Subject: Lesley's Behavior

So here's an update on Lesley:

Since moving to the group home, she has been doing great in her day program. The teachers have a great attitude and really are attempting to set up a useful, practical and apprpriate program for her. It's all still new, so only time will tell. She is beginning to work on a picture board and the SLP plans to gradually introduce an alphatalker or similar device, once she starts to use the picture board appropriately.

The house situation is another story however. They are simply not used to a person like her. They deal primarily with CP and very inactive people. It is so upsetting to see their lack of patience. It's not that they dislike her, they just seemed ill equiped to deal with her style of living. She is young and active and curious as a toddler. Since moving, her bahvior has totally regressed. SHe is hitting, biting, pulling. She bit me so hard last week that she broke the skin (And this was through my sweater) I really feel it is a combination of confusion, frustration and lack of physical affection. SHe got so much of it at Woods that it must be hard for her. Now, mind you, she is not unhappy or mistreated--just to clarify that, but her behavior is horrendous. The day program has such a great attitude and her behavior is much better there then at home. My mom has aniother big meeting next week and there are a lot of points she is going to discuss. Just when things seemed great.....At least the day program is good and my mom is going to start looking at alternative living arrangements. It mkaes me really upset for Lesley. I just want to find a good place for her to be. But right now our main concern is her behavior and what is causing her to regress so significantly. It's times like this when I just want to win the lottery, build an angel proof house, and hire people to hang out with her round the clock. Well...we can dream right? --

Julie Hyman

Subject: Re: Lesley's Behavior

Julie Hyman wrote:

> > It's times like this when I just want to win the lottery, build an angel proof house, and hire >people to hang out with her round the clock. Well...we can dream right?

> Julie Hyman >

I know what you mean. We've been going through med changes for Jennie and she has been acting pretty weird! She bangs her hand against walls, on tables and on the bus windows for no reason. She is also VERY tense around the mouth. She seems to want to burst from her skin. I too wish I could build a special place just for Jennie and kids like her. The stress level at my home has been incredible. We see a psychiatrist Dec. 11th to evaluate the med situation. I can hardly wait.

Janice (Jennie 16+) Grafton, WI

Subject: Re: Biting and +/-

This biting thing is a new aspect of Lesley's behavior. I recently said she was biting/hitting everyone in sight, due I thibk to frustrtion and confusion. I think she is getting the idea that she doesn't want to hit people and they don't like it, but now she is biting, not others so much, but herself. Mainly her clothing and she is hitting out less, but I don't know which is worse. The biting and hitting isn't even the most upsetting part. What is most upsetting is the fact that something is bothering her so much that she is doing this. Given, she is still adjusting to the new home etc, but it is upsetting. She is at the point where she is even biting me. She actually bit at my sweater and broke skin. It hurt like *&#! 21 year old teeth are no joke. It's times like this when I wish she could communicate emotions and abstract concepts like I am homesick or I miss Maxine etc...

Julie Hyman

Subject: Update on Lesley

Hi Everyone,

Well, dare I say it? There is good news to report from teh world of group homes and day programs....Today was the big IHP meeting with my mom, the state, the group home and day program. Now, sit down for this one....The state of NJ case worker backed my mom up on every single point brought up at the meeting, including points that will cost the state money. Am I dreaming, please don't wake me :-)

The quick run down is as follows:

1. Behavior: The caseworker from the state (who has been lesley's CW for 15 years) was very displeased with the behavior of the house staff, not of my sister. She stressed that there was to be no negative reinforcemtn, but rather positive reinforcement and redirection at all times. For example, the staff complained that in the bath Lesley splshed around to much. Sally, the CW, said quite simply, AS people love water. It's in the literature. Give her an empty cup or container and I guarentee you she will not splash. Simple, huh? She also agreed that Lesley needs more activity and the state is paying to assign a staff member to her on a one to one basis every day for a couple hours. It was also stated that Lesley was to be given more physical exercise. Sally pointed out that hyperactivity is also in the literature and that exercise is often helpful. Big gold star for Sally Moser (And I don't give those out often)

2. Communication Therapy. The Speech Therapist is ordering the Alphtalker! She is working consistently with a picture board and has stated that beyond the shadow of a doubt Lesley understands the power of communication, is capable of it and should be given the tools to use it. She said Lesley is doing great with the picture board and she has a good feeling about the alpha.

Sally was adament that all the above details be written into the IHP and be strictly adhered to. She also wants the group home to document every instance that they are understaffed. She stressed that Lesley needs physical affection and and that physical contact is to be a documented part of her program. Sally also noted that in her experience of 15 years of Lesley (pre and post dx), Lesley always responds beautifully to kindness and affection as opposed to sterness and negativity (Then again, who doesn't) The important thing is that the state is on our side. If the house doesn't work out, at least ew have a chance at a positive chnage. I think the head of residential services of CP Options (Her home) got the idea that Lesley has not been cast into the world with no allies. She may not be able to speak, but she has a mother, sister and State Caseworker who certainly will.

For me, the best thing is that I feel I can relax a bit, in that her teachers are doing what I was hoping they would. My mom made a realyl good point. Lesley doen't hit her because she doesn't try to teach her. And she responds well to my mom. Lesley only started being ornery with me when I became her "teacher" and stopped being her sister. My mom said, just enjoy her. There are people paid to teach her. She doesn't need another teacher, she needs a sister. For once, we agree. And maybe I don't need a student just now. Someone made a good point once about just wanting to enjoy their child, not teach them. Of course I'll reinforce everything, but as Audrey Angelman said to me, "Lesley is lucky to have such a wonderful sister. Your playful relationship with her as children probably helped her reach her potential and fulfil her happiness more then anything else did." And maybe that's all she needs now. A playful sister.

Okay, I've gotten a bit longwinded here. I can't help it though.....Maybe this will work out okay afterall. Hope you're all well.

Julie Hyman New York City

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