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My 20 daughter has CHARGE syndrome and functions at a pretty high level. Too high.........I sometimes wish that she wasn't as intelligent as she is, then she wouldn't know what she was missing. Instead I've got a very friendly kid who has only been out ONCE in her entire life with friends. When I say out with friends, I mean go to the mall or simply hang out like teenagers do. Halloween is her favorite "holiday" of the year.........I offered to take her to a Haunted Hay ride or SOMETHING and she doesn't want to go with Mom but friends. Of course since she really doesn't have friends, she sat home and cried all night.
It really stinks seeing your kid cry and not being able to "fix" it. How can I get her involved with life?
My 20 daughter has CHARGE syndrome and functions at a pretty high level. Too high.........I sometimes wish that she wasn't as intelligent as she is, then she wouldn't know what she was missing. Instead I've got a very friendly kid who has only been out ONCE in her entire life with friends. When I say out with friends, I mean go to the mall or simply hang out like teenagers do. Halloween is her favorite "holiday" of the year.........I offered to take her to a Haunted Hay ride or SOMETHING and she doesn't want to go with Mom but friends. Of course since she really doesn't have friends, she sat home and cried all night.
It really stinks seeing your kid cry and not being able to "fix" it. How can I get her involved with life?
What a heartbreaking situation. I am honestly not familiar with CHARGE syndrome (had to look it up). I would look in your area for groups that they may have for children with such syndromes (CHARGE or other syndromes that may impact a child). Oftentimes they do, and it's a good way to meet people. Is she still in school? What does she like to do? Do you have any family members (cousins, etc) in her age range? What about neighbors? Any places where she could volunteer at to help younger kids and then maybe meet people?
My heart breaks for you. My son has ADHD and has a hard enough time finding and keeping friends. What does your daughter do during the day? Does she work or is she in school? Could she volunteer with some organization? Often kids or young folks who volunteer are more open to friends who might not be so typical.I think the more activities that she is exposed to, the more likely she is to meet young people. It sounds like you are taking a pretty active role as well - she may still need you to intervene and help invite people to do things...
Hang in there. You sound like a great Mom!
Part of the problem is her syndrome which includes cleft lip/palate and hearing loss. So being deaf (never say that to her even though she only has 30% hearing in one ear 0 in the other) with a speech issue (cleft palate) makes if difficult for little kids to understand her. She's also got a facial paralysis that makes her look odd since she can't smile fully. Then kids are afraid of her and then I get tears again. Trust me for years I've tried everything to give her a "normal" life even placing her in a residential school thinking she's have some kind of social life, nothing has worked. She got a messed up physical appearance but her intelligence is about a 13 year old............
When I was a teen, I did alot of volunteer work with a county recreation program. It was called Adaptive Leisure Services and encompassed a large county. They held functions for handicap people ages 15 & up. They offered bowling, daycamps, swim days, hikes, mall outings, etc. Alot of the people that attended became friends and would get together on their own. That was really nice to see. This program also worked closely with the special olympics and that enabled their clients to meet others and form relationships. It was run by the county parks department.
In Calif there are career/job centers in most areas, alot of times the unemplyment office is in the same office. These job centers have services for the handicap. They do outings, help them manage their social security checks, shopping trips, and have social events. Does your state have anything like that?
Is there a county or city program for the handicap in your area? Is there a program for the deaf in your area? Maybe call and see if those organizations have any suggestions. Are there any daycare/respite programs in your area for adults? I live in a small town now and the day program is pretty neat and well attended for such a small area. Is there a community college near you with special ed classes? Some junior colleges have special ed classes and that is a great place to meet other people and find resources. Even if she never passes a class, getting her the social interations is well worth it. Other places like the Salvation Army offer classes and training, that might be a great place to socialize also.
Maybe Big Brothers/Big Sisters would be willing to help. It never hurts to ask.
Hugs to you, I hope you find something for her. My daughter is 7 and has autism. We are just starting with the friends thing. Its painful at times.
We have a week long summer camp for kids with craniofacial differences in my area. If you live near a large city or pediatric medical center, perhaps you do as well. Though it is many months away, I bet a program like that would love some help from a willing volunteer. Since the campers would all have some unique features, they would probably be accepting of a counselor who wasn't too typical looking. If they have other young volunteers with Craniofacial issues, your daughter might meets someone there.
My 20 daughter has CHARGE syndrome and functions at a pretty high level. Too high.........I sometimes wish that she wasn't as intelligent as she is, then she wouldn't know what she was missing. Instead I've got a very friendly kid who has only been out ONCE in her entire life with friends. When I say out with friends, I mean go to the mall or simply hang out like teenagers do. Halloween is her favorite "holiday" of the year.........I offered to take her to a Haunted Hay ride or SOMETHING and she doesn't want to go with Mom but friends. Of course since she really doesn't have friends, she sat home and cried all night.
It really stinks seeing your kid cry and not being able to "fix" it. How can I get her involved with life?
I'm thinkin you could go through your( or any church) to invite the community to a baseball game or snowball fight (friendly) or maybe a talent show or something like that. Make sure she is the hostess with mostess. Big Brothers and Sisters would be an excellent idea too. Do you have a Y there? I wonder if you can't find her a part time job or voluteer at maybe a grocery store or at the Y or the local library? Even an hour or two a day would get her out more. Or everyother day or so on. I also am learning how to deal with a gifted and ADDH,ADHD,Bipolor 15 year old boy. I am just fixin to homeschool. He cannot or won't get along in public or special needs schools so far. His anger management is a big problem. He is a very high strung individual as well. Ok well, just remember.....LIVE LAUGH AND LOVE Hey, I'll tell ya if you can get the Harley riders involved and thundering through town than you can usually get someones attention. They have organizations who do things like this to bring the community together for whatever reason. Yes, there are alot of good wholesome and caring Harley riders. She would love a ride with the group......maybe? Ok well make it fun whatever it is you decide to do. You have some awesome advising posters. Have fun. p.s. Will you tell her hello for me?
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I am honestly not familiar with CHARGE syndrome (had to look it up). I would look in your area for groups that they may have for children with such syndromes (CHARGE or other syndromes that may impact a child). Oftentimes they do, and it's a good way to meet people. Is she still in school? What does she like to do? Do you have any family members (cousins, etc) in her age range? What about neighbors? Any places where she could volunteer at to help younger kids and then maybe meet people?
Thanks
p.s. Will you tell her hello for me?
