Pearlsky has a year and a bit left of school until she starts getting state services instead of school. Wonderful. I freaking love change.
The school needs to do a psych re-evaluation (for the first time) to pass along to the state and we will discuss said evaluation at her next IEP. To prepare, I am given the Vineland-II Adaptive Behavior Scales booklet to complete. I was then asked to meet with the school psychologist which I did today.
I brought the Vineland booklet and asked if this was a test. She assured me it was not. As a matter of fact, it has no “right” or “wrong.” I asked again to make sure, and she said it absolutely was not a test. I then asked her what I should fill in on the front of the booklet where is says “Test date.”
I knew this meeting was heading for trouble.
The booklet was a waste of everyone’s time, but I had to fill it out. You can see excerpts of it here, with my answers. How do I tell if Pearlsky “listens,” I know she hears? Unfortunately, the state requires everyone to fill this out, just like some of the forms for guardianship, there is no checkbox on the cover for “Too Retarded For This To Be Applicable.”
She then says to me “I saw Pearlsky yesterday and she was working with her switch to continue the music.” I asked if she made the 80% goal, she said Pearlsky may have. I then asked “If she did not hit the switch at all, what would that tell you?”
She would not be reaching the goal.
The goal of accuracy?
What if she did not like the music. She would be 100% accurate, no?
She just stared at me.
I told her that for 16 IEP’s, the first goal has always been communication and the classroom completely failed. Worse than that, they never took a suggestion from me. I further explained that switches are meaningless unless you know intent, and with this population you do not know intent unless you have another form of communication, or use operant conditioning. At which point she twitched and wrote some notes. She asked if there was a solution, I told her that 16 times I have offered several.
Why don’t you just put a switch in front of Pearlsky and ask her to hit it. It does nothing, but you encourage her to hit it anyway. Often. The only “intent” is the physical action, if there is one. Then you practice “Pearlsky, don’t hit the switch.” Then you mix the two. Maybe it takes years, maybe days, but you know the accuracy and you are communicating, no? Then you can say “Hit the switch if you want xxx.” You will know the action is purposeful, and intended.
“Good point.” And she scribbles some more notes.
She then asks me “Do you have people to be with Pearlsky all the time?”
Do you have people to be with Pearlsky all the time?
Is this a trick question to see if I ever leave her alone? Of course there are people with her at all times.
She stumbled around and I still don’t know what her point, if any, was. I told her that I have nannies for some periods of time, and I am with her the rest. She scribbled some more notes. They were hard to read upside down, but I think she wrote “father is an asshole.”
The we moved on to the future. “What do you see for Pearlsky after school?” She meant after Pearlsky turns 22 and the school district is no longer responsible for her. I responded …
Actually I am hoping for a meteorite to hit the house while Pearlsky and I are sleeping and to take us both out, along with the house. That is Plan A.
Again with the damn scribbling. This time with an upturned brow.
I then added …
Plan B is finding an adult day program so that her schedule is basically the same, where she would get socialization and physical therapy somewhere and live at home.
Then some silence.
Are you going to have her taken away from me?
No, but I wonder if you have all the types of help you need.
Are you a single parent of two severely disabled children, one who lives with you, and you need to fight all the time with the school personnel who don’t have a clue how to interact with her, with nurses who refuse to give her the only medication that keeps her alive, people violating her IEP at least monthly, living in a state where it is illegal to buy wheelchair parts and your daughter has been bedridden because of it, where the other parent is basically absent, where you are doing the best you can for your daughter, keep your company going, have a semblance of a social life, and take samba lessons?
Again, a blank stare and some scribbling.
If that is not you, then don’t presume the types of help I need. You don’t have a clue and never will. You now know my Plan A and Plan B for after school. Plan C? I’m not sharing.
Then there were forty-five minutes more of this. She will be at the upcoming IEP meeting. I can hardly wait.
Speaking of waiting … look who is back! Claire and Sophie in “Life with a Severely Disabled Child.”