Watching and Waiting #AtoZChallenge

We watch and wait to see the latest developments in the life of my autistic brother in law, Bil.

Perhaps we should be more like April the Giraffe, a giraffe living at Animal Adventure Park in upstate New York. 

The private zoo where April lived decided to train a webcam on her this past February. She had been a prime attraction at the park, and was expecting a baby calf.  The park expected the webcam would be up just a few days.  Her fans could watch her give birth, and then they would take the webcam down.

Nothing went as planned.  Nothing.

April didn't give birth until April 15.

A few hundred fans, in the meantime, blossomed into hundreds of thousands.  In fact, many autistic people, especially children, found fascination in April. (Bil was not one of them - up to now, he's showed little interest in being online). They, and neurotypicals, watched April obsessively.

The staff of AAP was not ready for their fame.  Going viral can be a blessing and a curse.  Now, they had to scramble to accommodate all the news agencies, the new fans, the old fans, those who claimed the pregnancy was a hoax, those complaining about the camera angles, those demanding the lens be cleaned, the water be moved, or whatever else.

But April, the unknowing center of attention, just continued to do what she always did (in a way, just like Bil).

Here are the lessons of April the giraffe I learned while watching and waiting for April to give birth (and after the birth):

1.  Expect the unexpected.
2.  Do the best you can with what you have.
3.  Don't hesitate to ask for help if things become overwhelming.
4.  Don't let the naysayers get you down.
5.  Don't be afraid to reach for the stars.

"W" Day on the Blogging from A to Z Challenge.

Thank you for joining me on my Unknown Journey.

The Humorists #FridayReflections

Today, on #FridayReflections, the prompt is:  “To be yourself in a world that is constantly trying to make you something else is the greatest accomplishment.” There is a certain alchemy about words and the process of expressing yourself.

Bil, my developmentally disabled brother in law, has problems communicating but, without fail, he is always true to himself.  Here's one example:


There is very little, in my opinion, funny about the upcoming Presidential election.

Bil, however, thinks in different ways than many of us.  Having autism means that it is difficult, many times, for him to communicate his thoughts with us.  If he laughs, it is (many times) at private jokes. He will burst out laughing at the dinner table or while listening to some of us talk, whether or not the topic of discussion is funny (to us, that is).

Bil goes to a day program two or three times a week, where he is encouraged to engage in various activities - exercising, bingo, Sudoku , and even coloring.  A couple of times a year, family members can attend a review of Bil and his progress.

At the last review, my spouse, one of Bil's brothers, was told that Bil likes to tell political jokes.  And apparently, they are good ones (or at least not anything that upsets anyone).

It's nice when you hear about a side of someone else you think you know. It is so hard to know Bil because he is closed off to us so much of the time.

But he loves to watch, to observe.

Which brings me to another man who loves to watch, to observe, and to use his words.

His name is Garrison Keillor and many know him for a weekly show he did for many years until recently - A Prairie Home Companion.

What I never knew, about recently, is that Mr. Keillor is on the autistic spectrum.  Just like Bil.

Is there a hidden Garrison Keillor inside of Bil?  We may never now, but I suspect his inner life is quite rich.  And, every minute, he is true to himself.

Can we say the same?

Come on over to #FridayReflections  and check out what other bloggers have written.

Bil Speaks for Himself

It was something to see.

I would almost call it a miracle.

Bil knew that someone was coming to my mother in law's house to access her physical condition.  Normally, if a stranger had come to the house, he would have hid in his room.

Not this time.

Bill sat on a chair, near the recliner my mother in law uses, as the person interviewed my mother in law.

At one point she denied having fallen for almost a year, and Bil immediately corrected her, listing times she had fallen, and one time she had tripped.  He named dates and places.

He left at one point, but came back a few minutes later.

He stayed there for almost the entire time.

My theory is, he is deeply concerned for his mother in law, and sensed this person was there to help.  He still wasn't able to articulate his thoughts, but the fact that he stayed, and the fact that he wouldn't let his mother lie, I think spoke for herself.

Good for him.

If only we could wave a magic wand and give him typical abilities to interact with people.  What might we see?

But last week, Bil spoke for himself.  And I was so proud.

The Miracle of Communication

We got tired of trying to interact with all the government agencies that are supposed to be helping Bil and my mother in law.

We hired a geriatric case manager.  It wasn't cheap, but it was worth it. She assessed my mother in law yesterday, with Bil present. (I will write more about Bil's behavior during that assessment this weekend.)

My mother in law made excuses.  I can't do this because....I don't want to try, because....but this person had a comeback for every one (some funny, some compassionate) and she did this in such a way that my mother in law immediately bonded with her.

It's all in knowing how to communicate.  This woman could communicate with my mother in law in a way that none of us know how.  We need to learn this skill.

The arguments she uses with us didn't work with this skilled woman, who has been doing this type of work for years. 

The assessment is:  my mother nedsto move.  She needs to regain whatever strength she can.  She needs to socialize more.  There will be ways to do both at the same time.

I think we are going to FINALLY start to make some progress, all because of a skilled communicator.

And, as a plus, she is going to help with Bil's situation.  Not just my mother in law's.  She is going to make some phone calls.

I hope they get returned.

The Miracle Project and The Magic Paintbrush Project

This post isn't about Bil.  Well, maybe it is, in a way.  Two shoutouts. 

Again, I can wish these projects were around when Bil was younger, but wishes really don't accomplish anything.

I wanted to give a shout out to actor Jack Black and his work with autism, as he raises awareness of autism
through The Miracle Project.

And locally, there is a wonderful organization in my city called The Magic Paintbrush project.

One day, there will be an organization just for Bil.

So many lost opportunities.  We still hunt for the found opportunity, the one that will make a true difference in Bil's life.  Until then.....

Sigh.

Driving Mr. Bil

One of our concerns when my husband spoke to Bil's Medicaid Service Coordinator yesterday was about Bil and his need to get out into the community.

He loves to be taken to certain places - the Mall, Barnes and Nobles, Wal-Mart, even a CVS.  He likes to browse around and buy a treat for himself.  When his Mom visits someone, Bil likes to purchase a dessert - a box of candy, or something simlar.

When we come and visit, he wants to be taken somewhere.

My mother in law has increasing mobility problems. She is in her 80's and will one day reach that not-so-magic moment when she will have to hand over the car keys.

And then, Bil will need someone else to drive him.  We live over 100 miles away, so it can't be me or my husband doing the driving.

But he is very resistant to having others (other than my husband, or maybe one of his other siblings) take him places.  He really would like it, always and for all time, to be his mother.

This is one of the things we discussed which brings me to a rant I will publish soon - about Person Centered Planning.  Bil will be offered something, he will say no, and under the rules of Person Centered Planning his no means no.  So if his medicaid service provider offered him someone else to take him around, he would say no, reflexively.  Because of his disability.  Because he hates and resists change.  And a new driver is change.

But he has to be able to depend on people other than his Mom and his siblings.

More on this another time.  I think my husband made some progress on this issue.

60 Minutes Revisited

I had blogged earlier when the 60 Minutes was shown recently with the interview with Steve Jobs and then a segment talking about children with autism communicating through I-Pad apps designed for this purpose.

There is now someone talking about "another side" of this.

Bil has always been verbal (although he didn't talk until he was nearly 5) but he has never evinced an interest in computers.  I've tried to go online with him and he really wasn't interested.  I even tried taking him on the Weather Channel website.  He loves to watch it on TV but on the web - no interest.

So it is certainly a myth that all people with autism love computers.

Nor does Bil's mom have an I pad or even an ereader.

I wish there was a way to give Bil the gift of easy communication.  Although he is verbal he can't sustain a conversation for more than a few words, even on a subject  of interest. (He will basically blurt some fact like "The Mets won last night" and that's about it.)

Although-would we want to hear what he would have to say to us if he could be helped by an I Pad app?

The Longest Conversation

Sunday, I saw Bil engage in the longest sustained conversation I've ever witnessed between him and someone else (in this case, Bil's brother).

It was only a couple of minutes.  But it's a sign that Bil is trying to...change? Grow?  I still can't put my finger on it.  It's like the interest in food I mentioned yesterday, which I will come back to again (hopefully) soon.

The subject matter was simple.  Bil wanted to know if his brother was "going out".   I think what Bil wanted was to be taken somewhere.  It seems (as part of this change) that he wants to be out and about more and more-but on his terms.  I think his mother's increasing fraility may be causing that. She just can't drop everything and take him somewhere.  Mobility has been a very big issue for her for most of this year-and will be for the rest of her life.

So what was special about the request?  Well, usually Bil talks in one or two sentences (if that). And then withdraws into himself.

This time the words just gushed out. 

But, we had a full slate of things to do for Bil's Mom, and my husband had to tell him "no, we aren't going out." (later on, we needed to run an errand, and he never came out of his room to ask if we could take him.)


He seemed to accept the "no" with good grace.

Was this just one time?  Or are we starting to see some kind of change/growth?

More thoughts on Autism and Compassion

As I've blogged recently, Bil has found himself in a caretaking role for his mother while she recovers from an injury.  He does help if she directs him to, but the question I've wondered about lately is - how much compassion can a person with autism be expected to show?

This recent blog post by Donna Williams, a woman "down under" with autism, gives us an intriguing clue.  As does the fact that one of the links on her blog is to The Hunger Site, one of several related "click and give" websites.  I would dare say that Ms. Williams not only cares about the homeless, but has come up with some intriguing "outside the box" thinking regarding how everyday people can help them.

So what does this have to do with Bil?

Because Bil's autism causes him to have a lot of difficulty communicating with neurotypical (non-autistic) people, it can be so hard to judge how Bil thinks, and how he perceives the world.  Donna Williams provides a small window into that world, but so much about Bil remains a mystery, even as he tries to help his mother the best he can.  Or so we hope.  Does he feel trapped?  Does he understand her situation?  Is he scared?  Or is he oblivious, on many levels, to what is happening to his mother as she ages?

We will be down there again next month, to help out some more, and to observe.

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.