Am I out of touch with the realities of raising a child with T21?

I received the following comment to my recent post, ‘Down syndrome – our special gift‘:

>>I hate to be a downer, but its all very easy and good to say that someone with down syndrome is a special gift when they’re a baby, but when they’re 40 or 50 and never grow up, are constantly a child that will need to be looked after, even when you’re old and will need someone to take care of you… how, then, can you say “I got a lamburgini”? I really think you’re not in touch with the realities of what it means to have a kid with downs syndrome. Yes, as a baby they smile a lot, but theres limits to how different they are from all other babies. Its when, as they grow up, they don’t really grow up much and always need more care than other kids, even well into adulthood… Well, I’m interested if you’ll still be singing the same tune then.

Can you tell me- what are the special benefits of a 20 or 30 year old with down’s syndrome? Or a 10 or 15 year old?<<

I’m sure there are others who think I’m deluded to feel grateful for the child we have, as he is, and so I’m glad this was asked so I can share a bit more of why I feel the way I do.

To the person who wrote this comment and others who are wondering the same thing:  I wonder if you have children who have reached their late teenage years or beyond?  I’ve found that those with older children have an understanding that a child being born typical is no guarantee of later results.  It’s nice to think that your newborn baby will bring you nothing but joy and gladness, and sometimes it works out like that – and often it doesn’t.  From my  observations I’ve seen that most families I’ve met (and spoken to about what’s really going on in their lives) has experienced significant challenges with at least one child, and milder challenges with the others. By significant challenges  I’m referring to depression, molestation, addictions of all sort – in addition to the more common learning disabilities, rebellion or extreme unpleasantness.  Plenty of these children are extremely bright.  High intelligence is no guarantee of anything – right now on the news there’s the horrific story of the extremely intelligent young man who entered an elementary school and started killing little children and their teachers after killing his mother.

Or what about parents of children who are born healthy in every way but at some point have serious health challenges?  Or whose child was born prematurely or suffered a birth related injury that causes brain damage, or at a later age suffered an injury that caused brain damage?

My point is that your question makes a false assumption that all parents won’t be faced with very real and even frightening situations regarding their children.  I can’t emphasize this point enough because this reality puts the above question into perspective.   There will be challenges from your children – major challenges at some point – and there’s a false security that comes from pretending otherwise.   I hope I’m being clear about this before I proceed to responding to the specifics of what was asked.

Yirmiyahu, five months

Yirmiyahu, five months

I don’t think that Yirmiyahu will ‘constantly be a child who will need to be looked after‘ when he’s 40 or 50.  Those with T21 who were raised in past generations didn’t have many of the benefits available to children born in this generation.  Never before have things looked so good.  My expectation is that Yirmiyahu will be able to live an independent and productive life as an adult.  Is this living in a dream world or in denial?  No, this is is a reasonable outcome based on all we know now about Trisomy 21 and what adults with T21 are currently accomplishing, what can be done to help our children reach their potential, and this is how we will raise Yirmiyahu.  As world famous brain specialist Dr. Reuven Feuerstein has been known to tell parents what they can look forward in the future for their adult children with T21 – ‘his/her wedding!’

Children with T21 usually have cognitive delays.  Delays doesn’t mean that they never move forward – it means that they get there more slowly.  A baby with T21 will usually crawl later, walk later, talk later – but they get there.  We plan to mainstream Yirmiyahu as he gets older – a child with Down syndrome might enter a typical first grade classroom at the age of 7 instead of 6, and graduate high school at 20 instead of 18.  He may need academic modifications in order to be successful.  I can accept that.  As far as potentially lower IQs, I haven’t seen high IQs correlate with increased success or satisfaction in life, and people with a lower IQ can still have a meaningful life.

>>Can you tell me- what are the special benefits of a 20 or 30 year old with down’s syndrome? Or a 10 or 15 year old?<<

I’m not there yet but I believe we’ll find them – keep reading and I’ll keep you posted when Yirmiyahu is 20!  :)

>>I really think you’re not in touch with the realities of what it means to have a kid with downs syndrome.<<

You’re entitled to your opinion.  I think you’re overly negative about what it means to raise a child with Down syndrome.  :)   That’s okay, I’ve also seen some older children and adults with T21 that would have given me a similarly negative impression if that’s all I had to go on, and it’s because I’ve researched this so much since Yirmiyahu was born that I was able to put that in perspective and now have a better sense of what the landscape really looks like.  There are lots of reasons to be optimistic and encouraged about raising children with T21 in this century.

If you have a child or relative with T21, what has been your experience?  I’d love to hear the perspectives of others.

Avivah

18 thoughts on “Am I out of touch with the realities of raising a child with T21?

  1. We are only capable to the capacity we believe. Likewise, regardless of IQ, mental challenges, physical maladies…the best indicator for the level of achievement for our children is us, as parents, believing in them and never giving up on them.

  2. I’ve been fortunate in my life to have known & been close to a number of persons with Down’s syndrome from a young teen to 20 something, to mid 40’s. I treasured all of those friendships. You are right to be joyfull in the gift life has given you with this child, exactly as you are right to be joyfull in the gift of all your children.

  3. I’m really bothered that someone would ask such a rude and unproductive question. None of us can predict how we will parent in a certain situation until we’re in it, and to project and accuse with such negativity blows my mind. I’m happy and inspired that you are looking at your son and your unique situation positively, and I believe that the fact you are finding the positive now while he is a baby foreshadows that you will do the same as he grows. Will there be challenges? Of course! But like you mentioned, there are challenges with all children, and a parent finding the proper outlook is half the battle. You have conquered in that regard and have already proven yourself a marvelous parent that so many of us look up to, so keep up the positivity and always choose to see the blessings in your life rather than living in fear or doom about problems you’re not even facing at the moment. We should all learn that lesson as well.

  4. I understand where the commentator is coming from. I have a great deal of experience with people with Down’s from family members to volunteering for special olympics and other organizations. There are some people with Down’s who do function on a low level but in my experience these are not the majority but it does happen. In my experience those who are raised with good caring parents who leave no wall untouched and no stone unturned to get their child what they need have kids with down’s who turn in to well functioning adults with down’s. These are parents who understand that they need to let their child grow up and give them room to mature and be responsible. I have seen many cases of parents over sheltering and this leads to 40 year olds who cant be by themselves. It has a lot to do with the preseceptive of the parents and Aviva I think you have the right one. Keep going!!

  5. Avivah, your points are spot-on. It’s all hasgacha pratis. We don’t control anything, no matter how “perfect” our kids look at any one snapshot in time. blessings:)

  6. I am wondering about this person that wrote this letter. I wonder do they actually have a person who has T21 in their life. This person seems so angry and I wonder why. They remind me of a young man who had a brother with T21. The brother was institutionalized at a very early age when he was diagnosed. This young man was resentful of anyone with a positive outlook about T21 because if there was hope for these children then maybe his parents had done his brother a great wrong. Sometimes misery does love company. I am glad you refuse to join this person in their misery. I do hope they can find a way out of it.

  7. After I wrote my comment, I felt bad about what I wrote and was wondering if I should delete it, but I couldn’t. So I’m glad you didnt (at least seem) to be upset by my comment. (The reason I felt bad about what I wrote wasn’t because I took any of it back, but because what was the point? What’s the point in bursting your bubble and trying to get you to look at the negative instead of looking at the world with rose colored glasses.)

    I guess I’ll go backwards and first answer the commentor who asked if I have someone with t21 in my life. Yes and no. I have a late 20s neighbor with downs syndrome who needs looking after like a 7 year old child. My brother in law has two siblings- one a foster sister with downs syndrome, and one a brother with mild mental retardation, who lives in a hostel for people mentally delayed. Both are adults physically. Both both are children mentally, and need to be taken care of like little children. My sister and her husband have guardianship one one of them, because even after my brother in law’s mother died, the “adult” mentally challenged sibling needs to be taken care of, needs guardianship and someone to be responsible for him. And its very difficult for my sister.
    And this sibling won’t ever grow up.
    And I feel for my sister. Because it’s very hard on her. She has her two little kids, plus a 30 some year old kid to take care of. And the 30 some year old kid who says “I’m an adult, why aren’t you treating me like one” when psychiatrists and all sorts of professionals have agreed that he is NOT an adult mentally, and can’t be trusted with specific stuff, because when he is, my sister and husband have to bail her out.

    I also volunteered for Yachad and worked with lots of adults with t21 who are still kids, even though they’re well into adulthood.

    So that’s my perspective. I’m not miserable or anything, nor is my sister, but I think people who say “some kids rebel, some kids have down’s syndrome” are being overly simplistic. Its not easy having a kid with t21, and you can’t compare it to other challenges in kids. Would someone say “Baruch Hashem for my kid off the derech- its a bracha, not a nisayon”? No. Its a nisayon. And that doesn’t mean Hashem didn’t do it for a reason, but that doesn’t either mean you shouldn’t be aware that it IS in fact, a nisyaon.

    You said someone might have a kid with t21, someone might have a kid who has health issues, etc… But its not like its either or. You can have t21, and then on top of that, you can have any other issue. Its not like by having a kid with t21, you are guaranteeing that your kid won’t have any other issue. It just means that they have t21 in addition to anything else they may have.

    Baruch Hashem, as a parent without kids who have t21, I haven’t had the need to look into the development of treatment for kids with t21 today, and I hope you’re right, that there are many more opportunities for them today than there were in the past…

  8. Oh, and its not that I wonder why you’re grateful for the child that you have, because yes, every child is a gift. But saying “I got a lamburgini, you got only a mercedes” is basically saying “I got something even better than a regular kid- I got someone with t21” and I wonder what makes you say that its even better than having a kid without t21.

    1. Thank you for clarifying your perspective; I appreciate that.

      When I wrote about the Chevy vs. Lamburghini, it wasn’t my intention to imply that I think that other children are less valuable than Yirmiyahu because they don’t have T21! I considered writing a qualifier when I initially wrote what I did because I realize the potential was there for what I wrote to be misunderstood, but I thought my point would be understood and decided against it. There’s a big part of me that would like to delete it because I feel I didn’t express myself well and the use of this comparison isn’t a good one.

      To explain a bit more: so many people look at a family with a baby with T21 as if they should be depressed and sad, and my point was to say that we don’t feel we got an inferior baby by any means but are very grateful for who he is, as he is because he is very special. To me it’s not a contradiction to say that one child has gifts that another doesn’t have. He has different gifts and maybe it would be better to use the terms Chevy and Dodge vs Lamburghini? Both good, neither one better than another, but just different models?

  9. Though I also took issue with the idea of Down Syndrome being a special gift, I absolutely agree with you in this post.

    I don’t see Aryeh as a Lamborghini and my other children as Chevys. Frankly, N and I have very good genetics and they are _all_ Lamborghinis. :) Okay, I’m overstating the case…but the point is that he is just a child, with a specific identified genetic abnormality, but with all of the potential ups and downs of any child. Aryeh’s extra chromosome changes the statistics, but any child is a genetic roll of the dice. And until he is much older, we have no idea about the magnitude of his issues, or even if his issues will actually be problems.

    I went to an ‘elite’ school. Some of my peers have done great things; starting world changing businesses, making positive change in education, etc. Some of my peers are non-functional and living with their parents. I count myself as ‘underachieving gifted’. Intelligence is no guarantee of success, and sometimes actually hurts success.

    I don’t see his Down Syndrome as a special blessing. If I knew of a treatment that would simply turn off his extra chromosome and leave him to develop typically, and would follow that treatment (none such exists at this time). I simply see Aryeh as a child, worthy of love, full of potential, and special to me. I have high expectations; that he will grow to be in independent and self directing adult, that he will hold a job, that he will have post secondary education (college or a trade)…and I expect grandchildren.

    To argue against my own point, because of the specific genetic abnormality, I have been opened up to becoming a more intentional parent, and am learning many new things about genetics, learning styles, and medicine; stuff that previously I could afford to ignore. So I am forced to recognize adversity as a motivator toward growth. But adversity is highly over-rated, and I would never choose adversity for my children, even though it does cause growth.

    As a more specific response to this post, we have a mutual friend/acquaintance in Baltimore who has a adult sister with Down Syndrome. She lives somewhat independently (I believe in a ‘in-law’ apartment), and works as an aid in a nursing home. Far from being a burden on her parents as they age, I suspect that she will be particularly well suited to caring for them.

    -Jon

    1. Jon, I think we agree on just about everything!

      As I said above in my comment, using the term Lamburghini vs. Chevy was inelegant at best. I agree that all my kids are wonderful and don’t think Yirmiyahu is more or less than any of them. This was more the point of my last post rather than to idealize T21.

      About turning off the gene if I could…I’ve thought a lot about that as a theoretical possibility. It’s easy at this stage to say I would do it, but I wonder as the years go by and T21 is such a causative factor in who he is if I would feel the same way…because that would change the person he was. I want the best life for all of my children and when adversity comes your way it’s good to learn and grow from it, but I don’t look for it or wish it on anyone, and I certainly don’t want to romanticize it.

      1. Hi! Someone forwarded this article to me since they know I have a child with down syndrome. My perspective: Children with down syndrome are a huge blessing in many ways. My daughter adds so much more to our family than we ever visualized when she was born. She is cute, spunky, caring, and just plain fun to be around. The senior citizens in our neighborhood love her since she is always coming over to ask how they’re feeling. Our family loves her since she livens up any occasion with her unique sense of humor. My other kids love playing with her since she’s so creative and imaginative. And I love talking to her when i have a challenge because she is such a sympathetic listener.

        That being said, I did have a hard time with your article. It sounded to me like you weren’t accepting the fact that kids with down syndrome are much harder to raise than typical children. A typical child usually goes through the terrible twos for about one year. A child with downs can get stuck in that stage for 3 or 4 years. My daughter required me to get every kind of baby lock I could lay my hands on. As she grew older, it got more challenging. With a sweep of her arm, she could clear all the books off a shelf, and move on the the next thing without pause. It’s hard when a two year old behaves like that, and it’s a lot harder when a five year old does it. Taking her to a store was a challenge for many years as she was always pulling items off the shelf. Getting her out the door to go somewhere she didn’t want to go was never a picnic either.

        I can’t comment on the adult stage since my daughter is only nine years old. At this point, she has really mentched out and is a pleasure to be with MOST OF THE TIME. I still have to keep an eye on her constantly since she is so unpredictable. While I love her to pieces, my life is very different than it would have if she didnt have downs. I spent a number of years very jealous of all the women in the park who could sit on the bentch and chat while I had to be on call every second to chase after my darling, either to prevent her from running out of the park or to stop her from hitting other children.

        To answer your question, I think you are out of touch with the realities of raising a child with T21 simply because you haven’t done it yet. I have a feeling you may look back at this article with a big smile on your face as you try to find even a second of your day to sit down and relax for a minute. Is it challenging? Definitely! Worth the effort? For sure!

          1. My daughter is the oldest of five. By the time she was two and a half, i had two under her. Her siblings are her best friends- most of the time!

      2. I was thinking more about the ‘turning off the genes’.

        1) Turning off genes is part of what every human needs to do in order to not be a mass of undifferentiated cells.

        2) The fact that your son is alive means that he is already doing a seriously impressive job of modulating down the extra genes. A couple of papers that I’ve read claim that the rate of trisomy 21 at conception is 1 in 200. This means that even without intervention, only 1 out of 4 children survive to birth.

        3) I think that at any stage in development, your son’s achievements and personality will have been molded by the things that got him to that point. I don’t think that a treatment which helps to better modulate genes will change who he is.

        -Jon

  10. Thank you for your quick response, Sara! I had a strong feeling from what you wrote that she was your oldest! Your children sound lucky to have each other – may you have much nachas from them all!

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