Naked

Getting services for a child with a disability is a lot like walking around naked in front of strangers. Some people may not mind this. I do.

Let me explain.

Zane needs assistance with mobility, communication, and the functional use of his hands (you know, like feeding himself and maybe perhaps eventually writing?). All this requires the help of therapists and therapies. In order to get those outside of school, the state enters the picture…unless, of course, you want to pay for private therapists. But that’s a little like having a private nurse or doctor (i.e., only for the well-off). And I’ll tell you, that ain’t happenin’ until I meet my long-term writing goals. And even then…

Anyway, in order for Zane to receive PT, Speech, and OT outside of school and IDEA, the state does a lot of poking around. They want medical records and financials and details about your life since before you can even remember. They come out to your house (a place I used to consider sacred) and sit on your couch, glimpse your pictures on the wall, and maybe drink from your water glasses. They leave their shoes on when you just cleaned the floor. They take a little something away when they go: A feeling of privacy and any remaining notion that my house is my own. And it’s not just one person. It’s multiple people. Strangers.

You see, some people don’t mind being naked. They don’t mind sharing water glasses or financials. I do. I feel exposed. But I want the best for my son. I want to give him every opportunity. In order to do that, I have to take off my proverbial clothes. 

Anticipatory Grief

This year has been filled with grief. Another child we know who has special needs died this week. He and his family live in our area.

Whenever a kiddo with medical needs (like Zane) dies, it moves those thoughts of death from the back of my mind (where they’re conveniently stored) to the very front. My brain races:

• How much time does Zane have left?
• Is something wrong with him that I can’t see?
• Does the seizure activity speak to a bigger, underlying medical condition that will ultimately take him?
• How will I handle it when I have to say goodbye?
• Will I handle it?
• And if I do, how can I possibly go on without him?

Or, I think, maybe I’ll die first and won’t have to deal with the pain of losing him. This prompts other thoughts:

• He can’t die without me. He needs me. What would he do without me?
• And what about Justin? I can’t leave him motherless either.

So I work hard to stay healthy and fit…so I don’t leave my kids without a mother.

Zane had a seizure earlier today. He was crying and tired. As I sat with him, stroking his back, I realized how very lucky I am. He’s still here! Not only that, how absolutely fortunate am I to be living on this planet at the same time he is? And to be his mother nonetheless. So no matter how short his time is here on Earth (or mine), I at least felt somewhat better knowing that I get to share a chunk of my life with him. It doesn’t ever take away those other thoughts. Ever. But it helps. A little.

So hug someone today: Your kids, a friend, a spouse or significant other. Do it! And be grateful you’re sharing time on this planet with them—even if it’s only for a little while.

The Non-Verbal Child and Presuming Competence

Presume competence.

That’s what we as parents and educators were told to do at the Peak Parent Conference in Denver when I attended in 2008. Just because a child cannot speak or communicate in a universal way doesn’t mean he or she cannot understand what you’re saying—that you’re talking about or around him.

I know Zane has way more happening in his mind than most people give him credit for. He understands a lot. If you know him, you know that. He simply doesn’t have the means to communicate in a way many of us understand. I believe it’s the reason he yells at inappropriate times: It’s the only way to garner attention.

That said, I encourage you to watch this video. It speaks volumes about what we may be missing with our non-verbal kiddos. It is absolutely amazing. Maybe you’ve already seen it. "Never give up." I love this dad's comment. It rings so true for me. 

On a separate note, Zane’s Zeizure activity continues. According to the neurologist’s instructions, I’ve kept him on both medications. The Zeizures have tapered off to some degree, yet Zane still has at least one every day. We have a new neurologist we plan to see once some things get sorted out with his insurance.

Do you presume competence with people who are cognitively different? Some people in the world are absolute naturals when it comes to interacting with kids and people with differences. I am amazed by them. I wasn’t like that until I had Zane. I was always afraid of saying the wrong thing to a person who was differently-abled. Now I am drawn to them.