
If I were to level with y'all and be completely, unflinchingly honest (which ... well, is kind of what I DO, here on the Internet, so hardly a novel occurrence), I would have to admit that three years ago, when my son was first diagnosed as speech delayed and the first red sensory flags were waved .... I never, ever could have imagined that we'd "still" be dealing with "this stuff."
One of my very first blog entries about it -- in which I tried wildly and desperately to temper my panic and fear lest I draw out the Pain Olympic players who like to talk about perspective and childhood cancers -- I assured my readers that I understood that a speech delay was "no big thing." Something we'd face head on and conquer and dust our hands of in no time.
A "blip," I believe I called it. Does three years (plus change) still count as a blip?
I never could have imagined the roller coaster ride we were REALLY in for, back then. Speech therapy would lead to a disastrous first attempt at occupational therapy. Feeding therapy. Social skills groups. A premature declaration of everything being "just fine," then an even more disastrous first attempt at mainstream preschool.
After threats of expulsion, we had more evaluations. A horrified IEP team that clearly believed he was autistic, or at least profoundly, pervasively delayed. The spectrum loomed, then PDD, then back to SPD. We became versed in dyspraxia, language disorders, echolalia, hypotonia, auditory processing. Synethesia? Perfect pitch? Anxiety disorder? Stimming. Impulse control. Self regulation. Fine motor skills. Rigid thinking. Floortime.
Private and public special education programs. The short bus, regular worries about the expense, daily battles with our health insurance, hourly questioning over whether or not we were doing the right thing, or enough, or too much. 2011 brings more occupational therapy and another summer at a camp for kids like Noah, and the big question about kindergarten placement. We are far from "done." It is not "over."
Three years ago, those three paragraphs would have sent me straight into the fetal position. Like if you told the inhabitants of Gilligan's Island that hey, your three-hour tour? NOT SO MUCH. SORRY.
But there are so many paragraphs in between -- pages and pages of triumphs and improvements and just plain amazing moments with my child.
My impossible, difficult, and frustrating riddle of a child. My sweet, exuberant, smart, hilarious, affectionate, considerate, imaginative, joyful, Star-Wars-and-dinosaurs-and-dinosaurs-in-space-obsessed child, who still sees and experiences the world in ways many of us will never quite understand, whom I wouldn't change for anything in the world.
He's perfect, and the last three years were really pretty damn good too.
Image via Amy Corbett Storch
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Comments (17)
Beautiful!
Well said, Amy. You're about a year and a half ahead of us on the same roller coaster, and your posts are so inspiring to me. Depending on what program they put us in, maybe we'll see you at camp this summer.
I think it's normal to get through the early stages by convincing yourself it's all temporary. We've swung wildly expecting everything to be figured out by elementary school to hoping he'd continue to qualify for services (which he does) so that he can get the support (we now recognize) he needs for as long as possible.
i have a question..i have a 2 yr son who has been accepted into the speech program. he is delayed at least a year and some change behind..im scared that if this doesnt work then what do i do...im tired of the emotional outburst from him and myself (bc i honestly dont know what he wants), its so hard to know that my child cant communicate with me, so he throws tantrums. normally i can usually figure out what he wants but then theres time when i just dont know...someone please tell me it gonna help!
CaiAndRoman, take it one step at a time. There is no need to catastrophize about the situation just yet. I had two kids who were speech delayed. They ended speech therapy at ages 3 and 5 with no residual problems. There is just no way to predict exactly what you are dealing with. Take a deep breath and take it one step at a time.
Keep on keeping on. Best Wishes to all of you.
Thank you for this post I feel as if there is a light at the end of the tunnel now
well said.