Water therapy, passports, and hell
I was doing some traveling recently and got a last minute invite to meet three great ladies … how could I refuse? Check out Claire’s blog for some insight (and pics) into our visit, with Sophie, at Niagara Falls, the Canadian side!
It was fascinating spending time with Sophie and the inevitable comparisons to Pearlsky. Absolutely both are severely disabled, both require total care, and both are so incredibly different. Sophie has some definite communication and can partially feed herself, Pearlsky can do neither. Pearlsky is physically in better shape and does not need the same amount of “eyes on” care. Each has a definite personality and each interact with others, but very differently. In my mind, I would like to “take one from column A and one from column B” (am I showing my age with that analogy?), but you can’t do that. I learned from being with Sophie, who is a great young woman. Won’t comment on Claire … you decide for yourself!
Pearlsky could not come on the trip, she cannot cross the border, nor can Sophie. But before this, I have been trying to figure out how to get Pearlsky a passport. Why a passport? It will allow us to go on a cruise, cross the border, escape the tea party when they take over the country, etc. Everyone should have a passport, and that includes Pearlsky.
Sounds easy, no? To get a passport, one must prove identity and residence to the government (and homeland security). Pearlsky has neither a photo ID that is valid as identification nor proof of address. No, she does not get a utility bill, etc. So I started thinking … note that this is going to be a process; I will be blogging about it as we go along.
I decided to try to get her a state ID first as I would rather deal with the motor vehicle bureau (MVB) than homeland security. We have a state ID that is often used if you don’t have a driver’s license and want to buy cigarettes or alcohol. Yes, it is a valid sin-ID.
I called and the MVB would not accept Pearlsky’s car handicap placard that has her photo as a photo ID. Why? Because they issued it, and they don’t trust it. Yes, really. So I gathered what I had … a photocopy of her social security card (can’t find the original), a letter from the social security administration that had her number and her address, her certificate of blindness with her address, an original birth certificate, court guardianship decree, and a DNA sample (well, she had drooled on some of the papers). The woman scanned all the items in, frowned about the lack of original social security card, but let it slide … and we left with a temporary state issued photo identification card! The real one should come in about a week. So we have a government ID with photo and address. Step one towards her passport.
Next step, a valid passport photo.
Pearlsky has one more year in school and then she moves into the realm of adult services. Because of the nightmare at school this past summer, I want to move her out of the high school and into an adult day program early, and the school district has agreed to pay for it. I have a list of six programs to check out, all adult day programs within reasonable distance. I have been told (read “warned“) that I will hate two of them but need to look at them so I can honestly reject them.
Armed with a second set of very wise and experienced eyes, I went to see the other four this past week. As luck would have it, the first was simply horrific. And it was NOT one I was warned about …
I will blog about these over the next few days. I need to figure out how to describe the first visit without seeming classist, racist, ageist, cleanliness-ist, or an asshole.
Damn, I wish this blog was anonymous.
Oh, wait …
“Damn, I wish this blog was anonymous.”
It certainly has it advantages, don’tcha think?
Make a documentary: “My Odyssey: A Search for a Clean Place for My Disabled Daughter.”
The scary part of your post is that your state has a sterling reputation for disability based services. I for one am deeply troubled by the lack of social supports and services available to adults with profound physical and cognitive disabilities. This is a human rights violation people do not want to tap about.
“Because of the nightmare at school this past summer”
“Nightmare?” A bit mild, no? Surely there are stronger words? Though not strong enough…
So exciting that Pearlsky is getting her own passport! We got one for Claire a while back. Since I’m Canadian, we figured it was a necessity if Claire ever wanted to visit her grandparents.
We were lucky to find a very kind, very patient passport photographer. It was tricky getting the background “right,” but we ended up draping a white sheet over her car seat, and it worked like a charm.
Good luck, and happy trails!
Glad you had a good time, the photos are adorable. Good luck with the passport!