What I would tell a new parent of a baby with Down syndrome and a fun video featuring Yirmi!

Friday morning I got a call from our pediatrician, asking if she could pass our phone number to a new mother who just had a baby with Trisomy 21.

Two weeks before that, a blog reader forwarded an email to me about a newborn baby with T21 who is  available for adoption to a religious Jewish family in the US.

Two weeks before that, another blog reader forwarded information to me about a woman in Israel who had given birth to twin boys with T21 who was shattered and devastated.

I gave my number to the doctor for the new mother, was in touch with the contact about adoption for the newborn baby and spoke to the mother of the infant twins.

What would I tell a new parent about raising a child with Down syndrome?

I know, it can feel overwhelming when you get the news.  Maybe your mind is racing and you can’t believe that this has happened to you – this is supposed to happen to ‘other’ people.  And now you’re the ‘other’ person.  Maybe you’re unable to stop crying, maybe you feel that you did something wrong that you’re now being punished for.  All of the doctors and staff (nurses, social worker) who spoke to me gave the impression that this was very sad news.

But I want to share with you a much more accurate perspective.  It’s not sad.  It’s not bad.  It just is.  Your child has been born with a medical difference, and that feels significant.

But it’s not nearly as significant as you might think.  In fact, I would say that the less you pay attention to the diagnosis and the more you connect with him as your baby, the happier you’ll all be.

Here is what I think the most important things are to know in these early days:

  • Raising a child with T21 is pretty much the same as raising any other child.
  • He is capable of so much more than you think – put aside any preconceptions of who he is and what his limitations will be.  No matter what the doctors tell you, they have no more idea than anyone else what his potential is.
  • Trust his potential and support his process in the way that is right for who he is, not who you think he should be.  He doesn’t have to prove himself.
  • Most importantly, just love him.  You are going to get so much love back.  One day you’re going to look back and remember how you cried and felt devastated when he was born, and wish you could redo your initial response to reflect all the joy your child has brought into your life.

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I just discovered this short video that ds8 and ds3 recently made together when I was out of the room. They aren’t supposed to touch my computer without permission but I was glad to have it and am sharing it with you because it’s an spontaneous and unscripted slice of our every day life with a child who happens to have T21.  I’d love to know what your reaction to this video is!

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When a child with T21 is born, there’s an assumption hanging over his head that he’s less inherently worthy because he’s different.  We presume that having differences is a bad thing.

It’s really not.

But because of this negativity surrounding Down syndrome, parents feel like there’s been a mistake somewhere, something unfair has happened to them that shouldn’t have happened.

There are no mistakes in this world.  Your child isn’t a mistake.  His entrance into your family isn’t a mistake.  You were divinely chosen to receive this child.

Not because you’re spiritually better than anyone else and ‘can handle it’.  Not because you are worse than anyone and ‘he is your test’.

He is a child with unique gifts and abilities.  He will shift your paradigm of parenting, he will teach you things you didn’t know you needed to know – and my personal feeling is that we won the lottery against all odds when Yirmi was born!

Avivah

19 thoughts on “What I would tell a new parent of a baby with Down syndrome and a fun video featuring Yirmi!

  1. Another touching post, and so was the video, though one question popped in my head – unfortunately, not all Down children are so beautiful and cute. I mean, you can hardly even tell that Yirmi has it! What would you tell a mother who’s child is not as charming?!

    just a wondering thought, thanks!

    1. It’s a very fair question, Tehilla and it deserves to be answered in depth in its own post. For now, I’ll just say that I don’t believe a child’s worth is based on how cute or accomplished his is – of course I think he’s charming because he’s my son, but Yirmi isn’t better in any way than another child with T21 who is at a different place developmentally.

      1. I’d also add that what is normally seen as a reason for despair in parents of “different” children is often actually a consequence of it… That is, Yirmi probably presents as someone who hardly looks different just because the whole family always accepted and appreciated him for who he is rather than let the difference create a distance. In times past, children with conditions such as T21 or autism woud be locked away and ignored, so of course they’d never realise any of their potential. It took inexcusably long for medical profession to realise that the same would have happened to neurotypical individuals if they were placed in same circumstances.

  2. I think the issue is to let the parents and grandparents, have time to digest information, and give them time to respond in any way they need. a somewhat close member of my family, gave birth to a special child, they just needed time to accept the news etc, they have worked tons with this child and he is treated like one of the crowd. I think time and space is the way to give families their time to accept. also to let them know we ( friends or neighbors) are here to help, love and accept a child with special needs. when pple know they have strong backing, from family, friends, neighbors, it really gives tremendous chizuk to the family. I think they will learn about how much happiness this child brings the family at their own time.

    1. I agree, Rachelli – everyone has their own process that they go through at their own pace. But often the process is much harder than it needs to be for lack of encouraging information from other parents who have been where they are.

  3. really loved the video! just good old fun in a loving and happy relationship B”H. everyone should see how normal and positive it is.

    1. Exactly why I shared this, Jillian – because it’s just normal! Down syndrome isn’t the boogey monster that people are afraid of.

  4. That’s a wonderful video :-) Also a great post – and it applies to every single disability, additional need, or general difference, whether it’s visible at birth, or only becomes apparent later on. A child is a child, is our child, is a child if God , and the better we can assimilate this truth and live it, the more rewarding the parenting process becomes.

    And yes, I still read everything you post, even if I often come rather late to it – when life gets such that something’s gotta give, computer time is usually first to go ! :-)

    1. So happy to know you’re still reading, Allegra! And computer time is the best thing to give up when life gets busy, in my opinion!

      Agree with you completely – when I write about Down syndrome, there’s almost nothing that I say that isn’t applicable to every child with any kind of difference, however slight or significant.

  5. Thank you for that sweet video! It was so nice to see the fun loving relationship that your kids have. Looks just like life over here! ❤️

  6. Even raising a “normal” child is difficult.

    A Divine gift, yes. A test of emunah (faith), yes. A tikun for the family and the baby, yes.

    Everything is ordained by Hashem, yes.

    You’re doing a fantastic positive job, yes!

  7. Aviva, thank you for a great post and a sweet video. What you said is exactly right about having a child with Tri21 or any other difference. It always surprises me that there is a societal concept that as long as a child is born “healthy” they will have no problems in life. However, we all know that this concept is not true. Many things come up in the “career” that is parenting and I often feel that having a child with Tri21 is the least of our worries. I hope that every parent who has a child with Tri21 will take your words to heart and I hope that any parent with a child that is “typical” will take your words to heart. Because at some point or other, almost every parent I know will “wonder what they did wrong to have a child that…………” Fill in the blank, possibilities are endless. Please keep up your wonderful blog. You bring great perspective to a lot of parents who need it.

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