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Anniversaries [Oct. 24th, 2007|06:41 pm]
[music |Radiohead - Bodysnatchers]

Last weekend, my brother, mother, uncle celebrated 13, 30, and 1 year anniversaries.
I'm very proud of them.
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Guardianship [Oct. 24th, 2007|06:37 pm]
[music |Radiohead - Bodysnatchers]

For awhile, my grandparents were my guardians. Once in awhile, they would sign a school permission slip and circle "guardian" where the signature indicated parent/guardian. I usually thought that was /too/ much information. In that town, it was unusual for students to have a guardian, so when a classmate saw my slip, he asked with some degree of awe, "Do you have a guardian because your rich?" - Ha! As if I had a body guard or personal assistant to take care of the field trip forms that my millionaire parents could not be bothered to sign.

Anyway, now Phil is under Linda's guardianship. This is a good thing, but sad in a way. When the some 18 year olds were getting ready to go off to college at the end of the Summer, Phil was being sent away to a residential program to deal with a couple of very challenging issues: mental retardation and mental illness.

I don't think of Phil as mentally retarded or mentally ill. In fact, his doctors would not say that either. Granted, he is on some serious drugs to help keep him safe, but for the purposes of the state deciding that Phil needs guardianship, he is MR and mentally ill. Linda had to actually jump through a few hoops to get the right wording on the guardianship form. If he is mentally ill and mentally retarded, rather than mentally retarded and mentally ill, then we have to continually petition for guardianship.

It was easy. It was hard. Linda put in a vast amount of time, mostly to get the paperwork right. And it is paperwork. Paper only. No digital record. His case had duplicate files, but not entirely duplicated. There were countless times that the bureaucrats essentially gave her the runaround (not my job, can't do that yet, wrong form, wrong line) -- but of course, not consistently. It turns out that very few (including the lawyers , schools, DMH, DMR) understand the law.

Here's the biggest one.. we can't begin guardianship proceeding until he turns 18. Well, how does that make sense? If we're not his guardians when he's 18 then he could theoretically decide to stop taking meds, leave his school, leave home, and be an independent adult. So, it turns out we could get (temporary) guardianship before he turned 18. The rest was relatively simple.

Also, since Phil wasn't present for any of this, he didn't know/understand what event was taking place.

Thank god for Linda.
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Catching up... [Oct. 14th, 2007|11:55 am]
Lost another pair of glasses.
Phil is out of the mental hospital and in a residential program.

Interesting ride on the way to work the other day.

I sat with Taalib and we were chatting about welfare, affirmative action, racism, etc.
After a couple of stops on the subway, a weird-looking man was trying to squeeze in and began yelling at a smallish, young woman of color about "the rules of the train." He was definitely crossing the line from ordinary, commuter rudeness to outright harassment.

I was about to say something, when the woman started giving it right back to him and telling him how childish he was acting. That seemed to be it, except I was really angry about how inappropriate this guy was acting. I made a few comments to Taalib about how this exactly the kind of ignorance that causes so much of trouble we had been discussing..

I still kept my eyes on where the two were standing. The man's eyes were clearly tweaked from either drugs, emotion, or mental illness. I watched him for a few more moments and noticed that he had begun staring at the woman. His look was baleful and meant to intimidate her. I couldn't help myself, so I raised my voice (the "Daddy voice") and told him that was enough. Stop looking at her. He tried to make some excuse about doing whatever he wanted, but, still angry, I cut him off and said that, no, he couldn't do whatever he wanted. Taalib started in on him, and pretty soon the whole trainful of folks was staring him down. He got very quiet and looked away.

Taalib moved around the woman so that she was shielded from the man. An old woman called him an asshole. After the young women thanked us, she said all you can do is laugh. I agreed, and suggested that laughing was better than the alternative which would be to throw him off the train. A gentleman behind me said, "I think there would be a rush of people who would want to do the same thing." It felt satisfying being part of an anonymous collective thinking as one, and doing some good.

Nothing more happened. Everyone disembarked at their respective stops. Taalib and I resumed our conversation about welfare and affirmative action. It was actually a good start to the day.
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New Glasses [Mar. 21st, 2007|08:53 am]
[music |Bog A' Lochain by Mary Jane Lamond]

How about that.. I can see better. (same rx, just not all scratched up)
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Independent Living [Mar. 21st, 2007|08:21 am]
[music |Talking Heads - Blind]

Linda drove Phil to a new social group at U Lowell last night. Phil feels very strongly about wanting his independence, so we look for every opportunity to get him the appropriate services.
And then there are times we recognize how much of a challenge that could be.

Example: after coming home last night, Phil went upstairs to use the bathroom. After a while Phil slowly walked into the living room and announced, "The water from the toilet won't stop." And then, with a barely suppressed smile he added, "I'm serious"

After wading into an inch of water on the bathroom floor and unclogging the toilet, we all had to deal with the situation as quickly as possible. Phil was helpful, but kept interjecting comments like "I wasn't trying to do it." It didn't help that he would spontaneously burst into laughter as Linda was frantically cleaning up water that had leaked through into the kitchen.

Finally, after disinfecting every surface, we had a talk with Phil. He was explaining how he thought it was funny when the water overflowed and kept waiting for it to stop. He must have watched the water for quite a few minutes before saying anything.

The hardest part of the night was explaining what went wrong and what to do differently next time. He couldn't hear us say that the his mistake was in not telling us about the problem.. that watching water overflow onto the floor for *minutes* was wrong. He kept getting stuck on the idea that we were mad at him for causing the overflow (which, of course, we were not).

On the plus side, the bathroom hasn't been this clean in some time.
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'Retarded' Objections [Mar. 18th, 2007|03:08 pm]
[music |Deerhoof - Believe E.S.P.]

Linda wrote a great letter to , and got a great response from the Globe's Miss Conduct.
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What is the moon made of? [Mar. 8th, 2007|06:55 pm]
"Isabelle, you know know that Philip is a big boy and understands so many things, like the moon is made of cheese, and ..."

"Daddy, the moon is not made of cheese!"

"Well, what is it made of?"

"The moon is made of moon."
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Sweetie Pie [Jan. 26th, 2007|10:59 am]
Izzy likes me to play with her as the "sweetie pie" character that she made up. I have to talk in a little-girl's voice and do some of the following

- pretend to struggle with her games ("I'll help you Sweetie Pie. Here You can do it.")
- get frustrated and require reassuring little hand pats from Izzy
- pretend to dislike broccoli and require encouragement to finish my dinner if I want dessert
- act scared of the dark and ask for help
- struggle reading bedtime stories, "No, that's not a deer. That's an antelope sweetie-pie!"

The funniest part is when Linda walks into the room to talk to me and get interrupted by Isabelle who tells her, "That's not Daddy, that's Sweetie Pie!"

Sometimes I do get to play "Daddy" too.
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Phil's Trifecta [Jan. 26th, 2007|10:34 am]
Phil has had a run of bad luck, and is at a very low point.

Last Friday an old friend from a previous school recently stabbed another student to death.

He is definitely in shock over this, and has been a bit depressed (which never really seems to happen as far as we can tell.)

He's active in basketball, bowling, and martial arts. Last Monday he jumped and landed awkwardly during martial arts class and chipped a bone, and damaged some tendons. Since he has a hard time following directions and refuses to listen to his parents about how to take care of his foot, the doctor had to put him in a cast up to the knee.

The cast has made him more miserable.

All of this has caused him to harbor a lingering cough for a week now.

On the plus side, he seems to be getting along better with his mom. And we've been spoiling him with tv, games, and desserts.
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A Giant Lives Here [Dec. 19th, 2006|09:48 am]
This morning:

Izzy: Daddy's a giant
Mom: Why do you say he's a giant?
Izzy: He has giant teeth and he has giant toes and he has a giant head.

Then she gave me a running hug and kissed me on the cheek goodbye as I left to catch the train.
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