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Dar has been doing something that I affectionately call “the Stevie Wonder.” My true friends know that I own ten Wonder albums, have cheered for him in concert, and pretty much love everything he’s ever said or written, so if I say my kid is doing a Stevie, it’s a compliment.

Dar closes his eyes and shakes his head. He often pairs this with suspending his hands in front of him, freezing them with the fingers bent, almost like miming a frozen pianist.

For years, he has exhibited elements of these, but only in the last three months or so has he put them together into an identifiable single behavior that he does at least once every half-hour. I was recently on the phone with his pediatrician, who saw him for a half-hour November, and she doesn’t remember him doing anything like it.

It became more and more frequent in January. His home therapist and speech therapist noticed, but figured it might be simply Dar’s latest stim. Longtime readers know that Dar gets into some activity for a month or so, and the moment his Mom and I decide to buy him something that seems to suit this new obsession, he loses all interest in the once-cherished activity. (I hear that parents of neuro-typical kids also go through this.) So, wifey and I thought to ride it out.

The school disagreed. In late January, they came to us and said, “These could be mini-seizures, he needs to see a doctor.” Hard to argue with that.

Yesterday, his program manager came up to me and said, “Have you been able to take him to a doctor about the seizures yet?”

I said, “You mean a neurologist?”

She said, “Yes.”

I said, “Yeah, I called the nearest neurologist and he told me, ‘Be here in 20 minutes.’”

She smiled, cause she gets me. “But it should be like that, shouldn’t it?”

“It should, but it isn’t. The waiting list is months long for everyone. However, my wife, who is a miracle worker, pushed them on their cancellations and we managed to get an appointment on February 14th.”

“Oh, great.”

Reader, I hope you have a romantic Valentine’s Day. I’ll be in a doctor’s office showing videos and some of the below. And then the doctor will order tests that we’ll have to schedule for later, like an MRI and an EEG…same stuff we did with Dar when he was 2. Oh well, when he rolls in the conveyor belt into that monster MRI machine, at least this time he won’t look like a tiny baby being offered for sacrifice to the god of technology.

I should mention that as of this week, the week that began on Sunday February 4th, Dar seems to be doing the Stevie Wonder, uh, a little less. Not never, but not as frequently as before. There’s a glimmer of hope that this was, indeed, one of his passing phases. But just a glimmer, because we still see Stevie Wonder-ing.

So…at some point I will post a video of Dar doing the Stevie Wonder. For now, to give you a sense of the problem, I’m just going to post verbatim entries from his journal. Dar writes in a journal? you ask with affectionate enthusiasm. No, he doesn’t. The journal goes where he goes; it’s a way for all his aides and teachers and therapists and parents to communicate with each other and track his progress.

So, when the school started keeping a record of the seizures, they eventually just made it a list next to his other activities…a list that got narrowed down to time and duration of Stevie Wonder-ing. In the journal the list is next to his other activities; in this blog post, you see one right after the other. But I kept both, to give you a sense that Stevie Wonder-ing isn’t the only thing he does.

Copied all this straight from the journal:

 

1/31/18

9:15 Pee in Toilet

Ate Pirate Booty

9:25 Rehearsal in Cafeteria

He had fun running around

9:45 went out with buddy for recess

Stayed for about 2 min then screamed, cried, and threw himself down

10:00 Read books

number match (1-5)

number match (1-10)

Read eagle book

Identify “stop” 3 out of 3

Dar has been pushing his pointer finger back every couple of minutes. He is pushing so hard I’m afraid he’s gonna hurt himself.

Name practice

Color matching

Number match (1-4)

Helped sort blue folders w/partner

Match numbers w/tiles (1-5)

Match numbers w/tiles (6-10)

11:00 Bathroom (pee)

12:20 Pee in toilet

12:25 – Read books
12:50 – P.E. – would not participate or go. Went in the cafeteria

 

 

9:15 – 3 sec

9:16 – 2 sec

9:21 – 1 sec

9:24 – 3 sec

9:41 – 8 sec

9:43 – 5 sec

9:45 – 1 sec

9:46 – 6 sec

9:47 – 7 sec

10:00 – 4 sec

10:10 – 3 sec

10:10 – 4 sec

10:11 – 2 sec

10:12 – 7 sec

10:13 – 15 sec

10:15 – 9 sec

10:17 – 2 sec

10:20 – 3 sec

10:22 – 7 sec

10:24 – 10 sec

10:26 – 5 sec

10:27 – 7 sec

10:29 – 5 sec

10:31 – 3 sec

10:32 – 5 sec

10:32 – 7 sec

10:35 – 2 sec

10:42 – 6 sec

10:49 – 5 sec

10:52 – 3 sec

10:55 – 7 sec

10:55 – 8 sec

10:56 – 2 sec

10:58 – 4 sec

11:02 – 6 sec

11:03 – 11 sec

11:03 – 7 sec

11:04 – 5 sec

11:06 – 3 sec

11:08 – 2 sec

11:10 – 3 sec

11:12 – 2 sec

11:12 – 3 sec

11:12 – 2 sec

11:12 – 4 sec

11:12 – 5 sec

11:13 – 2 sec

11:14 – 3 sec

12:10 – 15 sec

12:13 – 13 sec

12:15 – 10 sec

12:27 – 4 sec

12:27 – 6 sec

12:28 – 3 sec

12:32 – 6 sec

12:34 – 11 sec

12:34 – 6 sec

12:37 – 8 sec

12:40 – 5 sec

12:45 – 6 sec

12:50 – 3 sec

12:54 – 4 sec

12:57 – 5 sec

12:59 – 4 sec

12:59 – 5 sec

1:03 – 9 sec

1:13 – 6 sec

1:15 – 10 sec

82 incidents

 

 

 

2/1

8:10 – Pee in toilet

Ate Pirate Booty, cereal

9:00 Mail Delivery

9:15 Number Match

9:20 Ate Cereal

9:30 Speech: Cried, Screamed, Threw Himself on Ground for 10 Minutes, Then Cooperated

Name Practice

Matching numbers

Number matching (1-10)

Matching colors

Number match (1-5)

Number math clothespin (1-4)

Identify “stop” “walk”

Bathroom 11:00

Matching shapes

Matching numbers puzzles

Tantrum at lunch for about 30 mins

Crying, screaming, kicked and hit IA, threw items in Elissa’s office, banging and hitting himself in head

12:20 – Pee in toilet

12:25 – Music w/ Lisa Z. Started screaming, left the classroom for 20 mins. Came back, music was still going on, he was ok for the rest of music (10 mins)

1:00 – Read books, ate rice chex

1:30 – Pee in toilet

 

8:28 – 2 sec

8:43 – 3 sec

8:47 – 2 sec

9:05 – 5 sec

9:13 – 8 sec

9:16 – 2 sec

9:18 – 3 sec

9:22 – 3 sec

9:23 – 5 sec

10:00 – 4 sec

10:10 – 3 sec

10:12 – 2 sec

10:15 – 2 sec

10:24 – 3 sec

10:37 – 7 sec

10:37 – 2 sec

 

15 incidents

 

(He changes aides so often, and some of them are sick, so we never know if fewer recorded incidents actually means fewer incidents or not. We have asked for the school to be better about this; we asked in person and we wrote the request in the journal.)

 

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