Turner Syndrome Support Group
Turner syndrome encompasses a number of chromosomal abnormalities, of which monosomy X, is the most common. It occurs in 1 out of every 2,500 female births. Instead of the normal XX sex chromosomes for a female, only one X chromosome is present and fully functional. In Turner syndrome, female sexual characteristics are present but underdeveloped.
My daughter was diagnosed with autism at age 5, tourettes at age 7, and turners at age 10. Turns out it wasn't autism after all, but the NLD that accompanies TS. She has trouble focusing, staying on task, following through, spacial perception issues, etc. She has an IEP at school and has had one since preschool.
A friend recently told me about the medicaid waiver which my daughter may qualify for. It can provide services such as aba therapy, self-help skills, vocational skills, etc. It is a waiver that is not based on income because it is open to children with developmental disabilites. I never knew it existed.
With her getting ready to turn 13, I worry about her future. I worry if she will be able to drive, obtain and sustain employment, and live independently. My husband says she can live with us as long as she wants, but in reality we won't live forever and it is best that she can take care of herself.
I want to look into applying for this waiver because these services can help her. My question is, has anyone ever applied for this and/or used it and what was your experience? Thanks for listening!
A friend recently told me about the medicaid waiver which my daughter may qualify for. It can provide services such as aba therapy, self-help skills, vocational skills, etc. It is a waiver that is not based on income because it is open to children with developmental disabilites. I never knew it existed.
With her getting ready to turn 13, I worry about her future. I worry if she will be able to drive, obtain and sustain employment, and live independently. My husband says she can live with us as long as she wants, but in reality we won't live forever and it is best that she can take care of herself.
I want to look into applying for this waiver because these services can help her. My question is, has anyone ever applied for this and/or used it and what was your experience? Thanks for listening!
I do not have major issues, although I do have SOME spacial perception issues. I never could quite catch onto driving properly, and with my anxiety, especially after I was diagnosed with my heart condition (bicuspid valve with some regurgitation-very common amongst Turner's gals) I gave it up. I'm perfectly fine with using my own two legs, my bicycle, and public transit for the rest of my life. That, and I'm HORRIBLE at sports. If I could have had a waiver from all but the physical activity (ex, running laps, sit-ups etc) portion of gym class I would have been a MUCH happier person. Instead, I ended up being a bit of a laughing stock, crying a bunch because my grade would suffer, and occasionally embarrassing myself insanely (grade nine where I ended up whacking my gym teacher instead of the floor hockey ball comes to mind).
I'm 22, and although I still live with my dad, I'm okay with this. He's remarrying in a year and a bit, and the house ownership will transfer to me, which given that I now have my music teaching studio here, is really the best possible situation.
The symptoms of TS that MAY effect and individual may well be considered as such.
There are a lot of lawyers who could help you out and consultation should be free until the point that you make a decision to work with them or go it alone.
Some will offer you legal advice too as opposed to working to gain the services your daughter might need.
xx