Sunday, February 15, 2009

Special Needs

Lovin Mama recently touched on this topic and it's got me thinking . . . or, rather, wanting to put into words something I've contemplated for quite a while.

I usually categorize my children like this: Finn has Down syndrome, and all my other kids are "typical." But, really, what is "typical"? What does it really mean? I know it refers to kids who develop along the "normal" or "typical" curve, and who do not have a "diagnosis." But this leaves out so much.

The truth is, even my "typical" kids have what I would say are "special needs," though not in the commonly-used sense of the phrase. Finn is the only one of my six children with an official diagnosis, but my other kids certainly have quirks and issues. And honestly, at this point, the issues my other kids have take more energy and create more stress in our house than Finn's Ds does.

Kevin and Joey are both gifted. This means that they need to be constantly challenged and stimulated or they become bored and obnoxious. Joey, I am convinced, is probably a genius. He's like some kind of savant or something. I don't know if it's part of it, but he's pretty quirky. He's really imaginitive, and tends to go off into his own little imaginary world a lot. Like he'll pretend he's in one of his favorite video games. This can be extremely frustrating, and even embarassing, when we're trying to walk to school or get through the store and there's Joey, hopping around and chirping, oblivious to everything and everyone around him.

Daisy has speech issues. Not delays, as she actually has a vast vocabulary. She just has a lot of trouble pronouncing certain sounds - enough so that it often makes her speech difficult to understand. So she's in speech therapy twice a week at preschool. But this is small potatoes compared to her bigger issues, which are her phobias. Daisy is unreasonably, irrationally, and utterly terrified of . . . so many things. Dogs. Cats. Butterflies. In fact, pretty much any creature that's not human (people, she loves. She's very affectionate, in fact). Public restrooms. Elevators. Drinking fountains. And when I say terrified, I mean trembling-hysterical-to-the-point-you-think-she's-going-to-pass-out-terrified. This is an issue that affects our every day activities, because we encounter things that she is deathly afraid of everywhere, every day. And it's not like we try to shelter her. We keep thinking that if she's constantly exposed to the things she fears, she'll gain confidence (so far this has not happened). That said, there are certain activities we just can't participate in, like birthday parties and playdates at anyone's house who has pets. The day they brought animals in to the preschool class as a special activity for the kids, we didn't send Daisy to school that day. It is such a big issue that we are grappling with whether to send her to kindergarten in the fall (which will affect her twin as well), although she is academically ready. If she does go, she will likely have to skip field trips and such. So this is a very stressful situation for our whole family.

Annabelle is a hair puller. I hate to use the term trichotillomania because I'm not a doctor and don't want to dole out diagnoses, but there it is. If you've seen pics of the twins and wondered why Annabelle has short hair and Daisy has long hair (although they are fraternal and not identical), that's why. Because Annabelle pulls the hair right out of her scalp on one side in the back, so I have to trim all of it just to keep it even. Right now we are trying to break her of this habit by keeping her fingers wrapped in first-aid tape. Twenty-four hours a day. Which works, unless I forget to put new tape on after her bath. Then she goes right back to twirling/pulling. It's heartbreaking to make your daughter's bed in the morning and find locks of hair in the sheets. I have no idea what the final solution to this is going to be. Therapy? Medication? In the meantime, it's a big source of stress and even anguish.

Lilah . . . well, honestly, she may be the only "normal" one. But she's only 2. Give her time.

So I guess what I'm saying is that, really, my family seems to be full of "special needs." And I would bet that most families are. And that is not to downplay Down syndrome. I know full well - as much as someone who has not yet experienced it but anticipates it can - that the older Finn gets, the more apparent his Down syndrome, and therefore his "special needs" will be. But for now, he pretty much seems "normal" like any other baby his age. Not that he's doing everything that most babies his age are doing. He's doing a lot of things that other babies his age can do, and there are things that a lot of other babies his age can do that he can't yet. But, you know, he's a baby. He eats. He sleeps. He poops and pees. He smiles and giggles. And when I look at my other kids, I think that he fits right in.


Lovin Mama said...

I knew I couldn't be the only one! I'm so glad you wrote about this. Do you feel like your kid's "quirks" didn't appear until they were older? I think I've been waiting for them to grow out of certain behaviors and have finally realized that may never happen. Parenting my "typical" kids is definitely harder than parenting the one with DS, right now. I wouldn't blame you for being completely overwhelmed right now. {{{hugs}}}

Megan said...

Hence the reason why I think the term "special needs" is useless. As is differing abilities. Really, we all have "special needs" and "differing abilities". Will Stella's (and Finn's) be more pronounced? Perhaps. Probably. But, oh well.

Anonymous said...

Hitting the nail on the head.If you really are considering treatment level attention for the girls I'd be happy to chat with you about it a bit?

Jeanette said...

I appreciated this post. I saw my boys in your descriptions. My youngest is the one with boundless energy who requires contant stimulation or he gets bored... which means behavior issues. my oldest (my stepson) is down right gloomy. He is VERY afraid of several things and is so incredibly emotional, that we also have to avoid some "typical" activities. He is getting more emotional control as he gets older, but the first 6 years were TOUGH! We are not sure how much is biological and how much is his mom's influence. but anyway, to your point, our typical kids also require special attention.

Tara Marie said...

Lisa, wonderful post. I do think that the word 'normal' is one of the silliest words to use for any human being.....what is normal?

I have to tell you, in all honesty, the only time I really 'see' my daughters Down syndrome is when I'm sitting with her, looking at her sweet hands [very typical phenotype for T21] and her beautiful eyes, that I realize that she has Down syndrome. Yes, she most definately has other facet of her life that are directly related to having T21...but they are just part of her, so I never seem to signal them out as 'different'? I don't know if that makes sense, but I just see her as her.

Hugs to you....I've been thinking about you and this newest journey in your life and I know that you will shine through.

SunflowerMom said...

Most definitely! We all have our "special needs." Sean's are just more obvious to the outside observer.

Carla said...

Wonderfully written, Lisa. Everyones definition of "normal" and therefore their expectations of their children are different. For some people, a "normal" child is one who fits in and doesn't stand out in a crowd. Although I don't have a child that can be, at least not at the moment, defined as "special needs", I hope that neither of my children ever just blend into the crowd. I hope they both have their own unique personalities and, yes, idiosyncracies that define who they are as a whole person. This is not, of course, to belittle what you are going through with the hair pulling and phobias which I know are real problems for you and your family. I guess what I'm just trying to say (rather poorly, I'm afraid) is that your children are just that, your children as you know them to be me and you wouldn't necessarily change who they are, despite "issues".