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.
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
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