Special needs is a very broad subject to write about. Truly, anyone can have special needs. I often write that our family wears our autism on our proverbial sleeves. The oldest and youngest are both on the spectrum (officially). Truly, though, a lot of people in my and my husband’s families would meet criteria for an autism diagnosis if the same information was available thirty years ago. We laugh (a little) and say about our kids, “Yeah, they come by their autism honestly.” Really, we all do.
The collective “we” have learned so much over the past few decades about autism spectrum disorders. We don’t know enough, but we’ve come a long way in the diagnosis, and treatments available for families with children on the spectrum. It’s natural to wonder about the hows and whys of the autism phenomenon. I think about that stuff a lot less than I used to, though, because, now, I am simply living through it. While it is validating to have the label/diagnosis, working on raising and launching my family is the reality of my situation. We have more ups than downs now, and more funny stories than sad ones.
I get asked about how and when and what-did-it-look-like when we first started pursuing testing for Tommy, and later, Katie. Developmental milestones, and the delay of said milestones are the obvious answer to that question. Well, that only worked for our first child, though. Katie’s diagnosis came much later in her life, and only after a lot of frustrating situations. Special needs can look obvious at times, right? Everyone can see Down’s Syndrome, for instance, and people in wheelchairs and on ventilators obviously have special needs. With all the awareness campaigns for everything under the sun, though, just how aware are you? I certainly am not always aware. Can you recognize a special need when you see it? Sensory disorders, obsessive behaviors, and anxiety disorders are all special needs, too. You can’t necessarily see depression, but is that any less special than the challenges we can see?
My Tommy (for example) is fundamentally opposed to shoes, and has been for many years. This is not a problem in the summer, but when you see a child (or man-child grown) wearing shorts and flip-flops in the snow, can you recognize that the situation is probably a special needs issue, and not a “where-is-his-mother” issue? What about the screaming kid in the parking lot? I’m guilty of thinking “what is that parent doing?” instead of, “Oh. Sensory issue. I get it.” Both of my spectrum kids refuse winter coats. I’ve stopped buying them, as a matter of fact, because they won’t wear them. And the notion that they will learn to wear heavier coats once they’ve just been cold a few times is a lie from the pit of... well, it’s a lie. They have been cold plenty of times, and those coats looked fine and lovely hanging on hangers in the coat closet. Forever. I finally relegated said coats to the Goodwill this year. I didn’t recognize some of those types of “symptoms” in Katie right away, though. She was twelve when we finally had our “oh! I know what this is!” a-ha moment!
Aside from sensory issues making us special, we have food issues (everything is an issue, as a matter of fact). The different foods on the plate can. not. touch. This will completely ruin a meal. And making said children just go hungry doesn’t fix it, it just makes everyone cranky. Food can’t touch. Period. For a long time we couldn’t use the word “nose” because it would send Tommy into a spiral. Katie does not tolerate thunder. She will make herself pass out to avoid hearing it. My husband, who is afraid of nothing, does not get it, but even he is like, “do what you have to do, it’s going to storm.” We are a special family that can’t have things too loud (I seriously carry earplugs in my purse), too bright (sunglasses are stashed everywhere in the car, in the house, in the coat closet), too dark (three out of five of us are afraid of the dark, and we have nightlights in every bathroom in our house), or too quiet (fans. In every room).
Change, of course, is another problem. We do a family briefing every morning. I’m not kidding, we are special that way, and we talk about possible deviations from the plan. IF there is a change from the possible changes that wasn’t addressed that morning, the day is usually needing to be ended sooner rather than later.
I have learned to be able to say, “Sorry, we have to go home.”
It is far better in the long run to end an afternoon early instead of trying to muddle through a meltdown.
Special needs families are special, indeed. I’m proud to belong to one, actually, and I love to write about it. Perhaps we (you, me, us) all belong to special needs families, because most of us can relate to having special issues... right? We may look underdressed in the winter, and over prepared in the summer, but we are better and stronger for it. And, sometimes we eat dinner at three in the afternoon because we’ve had to end the day before it gets any worse, but that can be special, too. Midnight ice-cream parties make up for three o’clock in the afternoon dinner-times.
Keep calm, stay special, and parent on!