There are special needs caregivers who have kids that are growing up. Becoming adults. And these beautiful souls are about to age out of public school and all of the services that go with attending it.
Depending on where you live, there may or may not be a plethora of resources for your new adult special needs offspring. Some states have incredible programs. I am hearing from other caregivers that when they look around, they see nothing but a black hole and the sound of crickets chirping.
This can be absolutely terrifying.
There is a lot of pressure put on special needs parents and caregivers. Life is expensive, busy, stressful, time consuming and probably a lot different than they envisioned. They are forced into a situation where they have to think outside the box and problem solve in a way that they may have no prior experience. It’s a lot (not discounting the joy, ever). But you know what I mean, right?
It is difficult to plan ahead when you are pregnant and you suddenly find out through tests, in the birthing room or in the first couple of years that your child has special needs. You slog your way through, barely having time to breathe. There is no way to predict that this will happen. It doesn’t happen to most people so most people won’t prepare in advance before thinking of getting pregnant. I sure didn’t.
Here’s the thing, though. You had no idea that your child would be special needs but you know, with absolute certainty, that you will be the parent of a special needs adult.
Why not plan ahead?
I know, I know, you don’t need ONE MORE THING on your plate. You are exhausted, overwhelmed. Where would you even begin?
Here’s the beauty of the situation – you have LOTS of time if you start early. For example, my son is currently six years old. In Texas, he may stay in school until he is 21 with all of the services that they provide. After the end of the school year in which he turns 21, the services will cease. There are adult services out there and he may or may not be eligible depending on a variety of factors. This means that I have FIFTEEN YEARS to plan how his adult life could go (unless he is able to make these decisions for himself, which would be wonderful).
So, here’s the plan. I am going to envision how I want his life to be (assuming I am the one who is going to plan it). I am going to think about what services, clubs, social events, trips, jobs and activities I want him to have. I am going to think about what resources, therapies, and assistance I think he may want or need. And then I am going to take a look around me and see if it exists near where we live. If it doesn’t, I am going to look around the country and see if it exists anywhere else. Because we could move there if it’s a better fit for my son.
What if what I want for my son doesn’t exist? What if he’s not eligible?
People have this thing that they do that drives me a little nuts. They look at a situation and they say, “Someone should DO something about that!” Guess what? That someone is YOU. The person who sees the void should do something about it. It certainly isn’t going to be taken care of by folks who don’t see the void. Who else is there?
I have FIFTEEN YEARS to make it happen. I am going to look around and see if it already exists. If it doesn’t or I can’t access it, I am going to create it. There are grants, loans, government programs, organizations and many, many resources, all just waiting for people to ask. If I build it and my son decides as an adult that he would like different choices, SOMEONE will want what I build (how dreamy, that he would be able to decide).
Slowly but surely, over fifteen years, I will design and craft the right situation for him. For us. Instead of waiting until he’s turning 21, playing the role of the deer in the headlights and hoping like heck that someone is going to jump in and save us. I have a plan to make a plan to make his adult world a better place.
What’s your plan?