It was a long week, some good, some bad. I guess that means status quo.
No one from the school summer program, from the teacher up to the superintendent has answered a single question. I am meeting the assistant superintendent outside of the office Tuesday morning. That should be interesting. Some of the outstanding questions are …
- Why was Pearlsky not allowed on the field trips to the pond that were designed specifically with her in mind?
- Why did B tell the teacher that Pearlsky was not to receive PT during the summer program?
- Why did E tell the teacher that Pearlsky was not to receive OT during the summer program?
- Why was Pearlsky’s PT and OT quadrupled (to Pearlsky’s detriment) into eight sessions a week instead of just being extended as the assistant superintendent and I agreed?
- Why did no staff member know how to feed or hydrate Pearlsky the first day nor was I informed that she was hungry and dehydrating?
- Why did no staff member know that Pearlsky needs go be given her amino acid, that Pearlsky needs that amino acid to survive, nor even know what the amino acid is?
Other questions that I am not pushing so hard on include:
- Why did a program for disabled students take place in a classroom where cell phones do not work and the only land-line telephone able to receive calls was removed?
- Why was Pearlsky isolated in a separate vehicle from all the other students during field trips?
- Why was there no swimming, not even using the Y as in years past when the school pool was not available?
- Why did a fire drill cause the nurse to simply forget Pearlsky’s medicines one day?
The thing is, no one is taking any responsibility or admitting to the failures.
I went to the court house on Friday to file the papers needed to get guardianship for Pearlsky. The court clerk did not disappoint, as with most others, he had no clue.
I handed him the two items I needed to file, the report from the psychologist / social worker / doctor that verified that Pearlsky is in fact incapacitated and “mentally retarded” (the word the state still uses and mandates). The other item was the “Petition for Guardianship of an Incapacitated Person.” Easy enough, right?
How old is she?
Seventeen, eighteen in mid-October.
You then need to file the “Petition for Guardianship of a Minor.”
But that will only be valid for about a week once we see the judge. Please note, she is disabled.
She is a minor, you have file the other form.
She is severely disabled. She turns eighteen in about ten weeks.
She is a minor. You cannot petition otherwise.
Ok, I was not happy. I was nice until this point, but he was not only totally wrong, but indignant about it. In a rather “strong” voice I said …
She’s a retard. Got it? Your words, not mine. SHE IS A REEE–TARD.
The room got quiet, many people looked at me.
I’ll get Rick.
Rick is the “Judicial Case Manager.” He comes up, looks at the forms, and asks …
When does she turn eighteen?
Okay, we still have time.
Fantastic. Can I ask a question? My son, also severely disabled is fifteen, when can I file these papers for him?
Then something happened. Simply one of those human moments that just go right through you. Rick looked up from the papers, looked me in the eye and said …
Wow. You must have it tough.
He was so sincere, so empathetic, it was this strange but strong connection, this flash of recognition. I know nothing of the man, I would guess early 40’s, probably a family man, don’t know. But he got it, he cared, it all showed in those six words.
It’s what I got. We deal.
I can file for David anytime. Then we went on. He looked at the papers, made a great suggestion as to one of the items, and then asked “Will you be bringing her to court?” I told him that that was the plan. He turned around, grabbed a paper and explained that if for any reason she cannot come, if it is a bad day for her, or any reason, just fill out this paper and give it to the judge.
I will never know why Rick understood. I would guess he does not have a kid like ours since that would have probably been hinted at. Maybe he’s just human. Go figure.