"Down syndrome Blogs" and Why Are There Few Blogs by Parents of Older Kids?

Feavered Mutterings’ excellent post, “Why Do 95% of Bloggers Give Up?” got me thinking about Down syndrome bloggers. By “Down syndrome bloggers”, I mean mostly those blogs that are written by parents of kids with Down syndrome.

 

As I’ve said before, there are hundreds of those blogs! It is honestly astonishing, the number of blogs out there that are written by parents of a child with Down syndrome. I’ve wondered a lot about it – whether the plethora of Ds blogs is due to the overwhelming prejudice and stigma that is still associated with intellectual disability. Or if it’s due to the abortion rate and the prevalence of prenatal testing. I’ve also wondered a lot about the fact that there are very few blogs by parents of older kids/adults with Down syndrome.

 

At this point, I think that the lack of blogs by parents of those older people with Down syndrome boils down to two reasons:

 

  1. They might be of a different generation, not as used to the internet or technology as a platform upon which to advocate, share or connect
  2. They are over it. By “it”, I mean Down syndrome

I rather think that for most people, it’s the second reason.

 

You see, when one first welcomes their child with Down syndrome into the world, they are struck by a 2×4. Or a semi. Take your pick, but most people are whacked so hard they spin and fall down, gasping.

 

When they collect themselves, they see their child and their child first and this realization that this is a fact that crosses over – all children are children first – smacks them and they want to share this new-found truth with the world. They want to crusade to change the way everyone else views and perceives Down syndrome. They want people to understand that THEY MEAN IT; really, they do, Down syndrome isn’t that big a deal, despite what the mainstream says!

 

They go right on over to Blogspot and set up a blog, usually with lots of photos of their adorable young child  and usually with tokens of incidental advocacy about their child who “happens” to have Down syndrome. They post with diligent frequency. Then… a bit less. And then… still less. Then the posts really do, just as Feavered Mutterings put it, start off with:

 

Sorry I haven’t posted for AGES.

Don’t know what to say.

(LOL.)

 

You know what I think really happens at that point? I think that Down syndrome has faded in the lives of these bloggers. That it’s become a non-entity, a blip in the screen. Not a big deal. And when that happens, these bloggers, who were never hard-core diarists to begin with, quit.

 

They don’t quit all of the sudden, understand. They quit gradually.

 

Kind of like the way their bone-deep acceptance of Down syndrome comes.

 

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Meriah
is a deaf blogger, global nomad, tech-junkie, cat-lover, Trekkie, Celto-Teutonic-peasant-handed mom of 3 (one with Down syndrome and one gifted 2E).
She likes her coffee black and hot.
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17 Comments

  • I keep mine up so I can post about school stuff we’re going through and help the newbies that might be about to embark on that journey. And I keep mine up so I can get more practice with photography and a semi-willing audience. And, when all is said and done, I guess 6 1/2 shouldn’t really be construed as “older.” Guess I still have time to burn out and get over it completely. LOL

  • I think you are right on in your theory. There has been a lot of discussion in the Autism community lately around the WSJ article ‘Who Can Outgrow or Recover From Autism’ and I think to a certain extent, it’s the same thing. As your child grows and matures, life is less about the diagnosis. The therapies are replaced by social activities and they use the tools we provided them in their early years. They are better at living life as a person their specific disability and at least for me, I’m better at parenting a person with a disability.

    I don’t feel the pressure that I felt when The Boy was younger. That’s not to say life doesn’t get stressful now and again, I just think that I have enough experience behind me now to know that when we are in crisis mode, that is merely just a moment in time and soon we’ll be on the other side again…just like always.

    So I don’t really consider my blog to be a Down Syndrome or Autism blog, but a lifestyle blog that just happens to have a person with disability that lives life with me.

  • I think you’re right. And I also think that as kids get older, parents tend to back off blogging about their kids more and more out of a respect for those kids’ privacy. I know I blog a whole lot less about my older kids than I do the younger ones.

    I started blogging about Finn within days of his birth. He was born at home, as you know, and had to be rushed to the hospital within the first 24 hours because he was spitting up blood. Turned out he had an intestinal atresia that needed immediate corrective surgery, and he spent two weeks recovering in the NICU. It was during that time that we got his Ds diagnosis. I was so distraught, I couldn’t deal with all the people who wanted to know what was going on, so I started a blog – Finnian’s Journey – as a central place for friends and family to find information about how he was doing. I never intended it to last more than a few weeks, and I had no idea at all at the time that there were hundreds of other parents out there blogging about their experiences with Ds, and they were just waiting to connect with me and support me. So I found some wonderful connections through that blog, many that are alive and well to this day, and writing about Finn became a sort of therapy for me, sorting my thoughts and feelings as I came to terms with his diagnosis, getting feedback.

    But after awhile, it was just like you say – I kind of got over it. After a while, Ds just was no longer such a focal point for me. Finn was just Finn. And weeks would go by during which I had nothing to write about. So I finally retired Finnian’s Journey and started a new blog where I could write about all kinds of things, and Ds would have a place, but not center stage – just like in real life.

  • I agree with Lisa. My blog began as a pregnancy blog, just as I had kept a diary of my first pregnancy back in the day before laptops were common. Then it became pretty ds focused, but was also a place for.family to keep up with our ridiculous moving, and widened to other things. But I feel my almost teen boy child in particular should now be allowed some privacy, and in addition I found myself, still find myself, unable to write about how I really feel for fear of upsetting the loved ones I left on the other side of the world (again!). I intend to start again once things are calm, but am also planning a fresh blog with a wider subject matter. Meanwhile, huge thanks to you, Becca, Beth, for keeping up the good work!

  • this is an interesting question, i’m glad you posed it meriah. i can only speak for my own blog experience — i started when my daughter was 5 and she is now (gasp) almost 10. i think there are many reasons i’ve slowed down — for one, i think that’s a natural for any blog. i know that since i began blogging and reading blogs that sadly my time for both has gotten chipped away by other things. i see and hear that from others, too. blogging was a novelty, now it’s morphing into something else. but for me it’s more than just that…. for me, it’s also about the span of the year. i always think of movies like “when harry met sally” when i think about this — you know how that movie carries you through many holidays? it’s spring, then they are crunching through leaves, then it’s christmas and finally new year’s? that carries the trajectory of the story. same for most of us — i know my stories often revolve around the seasons and the holidays and i realized early on, in horror, that i was at risk of repeating myself. every year, i watch the movie elf and think about how much the lead character reminds me of sophie — but i’ve written that blog post. i don’t need to write it again. i did promise myself long ago i’d never start a post with “it’s been so long” or “i’ve been so busy”. i decided i’d simply write when i had something to say and wasn’t repeating myself. and definitely, lisa is right, i think privacy becomes a concern as our kids get older; i don’t write about sophie’s now-tween sister much at all anymore. but i do still treasure the opportunity to blog — even though i resigned myself years ago to the fact that i am really just doing it for myself, rather than an audience. sorry for the rambling — like i said, good topic! 🙂

  • I think it’s therapeutic for those of us just starting on this journey to write about it (and I’m still waiting on my journey to start. Due in about 3 weeks, or when the perinatologist says “go”). I hadn’t even thought about having a blog as a place to advocate; but instead to record and remember. I’m a pro at being a mom. But I have no experience at being a mom to a child with Ds. So, I do agree with you in that the writer probably just doesn’t feel the need to release, vent, share, advocate, etc., because eventually, they become a pro. Perhaps? I don’t know. Interesting topic, though. And I just found your blog today so I look forward to reading more.

  • I did not start my blog until Zoey was just about a year old. To tell you the truth, I was over the DS thing the moment they found her heart defect on our level 2 ultrasound. I just wanted her here and her heart repaired. But then she arrived sicker then we could have ever imagined. She arrived with a stroke and a rare form of leukemia and a plethora of other goodies and seriously, I had time for a blog?

    Then life settled in after a lengthy NICU stay and her repair and then wham… seizures. Nasty, uncontrollable seizures. And then I began a blog. Only to vent. Only to write and then suddenly it morphed into what it is. Which I am not exactly sure what that is but all I know is it sustained me. And after seizures came full blown leukemia and that blog was my therapy. A lifeline. A gift.

    Now she is almost 6 and the blog is fading out a bit. I use to write daily, now maybe once a week and my readers, they aren’t mainly DS moms, cuz I learned early on that even within this community, we didn’t and still do not feel part of the crowd. My child and her extra chromosome would scare the crap out of a parent googling ‘Down syndrome’ after a new DX.Zoey will never talk per se, or probably walk and she will not write or read, etc, so our content is so different then say the main stream DS blogs. I get that. I really do.

    But I will keep writing and publishing them into books. My posts and pictures are better then any journal or scrapbook I could ever do. And I will keep reading all the amazing blogs, and keep up with the antics of the incredible children we have been lucky enough to find along the way.

    Sorry for the ramble …

  • I enjoy writing so that’s why I blog.

    But honestly? I thought Down syndrome was going to matter a whole lot more. Even at just a year old, which doesn’t qualify Lauren as an “older kid”, I’m finding less and less to say about Fown syndrome.

  • My very few readers are probably wondering if I’ve fallen off the blog circuit since I have done a post yet this month. I think I’m going to steal Amy’s promise to herself and not start any more blogs with “sorry its been a while”. I think one of the reasons people don’t blog as their kids get older is two-fold – their kids are busier and they start to find time for themself elsewhere. Cate is only 7 but in addition to 30 minutes of homework and thearpy 2xweek – she now has girl scout meetings, cheerleading practice, and starting next week swim team practice. Plus she doesn’t go to bed until 8:30 these days. Add to it that since I can leave the kids to play alone these days, I’ve found myself able to start an exercise routine and actually pre-prep some food for the week ahead without losing my “tv hour”. So it is getting harder to find time to write. I’ll come back to it when we settle into a post holiday routine but I have a feeling I’ll be posting more because I have something to say then to provide my family with a running update.

  • Meriah,

    Thank you for asking, I too have seen and asked the same question, what happens to the parents of children born with Down syndrome and their aging parents as they all age together? As a former Board member of a local DS support group the one question I have went back to time and time again is, where do these people go? What happens in their lives that they simply drop from radar?

    My wife and I have 18 year old twins, both born with DS and later due to our . . . scratch that my procrastination . . . both also have Autism Spectrum Disorder; imagine Moxie born with DS and Deaf . . . multiple disabilities . . .

    When our sons were born the internet was in its infancy and for reference sake, I am 51 years old, my wife is 50, ‘blogs’ at the time of our son’s birth were . . . not born yet so to correctly answer your query, why do parents of older children with DS not blog . . . well quite honestly, those that know what a ‘blog’ is don’t really find any value in them as they have already blazed that path . . .

    Let’s travel backwards in time for a sentence or two . . . ‘new’ parents of a child born with DS are either hell bent on finding a cure (for the disability) or determined to see that they can set an example by getting their child ‘included and accepted’ in their community.

    As parents and as we age, we don’t give a crap whether or not that our children are included, because quite frankly we don’t really know our neighbors as well as we should and if we did we all might be moving to new neighborhoods and finding new neighbors and secondly and more importantly, we’re tired . . . tired of the battles we’ve fought to get our children through high school, then adulthood and guardianship and social security disability income and assisted living and day programs and wait lists and living life in the margin . . . tired.

    I ask your question in a different way, why do parents stop living . . . forget status updates and tweets and new blog posts . . . parents of children (that become adults) with disabilities stop living and cling to survival in order that our children live as good a life as is humanly possible. We give (up) everything in order that our children live a life as meaningful as we imagined for ourselves when we were young and worry free.

    You asked . . . thank you

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