One thing that seems to be consistent among parents with children on the spectrum (heck, with all parents!) is fear for what the future will hold. While we battle school systems, the medical system, and bureaucracies to get what our children need, we also must project into the future and try to equip our children with the tools they need to succeed or to set in place the environments that will protect them and allow them to have a good life.
Unfortunately, sometimes the real-time struggles are so time-demanding that parents don't have the opportunity to work towards that day when their disabled children are adults, and even when they do, and they work to move heaven and earth, it doesn't always work out as planned.
I can understand the fear for the future, although there are some things that I cannot relate to. I've read parents who fear when their child ages out of the educational system and what they will do, and that's not something I dealt with, as we homeschooled Bobby from the age of nine. And it's not something I'm going to worry about with the girls, because even though they are on the spectrum, they won't be in the educational system till 21. I anticipate and plan that they'll be out of the school system before they enter high school. It'll be for different reasons than it was for Bobby; the girls are well-equipped and should be able to start college part-time in their earlier teen years.
The future is unknown, and even when we construct elaborate, detailed plans and do our best to make them happen, the truth is that the future is out of our control. All we can do is plan, plan some more, make contingency plans, be flexible, revise our plans, and work hard NOW to arm our children with the tools they'll need to be as autonomous as possible.
We should also be prepared to yield our authority and our control over to our adult children and allow them to make their own decisions as much as possible. We should work together. Bobby is now 22 and he's increased his time in the kitchen at Meals on Wheels to five days a week, and starting next week, he'll get there earlier so that he is volunteering 40 hours a week. It's something we've discussed and worked towards together. We've done it with no governmental interference or assistance, with no job coach. We've done it together, on our own. We've been lucky that the kitchen staff are kind and care for Bobby and welcomed him there. It's Bobby's hope and ours that someday these years of volunteering and learning how to interact in the real-world job setting will lead to a paid position in a kitchen, either there or elsewhere. It may not happen; that is beyond our control; it's still worth working hard for.
What is not beyond our control is the effort we make to ready him for independence (or semi-independence). What is not beyond our control is slowly loosening our hold and allowing him to make these decisions with our support and blessing.
Bobby still struggles. He has a hard time remembering names. He has a hard time communicating clearly the chain of events or what other people said or did. His sense of time is still really, really different. We keep working on it. He keeps working on it. And that, in the end, is what's really important: that we continue together to work on attaining new skills, to improving our abilities to relate to each other and to navigating this scary world where anything can happen.