Today is the day. Today Little Bear goes to the hospital to have his MRI and EEG done img_3525and in a week and a half we will have our follow-up to see if he gets the full diagnosis or something completely different. It’s 7:40 right now and he’s allowed to have clear liquids until 9. We have to be at the Children’s Hospital by 11, meaning they’ll take him back close to 12:30.

Nursing school taught me that clear liquids includes Jell-o, so Little Bear is loving his Jell-o buffet breakfast this morning. I made him three different flavors, three different colors, and figure he can pig out on it until it’s time to head down to the hospital. First up is peach flavor. I filled his bowl, he ate it all. I refilled and he said clear as day, “Tank you.” He’s been saying, “Gasha” for “gracias” for a few weeks now, but I’ve never heard him even attempt “thank you.”

His therapy is going very well and every day he’s learning new schools and showing improvement. His OT is probably the most helpful, overall. She has him doing sit-ups, push-ups, fine motor exercises, learning new words. He cleans up when prompted right down to closing the bag for his therapist. I was very impressed with what I saw today versus when she started about a month ago.

He started ABA therapy two weeks ago, but missed all of last week due to Hurricane Matthew rolling through. This week he missed his Wednesday session because of Yom Kippur and today he’s missing his session because of the hospital visit. Hopefully next week will be back to normal for him.

We did have to let go his PTA. His regular PT was excellent and she was doing really well with him, but she was clear from the start that she would be sending her PTA after three or four visits. This coincided with the high holy days, so she was unable to come and we said we were fine with the PTA coming instead that week.

She came to our house and it was a nightmare. She looked unprofessional compared to the other therapists who have come through, but don’t judge a book by its cover, right? Sure, all the other in-home therapists have come with perfect hair, well-fitting scrubs, new shoes. Uncombed hair, size-too-small scrubs, and winter shoes that she’d flattened into flip flops doesn’t mean anything outright. She might be the best PTA ever.

Spoiler: She wasn’t.

One of Little Bear’s big issues is attending to his task from beginning to end. He doesn’t like to stay on anything for more than 2 or 3 minutes unless it’s eating or TV. If there’s a new person around, it’s even harder to get him to cooperate. He’ll run around like a chicken with his head cut off, trying to get you to chase him. In all other cases, the therapists have tried to redirect his behavior, even if they weren’t successful. This woman just let him go at it for the whole session. It was infuriating! And when he did sit down and show interest in the peanut ball, she stopped working with him the moment he got fussy. She never put stress on him to make him work and that’s exactly how therapy becomes useless. My boiling point was when this conversation happened:

PTA: You said you don’t like the SLP. Why don’t you like her?

Me: I feel like all she does is play with puzzles and blow bubbles and that’s not conducive to language learning. He hasn’t learned even one new word since his first session.

PTA: (not even 10 minutes later) Yeah, it looks like we’re going to need to bring puzzles and bubbles.

Me: (because I’d had it) Why do you need puzzles and bubbles for PT? I just told you I don’t want puzzles and bubbles.

So I wrote an e-mail to the owner about the issue. His wife, who is the clinical director called me back to discuss the issue. I tried not to trash her – continually referring to her as a “bad fit” – and it seems that at least one other family with a child whose problems were similar to mine were not satisfied. Now we have to wait and find a new PT. We’re not willing to change agencies and get rid of his OT, though, since she is such an asset.

Well, it’s 8:15 and we have to leave in an hour because of the rush hour traffic. Fingers crossed for a successful day with good test results.


Author: goldilocksbabybear

A mother dealing with the struggles of finding out her child is autistic.

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