For the past week I've been reading the epic fallout from a failed iPad giveaway on Ellen's blog at http://www.lovethatmax.blogspot.com/. Many of the over 200 comments from this giveaway that never happened, are authored by parents of kids who have been diagnosed with Infantile Spasms, a seizure disorder usually contracted by infants (hence the moniker), which at the very least can adversely affect the child's development. I've only encountered one child whose mother said she didn't have lingering affects from IS, but most like our son Hayden, have much of their development completely wiped out and spend years crawling out of the IS hole. Many, many kids I read about on Ellen's blog, were entering the so-called contest for the iPads on another blog at http://www.marissasbunny.com/ because their children's IS had been so severe and uncontrollable, or had later morphed into other seizure disorders, that they presently do not have any verbal language. These iPads would go a long way in helping them express their needs and emotions and are about ten THOUSAND dollars cheaper than other assistive technologies (Dynavox to name but one).
Aside from the obvious sadness and angst over reading how at least three hundred families were duped into believing that there were iPads to be given away, the other lingering thought I had from all of this was, "Wow.....Hayden's 12 years old and is largely non-verbal....is THIS why? Is IS at the heart of Hayden's delays?" We were and remain very fortunate that Hayden's seizures DID stop. Yes, they were uncontrollable for six weeks. Yes, it was a nightmare beyond what I can explain to anyone who's never watched their child seize over and over and over again. But with prednisone they stopped. They've never come back and I thank God for that everyday. In reading the stories of these families who's child's seizures never stopped.....they didn't pause, or if they did, it was just for a few months and then they morphed into a different type of seizure (tonic-clonic, partial, etc...) and have or haven't responded to a litany of anti-seizure meds, I've just been left with this very sober spirit within me that yes, we got through the wormhole of seizures, but maybe, just maybe being in it even for the briefest of moments can explain so much.
And now we have the chicken-or-the-egg game: Hayden has DS, and kids w/ DS usually experience language delays and some "Swiss cheese" effects in their learning....like one day they know a word, sign, shape or concept and the next day it may not be there. Add to that, was born deaf and didn't have hearing until his first reconstructive ear surgery until he was 14 months old. In the middle of that he contracted IS when he was 6.5 months old, after his DTP shot. Add to that murky stew is the fact that our early intervention agency as a matter of course (illegal as it was and continues to be) didn't offer ST to babies w/ DS until they were 18 months old. Whatever. That speaks to then.......why way back he had significant language delays......but what about now? What about all the intensive Muscle Based Oral Motor Therapy we've done since he was in preschool (and I thank God every day for Ruth, our ST, who brought oral motor therapy into our home without ever studying Sarah Rosenfeld Johnson, http://www.talktools.net/), and how hard we work everyday on sign language (H has hearing now, but still has significant loss in both ears so we (I) sign everything with him), reading and vocalizing. Could IS be at the root of these struggles and stumblings?
And it's not just the speech/oral motor areas that we see the profound gaps or delays, it's in every area of his learning: one day he'll be able to read a word (he signs it back to us) and the next it's gone. Or he'll stay stuck on a word for days, even weeks. When we were at Disneyland back in May with my in-laws, the words were "family" and "starfish". "Starfish" was the answer to EVERYthing. And I mean EVERYthing. Goofy kid!! Most of the time it's not "problematic"....I mean who's gonna get mad at a kid who's stuck on such an innocuous word as "family" or "starfish"? Right now we're stuck on "train". "Train" is the answer to "Do you want more milk?", "Do you want to watch "Days Of The Week" Signing Time?", or "Helping Around The House"?" (and no, the answer is most definitely NOT "Zoo Train" from ST.....a trap we fell into at the beginning of this stage, much to H's frustration, who clearly wasn't asking for "Zoo Train"). ...."Train" is the answer to "how are you?", "It's time to get your haircut", "Okay, let's go inside and see Maria, our friend, who's going to cut your hair!" It's "train", "train", "train" all the way!! OY!!
Is IS the reason why EVERY single day we have to teach him again what the sign for "milk" is?? So much of our days is "Groundhog Day" over and over and over. Is IS the reason why when I found him in our bedroom the other day, having already turned on the TV and turned off the A/C (both BIG no-no's) he gave me the blankest of stares when I told him very sternly to get out of our bedroom. I really felt bad for being impatient with him because in hindsight, it was obvious he had NO idea what I was talking about, even though I was saying it, signing it and demonstrating it with my facial expressions.
And then maybe the real question is "who cares"? "Why are you going on and on for five paragraphs with this lady??" you're asking yourself (because you're probably a much saner person than I). Well I think I want to know if IS is at the heart of so many of our struggles because maybe then I can take some of the pressure off myself. Of course the real answer is, "It is what it is". Life on life's terms. It doesn't matter, but I think on so many levels when the seizures were medically behind us, we never wanted to look back. To ever feel that terror again. For a very long time in Hayden's life, life has been on seizure's time, unexplained-deafness-and-life-threatening-ear-infections time, trisomy 21's time. This past week in reading the epic narratives of so many kiddos out there who remain VERY affected by IS, even if the seizures have stopped, it's just reminded me that we're not alone in our Groundhog Day. We may never know how big of a role IS continues to play in our lives, but we're not alone.