The Perpetual Memory

Bil....the memory of our family.

Want to know the weather on a date during Bil's life?  Ask Bil.  Want to know the date that a holiday like Easter (a holiday moving around the calendar) in a certain year is?  Ask Bil. 

For him it's not a party trick.  It may well be a function of his brain, which can not work right in so many ways, being able to devote large amounts of memory to other things.

I leaned on this ability a lot when my father in law died, 13 years ago this next Christmas.  I helped my mother in law out by calling various agencies.  And whenever they wanted a date in my father in law's life, there was Bil all ready to give the answers.

Even in the last couple of weeks-I had to help my mother in law fill out paperwork for Social Security.  They wanted to know the date that Bil had last seen a doctor.  Bill had it down - to the hour.  And the visit before that.  And the visit before that.

I know Bil isn't alone in this ability among people with autism.  I just wish I could figure out a way for it to help him, or even to make him a better income than what his sheltered workshop job.

Social Networking at the Job and Autism?

I recently read a most chilling (to those involved in the World of the Spectrum) book called The 2020 Workplace:  How Innovative Companies Attract, Develop, and Keep Tomorrow's Employees Today by
Meister and Willyerd. 

The book is about getting talent in a changing world....one that is changing quickly, and maybe not for the better for those with Aspergers-just in time for all of those 1 in 166 birth generation Aspies to be entering the workplace.

So.... The prediction that social networking will be used extensively in the workplace, along with wikis, and blogs, may spell bad news for those on the spectrum.  Some companies (and not necessarily technology companies) are using these tools now.

On the one hand, younger people with autism do use the Internet.  Some have blogs, others have websites.  I know at least one person with Aspergers and one with PDD-NOS who are on Facebook.  This is on their terms. But what happens if these social "tools" become the norm and expectation for the world of work?

Unlike Bil, who has always worked in the sheltered workshop environment, others on the spectrum have been able to contribute in the "non-sheltered" world of work.  But contributing by joining Facebook like networks and interacting with others may not be a strength.  Then what?  Are they shut out of the World of 2020?

I can see the older people with autism, who may not have ever been able to learn to navigate present day online life, and have a lot of problem dealing with change, being shut out completely.  It's hard enough for some neurotypical people in their 50's or 60's to adopt to the change coming now.  I can't see Bil ever being able to do this.

Another way for "older" people to autism to be off the radar?

As Bil's advocate, I think about a lot of things.

The future....just some more food for thought.

Change in the Wind?

Change, for Bil., is not good.  For Bil, there is no such thing as good change.  For us, Bil's caregivers...who knows?

We have known for a while that Bil's MSC (Medicaid Service Coordinator) has been ill.  I will not mention her name for privacy reasons but, in her personal life, has had a lot of challenges herself.  Now, apparently, the illness had become too much for her.   Bil is not the only person being affected and some of the details, quite frankly, are a little bit scary to me when I think of Bil's future.

This MSC was at Bil's 50th birthday party that is the last I talked to her.  She took sick not long after.  I was hoping to be able to visit with her in the next several months to get a handle on what upcoming NYS budget cuts might mean to Bil's service coordination.

Recently, .my mother in law had tried to reach the MSC and, on her voicemail, was a message that the extension was no longer hers.  No explanation, no message about how to reach the MSC.  My mother in law has the MSC's home number (another measure of how much this MSC is involved with her clients) and she intends to call her tomorrow.


I have never questioned this MSC's dedication.  But I do have some issues with PARC (Putnam ARC) itself.  And if the MSC is ill and can no longer work, why wasn't Bil's mother advised?  Bil himself would have a lot of problems communicating this, if he indeed knows.

And once he knows....(if there is something to know)-his reaction will be of a lot of interest to me.  My next trip down to where Bil lives (November?) may need to address this.

The Leak

We are down visiting mil and Bil today.  Last night the housekeeper did the laundry and lost a pair of Bil's underwear.  I think he was driving mil a little nuts with his constant queries.  We had to go somewhere, and didn't get back until he was in bed, so I don't know if he found them.

Then today, the toilet started to leak and Bil has that to worry about now.  We, at least, are here to help out.  Her plumber has the flu but gave us some suggestions about temporary measures.

I noted Bil was pointing instead of talking, in showing her the leak.  He may do that a lot still-I know he did before he learned to talk at age 5-but I had never seen it in action.  Mil had to tell him to use words.  I wonder how often that is happening.

Well, this was a short post as we have to run to the hardware store to get a couple of things the plumber said might help with the leak temporarily.  He won't be able to make it until Monday.

You Won't Miss it Until It is Gone

10-10-10.  That special date.

On this date, I walked into the public library in Vestal, NY, the only library in this area that is open on Sunday.  And there, I found a petition to save the library.



The library is having 1/4 of its budget cut.  No new books, and employees will (according to one of the librarians I spoke to) have substantial cuts in their hours.

So, what does this have to do with Bil?  

Well....

When I first started to research the various issues I have had to advocate on behalf of Bil (back around 2000), there were various sources of information I used.  One in particular, I found, had free, extensive resources and people not that knowledgeable about autism, but very willing to listen, to learn, and to help.

One woman spent about 1/2 hour with me, and talked about the flood of requests she was experiencing from other people.  I talked to her a bit about autism.

That person?  A librarian.

You won't miss the libraries until they are gone, my friend.  They are far cries from what you may think. They are not musty dim places where librarians who never married shush you if you dare to breathe loudly.  (and perhaps they never were.)  Now they host internet access for many needing people.  They help people look for work.  They help people in all types of need, including, yes, people who have a family member newly diagnosed with autism-and don't know where to turn.

The Vestal library, until earlier this year, carried Exceptional Parent magazine.  They were the only local library (to the best of my knowledge) that did.  They don't any more; they didn't have the funds to renew their subscription.

Libraries, in my point of view, are as important as police and fire protection, as important as garbage pickup.  They safeguard our freedom of speech (yes, librarians.  Not politicians-with apologies to those who do care.)  Without them, where would we be?

Think your tax money is wasted on them?

Think again.  Especially if you have a family member with autism.

Knowledge is power.  Please support our local libraries in their fight to stay afloat.

Choose your Political Leaders Well

I do not take political sides in this blog.  However, I do tend to pay extra attention to candidates who pay attention to issues of interest to families who have a family member with autism.

I found an interesting blog on politics and autism recently.  I don't know if I will have time to follow it, but it does claim to be non-partisan and the writer does appear to have the political science "creds".  One thing I wish is that he would have posted (and maybe he did, I just didn't find it) "why" he is interested.

Still, it sounds like a good educated read, to anyone with the time.

Being Gobsmacked, Part 2

It's been 6 years now since my aunt died.

My mother died when I was just entering teenage hood.  It was a difficult time for me.  Various "substitute moms" entered and exited my life.  One of these was an aunt, my father's younger sister.  She had two daughters around my age.

My Dad, I think, came to his younger sister too, when my Mom died suddenly, and he found himself a single Dad.

So what does this all have to do with autism?  Bear with me.

We all bonded.  We started going to this sister's house for Thanksgiving dinner.  It was over 1 1/2 hours on the subway (New York City) each way, and then either a bus ride or a long walk.  Dad and I most times chose the walk.  We'd have Thanksgiving dinner and my Dad would ride back home alone-he had to go to work the next day.  But he let me stay overnight, and for a few hours this only child would have two sisters.  And, several times, I spent the entire Christmas school break with my aunt and my two cousins.

Years passed, we all grew up, we all had children.  My cousin had a child with learning disabilities and became a speech therapist, working for a school system.  We stayed in touch, all of us.  My aunt, sadly, had many health problems as she aged and old age was not a good time for her.  She finally passed on and I traveled to NYC for the funeral - not that far from where the two NYC Worlds Fairs took place.

My cousin gave the eulegy and I was....gobsmacked.

It seems that I had a cousin.  This woman has autism - as far as I know she is still alive.  In those years when she was born (similar to Bil) autism was at best considered a mental disorder and at worse cause to throw someone "in the garbage".  And who entered the fray to fight for her relative, and her relative's mother, was my aunt.  Tirelessly, we were told by my cousin, my aunt entered the fray again and again and again.  Helped her relatives to have a good life. 

I had never known this.  Had never known about what my aunt did.

How sad that I did not know until after she died.

Knowing about Bil, she had never told me, and I don't quite know why.  Well, maybe I do, because my aunt was never a person who would never brag or boast.  Well, her oldest daughter decided the world, or at least, her family, needed to

The unsung heroes and heroines of this world include my aunt.

Meanwhile, I keep drifting....

Being Gobsmacked Part 1

People in caretaking or other situations (such as having to care, or advocate for someone with special needs) find there are two groups of people:

Those who "get it"
And those who "don't"

For many reasons sometimes we find we really don't want to talk to people.  But sometimes when we do....

So many times people who haven't walked in your particular shoes just don't get it.  And that means me, too.  For example, I know someone whose teenaged son became a paraplegic last year due to injuries suffered in a car accident.  The doctors told her people with her son's injuries normally either die, or walk away.  Well guess what, her son split the difference.  We can talk on one level because of some of what I have had to do for Bil and other family members but I have never had to take care of, or advocate, a person who is partially paralyzed and is so mad about the whole thing that he takes it out on everyone around him.  And who deals with constant exhaustion trying to run a business and working full time at another job so she can have medical insurance.

So you really try to pick and choose who you speak to, who becomes your friends.  The uppermost thing on your mind when you  live and breathe a special needs situation (and I am so fortunate that I am not at this point in time, although there was a time or two in my life when I did) is....will people really understand?  Will you get support?  (which is NOT the same thing as people feeling sorry for you.)

Sometimes you just have to trust your instincts.

Recently, I was thinking of some instances when I have just been blown away by people...or, in the British sense, gobsmacked.  In Part 2, I want to talk about a person I knew on one level, but I didn't truly know "the rest of the story"until after she was dead.