Problems my sister has, anyone have a name for it or know someone like it???

Question

my sister will be 18 in a few weeks...when she was born diagnosed with benign cogential hypotonia (low muscle tone) and for some reason is neurologically developmentally delayed. she had years of occupational and physical therapy. and is in special ed. i think she is very smart, but the way my parents have raised her and secluded her has turned her worse than she could be i feel.

my dad does everything for her, runs her bath, gives her her medicine, clears her plates from the table, etc, when she is VERY capable of it; she voluntarily does it for relatives; helps them out at home w/o being asked.

she doesnt process things welll and is disctracted easily and takes medicine for ADD. but if shes told to get dressed she wont so she is constantly yelled at. i dont know why she doesnt get dressed or do things in an even somewhat timely manner, but itll take her 25 min to put clothes on most of the time. does anyone have a child like this? with this sort of behavior?

Answer 1

for starters your parents need counseling.i have a 5 yr old child that has cerebral palsy,minor,and she's developmentally delayed..she doesn't like doing things for herself cause she knows that everyone can do it for her.i took her to a therapist and the therapist told me she's ust to getting away with things and thats got to stop.parents have a way of showing their anger towards a child with a disability cause they are upset with themselves cause they think its their fault the child has these problems and in return of"helping"them they want to do things for her.i had to get some counseling cause if i went and told my child to do something that i know she's capable of doing by herself i would feel she'd "hate" me.you sound like an excellent big sis and you got to ensure your parents that if she doesn't do these things by herself, for herself, she won't get anywhere in life,it'll make it alot worse..seriously.as for the person that does the yelling they ought to be ashamed of themselves!!don't ever yell at a child/person that has any disabilites,it won't make them do what they need to do,it WILL cause alot of problems in the end.

i wish you and your family luck!

Answer 2

I don't know about this disease but it sounds like your parents are frustating themselves trying to handle everything for her that when they expect her to do something herself they are already at wits end. It is hard to deal with this. I imagine they are sad because they have dreams for their children and knowing that they can never lead a normal life is hard on them. Sometimes their bodies can't function but their minds are developing and she may be just as frustrated as them. Different ADD medications can make a person like a zombie and in a normal situation you can tell and know it needs to be switched. She may be depressed. I can imagine TV could be her escape, in her mind she is probably living through the characters she watches.

Perhaps, her "not liking" you is a frustration because you are a normal person who can come and go as you wish. You have a social life and friends. Perhaps you can offer to take her out once a week to the movies or normal activities kids your age would do. Even if she acts like she doesn't want to -- take her to the mall let her people watch, try on clothes eat greasey pizza with you and your friends and drool over cute guys.

My daughter takes forever to get dressed in the mornings and she's a regular kid with no disabilities. But I make sure that I plan ahead. If we are going somewhere and I know it will take her 20 minutes to put on her pants, shirt, socks and bra. I also have to plan an extra 10 minutes for her to put on her shoes. It's the same battle everyday but I can't scream at her for it. She just takes time to do certain things and I have to keep my composure or else we are both totally stressed because of one little thing.

Make a deal with her on your own. Tell her, okay, you get dressed in so many minutes every day and this Friday night we'll go to any movie you want to see. Or Saturday we'll go hang out at blah blah blah. She just wants a life too. Just because she's handicapped doesn't mean she needs to stay locked in or going to physical therapy, she needs to be put in social settings. She is probably dying to be a teenager even if it's for a couple of hours a week.

Please take her out once a week, your parents would welcome the break and could use some alone time to get to know eachother, it's very hard to be mom and dad and nurse ALL OF THE TIME. They need to recconnect!

Answer 3

My sister has autism. She's 22 now, and still can't communicate or understand what my parents mean when they ask her to change her clothes and clean the house up. She doesn't work or anything, that's why.  

My sister is always ignoring people and gets super depressed for small things. One time, she cried for like 6 hours because I told her that we need to take her yorkie to the groomer for a summer trim. She screamed at me and said "You called my dog dirty!!! I'm so stupid! I should just die!" and crazy emo sh** like that.

My parents force her to go out to dinner with them and go to the store with them so she can socialize a little. There really isn't much that can be done to make your sis a self-sufficient person completely, but giving her more responsibility will help her step up in the world. That's why my parents bought my sister a $700 purebred yorkie--to give her a hobby and an identity as a "yorkie owner"

Answer 4

This sounds similar to my friend's daughter. Her daughter is 8. The local city school has evaluated her daughter and provides therapy for her. My friend is divorced and it's just her and her daughter. When my friend is frustrated, she calls me to vent. Some of the things you mentioned is exactly what my friend vents about. Such as, taking so long to get ready in the morning. My friend has to get her daughter up an extra hour early so they leave on time. Also, her daughter often day dreams a lot and gets seriously lost in a make believe world and forgets about reality. The therapy provided through school has greatly helped. She's gaining more strength in her hands and pays attention more. Unlike your sister's situation, my friend is a single parent and has no other children, so her daughter MUST do some things on her own and help out around the house. It's a hard situation. It sounds like your whole family could benefit through some counseling.

Answer 5

This is EXACTLY like my daughter who is 18. But, I do NOT baby her. They will HAVE to learn to do things on their own, daddy won't be around forever.

She was also born with very low muscle tone, and a twisted cerebellum.

Look into 'executive dysfunction'. This is what she has and describes her to a T. The problem is, there is no 'cure' for this and a LOT of work has to be done to help people like this.

They CAN be better, my daughter surprised me SO MUCH because she has gotten her first job at a grocery store bakery and has been there 2 months. I cried about this, being so proud of her. I just always thought she couldnt' do any job.

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