Behavior

[Jeanelle]

My name is jeanelle and i am the mother of a 27 year old son jerrod who has cri-du-chat. we have been to several 5p- get-togethers. Jerrod lives in his own appartment with 24 hour staff and also works in a recycling center with help.

Behavior has become a problem. He hits, kicks, stomps on feet and throws things. he is about 5’7" and at age 27 is strong. the staff people are not always trained in how to handle this so therefor they become afraid of Jerrod and then don’t want to work with him anymore. he now knows that if he has bad behavior he can get anything he wants, such as going home from work and watching tv.

we have some problems at home, but not as bad as at work. we have 4 grandchildren and we get along fine and i am not afraid for the grandchild when Jerrod is around.

we have alot of trouble with frustration and also understand consquences. He does speak quite well, but always understood. also has a hard time understand his own emotions and telling someone about his emotions.

i believe Jerrod is a good kid and is not being understood by staff. we need to bring information and help to staff about how to control behavior of people with cri-du-chat. PLEASE IS ANYONE HAS NOT PROBLEMS OR HAS ANY IDEAS PLEASE HELP.

Those of you with smaller children keep this in mind, as we had NO Problems with behavior when Jerrod was living at home and younger.

Thanks
Jeanelle

[Damo]

Hi Jeanelle,

I do not have any answers for you I’m afraid. But what I am going to do is contact a clinical psychologist who is part of our group here in the UK and ask him for advice. He is currently working on a behaviour project for children and adults with CDC and other rare syndromes. So hopefully he should be able to provide us with some advice.

Best wishes
Damian

[dk1]

Hi Jeanelle,
Wow, reading your story is exactly what I am going through. I have a 28 year old sister with CDC and in a similar living situation. (A CILA - Community Integrated Living Arrangement) She too has 24 supervision and M-F attends the workshop provided through the agency. Recently she has been exhibiting an increase in self-injurious and aggressive behaviors, despite the medication she has been placed on. The psychiatrist has tried several anti-psychotics, anti-anxiety and anti-depressants, all of which don’t seem to help or have increased the behaviors. She is generally such a happy go lucky person and it breaks my heart to see her like this. The behaviors come on without warning and for no apparent reason, but only last moments. She too is very strong and has caused some bruises and bite marks to not only herself, but also to her staff and housemates. I’m at a loss and wonder if you have tried any medications or have heard any possible solutions. If you do, please contact me and forward any further information that you may obtain and i promise to do the same. Best Wishes to you! I know how you’re feeling!