Bird on the Street

Change

7:17 pm

When I was writing my last post, I went looking around Barbara’s site, trying find where she’d written about Down Syndrome. I failed to find it, but became mesmerized by a picture of a child climbing into the bathtub. The picture surprised me so much that I called my husband over to take a look. The child scales the edge of the tub like a miniature mountain climber. I’ve never thought of that. I mean, it would be quite a feat for Charlie at his current size, but I never even pictured that scenario. Right now I lift him into the tub and in the future I hope to have a roll-in shower. It was black and white in my mind and now, someone had shown me some gray.

You think I’d be used to this by now–the constant change. Ever since I gave birth to Charlie I’ve felt like nothing is sacred–as if my beliefs have been thrown up into the air to land where they may.

I had to change my mind about parenting. I had to learn that his accomplishments and failures aren’t a reflection of my parenting. These are his battles; this is his journey–I am merely a guide.

I had to change my mind about teaching–about learning. I’ve had to accept that there are things that Charlie will never do–not because he can’t, but because he doesn’t want to. I’ve had to accept that I will have to bring him to the learning because he can’t always get there himself. I’ve had to get down on the floor and do things for him so that he can have that experience.

I have to change my mind about independence. In this country we put such a premium on independence, but why? What’s so bad about interdependence? Truth is, it doesn’t matter–me, my husband, our parents, our siblings–we’re all in love with this kid. What do I care if he needs me? I need him too.

I’ve had to change my mind about intelligence–that holy grail. As someone who was constantly rewarded for her academic achievements, I grew to really value smarts, but I’m starting to see that smarts don’t equal happy. I am still completely dedicated to helping Charlie learn as much as he can, but his cognition doesn’t rule my world. The ability to find joy in this life is worth so much more.

This boy. . . he’s teaching me so much.

Filed Undertherapy

The Boy Who Bites

6:53 pm

When I first started my Facebook page, I asked what people wanted their children to learn and I read all the responses very carefully. I noticed several parents talking about their child biting, licking, putting things in their mouth inappropriately.

As it turns out, I’m having a similar problem with my little guy.

Charlie has always used his mouth more than he should. When he was very little, he used it when his vision wasn’t helpful. This meant that he would often lick something up and down, but the neurologist assured us it was fine.

Well, we’ve worked diligently in the mouthing area, but then Charlie developed a new and terrible habit–self biting.

Let me say that I don’t even want to talk about this. I HATE that he does this. HATE it. For me, it’s like he’s wearing a badge that says “mentally unstable.” I feel like I do a decent job at accepting the things that I cannot change, but I this doesn’t seem like that.

It started when he was refluxing. We went through a period where he was out of his Slippery Elm and I guess biting provided some sort of relief. Now, he bites as a stress reliever. Loud room full of people talking? Bite. Stretching? Bite.

So, I’ve been reading and researching and asking the professionals.

Some kids put things in their mouths for more sensory input. This is what Charlie was doing before. As they age, it’s best to offer them appropriate outlets. You can encourage them to feel with their hands or give them something appropriate to put in their mouths. Some of the website even suggested fashioning a necklace out of a chewy material if a child is a mouther. No one mentioned gum, but I wonder if this would help with older kids.

For Charlie, however, it seems to be a frustration relief. I read a story about a girl who clenched her jaw in frustration and actually broke her teeth. I clench in my sleep and have had more than one trip to the dentist as a result. The goal doesn’t appear to be self-injury since he never breaks the skin.

The recommendations from both the therapist and the neurologist has been to redirect. So, we’ve been keeping a multitude of chewy toys around and at the first sign of frustration, we hand it to him. This has helped a lot. I’d love it if he were never frustrated, but sometimes we all have to do things we don’t want to–that’s just a sad fact of life.

I guess I should also add that if he does get into the throws of biting, we rub his upper lip to make him let go. My husband explained that its some kind of pressure point or something. I might not have been paying attention. It works–rub the upper lip.

So there ya go. A rather painful admission (I don’t know WHY I beat myself up about this stuff), what we’re doing about it, and some pictures of Charlie sorting Easter Eggs.

Filed Underconfessions, therapy

Catching Flies: Working With Your Child’s Therapists

11:06 pm

One the things that I think is most important for the well-being of your special needs child, or really any child, is to do everything you can to work with the professionals in your child’s life.

I say, start by killing them with kindness. It’s easy enough to get firm and call lawyers later if necessary, but believe me when I say that you can get a lot by just being nice.

I’ll use Charlie’s Early Intervention services as an example.

When Charlie entered the program at four months of age, he needed a physical therapist, but there were none available so he was assigned an occupational therapist. His OT is a very nice woman, but she has a very full schedule and sometimes she runs late and sometimes she can’t make it. I didn’t complain about schedule shifts and always greeted her nicely and sometimes offered her a diet coke when she was over. Not major stuff, but nice stuff. I always stayed in the room during therapy and tried to be an active participant (except speech–I have to keep back a little or I try to talk for Charlie).

Our OT ended up calling a PT who was on maternity leave and got her to agree to take Charlie when she came back.

When our speech therapist wasn’t working, our OT called up another one that only takes clients on referral and got her to take on Charlie–she’s perfect for him.

Our OT brings us hand-me-down equipment when people donate it to her employer.

I treat the other therapists the same. I try to be accommodating–getting upset doesn’t make them magically on-time nor does it prevent the occasional cancellation.

Our PT offered to add a second day with Charlie when I got fed up with the private place. She’s also offered to attend doctors appointments with us.

When therapists can’t make it, they try to reschedule.

Charlie’s six month reviews have record attendance.

Our PT got pregnant again and had to assign some of her patients to a PT assistant–guess who she kept?

Charlie’s cute, but he’s not that cute. I really think that by trying to be accommodating, participating fully in the rehabilitation process, and treating everyone with respect I’ve gotten some the best treatment around.

As a teacher I know I bent over backwards for parents who called and chatted with me rather than yelled and berated.

With students, I got far better response by praising good deeds than yelling about bad. I could turn behavior around faster with a sweet voice as well. Don’t underestimate your smile–it’s a weapon.

Sometimes you have to get tough, but sugar can be an awfully good too.