Just the other day, I was trying to explain to someone that we parents of special needs kids are, more often than not, dealing with an alphabet soup of diagnoses. It starts with one set of letters, disconnected from your actual child: EI (early intervention), OT (the occupational therapist who evaluates him as part of his EI evaluation)—or perhaps PT (physical therapist), or SLP (speech language pathologist). Then you get your IFSP which will later turn into an IEP and your alphabet diagnoses: SPD, ADHD, PDD-NOS, maybe FAS, RAD, ODD, OCD, perhaps the CCC and the WPA and…oops, those are the New Deal programs of president FDR!
I think one of the hardest things in the beginning is to accept is that your child’s loveable quirks are now being pathologized: treated as problems, or symptoms of disorders, disabilities, and dysfunctions, and reduced to labels. Why is it a problem that my son doesn’t hold a crayon well at 27 months? He doesn’t like coloring. So what? Why are you grilling me about how he responds to being toweled off after a shower? So he hugs me hard. He’s a sweet and affectionate toddler! “Well, we think he has SID.”
And so, the stack of soup labels begins to accumulate. For us, there were a lot of actual words rather than letters: One was apraxia, also known as dyspraxia, oral apraxia, verbal dyspraxia, global dyspraxia—it’s important to have as many terms as possible to make mom and dad’s eyes glaze over and keep them doing internet searches til the wee hours—damn it, what keyword will get me to the information I need?!! We also got SPD, which at the time was SID or DSI or maybe SI dysfunction, not to be confused with Semantic Pragmatic Disorder or Semantic Pragmatic Language Disorder which is sort of like autism in that it involves language pragmatics…. I never did quite understand that but I think it didn’t apply even though the SLP said there were pragmatics issues. .. . And of course, it was SID, not SIDS, which is Sudden Infant Death Syndrome.
Pass the Ibuprofen.
OK, so what else was on the IFSP (individualized family service plan) that would turn into an IEP when he aged out of EI (grew too old for the early intervention program and got an individualized education plan through the school district)? Fine motor delay—they picked that up. Receptive and expressive language processing disorders. Wait—were those disorders, or delays? I wrestled with that one for a long time and finally concluded that apraxia can’t fairly be called a delay. When a later talker finally can string a sentence together and points to his leg and says, “This is my blood song,” I’ll change my mind (translation: “blood stream.” Even at 4, my son was fascinated by the inner workings of the body, and with his word retrieval issues, “stream” became “song”). When does a delay become a disability, and when does a disability become a difference society needs to accept and stop trying to fix?
Once you get your cluster of labels, you find they change, or no longer fit. Fun, fun, fun! And then, when your little one begins school, you have to figure out what little boxes to check on the IEP to cover all your child’s issues. Speech Impaired—okay, that works for a language disability. But where does SPD get acknowledged? OHI. Other health impaired. Welcome to the school’s own alphabet soup!
It’s so hard when you think you have a handle on “what’s wrong with my child” then you get another soup label pasted onto him and his ever-thickening file, but it’s part of being a special needs parent. You have to remember that underneath it all, your kid is a unique person with his own set of qualities, and aspects of himself that can delight you one day and drive you crazy the next. You need the labels to get services, and you hope that people don’t scoff at your labels and your outsider’s evaluations and secretly think, “Yeah, I’ll tell you what’s really wrong with that kid. A lack of discipline!” Ah yes, the old “bad child, bad parent” diagnosis. This is not a medical or school diagnosis, or a functional diagnosis that a therapist issues. Apparently, any stranger on the street is qualified to issue this diagnosis, and the larger the crowd of onlookers, and the more stressed out you and your child are, the more likely it is that you’ll receive the “bad child, bad parent” diagnosis from some passerby.
The upside to all of this craziness is we special needs moms just plain old “get” each other, don’t we? We’ve been there, done that. IEP meeting today? I don’t have to know your child’s diagnosis. I know you’re going to need some emotional support and a pep talk from the rest of us today! Did someone really say to you, “Are you sure it’s not just…behavioral?” I share your primal scream!
Being a mom of a kid with labels has another upside. It’s made me become more educated and more curious about other disabilities which helps me to help others. Sometimes, I can’t believe how much I know about autism for someone whose child doesn’t have autism. For years, I’ve been fascinated by the overlap between his symptoms and the symptoms of kids with Asperger’s. Let’s talk about the vacuuming thing… I get that. And the puzzle thing, and the Thomas the Tank Engine thing! And the concrete language thing, the repeating of lines from movies…yep, yep, yep. Let’s talk giftedness and 2E. I learn SO much by osmosis when chatting with the SPD moms whose kids are also on the spectrum. Lately, I’ve been learning more about FAS and RAD from another mom, and know that someday I’ll be passing along some ideas and insights to a mom who is dealing with ADHD and bipolar disorder but thinking maybe there there’s RAD going on.
Some call us warrior moms but I don’t always feel like fighting, or it seems counterproductive Sometimes, my greatest strength is in being creative, or doing research, or observing, or just forgetting it all and enjoying my child. Maybe we’re the alphabet soup parents, enjoying the richness of our experience, noticing how all the conditions blend together in the bowl but sometimes catch your eye when you dig a spoon in and focus on one or two.
How about you? Are you an alphabet soup mom? Have you ever passed along information about a disorder your child doesn’t have but you’ve learned about from another alphabet soup parent?