There are a multitude of resources out there for families who have a child with a disability; but as the child ages those resources dry up and become harder to find. Speaking from personal experience it can be daunting trying to figure out what to do next; especially when it’s time to think about your child leaving school – either with a diploma or a certificate at 21. Pathfinders for Autism‘s website has some great checklists sorted by age, and many of the items on the checklist are not Autism specific – meaning they can be used for just about any disability.
I’ve seen a lot of information about why families with Special Needs need to do financial plans, establish trusts and think about guardianship; but I haven’t seen as much about really preparing the child to be an adult (within their capability). The school is going to ask what does your child want to do for a living when they leave school – from personal experience this is a hard question to answer. It was an even harder question for me to let my son answer.
Work with your child to determine their likes and strengths, and be prepared to help them reconcile that the two may not always be synonymous. The school system can be a resource, don’t hesitate to reach out to your IEP team and share your ideas; but don’t stop there. Nothing says you and your child can’t network with professionals and organizations in the realm of your child’s interests. A great way to get your foot in the door is to see what volunteer opportunities there are; or if there’s an internship available; etc… Please, please don’t get caught in the mindset of “my child will never be able to do “x” because of his/her disability.”
To the maximum extent possible, start having your child do things on their own. I’m not suggesting jumping right into cooking a 3-course meal, but why not work with them when you’re making your grocery list; get their input. The same goes with laundry – maybe they can’t carry a basket or move laundry from the washer to the dryer; but could they help you sort by color? Talk to the school, what skills are they working on in class, and what is your child already doing? Build on the successes, no matter how small – and celebrate them. We won’t be around forever, so the less they rely on us the better.
Explore your community, what support organizations are out there and who funds them? Does the money come from the DDA, or is it private pay? If it’s private pay – are there opportunities for scholarships – either from the organization itself or Foundations? Get out to the community resource fairs, and don’t limit yourself to your County or school. I’m a single dad, I understand how difficult it can be to juggle everything – but I can also tell you it’s more than worth it to make the investment of time when your child is young so you don’t feel rushed later.
My son is on the Autism Spectrum, he was non-verbal – we used PECs and ASL to communicate. Before my wife passed away in 2012 I didn’t do any of the things I’m suggesting – never had time, didn’t think he was capable, fill in the excuse I’ve said it. Over the last 4 years he has become fairly independent and much more communicative. I never would’ve believed it if I’d been told he would eventually be making his own dinner and putting his clothes away; but he is. These things took time, and there are things he’ll likely never be completely independent for; but it’s a start and I’ll take it.