Not holding our breath
As I do everyday, I met Pearlsky when she came home on the bus today, Wednesday, swim day. I speak to the aide on the bus.
How was swimming?
I wasn’t there, but I am told that they changed her into her suit but did not let her swim. She just watched.
I’ll deal with that.
I call the classroom. The teacher tells me he just sent me an email, that the P.T. never showed up, and yes, Pearlsky just sat in her bathing suit watching.
I call the Special Education Coordinator at the high school, who I know well, and we get along great.
I’ll tell you up front, I’m livid. What is the one thing that Pearlsky loves to do most?
Swim.
Right. So why did they put her in her bathing suit and make her watch as the other’s swam?
She agreed that she would be livid as well. I tell her I will call the Assistant Superintendent for Special Services. I try, and left a voice mail.
Then I get back to my office and I see this email from the teacher:
I just wanted to let you know that Pearlsky was not able to go swimming today because the PT, who usually takes her swimming, was not able to make it and we did not have enough staff to safely do it ourselves. She did tell us that she was going to try to make up that time later this week with PT.
Please feel free to email me about any other swimming concerns, as I am the teacher who takes the students to the pool.
Take Care
To which I respond, with copies to the Coordinator and the Assistant Superintendent:
You left out of your note the fact that you took Pearlsky to the pool, got her in her bathing suit, and had her sit there and not swim. HOW DARE YOU TEASE HER LIKE THAT.
Did anyone look her in the eye and apologize?
Swimming is the only activity that we know she thoroughly enjoys. It is outrageous to do this to her. It also violates her IEP, YET AGAIN, to have her miss her P.T. sessions. Does ANYONE care that these mandated P.T. session are just skipped? Do I need to file a formal complaint with the state and demand a hearing? Why does this continue?
I demand to know how you intend to stop violating her IEP, stop with the repeated omissions of her P.T. (this is the fourth or fifth time this year) and I demand you NEVER tease and taunt my daughter again by getting her dressed for swimming and make her watch the others enjoy themselves while she sits by. That is just cruel.
She is owed multiple apologies, multiple P.T. sessions, and a bit of respect.
About an hour later the Assistant Superintendent called. She said they are working on the budget to solve the P.T. problem, there was absolutely no excuse for how Pearlsky was treated today, she would talk to the teacher and the P.T., and that this will not happen again.
Even though it’s swimming, neither Pearlsky nor I are holding our breath.
Livid is one way to describe it. Personally, I’m royally pissed off after reading about what they did to Pearlsky. Changing her into her suit, likely getting her quite excited about swimming, and then sitting her there while the others enjoyed the pool is nothing short of abuse. It sounds like a few people at the school are in dire need of a good kick to the shins.
Is this the same school with the poobah that won’t give her the amino acids she needs?
Don’t take this the wrong way, but brother how in the name of fuck do you get a wink of sleep at night?
You have every right to be pissed and they have every right to be flogged. Fucking a-holes.
I think you and I need to set up some sort of letter-writing service and then we could at least make some money doing this shit.
Who are these people? Do they think she’s brain dead? It feels like you hear a lot of “this will not happen again.” Do they ever say what the consequences will be for the staff who do, in fact, do it again?
Do you ever talk to other students’ parents? Do their kids get the same poor treatment or is Pearlsky getting particularly shafted?
In California we have Regional Centers staffed with nurses who act as the watchdogs for violations against the IEPs of developmentally disabled kids and adults. They are involved in the development of IEPs and dole out consequences for violations as well. I wonder if you might have something similar through social services where you live. There must be some network in place for people not in the custody of family, maybe you can tap into it.
Also in California, everyone who works with (or for) a developmentally disabled person is legally responsible for insuring that there are no violations against the rights of the people with whom they work. We are obligated by law to report every violation to the state immediately (not that most people do, program and care facilities are notoriously crap – it’s what you get when you hire totally unskilled caregivers at minimum wage). Does Pearlsky’s aide have such an obligation? Might she (or he) be willing to take on such a role and contact you and the state in the moment when a violation is being made so that it may be corrected in the moment?
I think I sound like I’m giving you the third degree, I don’t mean for it to sound like that, but this crap pisses me off, so consider all these questions to be one giant What The Fuck.
I wish every care and service provider had to spend a day as though they were profoundly disabled and non-ambulatory. No talking, no independent toileting or feeding, no self-initiated activities – not even being able to scratch an itch. Then put them in a janky wheelchair with a twisted seatbelt or a seat pad turned backwards. Maybe a wet shirt and shoes on the wrong feet just for good measure. Wearing ill-fitting helmets with worn out pads. Possibly earplugs and a blindfold too. Maybe that would weed out the people who have no business providing (bad) service and inject a extra dose of insight and compassion to the ones who have what it takes to do the right thing all day every day.
Wow, Rachel. What regional center do you have in California? Ours here in Los Angeles, appear to be slowly imploding. I just downloaded a 42-page document that goes through the future of the entitlement for our regional center — what the ongoing budget crisis is doing, what to expect, etc. I know that Regional Centers vary in their efficacy, in their ability to do what they’re supposed to do, etc. —
North Bay Regional Center has some dedicated staff. Their resources are thin but when I or another caregiver wanted to fight against bad treatment from our company or the day programs on behalf of one of the people we provided care for they always had our back.
Licencing is likewise staffed by some admirably tough nurses who can spot BS at 50 yards. They helped me fight for a lot of rights, from the right of a 70 year old to keep her teddy bear to the rights of the residents to be protected from the violent outbursts of one of their housemates.
Love, love, love that last paragraph.
I can’t believe those numbnuts put Pearlsky in her swimming suit and made her watch the others swim. it sounds like a cruel punishment. Or, if I was a conspiracy theorist, I would think that it was the devious revenge of Nurse Ratched. Well, I’m pretty much speechless at this total lack of empathy, but I’m so glad that you are Pearlsky’s Dad and you don’t let them get away with this travesty.
But she didn’t complain….gggrrrrrrr
I HATE when adults–paid, allegedly trained adults–use the excuse that our child’s disability somehow exempts them from doing their jobs. My son (autism/epilepsy) can communicate and I still remember him coming home sobbing because he wasn’t allowed to participate in some fun activity because “he wouldn’t do xyz” — did I mention he was incapable of doing xyz — and the school wonders why he hated it there…
Poor Pearlsky, that was just outright mean!!!
Whoa! That is demonically cruel. Were they aware her P.T. wasn’t there when they changed her into her swimsuit? I can understand if they thought the P.T. was delayed and would be along any moment but to know Pearlsky wasn’t going to be in the water that day and to put on her bathing suit and then make her watch her peers having fun is just plain evil. And stupid. Stupidly evil sums it up, IMHO.
BTW, you would make an excellent lawyer; you have a gift for venting your spleen in writing.
It’s one thing if the PT can’t make it and has a reasonable excuse (shit happens), but to take her the pool and not allow her to swim? There’s NO other adult to help her in the water? No aide? No other substitute? I don’t buy it. Either everyone goes or nobody goes. If there’s not enough staff, then you don’t go to the pool at all.
I’m curious to know if or how your reaction would be different if they said something like “When we got to the pool it turned out the PT wasn’t coming, so we picked straws to decide which child would have to miss this time. When it turned out to be Pearlsky, we looked her in the eye, explained the situation, apologized, and had an aide take her for a walk.” And if you would feel differently, which PART of this different story makes a difference to you?
Actually, if Pearlsky did not get to go swimming, but did something else she likes, then I would be upset (potentially) but not livid.
It is how she was potentially made to feel, the decision to have her sit and watch others, that had me incensed.
WHOA…this color change is FUNKADELIC. I thought I was at a gaming site I frequent for a second.
Do staff not have any common sense?
I volunteer with developmentally disabled people in a physical activity program, and often we take them swimming. There are very few kids in the program who *aren’t* fans of swimming, and several who are at their most engaged and enthusiastic in the pool.
Occasionally, we are unable to take a particular participant swimming, typically because someone (parent or caregiver) forget to pack their swim stuff. I always feel bad when this happens to a kid who really likes swimming.
My usual reaction in this case is to apologize to the person and explain why they can’t go swimming. Then I sit with them on the side of the pool and interact with them, or if they seem to be bored or distressed we head somewhere else to do something more fun (a couple times we went into the equipment room to play with random equipment together).
Stuff happens, but you have to have empathy. At the very least, apologize to the person adversely affected, and do what you can to make it up to them.