Recently, Shasta of Outrageous Fortune, one of the other bloggers on the Circle of Moms Top 25 Most Inspiring Families list, asked me:
Do you think the Down syndrome community is more cohesive than the cerebral palsy community?
She had noticed that many of the Top 25 blogs centered around a child (or two!) with a disability, but that the Down syndrome blogs outnumbered the others. Obviously, my blog covers both, so she thought maybe I’d have some insight into why that might be.
My first thought was that there were more families touched by Down syndrome, but my gut told me that wasn’t the reason. A few minutes on Google confirmed that Down syndrome is less common than cerebral palsy. About 5,000 new cases of Down syndrome are diagnosed among children in this country each year, compared to around 10,000 of cerebral palsy.
Given those numbers, it seems that the cerebral palsy blogging community would be bigger. But, in my experience, the Circle of Moms list isn’t an anomaly, but a microcosm of the blogosphere. I’ve found many more parents blogging and tweeting about Down syndrome than cerebral palsy – and I’ve been searching for both. Shasta’s question prompted another:
Why is the Down syndrome community more vocal than the cerebral palsy community?
Before Nathan, I was an advocate for Sarah Kate, but I had different goals. I focused on protecting her and her needs (emphasis on “her”). I pushed her physically so that she could reach her maximum potential – to make her as “like normal” as possible. I worried about inclusion, of course, but she is intelligent and makes friends easily, so I never had any doubt that she’d fit in with her peers and lead an independent life. I kept a laser-like focus on treatments, emerging technologies, and research that could potentially increase her abilities. Only in rare, fleeting moments did I think of the larger cerebral palsy community.
Having a child with Down syndrome is different.
It probably starts at the beginning for most of us – the day that we discovered the alarming statistics on abortion of children with Down syndrome (~90% of in utero diagnoses). I remember where I was when I first read that number. It scared me. That number told me that society does not value my child. That number also roused my momma bear instinct.
I now have a fierce desire to be a Down syndrome advocate. I want people to notice Nathan and really SEE him. I want them to understand that eliminating this wonderful segment of our population is a tragedy. By contrast, cerebral palsy isn’t detectable in utero. Children aren’t destroyed because of cerebral palsy – not in 2011, anyway.
We in the Down syndrome community are focused on the bigger picture.
But there’s one more thing that makes our community different from that of cerebral palsy, autism, and other disabilities. Many of those parents have faith that eventually a cure or treatment will be found for their child’s condition. We don’t. Our children are just who they are. Interventions will help them to maximize their potential, but there’s no expectation of a cure, and we wouldn’t want one even if it became available.
We expect our children to be accepted just the way they are.
The social media explosion gave us a venue for our voices to be heard and enabled us to share information quickly and efficiently. So, yes, I do think the Down syndrome community is more cohesive.
For our community to survive, we have to be.
What a great question by Shasta! And this makes so much sense…thanks for this!
I obviously can’t speak to why the Down syndrome community is so cohesive, but I have some ideas on why the CP community isn’t.
First, there’s no certain “look” for kids with CP. Oh, I see kids out sometimes who hold themselves a certain way, who may drool, who have the same developmental delays – things similar to Julia. But I can’t be certain they have CP (which maybe shouldn’t really make a difference, whether it’s CP or something else that gives our kids the commonality). So like in your recent swim meet story, where you saw the girl with Down syndrome and ran over to say hello, and your friend whipped Nathan around to show that you’re part of the “club” – CP parents don’t have that instant “hey, there’s someone I should hook up with and support!” You have to ask, “What is your child’s diagnosis?”, things that we don’t always like being asked ourselves.
Second, it’s caused by so many different things – stroke, brain bleed, lack of oxygen at birth, post-birth accident, etc. – whereas Down syndrome has one cause and one cause only. People I think like to focus in and find people whose story relates as closely to their own as possible. So even though it’s all CP, there’s a bit of disconnect there.
Third, and what I think may be the bigger one, is because CP isn’t chromosomal, many people have a feeling of “my child is this way because of something *I* did or didn’t do while pregnant.” Parents aren’t ashamed of their child, but rather they worry that people will judge them as parents – “she obviously used drugs/drank/smoked/didn’t get prenatal care when pregnant, so her child’s condition is her fault”. So they are somewhat closed off about sharing, which prevents joining with others.
That’s my many cents, anyway.
And on my goodness, I’m sorry that is so long. It never seems that long squished into the little reply box.
Hmmm…in some ways I agree with you, but in other ways I don’t. CP doesn’t always manifest itself in the same way, as you pointed out, but we (our friends, family, and I) have gotten very adept over the years at spotting kids with spastic forms of CP, and I do make a point of speaking to those parents, just as I do when I see a child with Down syndrome. The difference is that those conversations with the “CP crowd” center on treatments and information, not support and connections, which is pretty much in line with what I said in my post above.
Your third point is a little stickier. Internally, that probably is the thought process that moms go through, but unfortunately, WAY too many people in our society still believe that Down syndrome is a result of inbreeding (I know – ridiculous that people still think that!) So…maybe. 🙂
Anyway…GREAT thoughts and thanks so much for contributing to the conversation. You really gave me some additional angles to consider!
What a wonderful post. It’s nice to meet you! Coming over via Pudge & Biggie. It makes me proud that we can say all the things you did in this day and age. I grew up with an older sister with profound MR and there definately wasn’t the pride and support for my family back then that there is around my Abigail today. One of the biggest gifts that came along with her little bit extra is this wonderful community!
Amy- you know- your third point is an interesting one. When Abby was first diagnosed- my ped, my OB, the geneticist, the hospital staff all made a big point to say you know this didn’t happen because of something you did- this is random. But my husband and I didn’t feel that way. I had a history of early m/c- which while the cause is unknown- with them being that early- they often are attributed to chromosomal abnormalities that are incompatible with life. So for us it felt initially like maybe there was something wrong with us and are ability to reproduce. By the same token- it never occured to me to judge the parent of someone who has CP that their child’s diagnosis was their fault. Maybe we all just feel a little self-conscious when we begin this journey.
Have a good day!
Welcome, Cole! I understand where you’re coming from regarding the miscarriages and the feeling that you had. I had a first trimester miscarriage after the fetal heartbeat was heard in 1998. In 1999, we had a baby that had triploidy – a chromosomal abnormality that is like a trisomy, but instead of having a third chromosome on one pair, she had a full extra set (so 69 chromosomes instead of the typical 46 or a trisomy of 47). So I definitely feel like there’s something “defective” about my reproductive system, even though the professionals would say it’s completely random.
Hi, I am Heather I am 30 years old. I can’t talk but it doesn’t stop me from liking the same things other people like. I like music, cats, and friends. I write original songs , I use Finale and Logic. As you can imagine it takes me a while since I only have control of 6 switches from my wheel chair to move the cursor in the program. I love music and I have to get the songs out of my head and into the computer. I started the Bead Business to make some extra money so I can do more of my music
Heather
I have an 11 year old daughter with BOTH down syndrome and cerebral palsy. Key word, both. Why is it so hard to find information out there for kiddos with both? Even Children’s hospital tells me my daughter is rare and there is none to limited data avail to help us in making decisions regarding her upcoming surgeries. Frustrated again…
Very frustrating, I’m sure! Although I’ve heard of dual diagnoses with Down syndrome, CP + DS is not one I’ve encountered before. I’m glad that you found us here – just wish I could be more helpful.