Head implosion in 3 … 2 … 1 …
Some days are better than others, and then today happens …
The Assistant Superintendent for Student Services of the school district calls (and wakes me up). She tells me that PT and OT for Pearlsky are all scheduled to start. She continues by telling me that she absolutely stands by the need for compensatory services (that’s the law, does not matter how she feels) and then says …
I think it best to just continue her services over the break between camp and school. Do you want those services at the school …
and I cut her off with laughter
Are you asking me if I am going to insist that you open the school, pay a nurse, an aide, the transportation company and the therapist for multiple times over the break?
If that’s what we need to do.
No, it’s fine, let’s do them at the house.
This violates my very strong sense of “my home is my castle, safe from school, therapists, and others” but it will work best for Pearlsky. And the nanny can learn some exercises.
She then talks about the reason Pearlsky cannot go to the pond. The head of nursing (school nurses, hmmm, what do I think of them?) claimed there were “toileting” issues. In a moment you will see my email that goes into it. She then tells me that they worked out whatever problems and Pearlsky will go for the last two trips. She also questions if people really knew that Pearlsky needed watersports.
Within five minutes, the teacher calls. He tells me about the pond issue, and PT. As we are talking, my cell phone rings, it’s mom, from her cell. I know it cannot be good. I cut off the teacher …
What’s the matter, mom?
Remember, only recently it has come to light that dad cannot be alone.
They are trying to hospitalize me right now. This specialist thinks the problem is much worse than the others did.
Can you get the IV at home like I did a while back? That can at least buy us a few days to figure this out.
I am trying, I’ll let you know.
I call the teacher back and wrap up. I get Pearlsky off to camp, reminding them that I need to pick her up for the 2:00 social worker appointment for guardianship.
I get to work, and write the following email to the Assistant Superintendent:
Subject: Follow-up to phone call, reasons and rumors
Thank you for the call this morning, I want to follow-up and also keep Pearlsky’s mom in the loop (she is running a program in Italy at the moment).
It is great that PT and OT are starting. Also, covering the camp-to-school gap in August with the services is a great solution, and as I said, it makes sense on so many levels for that to happen at home. Thank you.
As for the Monday trips … a couple of things to clear up.
The teacher and I had a great conversation about the trips before camp started. We spoke about the “toileting” issue. I told him how I do it, after all, I take Pearlsky anywhere. I told him I have a roll up mat that I put on the floor of the van to change her when needed and that the transport van would work fine. I also told him I have used it in small public restrooms on the floor. We discussed the need to be creative and anything can be done. He agreed and it was all set. The teacher was fantastic, willing to “figure it out” with my approvals (I gave a blanket “if her aide thinks it would work, go for it”), and we were both happy.
Then the head of nursing called. She expressed health and safety concerns, not well defined, and I agreed that if the nurses were concerned about health and safety then Pearlsky should not go. I also clearly said that she, Pearlsky, would need to do other fun water things. That is what my understanding was, that it was a health and safety decision, and that Pearlsky would do other “equivalent” things.
Two school people, neither of whom deal directly with my daughter, have told me “off the record” that she does not go to the Pond because J (the other severely disabled student) does not go and there is only one nurse. I do not know if that is true and that is why I keep asking for clarification. The toileting issue was dealt with in the very beginning. Nursing, for reasons I do not know, has stopped Pearlsky from going.
Instead of the Pond, for whatever reason, there are a host of other activities, none of which were chosen. There is the school pool; I understand that it is well booked, though. How about the local Pond? It is walking distance (we do it all the time), Pearlsky has been in it and on it (a couple of times) and it offers everything necessary. There are places to change her within 10 minutes, including her own house! My fury has been that the only option has been the grocery store or the classroom.
On the general claim of mine that everyone knew how important watersports are to Pearlsky …
Pearlsky was not going to the State Camp last year without an emphasis on the watersports. Here are the two emails that made it happen, J and A were copied on all, R runs the camp there:
I notice on the schedule that came home yesterday that Pearlsky has the same amount of time in the water as last summer. It was my understanding that she would have more … did I miss something?
Pearlsky can go to the pool when ever you want I spoke to Pearlsky’s 1 to 1 so you can decide what activities you want her to miss and she can go to the pool or water front anytime. R
From an email from J to Pearlsky’s mom and me, copied to you, A, and others on 7/14/2009:
“I observed Pearlsky at the waterfront with a “non stop” smile as she was assisted onto the boat for a ride with several other students and staff. You were right when you said she loves the waterfront activities which R has expanded in Pearlsky’s schedule.”
In a response to all:
“It is wonderful that R has agreed that Pearlsky can spend additional time at the waterfront and the pool, it does make it a much better experience for Pearlsky.”
And in a post camp August 2009 discussion with all (from me):
“The aide was allowed to take her to the waterfront or pool at any time and did when it was possible, but this was not everyday, nor as often as would be desired.”
Again, I greatly appreciate your call this morning. I am thrilled that PT and OT are re-starting and will continue through the start of school. I also hope this email clears up what my understanding was from the nurse’s call, why I still don’t get what the issue was with the Pond, and my frustration with the alternatives.
THANK YOU for your time and consideration.
Punchline? Nursing lied to the administration and Pearlsky does not go to the Pond, to the one thing she would enjoy, because they don’t want to hire a second nurse for five hours a week.
I send that … and mom calls.
I only have a second. They are letting me do it on an out-patient basis, I am running home with your dad, I need to get some pills and take them before noon, then get your dad to his oral surgeon. I need to be in the hospital 7 tomorrow morning for a PICC line (long term IV line) and everyday for two or three hours for the IV for at least two weeks. Can you call my sister, she is panicking about this, and what about your sister? And I need to cancel an appointment tomorrow with the VA. They also said if the redness spreads or I get any fever I must go to the ER immediately and be hospitalized. I don’t know if I can handle this.
Then I do it. A sentence I never wanted to say to my mom.
Mom, I’ve been hiding a lot from you the past 18 years. Welcome to my world, I know what you are going through. Can I teach you how to do it?
I love you.
First, dump on me the piddly shit. I’ll call your sister and mine, that’s easy. Do not think about tomorrow or the future, we will do that after the immediate crisis. Think of the next four hours, what absolutely must be done and prioritize. You need those pills, dad needs to be fed and get to the oral surgeon. Then the next four hours. Don’t think of anything else, small blocks of time, prioritize, do it. Dump what you can. When you hit a four hour window that is empty, probably around dinner time, we will then talk about tomorrow and next week. Eighteen years, mom. Four hours at a time.
Got it. Can I call you in four hours?
Mom, you can call me in three.
Pearlsky’s nanny is on trial. As a juror (thank god for the little things). So I cannot even figure out how or when to get to mom’s (a six hour drive). I need to find if there are portable Hoyer lifts … how do I lift Pearlsky when I am there?
Pearlsky and I had the second appointment for guardianship. Mom called during the appointment, she is home and things are barely controlled for the moment.
I get along great with the hospital’s Patient Relations woman and she is interested in the guardianship travails, so I sent the following email when we got home:
Concerning guardianship, we saw L the social worker today. Without offering an opinion, I will tell you how it went today in case there is anything the people working on these things can use.
I left work at 1 to get Pearlsky out of camp. We got to the hospital at about 1:40 for a 2:00 appointment, leaving the car out front with valet parking. We got to the desk at about 1:45. The woman at the desk said that we did not have any appointment scheduled. I informed her (with a smile) that she did not want to see my reaction until after she doubled checked. She left, came back, and said “L will be right with you.”
L did not interact with, nor talk to, Pearlsky. She asked me three questions … Pearlsky’s middle name, her mother’s name, and would I be taking her to the court with me. She signed the paperwork and gave it to me, and we left.
Parking was only $6.00 since valet did not have a chance to take the car out of the circle. Even though camp ends at 3:00, I did not bring her back since they are not at a car accessible place at the moment, so Pearlsky and I went home. I should finally get to work around 3, so it was a two hour event.
Questions someone may want to ask, I am not asking, I don’t need the responses, at least not for two years until it is my son’s turn … why didn’t the social worker see us when we saw the psychologist or the doctor? Why did we need to come in at all?
Hope all is well and you are enjoying the summer.
The Patient Relations woman then called me. Great conversation and when it comes to the hospital and guardianship issues, she told me …
Because of you and Pearlsky, the hospital has started a committee.
I told this to the love of my life, and she said …
SD, they call that a lynch mob.
It’s 4:30. Gotta run, mom’s on the phone …
Four hours at a time… best advice ever. And I love the lynch mob comment. Seriously funny 🙂
I could never be you. I wish I could, but I could never pull it off. The good news is that I will one day run the entire planet…if what they say about the meek is, indeed, true.
But having your brass balls while maintaining a sense of humor, dignity and grace?
Not in a million, trillion years. Seriously I do not know how you have managed to keep it together like you have for 18 years. Not saying it is easy for you, I assume it is not. Note that I say assume because I never, EVER, would say ‘I know what you must feel’.
That is, and always has been, stacked bullshit. No one can know how anyone else REALLY feels. They can only empathize, theorize and [insert some other witty word whose ending rhymes with ‘eyes’ here].
But there is something about your personality, some intangible, that gives you access to an inner strength that I have only seen in a select few human beings, and that I do not, unfortunately, see in myself. Though I keep looking, I do keep looking. Maybe it’s hiding behind my spleen.
If I ever need to kick out a negative thought and try to think positively, to remind myself about what I should aspire to and to remind me what is good in men, I only need to come here, put on my glasses, and read.
Yes, there are both portable Hoyer lifts and also semi-portable (setup takes ~15 minutes) track lifts – Gantry hoists – readily hired in most metropolitan areas. Mobile hoists are hard on folk with bad backs and damned near impossible to use on carpet (at least with a lardarse like me) unless there’s a second pair of hands helping out so if you’re expecting to stay for more than a couple of nights, get the gantry – is what I do when on holiday.
I use Liko – they’re popular in the UK, I usually borrow something a lot like this, which works great.
4 hours at a time. excellent advice for just about everything.
Becca…Holy cow! Thanks for that link! to the lift I have never seen anything like that before. It’s making me think….
Claire – you’re welcome! Weird thing is, they’re currently really underused, given how much of a brilliant solution they are. I had a static gantry for just over 18 months (just switched to a very swish track system, thank you NHS) and they work great, no permant anything, no specialist tools to install, no fuss and no mess. And they really are SO much easier than mobile/Hoyer type hoists which I basically hate. Usable in much smaller spaces, too.
I’m going to try and get some pictures of my new system online sometime ‘cos it’s really clever – whole room coverage for my bedroom and shower room, joined by a straight track across the hallway. Personal monorail!