McChri

Close Fragile X Syndrome

I have three children, two sons 12yrs old and 17yrs old and a daughter, 20yrs old. Two of my children were diagnosed with FragileX Syndrome, my 12yr son and my daughter. It has been a long journey and a lonely one at times. I mean I had people in my life, but not anyone you took the time to know my children and their disabilities. My daughter was first diagnosed as just having mental retardation and later on in 1998 her and my son where found to have FXS and my other son was not. I'm sorry to sound selfish but has I look back at dealing with my first child. Every specialist gathered around me to get the help/services that my daughter need, but what about me is what I wanted to say, so I'm saying it now. And still today i've been trying to find me a support group in my area where to come together with other parents and discuss our emotional or mental feelings. I did not get chance to talk about my feelings. I remember still trying to understand my daughter condition, and trying to give specialist information on how my daughter acts different from a normal child of her age, mind you this is my first child. It was hard not having someone there "looking in" and helping to give input as to what they saw in order to make sure that her and my son are getting the right services. Even now I still get that question that seems stupid to ask. You know what I'm not looking to change any of my children to shape and mold them to the way the world thinks they should be. Before I came here to this website I was just looking for information on what I could do at home to teach my 12yr old. I mean he's learning life skills in school, but academical, he not doing well. I've been trying to get him to learn his colors, numbers, shapes and then move on to writing. Writing his name, address, or even his phone number. And as far as his ability to communicate, it's limited. He does say words and he sort of does answer you with a yes or no. And sometimes when he means to say yes, he says no. He's playful and I love that laugh, it's a chuckle. He seems to know just when to make sure comments. Like if his older brother is getting into trouble with me, he says ha-ha. Now let me tell you about my daughter she 20 and she works part-time at a supermarket as a bagger. She doesn't like standing up though.She works for 4 hours, 3 days a week and she does love it. I wish that she had friends. I'd been trying to get her involved in this organization that provides social events for people with mentally retardation. They have friday night dances, each friday is a different theme dance and my daughter is yet to attend, because of the time and how far it is and I don't have a car. But eventually I'll get up there by bus and check out the area. My daughter along with other children attend worship service and she interested in the art mininstry, she wants to dance, soon after service is over and we are home she practices what she seen done that day. So she has a good memory. She know how to travel by public transportation. Once she's been to a place once or twice whe remembers it. Okay that's all for now.