Now What?

I have had an idea for this particular blog post since I decided to write more posts than usual in April, National Autism Awareness Month. I would write about finding adult programs after aging out of public school.  I would write about being careful about guardianship and health insurance (read: MEDICAID) and SSI and all sorts of issues you younger parents haven’t BEGUN to think about, because really, why should you? I would tell you to become political. I would tell you to begin to network (if you haven’t already) with other parents of children with autism (or whatever disability) close in age to your child so when the time comes, you have people who can come together for the good of all of your children. All those things are still valid, in my mind, but the one that strikes me as most important RIGHT NOW is to become more political. And I will tell you truly…it doesn’t matter the political party you belong to, it matters how that party and those running for election views those with disabilities, adults or children.  I do not vote a straight political ticket, I vote for those whose ideas will be best for Kiddo.

Now the time to write this particular blog has come and our family has been hit over the head by our state’s financial stalemate; the giant game of Chicken our governor and the state legislature have been playing since last summer.  We are a state without a budget, and our state has not being paying their bills because of it.  Things (agencies)can only run for so long without money changing hands….it’s so bad, state custodians in our capital can no longer charge cleaning supplies at local hardware stores and have to use their own cash-money to purchase floor cleaner…UNBELIEVABLE!

It affects us and Kiddo because, since January, his program has been reduced from three days a week (we wanted to have flexibility for him) to two days. And I was informed this afternoon, most likely, his particular program will be cut to one day if things don’t change soon.The support staff is not being paid and are quitting or being let go or put on furlough.  No one can blame them for quitting and the good ones find jobs and go; I would! Our state’s new-ish governor has lost many former supporters because of this situation.  Our state’s representatives (the majority of the other political party) have lost many supporters as well.  In the meantime, those who are the most vulnerable are the ones suffering because of their political shenanigans.

Kiddo, as do many adults with autism, thrives on routine and this has been a punch to the gut.  I am sure I will be blogging about trying to make his life as easy and as normal as possible in the months to come. Hubby and I, and Kiddo’s brothers, will have a Meeting of the Minds over the weekend to come up with something to keep him on track.  Just when we think everything is settled…….sigh.

I will leave you with one of my favorite quotes about how to view the treatment of those most vulnerable in our society. It says a lot about my particular state’s government, I am sad to say 😦

“It was once said that the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in the shadows of life, the sick, the needy and the handicapped.” Hubert H. Humphrey

Every month is Autism Awareness Month at our house!
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autismcuppa

Your Autism Cuppa is written by a longtime Autism Mom. A former Autism Society of America local chapter president, she is an educator and artist and has done inclusion consulting work for over 20 years. Married for 36 years to the father of her Three Sons, the eldest having autism, she wants young parents to know they are not alone. Life can be fun!

4 thoughts on “Now What?”

  1. (Sigh) I think about this stuff all of the time. It literally is like a big rock in the pit of my stomach. It makes me angry and sad at the same time. Cutting the program to 1 day a week?!? Keep us posted on everything please.

    Liked by 1 person

  2. Dare I guess you are in Illinois?

    I think you make an excellent point of getting more involved in politics. I work for a board of 5 elected politicians and it wears me out and sometimes I use it as an excuse to not hear anymore, but it is really no excuse.

    Liked by 1 person

  3. You guessed right…you had to….we are an embarrassment.

    We got word on Monday Kiddo will only have funding for one day beginning in June. I am lucky, I know, because I will have the summer to come up with something for the fall when I NEED him to be someplace or with someone else for two more days a week. Others are not so lucky. Land of Lincoln…ha.

    I got a piece of wonderful advice when Kiddo was in grade school…always watch out for all the people on the spectrum.. Many times we are told if there is funding for early childhood, there won’t be funding for adults and vise versa…..and it’s all BS…the politicians want us at each others throats and to leave them alone. Gotta be political when you have a child with a disability, no matter the age!

    Like

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