Friday, December 30, 2011

Expect the Unexpected

My mother in law has depended on the kindness of a niece and her husband who live close enough (an hour and a half or so) that they were able to do a lot of work on her house, and made a big difference in her quality of life.

Now they have decided to move over 1000 miles away to be with one of their grown children.

The move will take place sometime in 2012, I don't know when exactly. (hopefully it won't be before winter ends.)

I don't know how Bil will feel about this because I'm not sure exactly how aware they are of the extent of their kindness.  But this is going to change their lives - and ours.  Our tasks of being long distance caregivers are about to get a lot harder.

I don't know why I am surprised, because this was a logical move on their part. I'm glad they had the money to do this too.  My mother in law doesn't.

It gives me a big chilly feeling, thinking about poverty in my old age.  And Bil may well feel this too.

This year will not end on a good note for either of us-it's just that Bil doesn't know it yet.

Thursday, December 29, 2011

Can They Overcome?

Tonight on the game show Jeopardy - an answer, asking for the name of the condition Temple Grandin has "overcome".

Earlier this year - a newspaper article about Temple Grandin 63-year-old Temple, who (and I quote)" has not merely overcome her autism, but used her skills to change the face of the meat industry in America..."

A quick Google search reveals a number of articles that talk about Ms. Grandin  "overcoming" her autism.

It makes me mad.  Not at Temple Grandin, who I admire greatly. 

1.  Autism is part of what Temple Grandin is.  It is part of what my brother in law Bil is.  Ms. Grandin has faced many obstacles due to her autism, but some of her talents derive from that same autism.  It's my belief that there is a connection between autism in some people, and creativity - and yes, genius. (Google Albert Einstein and autism, and see what comes up.)
2.  Autism is a life long condition.  Temple is a visual thinker and has an excellent memory.  But she still has her underlying condition.  Her accomplishments are many.
3.  But she has not overcome.

What Temple Grandin has managed to do is work on many of the limitations her autism has given her (even as she uses the genius her autism has granted her).  She is a bridge between the world of Bil and the world of the neurotypical I belong to.

But at the end of the day....if she hadn't found commercial value in her talents...she may have been in the same boat as Bil finds himself.

The boat so many with autism find themselves in.  The boat of limited opportunity, of limited choices, of limited housing.

Sorry, Jeopardy.  She has not overcome.

Wednesday, December 28, 2011

Autism Tiger Sister in Law

I could dream that Bil was born 30 years after he was.

If he had a mother like Autism Tiger Mom.

My mother in law did the best she could, under the circumstances of having an autistic son in the 1970's.

So what Bil would have needed is an Autism Tiger Sister in Law.

I am not that person.

But in a small way I am like the Autism Tiger Mom of that op-ed piece.  Trying to make it up as I go along.  Knowing there may be no good solution.  But also trying to live my life, and not spending all my time on Bil.

Just not doing a very good job of the time I do spend on it, I fear. And, right now, feeling guilty.

Oh well,  End of self-pity.  Tomorrow is another day.

Tuesday, December 27, 2011

A Florida Move?

It seems that close relatives to my mother in law are going to be moving to Florida in the next few months.  I don't know if it is on a snowbird basis yet, or if it will be permanent.

I know my mil has thought on and off about moving to Florida.  Each winter is harder and harder on her.

But Bil is deathly afraid of lightening, heavy rain, and hurricanes.  He practically lives on the Weather Channel.

Which means that if my mother in law moved, Bil would not want to go.

And I don't think she would move to Florida if he wouldn't go.

It sure would be interesting if, at that point, she decided Bil should live with us.  Because, if I have anything to do with it, that will never happen.  I truly think Bil needs to live apart from us, in some other housing situation, in order to reach full adulthood.  In his 50's, he still hasn't achieved that.

And, we have a right to our own lives too.  Just because my mother in law never made any plans, never spoke to us frankly about what she expected, just "assumed".

And the sad but sorry truth is that the housing options available to him will be limited. Even if I advocated like hell.
Still, I would want my mother in law to be able to move.

She deserves it.  She's more than put in her time. 

It's past time for Bil to gain independence.

Monday, December 26, 2011

A Lottery Christmas

Christmas has come and gone.

Bil got what he wanted - Barnes and Nobles gift cards and chocolate.

And he got something he did not ask for - lottery tickets.

This was obviously Bil's first experience with lottery cards.  These were the scratchoff games you can buy in machines here in New York for $1, $2. or even $5. The $2. games, for example, can have grand prizes of $25,000.  You scratch off numbers and can win.

My husband showed Bil how to scratch off the numbers and tried to explain how the game worked.  Not sure Bil got it, but he sat there patiently and scratched all the tickets.  Alas, he didn't win anything.

I'm glad.  Because if he had won, I wonder if he would have wanted to start playing the lottery.  At his financial level, it would be so very tempting.  I've not heard of people with autism developing gambling habits but....hey, you never know. 

Would he have considered it harmless entertainment like the rest of us?  I'm glad I didn't have to find out.

Sunday, December 25, 2011

Merry Christmas With the Family

Today, we will be together with relatives of my husband's (including Bil) for Christmas.

Bil's MSC (Medicaid Service Coordinator) reports that everything is going well in his "other life" at the local ARC, where he participates in a sheltered workshop work environment.  His last annual review, which my mother in law participated in by phone, went well. 

We are waiting for the decision on if his Medicaid will be extended for another year.  With the budget cuts, we can only hope that outcome is favorable.

Now we can only hope that government programs don't continue to be cut.  AND that we (it may be "me" as all the siblings seem so afraid of bringing this up) can convince my mother in law that Bil needs to live away from home, and this needs to be done before she dies (which we hope isn't for a long time but one never knows.) SO frustrating!!!!

I think Bil enjoys these family gatherings a lot.  And that doesn't have to end if he lives away from home!

But I will put my frustration aside for one day and enjoy the day.

Saturday, December 24, 2011

Write My Congressman on Christmas Eve?

I'm not known for writing my congressman.  But, in this busy holiday season time, I ran across this blog post. 

Perhaps I should write this, using her template

Dear Senator Schumer:
I am the sister in law of a man in his 50's with autism. We need so much help just to keep our families together. Autism is so complex.

One of our country’s blessings is our human services. Let’s take Medicaid as an example, because I have firsthand experience with that program.  Bil has just lost lost his Medicaid Home and Community Based Waiver.  We've never been able to get reshab services and.With so many having been educated with our public school system (also far from perfect, but lightyears beyond what the disabled used to have — Nothing) isn’t it a profound waste of human potential to let these people just languish for the rest of their lives, doing nothing and living in their aging parents’ homes — and that’s only the lucky ones who have parents up to the task. 

Medicaid is not the place to experiment with deficit reduction. As unpleasant as it is, we all know that revenue to pay to run this country comes from taxes. Please look to the wealthiest in this country first, before looking at the poorest and most vulnerable. Medicaid helps the most vulnerable. 

Back in November, there was a question regarding whether one of Bil's medicines would be covered by Medicaid any longer.  Fortunately his Medicare Part D is still covering the medication but it was a scare never the less.  We know Social Security and Medicare are in trouble.

Will our developmentally disabled fall through a frayed safety net?

Yours truly, (and happy holidays)
Bil's sister in law

Friday, December 23, 2011

The Importance of Completing Growth

I recently found a book in the library called "Making Sense of Autistic Spectrum Disorders-Create the Brightest Future for Your Child" by Dr. James Coplan.

The name immediately rang a bell. I had the pleasure of meeting Dr. Coplan years ago.  He used to practice in the Syracuse area and later moved to Children's Hospital of Philadelphia.  Simply put, he is a developmental pediatrician who has a number of sub-specialties, and is uniquely qualified to work with children with ASD's - and their families.  When I met Dr. Coplan years ago, what impressed me the most was his compassion.

Sometimes, doctors with great knowledge can be cold, and that is the last thing a family who has a member with autism needs.

Now, years later, I found out more about the background of Dr. Coplan.  He has a younger sister with a developmental disability - in other words, he is a "sib" besides being a doctor.

He is a very accomplished blogger.  I met the Doctor before blogging existed so I don't know why that surprised me - but I had never attempted to find his work through the Internet.

But I really don't want to write about Dr. Coplan.  I want to write about his book.

While this 400 plus page book gave an extensive overview of many issues with children (and I highly recommend it to those with younger children).  Like so many of these books, they "fade out" when it comes to adulthood.  Usually that is disappointing.  But, since Dr. Coplan is a pediatrician, it is understandable.

But what Dr. Coplan said about adults with autism....well, it is so much what I feel, also.

Dr. Coplan explains that a child's "job" is to grow up and become independent. The drive to independence begins the day after birth. 

If an adult with a disability is kept at home, he or she never can complete their growth.

Dr. Coplan realizes such an individual might never be independent.  But there is a difference between living in a supported environment away from the parents (he did mention group homes, which many in the disability communities would rather go away, as an example) and staying at home.  And he was very emphatic about this:  the individual with the disability has to leave the home to complete the growing up process.

The parent who prevents the child from leaving is doing him or her a grave disservice, especially if there has to be a sudden change in living situation (such as the parent dying suddenly.)  He even gave an example of such an instance (a parent dying suddenly.) 

This is what I have been saying all along!!!!

Wednesday, December 21, 2011

The Long Silence

I haven't been posting much lately.  I am here but a lot has been happening - just when I should be blogging the most, I find myself not blogging.

My life has been full of a lot of things.  Some involve Bil but a lot do not.

I also know that the first rule of blogging is "blog often".  But this blog is more a place for me to blow off steam, in addition to providing information and content.

So I apologize for the silence.  We'll see what the next week brings.