what is “special needs?”

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Back in the beginning, when we first lassoed a few professionals to take a closer look at our daughters, we were a regular family. We had a big hexagonal fence around our Christmas tree to keep our 13-month-olds from yanking the ornaments off. We occasionally found one (or both) of the babies inside the dog’s cage. We tickled them and they laughed.

After Early Intervention came in to assess the girls in response to our concerns about their language and excessive chewing (beyond what I had experienced in my work with young toddlers in the past), I was still surprised to find out that they had enough of a language delay to qualify for services. What I really expected was for someone to say, “Weeeeeeeell, they’re a bit behind” and follow it up with the party line that we always heard, “but there’s two of them, and twins are sometimes a little slower to develop, and all kids develop in their own time”– you know, the sort of thing I’d say to parents before I had kids of my own, with a slight “relax, your kid is fine, you’ve got this” smile curling at the corner of my mouth. I didn’t think I was going to actually have my concerns validated. I was pleased. I think, in the back of my head, I felt a bit like I was giving my kids an edge. “My kids are barely behind, but with this extra boost, they’re going to end up ahead! After all, they don’t really need this. They just need it a little.”

That was in March. Then there was an OT consult in April to evaluate the girls’ chewing behaviors– we went so far as to move out of our home for three weeks and stay with my parents to de-lead our house because, I kid you not, the girls were chewing the windowsills and licking the painted door frames. (“In 35 years, I’ve never seen a single home where a child was actually chewing on a windowsill,” said the lead paint inspector. Can that really be true?) Then there was a PT consult because Ham’s OT consult had us hemming and hawing about a few additional things.

At the beach with my parents that summer, I thought about the things we’d said the year before. My mom and I had sat on the deck with my then-8-month-olds, just starting to sit up without tipping, detailing how fun it would be next year when the girls were bigger and talking and running and we could collect sea shells and dig with a bucket and shovel. But my 20-month-olds were not talking, and while their favorite beach activity was definitely swimming (and splashing, and laughing), the constant consumption of large handfuls of sand was a close second, and it was generally the thing that truncated our beach visits.

My cousin came up to spend the day with her daughter, two months younger than my girls. The baby picked up an interesting thing, examined it with raised eyebrows, and then showed it to the assembled crowd of myself, my mom, my cousin and my aunt. Across the deck, Ham was placidly rolling around on the ground under the table. “She’s been under there for a while,” commented my aunt innocently. Chicken was even further away, ripping up a potted plant that she’d been slowly mangling for weeks. (That much, at least, is pretty standard fare toddler nonsense.)

But even then, it was just a language delay with my concerns layered on top. I spent a lot of time watching YouTube videos of other people’s children. You “aren’t supposed to” compare your children to other kids, but I was losing my grip on what typical development looked like because everything I knew about child development was being overwritten by my parenting experience. All I knew and remembered now was that my kids were a bit behind, enough to need a little help, but everyone was rejecting the ellipses at the end of all of my sentences. “They’re just a bit behind! They’re twins. Twins take a bit longer sometimes. They’re fine. There’s nothing else.”

In September, it wasn’t a language delay anymore. It was autism, for both of them.

For me, there was no sudden and shocking bombshell. I won’t speak to M’s feelings about the diagnosis– that part is his business– but what could I even say? I didn’t cry in the car on the way home. G-d help me, I felt vindicated. I already knew this and I didn’t like hearing it out loud but boy if I wasn’t glad to hear someone else say to me, “I see it, too.” That part was predictable and expected.

But then again, there was no major difference between who my children were in August of this year and who they were in September, but September was when the diagnosis came and we went from having “children with a language delay” to “children with autism.” There was that uncomfortable grey area, that stepping-down process between the EI referral and the diagnosis, and I was groping around in a dark room trying to understand it. If you don’t know how serious something might be, how can you plan for it? How can you know how worried to be? How can you know what to think or do or say when, for the five millionth time, someone asks you if your kids just have some sort of special “twin language” and maybe they’re talking but you just can’t understand them?

I don’t like the feeling of my throat tightening and my shoulders tensing when the phrase “special needs” rolls off my tongue. I sometimes try to creatively redecorate my sentences to avoid it altogether. In my head, I occasionally secretly reject it. Not my kids– this is transient. Development is fluid; potential is immeasurable; they’ll outgrow it! It feels overblown and melodramatic. And yet… it’s true. I set out to try to anchor myself on something and I found it. But it’s heavy.

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a bit of meta-blogging to start off

Oh, hello there!

If you’ve known me for a year or longer, you know that I’ve had a tendency to blog-hop a bit. Sometimes blogging feels like a huge commitment, and as soon as I feel obligated to write, I fold up my arms like a stubborn twelve-year-old who doesn’t want to do her homework.

But now that I have two children with identified special needs, my focus has shifted. My excess mental energy– however limited it may be– is dedicated primarily to the myriad issues and logistics surrounding my girls’ therapies and development.

I want to use this blog as a place to discuss some of our experiences. I will be mostly limiting the photos and specific details about my children (“Chicken” and “Ham”) out of respect for their privacy, but I do feel very strongly that our experiences can help other parents who, like us, have children on the autism spectrum.

I have a list of topics that I’m just itching to write about, so I hope you’ll stick around!