Saved by a flash of recognition
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.
“just human” Thanking the Almighty they exist.
This is a serious post and everything…what happened at the summer program was shocking (argh! the phone thing!!) and I am glad that things worked out at the court house…but…and don’t think me dense, it’s possible that you are using an expression, but…”I am meeting the assistant superintendent outside of the office Tuesday morning.” Last time you met outside the school. Why are all your meetings “outside”? Do you eventually go “inside” to somewhere and get to even sit down? Do you not deserve to be met in an office? Is that too official, like, they would be admitting to being incompetent by actually saying it in an office? What about even meeting in a classroom? or a bathroom? Do you easily get lost in buildings and so people meet you outside of them first so they can lead you in? WTF?
Yeah the meeting sounds very ‘Deep Throatish’. I too am curious about the ‘outside’ thing.
In my brief, BRIEF experience with all of this, I suspect that Rick knows someone who is severely disabled. Generally speaking, unless you are exposed to a thing one has little to no understanding of what it means to be affected by that thing every second of every day of your life.
He either has a SN child himself or someone he knows does. It just isn’t human nature otherwise.
Thank God there are a few Ricks sparingly scattered among all the unhelpful bureaucrats! Also, I applaud you for your persistence and tenacity concerning the summer program.
Claire – LOL
My dear Claire:
It is all about power. How and where you meet with someone makes a difference on various levels. Usually when we meet with a desk (or similar) between us, there is a difference in stature (a doctor, a principal, a teacher, a judge). Many are intimidated, personally I typically am not. On the other side, the person “behind” the desk feels in a position of power, the meeting is on their territory, in their space. By meeting anywhere else, both parties are on more equal standing. Additionally, by not meeting in her office, she cannot easily call in her lawyer or assistant, no one will just “drop in,” etc. In a nutshell, it makes all parties equal. Besides, tomorrow’s meeting is in a coffee shop that only sells one brand of coffee, and it is named after Pearlsky, yes, they only sell my coffee.
Ken: I have another web site for the “Deep Throatish” stories … 😉 Oh, wait, that’s not what you mean? Well, at least we are not meeting in a parking garage.