Consider

So I’m pretty sure August is talking now–using words in appropriate situations. The things is, there’s a lot of “air” in his voice. I’m not sure how else to describe it. You know how people sing “Happy Birthday, Mr. President” in the breathless voice to imitate Marilyn Monroe? Well, there’s a lot of that. The alphabet is “ah, bah, sah, dah, eh, ef, hee.”

I describe this to Charlie’s PT, who we adore, and she says, “that’s low muscle tone–you see that a lot with stroke victims.”

And, uh. Oh?

I knew August had low tone when he was baby–it’s common in kids who were preemies and I wasn’t at all surprised considering how tiny he was at birth. It didn’t occur to me that it was an issue that could have far-reaching effects–I mean, he can walk and run, and I just assumed that if you could do that then you had enough tone to get by.

I think this would also be a good time to point out that it was Charlie’s therapist who mentioned this. Charlie’s. Not one of the four specialists who works with August.

Sigh.

I really love the therapists in our life. I do, but I feel like they’re sold on the “August has autism” theory to the point where maybe they can’t see anything else. I mean, low tone? LOW TONE? This is my area! I have done wonders with tone–I have an arsenal of ideas and activities and not one person has mentioned he has low tone.

I asked the boy’s instructor about low tone and she said, “He does have low tone! I just noticed that–he’s very good at compensating, though.”

I could go on and on about all the little things he does that are probably because of low tone–it’s like a million little pieces coming together into a clear picture. Bouncing or jumping when he’s trying to increase his volume, a tendency to watch rather than join it, his easy frustration with motor tasks. . . it goes on and on.

I’m still sifting through this new discovery. Still trying to put together what it means and how I best help August.

It’s a lot to consider.

DSC00772

 

Help Wanted {Wisdom Wednesdays}

I take my kids to a big pediatric practice that has about six different doctors. I’ve mentioned to two of them that I think August has a problem with gluten. Neither has shown any interest in following up on this report.

I am not a parent in a rush to give my children a life-long illness. I already have one like that and it’s plenty of work. Plenty. I can’t, however, ignore the growing list of symptoms that seem to indicate some kind of dietary issue. Probably most importantly, I’d like some help figuring out whether or not just gluten is an issue or if we have other issues as well.

  • The child is skinny, skinny skinny, and he eats all day long. He eats fruit, vegetables, gluten free grilled cheese sandwiches, cheese puffs, popcorn, beans, soups, stews. He has always eaten more than his twin brother, but his twin brother is bigger and heavier. I can see all of his ribs through his back, but he often has a big belly.
  • He has dark circles under his eyes that come and go. Whenever I see these I know he’s going to be distant and difficult.
  • Warning, poop talk ahead: He is always constipated. He goes regularly, but it’s usually what my husband and I call “rabbit turds.” I just don’t believe that can be healthy.
  • He eats weird stuff. Mostly, he eats cardboard. Now, I know that Pica can be a sign of Autism, but this habit dropped to 10% of what it was when I eliminated gluten. Now, it comes and goes with less frequency, which again, I think it’s being caused by something he’s eating, but I don’t know what.
  • We have a family history of digestive disorders including Chrons and IBS.

I don’t know what to do. I know gluten is an issue, but I’m not completely sure how to handle that–does that mean no gluten in my house at all? Should I never eat things with gluten either? Is it like a peanut allergy or different?

I also think that there may be other problem foods, but I’m not sure exactly what. Maybe dairy? If dairy, what are good substitutes for bottles? (I know they should have bottles at this age, but with a nine month old in the house, they will get a bottle one way or the other, so it’s easier to just give them to them.)

Ideas? Suggestions? I’ve already tried banging my head again the wall and that was no help at all.

Tubes

Recovering from surgery with a full dose of Elmo.

Recovering from surgery with a full dose of Elmo.

August had tube placed in his ears last Thursday. After an inspection, the ENT found that his adenoids were also inflamed and removed those while he was under. She said to me, “I don’t know how he was breathing with his mouth closed.”

There was no miracle after tube placement. He screamed bloody murder upon waking up, and was pleased as punch as I took him home. He was visibly delighted when we finally pulled up in front of the house. We spoiled him–letting him have all the bottles he wanted and plenty of Elmo time, and by the next day he was back to his usual self.

We immediately noticed that he’s “talking” at a normal volume now. He seems to be done with the extra-loud babbling that was his trademark. He’s also babbling more. He had an excellent therapy session the next day, but I’m not sure if that was related to his hearing or to the dietary changes that are still taking effect (it can take gluten up to a month to completely clear the body).

One thing I know for certain: Today he had his back to me and I called out, “August, it’s time to come inside.” He turned right around and walked towards the door. Before, you’d have to yell or motion to get his attention.

The kids’ still got issues–mostly sensory stuff–but tubes were definitely a good idea.

Related Posts Plugin for WordPress, Blogger...