Wednesday, February 23, 2011

On Snowstorms and Planning for the Future

Elise aka aspergers2mom

As I sit here at my desk and stare out at our sixth major snow storm since Christmas, I have been contemplating our life's next adventure: my son HSB’s entrance into college. And just the other day hubby -- that Wise Old Sage -- reminded me of some things he feels are important, things he wants parents of young children on the autism spectrum to know:
  1. Trust your instinct. If things are not right, they are not right. Whether at school, or just in general.

  2. Don’t listen when the school tells you how great your child is doing socially, academically, or emotionally. Watch what is really going on, don’t just take their word for it. Children make improvements, sure, but are they really improvements that would allow them to be independent when that yellow bus stops coming to your door? The schools also provide terrific support, but their only job is to make sure your child gets through school. A lot of them are wonderful people -- my boys would not have made it without so many of them and their incredible hard work -- but once your child walks out that door, the school's obligation to them ends and their attention is about the next child they need to get through 12th grade. The next step is all up to you and you alone.

  3. Have a plan in place for when your children are adults. Don’t assume you can walk into a social services agency the day after graduation and set everything up. Make sure you know, several years in advance, what services are available and how to go about accessing the system. Find out not just what information you will need have to have at the ready, but how long registration takes. I know people who are still trying to get their children into programs and get the state support those kids need, years after graduation.

  4. Remember that each step in growth and development is a major transition. Just because your child could function in their classroom or in the school doesn’t mean that they will be good on their own in their next environment. Prepare.

  5. Research what your children can do themselves -- independent of all the experts -- once they are either 18 or 21 (the age depends on your state's age of majority). Find out about employment, educational programs and opportunities in your area or state for those with disabilities. Find out about training and vocational programs as well as post secondary college (community or four year). Find out the supports available in these programs and what is and is not allowed. There may be some basic concepts for post secondary education but each post secondary program can make up their own accessibility rules and what they will and will not permit.

  6. Do not count on social security or Medicaid. Whether these social programs will be around in the future or not is not the issue; the problem is that just because you feel your child is disabled enough for government support doesn’t mean the government will provide them with adult support (standards are very different when dealing with the government on an adult level). So be aware that they may receive no help, and be glad if they get some backing.
  7. Secure a good estate attorney who knows about special needs trusts, trusts in general, and wills. Find out what becoming an adult child’s guardian entails, and make sure that all papers (living wills, healthcare proxies, etc.) are signed when they come of age. Just because you think you can tell the doctors what to do with your child when they are 18 or older doesn’t mean the doctors have to tell you anything or even listen to you at all. My son Collegeman's school wouldn’t event talk to us if he hadn’t signed a piece of paper saying they could, even though they know  he has Asperger's.
  8. Most of all: stash as much money away as you can. I know it’s hard when you are also spending a fortune on therapies, but see if you can do it. It is money that will help your child when they are adults, whether it is hiring classroom coaches, life skills coaches, more therapists and support personnel. Don’t expect the state or anyone else to do this for you. Hubby turns to me all the time, and says, we should have been smarter. We thought everything was gong to be fine by the time our sons turned 18. We thought we had all the time in the world.
So when we started out on our journey oh so many years ago, it never would have dawned on us that over 15 years later, we would still be fighting and learning and doing. We had no idea how much we should have prepared. I'm telling you you need to prepare and make sure that you have those ducks in a row.

In just a few months my baby graduates from high school. There will be no more support from the state for him, as was the case with his brother. Yes, the college is wonderful. They allow any supports that the boys need. But we carry all the financial responsibilities. If we couldn’t afford the classroom coaches, neither boy could go to school. They can’t handle attending class independently, plus the school cannot handle their issues, and quite frankly is not legally bound.

I don’t blame the school for not being able to handle the boys’ issues. You must understand your own child’s needs and work with the school so your child can learn, grow, and be a participating member of post secondary education, while not inhibiting someone else’s education.

College is different. And as we are finding out law school, heck the damn law boards alone, are an eye opener into more of the “real” world for the boys. They are one more thing to have to prepare for. Don’t assume that the battles I'm describing will be over by the time your child gets to adulthood 15 years from now. Some of the issues we are experiencing for Collegeman especially have been going on for decades and remain unresolved.

So here I am once again thinking about stress and obligations and feeling maudlin. I shouldn’t, really. There are a lot of new adventures to come and quite frankly things are looking up. A lot of good things are happening right now. It is one of those rare moments in time where everyone is happy and healthy.

But, it is unreal that in so many ways the boys actually need more supports as adults than they did when they were little and so much more "disabled." So much more of the support, in fact all of it, is on our backs.