was similar to how I speak with Yirmiyahu, and she said it’s clear that I’ve been mediating (to use a Feuerstein term that means to actively help your child process and make sense of the world) since he was born.  I often hear comments that he doesn’t look or act like he has T21 which I mostly disregard, but the feedback from staff members at this institution is based on many years of experience so that counts for more than the casual comments of someone in the park.

I’m frustrated with my lack of clarity about all of this.  When people told me over the years that my kids were so well-behaved or kind or responsible, I thanked them and knew what efforts I had made that led to that result (along with a huge dose of heavenly assistance – our efforts are never soley responsible for our success).  I could tell you how to do it, too.

But in this situation, I don’t have that same feeling of confidence, of knowing that I did this and it led to that result.  I know what I’ve done and could give you a list if you asked me but I couldn’t tell another parent with the same confidence I can when it comes to parenting issues, do this and you’ll get this result.  I keep wondering, could it really be this simple to successfully raise a child with T21?  It can’t be, right?

I don’t want to downplay what I do with Yirmiyahu.  But I see what I do with him as mostly being a responsive mother just like many mothers out there and have a hard time imagining that this is unusual.  I don’t sit around doing therapy.  I don’t sit around practicing speech.  I don’t sit on the floor playing educational games every day and I don’t read him books every day.

Staying close to his siblings during waking and sleeping time :)

Staying close to his siblings during waking and sleeping time :)

Mostly I just love him.  I talk to him like I talk to all of my kids, I know he’s smart and capable and I expect of him what I expect of all my kids.  And he gets lots of love and stimulation from all of his siblings.

I remember predicting to myself in the early days (when he was less than a week old and in the NICU) that when he got older I would hear how lucky I was and that he must have been born high functioning.  I was prepared to hear it was luck and I didn’t anticipate the professionals being so verbal about it being a direct result of my efforts.  It’s nice but I’m uncomfortable with it.

Yirmiyahu, 2 years old

Yirmiyahu, 2 years old

I feel a lot of humility and gratitude for how well Yirmiyahu has done.  Even though there are things I’ve done and I know they matter, it seems like it should take a lot more than the efforts I made to see the results that surprise people so much.  (I don’t see anything surprising, he’s doing well but I don’t think he’s a superstar.)

Is it possible that because I loved him as he was from the time he was born, actively mediated the world for him, believed in his abilities and kept my expectations high, that he could be doing so well?

Food for thought.  I’d love to hear your thoughts and experience!

Avivah

29 thoughts on “Feeling confused…why is Yirmiyahu doing so well?

  1. I know you were asking the question, “Why is my son doing so well?” in a sincere way. But frankly it sounds like a stereotypical Jewish angst/Jewish mother joke. If the answer is too good to be true, it must not be true. OY! He is doing so well because you “get” it. He is doing so well because you invest the time. He is doing so well because he has your family’s support and love. He is doing so well because you have balance. He is doing so well because there is trust. He is doing so well because you daven for and receive siyata d’shamaya. Need I go on? Nothing wrong with getting validation now and then . . . whether from a reader or an expert at the Institute!

    1. Galia, you have me laughing! Oy, me sounding like a stereotypical Jewish mother. Oy. :) But you’re right, I am thinking this – they must be missing something, it can’t be he’s really doing so well, etc, etc. Thank you for these pointed words of clarity.

  2. What a wonderful reception you got . In addition to all the things you mentioned, Yirmiyahu has an entire team of therapists on a daily basis, aka his siblings. While you might not read to him all day or even every day, I bet someone does. Not discounting HaShem’s bracha in the slightest or the diligent research you’ve done and the nutritional and other things you’ve incorporated into his life, you have also set up your own therapy institute in your house, composed of a loving and willing team.

    1. Susan, I’m sure you’re right about the benefit of constant playmates and role modeling. No one officially does therapy with him, but I often think when he’s climbing up or down the slide at the park or toddling around amidst a group of older boys playing tag that it’s worth more than therapy to have these experiences.

    2. I agree with Susan. Your family environment has a LOT to do with how well Yirmiyahu is doing. And you brought your family to this point – yes, with a lot of heavenly assistance, but no discounts on heart-ache either, right?

      I think that the reason it is hard for you to put your finger on what you are doing specifically that has led to these results is because there isn’t anything clear and specific and these kind of results really take a lot of various factors. Not even just your love. It starts with how you and your husband interact with one another as parent partners for all of your children, alone and in front of them, it continues with the way you approach the problems each of your children – including Yirmiyahu – presents to you at various stages, it has to do with the way you approach your life, daily routines, how you deal with trying to live your values, how you deal with obstacles, failures and frustrations. Clearly, this is really not something anyone can ever put their finger on in their lives – it is too general, too all permeating.

      I keep hearing your internal assessment that keeping Yirmiyahu in a mixed setting that isn’t special ed is the best thing for him. Well, you did that. And it seems you have been right to do so. You are all reaping the benefits of your being able to hear that inner voice in the first place, and to follow it through circumstances that have often been challenging.

      What can I say, Avivah – just keep listening…

    1. Well, of course I believe that but I also believe that at least 80% of kids with T21 can accomplish what Yirmiyahu has. Being cognitively aware and active shouldn’t be such a high bar, you know? So there’s the human component that makes a big difference and I’d love to see lots more kids getting the support they need so that our situation isn’t unusual.

  3. This may sound uneducated. Okay. It is. But I don’t think people have yet developed a full understanding if what T21 is. We know it’s different. People with it aren’t quite the same as everyone else. So it hasn’t been handled properly over the years. Maybe being surrounded by a large family who loves him, successfully communicates with him constantly, tends to his health challenges, respects him… Maybe that , together with davening, is enough to handle the lion’s share of the developmental challenges? How many children in his position really have that luxury?
    Just a thought.
    IYH he should continue to learn, grow , thrive, and share those sweet smiles!

    1. YK, you’re so sweet. Thanks for being so supportive!

      Honestly I don’t feel what I do with any of my kids is amazing, so this situation is bringing up more of those same feelings, I guess. I do the best I can but always see room for improvement. I didn’t think about this until I began responding to your comment but I’m realizing there’s some pesky perfectionist thinking slipping in.

  4. I am a therapist and have been for many years. What I’ve come to realize is that what is most important when working with a child is not the specific skills being worked on, nor the methodology, but the relationship between therapist and child. In college and training, there is talk of “establishing rapport” with a child, but it is so much more than just that. When you like and enjoy spending time with a child, get to really know and come to love him/her, that is when the magic happens, and so many missing skills fall into place. The relationship is the priority; the skills are really secondary. Using this natural approach- I use the word approach lightly here, as it is not a “contrived” approach, but a natural process- I have found that children have often made outstanding, unexpected progress (considering the gaps in skills mastered), frequently leading to services being terminated early since they were no longer needed.
    It need not be a specially trained therapist; the same would hold true for any supportive adult, older child, or peer; and of course it is even stronger when it is a family member, as the attachment already exists (as does natural love for the child) and does not need to be formed from scratch; in fact, it is the ideal relationship for “playing catch-up” and skill acquisition.
    (This is not to negate the work that that therapists do; in many situations this can be the best option for a child- and it does help, obviously, for the supportive adult to know/understand and/or have the ability to figure out what skills to work on and how to do so; however, relationship quality is still the determinant factor.)

    1. K, welcome and thank you for joining the conversation! I really appreciate your input. Your feedback is so valuable to me.

      You’re touching on a topic very close to my heart, the importance of connection between a child and the person who is educating him. People will often do things for those they love that they wouldn’t be likely to do for those with whom they don’t have a relationship.

  5. I will echo what everyone else has said…you are an amazing Mom! And a far second from that is the benefit he gets from being around his siblings all day….an amazing benefit of homeschooling!! Keep up the amazing work you do…with your own family…and inspiring all the rest of us :) Kol HaKavod!

    1. R, I agree about the benefits of homeschooling – the younger kids get the passive benefits of hearing things that aren’t intended to them, as well as getting to model their older and more mature siblings!

  6. B”H so wonderful that he is doing so well.
    And yes, I also believe being surrounded by many different people (as you have in a big family anyway) is a true benefit for EVERY person.
    And I am convinced that T21 kids can achieve a lot, if there are people who care.
    And also not every T21 is like the other, they are differently severe.
    Did you hear about Pablo Pineda? “He was the first student with Down syndrome in Europe to obtain a university degree” (http://en.wikipedia.org/wiki/Pablo_Pineda).
    In a film about education he talked about his view on the two different concepts of education: fear or love… I am sure you educate with siyata d’shmaya and deep love and that’s why the best will come out of it.

    All the best, Shabbat Shalom!

    Rose

    1. Thank you for sharing your thoughts, Rose.

      People with T21 aren’t that much different than us. There is a spectrum of ability and personality just like with everyone else! I think they benefit from the same things that everyone benefits, but it’s more critical for them because they’re less able to compensate for the lack of those things in their lives.

  7. Hey Avivah!
    I am very happy as to how well yirmi is doing, it sounds like he is really making developmental progress- that’s amazing!
    I think this topic is a bit of a dangerous territory, however. Just because one boy with T21 is more “high functioning” than another does not mean the high functioning boy has a better mother. It means that Hashem made one more high functioning. I also think it is VERY dangerous to assume that a child that IS more high functioning is doing “better”….
    Who is to say, that the simple boy bagging my groceries but cannot speak clearly, is any “better” than the woman with T21 who is able to converse and greet people at the same grocery? It also does not mean that the boys mother isn’t great and the girls mother is. It is hard to attribute therapy, institutes, dogmas etc. to a persons progress, since people are complex. Alhough I am certain all of your love definitely helps him do great!

    Just my thoughts- have a wonderful shabbos! Thinking of you xoxo :)

    1. Jessi, I often feel like writing anything about T21 is dangerous territory! You can’t say you’ve done anything right because people will tell you you’re arrogant and you just happened to be lucky; you can’t talk about specific steps you take to help your child succeed because people will accuse you of not accepting him as he is, you can’t talk about your child’s gains because it will make someone else feel bad…

      I have a lot to share on the topic of disability, and I don’t write most of it because of the above. I agree with you that higher performance of any child, with or without a disability, doesn’t make the person more valuable nor does it mean that the parent was better.

      Sometimes higher performance (based on the person’s starting point, not compared to anyone else) does mean that the parent has been more effective, and in those cases, there’s something to learn from those parents if someone would like to see similar benefits because success leaves clues. Sometimes parents are oblivious and the kid turns out okay, but that’s the exception, not the rule. There are lots of very kind and loving parents who aren’t effective, but not being effective doesn’t mean they aren’t well-intended or that they don’t want the best for their child.

      When I took Yirmiyahu to the Feuerstein Institute when he was six months, they told me they rarely see an infant at his level. I told them maybe we were lucky that he happened to be born at the top of the curve. Based on over fifty years of experience they told me they don’t believe that most of the success of people with T21 is based on being born ‘high functioning’ but on the support they are given as they grow up. So in this post, I’m sharing outside feedback. As I said, I have a lot humility and gratitude for how well he’s doing and I’m very hesitant to claim credit for it.

  8. I’m so glad to hear that Yirmiyahu is doing so well!

    I know a few large frum families that have a child with DS.
    Some of the children/teens are high functioning and some are low functioning.
    I think the level of cognitive impairment can vary greatly and I do think you’re lucky! Some children with DS have autism or other psychiatric conditions as well and that presents additional challenges. Some of the children have hearing and/or vision loss and/or frequent heart surgeries – and that takes a toll too.
    Having a loving family and a lot of stimulation helps too, but I think a lot of it is genetic.

    Good Shabbos!

    1. I also feel lucky, Chavi – Hashem has blessed us with ten incredible children!

      On some things we beat the odds with DS, on some things we didn’t. This is true of every single parent, that in some areas their child will ‘score high’ and on some, not so high. For example, about half of kids with T21 have heart problems, and Yirmi’s heart issue was minor and resolved on its own. About 10% of kids with DS have autism, BH he’s not one of them (too controversial to write about this or psych conditions but there were conscious steps we took to minimize his risk). About 10% of infants with T21 have transient leukemia, he was one of the minority and is at a higher risk for childhood leukemia that we keep a constant eye on. He was also born with a kidney/bladder problem that isn’t typical of children with T21 that necessitates him being on ongoing antibiotics and he may need surgery to correct this – so this was also our luck, against the odds. He’s one of 30% of kids with T21 who have apraxia; 70% of kids will have a much easier time learning to speak than he will. He has growth issues that I’m currently doing testing for; I wonder if parents whose kids have a normal growth curve know how lucky they are.

      So while I feel very lucky, there are things we have to deal with just like everyone else has what they have to deal with. I do the best I can to gather information related to various challenges and try to get him the help he needs.
      We did what we could to encourage his cognition, his health, his physical activity – and success is up to Hashem.

      1. What’s “too controversial”about early intervention for autism? It is widely agreed on that autism is a range and that regardless of where an individual falls in that range, early intervention can make a huge difference.

        More and more studies now are locating autism markers in kids as young as 2-3 months and the hope is that by finding these kids early and interceding appropriately we can “preempt” autism. My mother is heavily involved in this research so I’ve been learning a lot about it!

        That being said, I also have some personal experience with this. My daughter was born at 32 weeks with a host of complications and a lengthy NICU stay. At four months we had her evaluated because she was showing very strong autistic tendencies – refusal to look at faces, quickly being overstimulated when people tried to interact with her, no smiling or cooing, not being comforted even by her parents, etc. We were terrified and it really seemed like she would be ” low-functioning” autistic.

        After speaking to a number of people we proceeded with a nearly 24/7 course of constantly pushing her out of her comfort zone to interact (I’m guessing similar things to what you had done with Yirmy) and when she was reevaluated at 6 and then 12 months nobody could believe it was the same child. She’s now an active, loving 2 year old with more social skills than either her Ema or Aba. :)

        It’s incredible what you can do by interceding and really devoting tons of time and energy into your children. Yes, I’ve witnessed it firsthand, but I think I mostly started this comment to say that it really is not a controversial topic in the scientific world. Best to you and Yirmy!

  9. Avivah, hi!
    I also get these similar remarks from therapists, about Etel! I think the short answer is that Y is doing great because of a beautiful, synchronous, combination of great things in his life.

    I firmly believe that one way or another it ALL goes back to you as the mama and what a wonderful job you’re doing. Each thing…it’s all very important: the constant stimulation of older siblings, the way we interact with our kids even in infancy (ala Dr. James Macdonald’s Communicating Partners, and also the HANEN people out of Australia have the exact same principles in their for-therapist and for-parent programs), Flash cards & infant stimulation, early neurodevelopmental principles – ALL that is so very important…..BUT

    ….BUT the number one thing you are doing to help Y is paying careful attention to diet, and the probiotics and other DS and general health supplements starting EARLY. Face it, his hardware is just running better and more smoothly.

    I was blown away by your observations at F.Institute. I have thought about Feuerstein for YEARS as our goal, our mecca, the perfect school for Etel….someday, when we make Aliyah…..but, I admit, had never thought it through all the way. First of all, like you, I have ZERO kids with DS in our vicinity to compare Etel with, so I tend not to fully comprehend what a drag being in a special needs environment could be for a higher functioning kid. I do know that when we’re around autistic or nonverbal kids I am not at all comfortable lumping her in with them. Like Y, she does so very well in a typical classroom. Like Y she understands right away to look around and figure out what’s expected from her, can understand instructions (in 2 languages, English and Chinese), is eager to please, socially attuned and emotionally communicative. Yes she has a speech delay but is light years ahead of most kids with DS (I am told). She has a very large vocabulary and good verbal recall. And a pretty high frequency of initiated ideas and words. Anyway. Just wanted to say you are on the right track, mama!!! KEEP IT UP!!!

    1. Liora, I’m so glad you commented! I know of a number of parents via online lists doing what we’re doing are getting the results we’re getting, so this is where my mental bar is set. We do a lot – well, just about everything – you mentioned and I agree it makes for a strong foundation.

      When I was at the Institute, I saw Yirmi looking at the other kids, trying to make eye contact with them but none of them did, and I could almost hear him thinking, “Why are these kids acting like this and what am I doing here?” He’s used to interacting with typical children (and adults) so it was notably different for him.

      I love hearing about Etel, keep up the great work!

  10. I am really happy that yirmiyahu did so well. may hashem give you and your whole family the right tools and koach to continue on this path. shana tova u’metuka to you and your family.

  11. I have been thinking of your question since you posted it. I also have a disability, I have MS, with my own ups and downs, but doing MUCH better than anyone would have expected and I have also wondered why I was doing better than other people with my type of MS were doing. I have come to realize it isn’t a simplistic answer.

    Based on what you have written in your blog about your attitude, your family and your son I can make the following observations:

    1) you are treating ALL of Yirmiyahu’s medical issues. Too often those of us with a complex medical condition only the major issues are treated and the little ones are ignored. But ignoring what are considered the little ones can still have a major negative impact. The bottom line is that you need to pay attention to everything because all the issues impact the body at the end of the day.

    2) Because you have homeschooled you are aware there are resources out there and you are aware of how to integrate them into the flow of the day. I gather you have introduced Yirmiyahu to some learning programs that have helped him and that he enjoys.

    2) Yirmiyahu’s PT. You read what you could and you learned what you could from your local sources and improvised. Then you integrated it into his life and made it FUN for him.

    3) Yirmiyahu is being stimulated all day even when no one is deliberately interacting with him. This is both physical and mental.

    4) you and your family believe that he is capable of learning, maybe at a different rate and maybe with a different method, but still capable.

    5) he is surrounded by love all day long

    6) you and your family surround him with a positive environment, a can do environment. Just by believing a child knows they can do it, maybe not today, but eventually.

    6) your families belief that Hashem is an active partner

    The bottom line is you have a child that is HAPPY and developing. You keep him as healthy as possible, as stimulated physically and mentally as he can handle and he is surrounded by a lot of love. Plus you reach out for information to either ensure you are doing things optimally/correctly, to go to the next level, or to prepare for the future.

    1. Wow, B, thank you for this amazing detailed response! And welcome!

      If you don’t mind me asking, what do you attribute how well you’re doing with MS to?

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