Planning the Future: How does a special needs parent start?

I’ve been giving a lot of thought lately to my kids, and a bit less thought about their futures.  In my heart of hearts, I know this is not correct, but sleep deprivation and my sense of overwhelm have put me lately on a day-by-day management track.  That is, it’s taking everything right now just to get through the day.

A series of things has happened, though, that has got me thinking about more long-term planning for my girls.  First, Zoe had an IEP last month that I was NOT equipped for, in terms of prep or alertness, and I showed up alone while they brought in the big guns.  I tried to negotiate to get her an extra day of school and, in my failure, I am now paying the price as she is super-resistant to going AT ALL.

Chris and I have been discussing converting her huge, empty walk-in closet to a study, so that she has a place for homework and nothing but educational things on the wall, like sight words and number lines.

Amelia has been having great difficulty with homework, which made me realize that our decision to put her in full inclusion – which I still believe was the correct option – came without me really understanding what it meant. I made some calls and got some support and information.  Meanwhile the school called for a new IEP since her old one recommended something other than full inclusion, which is all they offer, so that is set up. In addition, she has a new eval for TSS services scheduled next month, and if a TSS in school is required, that should cover it.

In addition, I’m reading a parenting book for review (I won’t divulge yet) and one of the things it covered goals for your family.  Then today, I took a look at this page which contains a video ad for life planning for special needs parents on the inside cover:

Exceptional Parenting Magazine

The timing on these things was pretty simultaneous, and it got together one point for me: we need to plan realisticly and completely for our kids’ futures.  We talk about this sometimes, but for now, I can start with the IEP planning and what we want for Amelia’s education.  I’m also going to be in there to ask her teachers what I can do, without becoming a teacher myself.

For those of you have special needs kids, what was the defining moment where you decided to plan for your kids’ future? What did you do?  How did you begin?  I want to hear your tips and advicse to help me raise kids who are happy and lead contributive lives!