Tuesday, February 1, 2011

Of Groundhogs, Snowstorms and Planning for the Future


So as I sit here at my desk and stare out the window looking at the sixth major snow storm that we have had since Christmas, I have to say that that darn groundhog better not see his damn shadow tomorrow. I can’t tell you how tired I am of snow, ice, sleet, cold and a generally feeling of blah. I am sure it has something to do with seasonal affective disorder, so I take my vitamin D pills and try to exercise several times a week. But what I really need quite frankly is for it to be April. You see February is brutal here and March can be kind of iffy so I look forward to April because once the forsythia starts to bloom, there is that ray of sunshine and hope for warmer weather. Listen, it’s not that I don’t know what a really cold winter happens to be. I was born and raised in this neck of the woods, but this year is ridiculous.  It’s not just winter, it is WINTER…I have officially decided to rename where I live The East Coast Tundra of the United States.  The snowdrifts are so high they reach up to your butt and the dogs disappear into them. Of course the dogs are happy rolling around in the snow. Listen, the Wheaton is eleven so I am chalking his antics up to a form of old age dementia and as far as the Labradoodle is concerned, he is just plain batshitcrazy, but in an adorable, very loveable sort of way.
My batshitcrazy labradoodle

So here I sit, kvetching my spoiled heart out to those that will listen and as they say blogging is cathartic, so I am really beginning to feel better. Getting this out has really started to help with my overall disposition. Of course, I just heard that another storm is rolling in tomorrow and instead of snow we are getting a major ice storm…oh goodie goodie goodie. Possibly up to half an inch. If you don’t hear from me for awhile, its because the electric decided to take a staycation.

The truth is that sitting here watching the beef stew cook; I have been contemplating the next adventure to start in our life, HSB’s entrance into college. Interestingly just the other day hubby, that Wise Old Sage, reminded me of some things that he feels is important that families with younger children need to actually pay attention to as their children get older. He told me that whenever he meets a parent with a young child on the autism spectrum these are the things he wants them to be aware of:

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 they are 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 job is to only make sure that your child gets through school. Listen a lot of them are wonderful people, the 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 has no obligation to your child anymore 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 the children are adults. Make sure years before that you know what is out there for them and how to go about accessing the system. Make sure what information you have to have at the ready and how long it takes to get registered. Don’t assume that you can walk into a social services agency the day after graduation and everything will be set. I know people who years after graduation are still trying to get their children into programs and get the state support that they need.

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



5)   Research independent of all the experts what your children can do with themselves once they are either 18 or 21(this 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 4-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 either. Whether these social programs will be here in the future or not is not the issue, what is 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 prepare that they will receive no help and be glad if they get some backing.

7)   Get a good estate attorney who knows about special needs trusts, even trusts in general and wills. Find out about becoming an adult child’ s guardian and making 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. Heck the college wouldn’t event talk to us if collegeman hadn’t signed a piece of paper saying that they could, even though they know that he has aspergers.

8)   And most of all, this is something the Wise Old Sage finds so very important; stash as much money away as you can. I know it’s hard when you are also spending a fortune on therapies as they are young, but see if you can do it. It is money that will help your child when they are adults, whether its hiring classroom coaches, life skills coaches, more therapists and support personnel. Don’t expect the state or anyone else to do this for you. As expensive as it is when they are younger we had no idea how this was going to set us into a whirlwind. 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 they were 18. Who would have thought that things would have gotten harder financial, OK the recent financial meltdown didn’t help to say the least. But we thought we had all the time in the world, yet you really don’t. It is so 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. Or quite frankly so much more of the support, in fact all of it, is on our backs.

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 what the future truly was going to be and we had no idea how much we should have prepared. So I tell you to prepare, 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 anymore than there is support for collegeman. Yes, the college is wonderful. They allow any supports that the boys need. But it is all financially on us. If we couldn’t afford the classroom coaches, neither boy could go to school. They can’t handle it on their own and the school cannot handle their issues, and quite frankly they are not legally bound to. I don’t blame the school for not being able to handle the boys’ issues. You must understand your own child’s neediness and work with the school so your child can learn, grow and be a viable member of post secondary education, while not inhibiting someone else’s education as well. 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. Just something else to have to prepare for. Also don’t assume that the fights 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 making myself maudlin. 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. I am going to blame seasonal affective disorder.  Honestly, if that darn Punxsutawney Phil sees his shadow tomorrow I am going to make myself some groundhog stew.

Until next time,

Elise

P.S. Just watched the Groundhog's Day ceremony and Phil DID NOT see his shadow...woohoo...we are expecting an early spring. So I will need to find something else for dinner other than groundhog stew.