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Lennox Gastaut

Sat, 03/05/2005 - 06:32

Topic: Family & Friends

Hello, I am new to this sight. I came here trying to find some help. I am a caretaker of a 16 year old girl who has lennox gastaut syndrome, is blind, and mentally retarded. The problem is that I don't know what I can do to keep her occupied. Her mother does not know what to do either. She basically just walks her around and continuously switches activities every couple of minutes. We do not know how to keep her attention at all. She cannot talk or see, but she can hear. The activities that her mother does with her are just walking her around, rocking her on the recliner, letting her play the piano, listening to music and books on tape, and eating. She gets bored with these within a few minutes and gets very aggravated if the activity is not changed. Does anyone have ANY ideas as to what we can do with this child? She seems to be just existing and we want her to have some purpose in her life.

Comments

RE: Lennox Gastaut

Submitted by bluewater1954 on Sun, 2005-02-20 - 06:21

Welcome!I am so happy that you have found this forum. I do not have personal experience with a child like yours with such unique challenges, but I am in school to become an expressive therapist. Most children respond to the senses they have in order to communicate: perhaps sign language is a possibility? I also know that animals are a comfort; any chance that a companion dog would enhance her quality of life and possibly lengthen her attention span? Also, I have seen some incredible dance studios for children with unique challenges. Does she enjoy being with other children? Another option may be finding a support group with other children with similar issues. Good Luck, and visit us often. You are not alone. I hope this helps.

RE: Lennox Gastaut

Submitted by mijanat on Sun, 2005-02-20 - 10:05

Hi-First I would like to thank you for caring for this young lady, she is blessed to have you. I have a 15 yr old son with LGS. The blindness must add a huge set of challenges. I thought I would tell you some things my son enjoys: We purchased a pass to swim at a local hotel (county MRDD pays most of it). He loves to sit in the hot tub!We put a hammock-type swing in our living room-he really enjoys swinging around in it and I think it makes him feel secure because it wraps around him.He loves to go for rides in the car-especially if we stop and get him a pop or fries at McDonalds.We have a music therapist come to our house once per week (paid for through a grant)He also has speech therapy 1 1/2 hrs per week. I also wish that he had more purpose in his life, but he does seem happy. Does the girl you care for go to school? My son goes to a MH class for 4 hrs per day.

RE: RE: Lennox Gastaut

Submitted by AmyQ on Sun, 2005-02-20 - 10:56

My son is only three, but he has the early signs of LG. All of the neurologists believe that the seizure patterns are leading up to Lennox Gastaut. My question for both you (and the young woman's caretaker) is were they mentally impaired as babies and young children OR have the seizures progressed to such a point that your son has these new challenges? We already see regression with our little boy, and I am very frightened. I'm trying to get a grasp on my son's future.Thank you so much,AmyQ

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