Another Awesome Advocate

I was pleased to discover that local autism advocate Gary French was written up in the Syracuse newspaper.

He hoped to study law but had to care for and advocate for his child with autism and a seizure disorder.
He assists other parents in their advocacy efforts.

And now, he is taking the case of his daughter to the Supreme Court.

Never underestimate the power of a parent of a disabled child.

I wish him the best of luck.

Another Sib-There But For the Grace....

The other day, we met an individual who has not one, but three, siblings with disabilities of one type or another.

We are very lucky with Bil in many ways.  Right now at least there are no behavioral issues, which I fear will change once his mother, who has been the one constant in his life, is either deceased or no longer able to care for him.  Also, he is in relatively good health.

As for this other individual, the other siblings were placed in supported housings (I use this as a very general description) years ago.

We talked about one sibling in particular.  The sibling does not have autism, but rather a profound disability caused by a medical condition that is easily diagnosed and treated today.  It's a tragic situation.  The sibling is profoundly - shall we say, intellectually challenged - and lived in an institutional setting for many years.

When the sib was taken out of it, it was a very long adjustment period because of the high need for routine and structure.

Just like Bil.

The sib did make the adjustment though.  Just like Bil will have to when his time comes.  He will have no other choice. And I don't know how well we can prepare him in advance.

It's small comfort, I guess, to realize there are others in our shoes - people you would never suspect until you mention Bil to them.

The Disabled Caring for Aging Parents

At one time, in New York, Medicaid Service Coordinators (MSCs) had to visit with their clients once a month and do a home visit every 3 months (so, in other words, they saw their clients in the home setting three times a year).

Now, with budget cuts, the visits are 3 times a year, and only one visit needs to be in the client's home.  So, in other words, home visits have been cut from 4 times a year to once.

I don't know the last time Bil had a visit at his home, where he lives with my mother in law.  But we are worried about my mother in law's falls (several falls in the past year), and went ahead and made the medicaid service coordinator aware of it.  I wouldn't be surprised if Bil mentions the last fall to the MSC, where he was unable to get her up on her feet and (fortunately she was conscious) she was able to give Bil instructions on getting help for her.  Fortunately, all ended well.

The MSC offered to do the annual home visit now, rather than wait another four months, to make sure all looked OK.  That visit will take place in the near future.

I wonder what effect the decreased schedule of visits will make in the lives of the developmentally disabled overall in NY State.  Bil is far from the only disabled person living with aged parents.  In Bil's case, she is visited regularly by other relatives.  But that is not always the case.  And I can't believe other developmentally disabled individuals don't cope with trying, in some way, to help care for their elderly parents.

We without disabilities have enough problems being caretakers.  I feel for Bil and this situation that, basically, his mother has forced him into without being willing to let him go into supported housing.  But he has taken on this burden. He's incorporated some aspects of his caregiving into his daily routing-such as automatically going into the car trunk to take groceries or whatever into the house.

But for enough things, he still can't help unless he is constantly coached.  And he won't do anything with cooking at all - anything to do with cooking (the stove, the microwave, etc.) terrifies him.

We've made the MSC aware of this situation, and we'll see if she has any ideas after the home visit.  Her help, of course, can only extend to things that benefit Bil, and we realize that.  But another eye on the situation will help us.

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.

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.

Autism Tiger Sister in Law

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

If he had a mother like this.....an 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.

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.