First Post

I'd been thinking about doing this for awhile to help me keep track of what "transitioning" is about. It's basicly the steps needed to help my son start an adult life post high school. My son has a genetic syndrome called Velo-cardio-facial syndrome which has its set of developmental problems classified as developmental disabilities. The syndrome varies widely from person to person. My son, Austin (now 19 years old) is mostly affected in the cognitive areas, having mild retardation.

Austin is still high school and we intend to stay there to max out his time. He's entitled to have services until the age of 22. There is a program he could go into next year called "Beyond High School" which I considered for next year but from what I hear of it, it is mainly getting the student started in a job and then someone shadows them on public transportation to help them learn to travel independently and also some job coaching. Austin is getting that now in the high school. He is allowed to stay on campus another year and keep the same curriculum. I opted for that because they have a wonderful computer class tailored for the Special Ed students that helps them learn Microsoft Word, Excel, Power Point etc. that are in Microsoft Office. In addition Austin still gets math, and English. Math skills are particularly difficult for a good number of kids with VCFS, so I want to keep reinforcing the mathematical skills for as long as possible.

Anyway, Austin can still have "job site" and all of the aforementioned classes if he stays on campus another year. I think he would do well with only a year in "Beyond High School" because he is great with a schedules and routines once he gets them down. He's a bit nervous about new ones but does well once he's gone through it several times. For example, last year Austin started working for a local professional minor league baseball team as a "play ball attendant" who passes out the programs to fans entering the ball park. I went with him to his orientations and learned where everything was. We next walked through what Austin would do once he arrived for work, i.e. where to clock in and clock out as well as how. We also walked around the park and decided on a pick-up point where I would meet him to go home. It was a park bench right outside the park across from a hotel.

Austin's job has been of great value because it reinforces what he's learned in "job site", the vocational training class he has at school. He's learned about pay-checks but we need to work on learning to use a check book in real life. I'm not very sure how competent he would be with it even though he's covered the basics in math class at school. Real life is the best teacher.

All-in-all I feel we have a good start but the worst is knowing how to navigate what to do to transition. What is the best resource for independent living? Vocational training? There are a variety to choose from in private non-profit as well as a few of the government sponsored. I think we are on the waiting lists for certain things, but I'm going to have to go back and find that letter from the county MHMR to make sure. We went there a few years ago to talk to them but never really did the "intake". They were going to help us file for SSI (Supplemental Security Income) but we decided to do that ourself and luckily were successful to get it the first time around as I've heard it can be an iffy thing the first attempt.

We are getting started with transitioning. We have guardianship, set up a Special Needs Trust, obtained SSI which automatically qualified us for Medicaid. We need to get him into the Medicaid system at some point, but now he's still on our private insurance.

I've been asked by a few people from our VCFS support group about having an older child and what is involved with transitioning. That is one of the reasons for this blog. I'm going to post some web links to help keep some information organized and available to point people to should they be like me and need some place to go to basic information in order to get started. The schools have helped a bit but only in giving a notice that all rights transfer to your child at age 18 which means your child will decide what options he will take. He or she will have the final say unless he allows someone to advise him and advocate for him. But essentially what the "adult" child decides basically goes.

I'm new to this blog stuff, so I'll have learn how to do lay-outs and such. Hopefully this will be of help to someone but most of it is for me so I can keep track of what the heck I'm doing!