By Kim Stagliano
Do you remember the old joke from grade school? "Which day of the year is a command?" "MARCH FOURTH!" My daughters are now 21, 19 and 15 years old. We're marching forth, but I can promise you it's a forced march, courtesy of autism. What's a "forced march?"
(military) A movement on foot by soldiers or military prisoners, who must, in order to satisfy a military requirement, travel at a speed or in adverse conditions that would normally tire them excessively.
Can we talk about being excessively tired?
Today I am having my oldest daughter's final IEP meeting before she ages out of school for.... for.... forever.
I've targeted a day program for her and met with the team about getting her a placement there. It's really quite nice, believe it or not. It's an artists cooperative and housed in a real art studio. It's bright, airy, not at all "institutional" and I think she will have a safe, happy time there. At least to start. Her program will be fully funded by DDS with a one to one assistant. It's a 3:1 ratio program. Mia will have 1:1. This is rare. Why? How? Because I have been in the system for five years and have a case manager who taught me the ins and outs of what I would need at age 22.
I was clueless.
I thought 22 was a lifetime away.
I was wrong.
I know others locally who have kids who are also aging out - and they are SOL - without funding. Why? Because thev never got into the DDS system - or they did so too late, so budgeting was already in place and did not include their children.
If you have a child on the spectrum over the age of ten, I implore you, as hard as it is, as far away as you think 22 years of age is, to contact your state department of disability services. Ask a million questions about how to get into the system so that when or even IF your child needs the services, the funds are there. If you recover your child before that time - amen and pass the gravy. If you don't, you need services. Even here in blue state Connecticut, our programs are being slashed by a governor who is a Democrat. Getting in by age 14 meant my girls were on the list for what funding would be needed at 22.
We're all on this forced march. We're moving forward and fast. We are excessively tired.
No one cares.
Keep marching forth. It's all we can do. Call DDS. Today.
Kim Stagliano is Managing Editor for Age of Autism.