Quote From: whadersbI watched the show today (normally at work) because I was very interested when I saw Alex and his behavioral issues. I also have a 17 yr old son Joe with Klinefelter Syndrom and have experienced concerns with social behavior problems with my son for years. My son was diagnosed at age 9 after years of trying to find out what was wrong with him. After the diagnosis and medical treatment we are still left with serious issues to deal with currently and in the near future. Insurance - where does he get health insurance when he is considered an adult with on going medical (although not life threatning, but most certainly life impacting) concerns. How do I get him into the working world when he is and looks very normal yet social skills are less than perfect, due to lack of motivation and logic skills. I worry that he will not be able to sustain a normal existance where he can take care of himself. I fee like he will always require my guidence and help, yet I won't be here forever. What is a parent to do to alieviate this fear (of what will happen to them when your no longer there to be an advocate for them) which I am sure All Parents with kids that have problems face. A very worried Mom
You bring up many real concerns. For ongoing medical insurance coverage check with your county's MRDD board. If his situation is considered to be a lifelong disability - often it will be covered by Social Security or Medicare thru them.
For entrance into the working world - Again start with your local county MRDD and also look for "job coaches". They will have invaluable information as to employers most sympathetic about working with individuals with special needs. They'll also help with interviews, filling out applications, job training, etc.
For concerns about independent living - ask at the county MRDD for referals to possible group homes in your area. Lutheran Social Services have an umbrella approach and offer senior care facilities and MRDD homes, and other group living situations to accomodate special needs adults.
For providing an ongoing advocate for him, look into a "Special Needs Estate Planner".
