Chat: Jeanie

[Guest guest]

Jeanie,

I have a few minutes before my students return from lunch. Deb said

something that has sparked a thought I am living with on a daily basis and I

thought you'd like to hear about it. It is in reference to that mourning that

life

you wanted your child to have....

Even now, after over 17 years of living with RSS and its effects on my son, I go

through those periods of mourning, anger, denial, frustration, etc. I'm

dealing

with them as I type. But what I have learned to do is to deal with them in a

healthier way than in previous years. Is the pain any less? No. But handling

it in a way that does not ruin my life has been a lesson I've had to learn. And

you will, too. We all will and do.

Max is going to graduate from high school in 2007. That is not far away. We

already know he will not be ready or even able to go to college, so we have to

investigate options for him. And therein lies the problem. While he has been

in school, he has been under the protective umbrella of an IEP and a child

study team. All of a sudden he is going to graduate and the umbrella falls

away and we are left out in the rain. No one has the advice to give us

anymore. All we have is the Division of Vocational Rehab that Max's case

manager told us about and who will send a rep to his next IEP meeting. But

even so, we are not sure of exactly what they will do. Max is not

developmentally delayed like those who pack groceries in the supermarket or

clean the tables and Mc's. He is very high functioning. Then again, he

has health and emotional issues that will probably keep him from being able

to maintain a full-time job .

Then there is health insurance. Once he graduates, unless he is a fulltime

student, he may not be covered by our policy anymore. There may be a

clause in there that will cover him until he is 21 because of his issues, but no

one has given us an answer yet.

Who do I turn to? Where do I go? I spend hours on the internet and talking to

other parents of older children. Do we have Max apply for SSI? Does he get

Medicaid? Do we have to apply for guardianship? It's not easy, but we will

muddle through.

I'm only telling you this because, as I said, and Deb pointed out, we go

through these phases. But we will all help you and you will learn to do what

you have to do. It sure isn't easy, but we are all in this together, thank

goodness. I just wish there were more at my stage and Max's stage. It's hard

to always be the first one.

Jodi Z