Tuesday, March 25, 2008

It's Pretty Much Like This

One of the things about blogging that I love is how we are able to connect with people going through the exact same thing so magically. I found Mir shortly after I first started blogging, and her experiences with her son, Monkey, really helped when we were looking to get LMNOB evaluated last year. She's one of those people I think of as a "super-blogger," i.e. she has a huge following, multiple blogs, and manages to make a living doing it... at the time, approaching a super-blogger was a bit intimidating for a small-timer like myself, but she had common threads that I needed to explore. So I did, and I was not disappointed. She was very helpful, very informative, and so supportive!

Many of you have asked about how LMNOB is doing, since there hasn't been an update in awhile regarding her sensory issues.

And the answer is, we're doing really, really well.

Most of the time.

Last month we did swim lessons and that really helped with 1.) adding to her sensory diet, 2.) strengthening her core, and 3.) her confidence levels. Going underwater was a challenge for her, but when Punkinhead began to master it (read: show off constantly) her competitive nature aided her in testing the [under]waters.

We're done now, and after having been sick we had some "re-entry" issues with getting back to our routine. And now again, after a holiday weekend - but here's where things have dramatically improved, she's aware that she needs stimulation and is getting better at seeking it out herself, without the structured activity. She was a dream this weekend...with the exception of this one time where she crapped her pants - and really on that one, I think it was laziness more than sensory-related.

But, she's met all of her goals in her treatment plan with the OT-

1. Strengthen the core, thereby increasing awareness of elimination urges and decreasing accidents. Despite the incident above, we have made great strides here...LMNOB has been Pull-Up free for about a month now, and dry each night!

2. Increase tactile, proprioceptive, oral, and vestibular input with goal of eliminating the superfits.

3. Increase upper body strength - the girl has gone from barely hanging on a bar for 10 seconds to being more than able to hang for a minute.

But the social stuff, the confrontational speech issues still baffle me. I don't know how to help that at this point, besides just talk, talk, talking it all out.

Thing is, life isn't always routine. Sometimes it deviates from schedule and well, LMNOB regresses a bit. And other times, there is no rhyme or reason and LMNOB regresses. It's exhausting trying to anticipate and prevent meltdowns, because there isn't always a pattern, and sometimes the trigger is out of my control. And that's just when I catch it.

Other times, I miss the signs. Completely. I'd tell you what that's like, but Mir just did a beautiful job the other day.

Monkey has been doing really well. REALLY WELL. He has hit his stride at school and is doing well with his friends and being sweet and charming and everything I associate with the very heart of my sweet, tender son.

At least, he was.

See, I knew that the orthodontia was going to be hard for him. I knew that as a “sensory kid” he would experience more pain than a kid who is not wired a little wonky when it comes to sensory input. I knew there would be an adjustment period.

And then he wouldn’t eat. And he wouldn’t drink. And while I spent the week trying to get him to consume something—anything—I missed it. I just completely missed it.

He started eating again (a little) and I rejoiced and asked if he was feeling better and he said yes and so I STILL missed it, because I wanted to believe we were on the road to recovery and the hard part was over.

The occupational therapist once described kids like Monkey to me as as pitcher that can hold a finite amount of liquid (or sensory input). Each addition to the pitcher raises the liquid level, and normal people both don’t experience that input as being such large amounts and are better at “pouring off” when necessary. Kids with sensory integration problems experience every input as a huge cup poured into the pitcher, and find themselves overflowing in very short order.

Well, you know, we’d worked out a great system, here. Monkey does his occupational therapy, he takes his anti-anxiety meds when he needs them, and for the most part he’s on a pretty even keel.

Then he got his devices put in, and now there’s all this pressure in his mouth.

Then at soccer practice this week, someone’s dog managed to circle him and wrap the leash around his legs and it cut him a couple of places.

Then he started eating again, but still not really enough, and so he’s constantly complaining of hunger but unwilling to try to eat more.

This kid’s pitcher has been overflowing all week and I missed it.

Like LMNOB sometimes does, Monkey had a series of freakouts. And the sheer frustration of being on guard all the time, only to have a trigger slip under the radar, made Mir cry. And then Monkey felt bad.

The end to Mir's post just made me want to cuddle them, and my own LMNOB and say, "Damn neurological quirks! Why must you torment us?"

“Is your mouth still hurting?” I prompted. “Is something ELSE hurting? I gave you some Motrin, you know.”

He nodded against my shoulder. “My head,” he cried. He sat up and wiped his eyes and looked right at me for the first time all day. “My head, Mama. It hurts. It hurts so much, it’s so LOUD all the time. The Motrin doesn’t help fix loud. When it’s so loud I get MAD.”

At that point it feels like there’s nothing left to say, because the volume in his head is turned up to 11 thanks to the sensory overload in his mouth, and when I look at it that way, no wonder he’s so angry. On the other hand, he can’t go around having tantrums and hitting people, and he knows it; and yet here we are.

So I didn’t say anything, I just held him and wrapped us up in a blanket and rocked him and stroked his hair and hoped that maybe for a minute or two, things were quieter for my baby.

And that's pretty much what it's like.

Thankfully, it's not always like that.

But the fact that it is that way a fair amount of the time is heartbreaking.

And, I write this on the verge of April, when my schedule goes wonky. Also, LMNOB is having a tooth pulled tomorrow.

I am not sure what to expect besides some serious bumps.

Time to buckle up, Buttercup.

© 2008 Ramblings of a Red-Headed Step-Child. All Rights Reserved

1 comment:

  1. I am sending you "today is okay" positive thoughts! Let us know ASAP