The Friends Network

Something that Bil's Medicaid Service Coordinator suggested we look into for Bil is something called The Friends Network.  She told us it was for people who are high functioning (which Bil is considered.)  It encourages socialization, obviously.

On the surface, it sounds wonderful. But I think Bil is going to need a lot of support to participate.  And if it is presented to him, and he says no, will they just let it drop?  Sometimes the new emphasis on "People First" frustrates me.  Bil's wishes should definitely be taken into consideration but he is going to resist anything that is new, period.

Quoting from their website:

"The mission of The Friends Network as a not-for-profit organization is to maximize opportunities for individual choice, to advance independence, and to develop circles of support through a person-centered approach in the areas of social relationships, recreation, life management skills, community integration, and vocational services for adults with developmental disabilities."

What I hope is that Bil will be given the opportunity, encouraged by those who know how to communicate with those with autism, to "get his feet wet".  Just one outing that is pleasant to him - who knows.

Even if he doesn't interact the first time, even if he stays on his own-he will still be absorbing.

I wonder how we can make this work for Bil.

What I hope

Hard of Hearing

I want to take a little break from talking about Bil and talk, instead, about an incident that occured on the bus I take to work.

There are a number of disabled individuals on that bus.  Here in upstate NY, a lot of people who take mass transit are either elderly, too young to drive, have suspended licenses for one reason or another, can't afford a car for whatever reason, or have a disability that makes driving impossible or difficult.

It is a fact of life on mass transit that people will shut themselves off from others in one way or another.  Bus riding, for many people, is not a social occasion. (On the other hand, there are those who love to chat with the driver, and if the driver chats back, one can find out a lot of very interesting things!)  Rather, they bury themselves in their cell phones or in their MP3 players or Walkmans. (yes, some still use Walkman CD players.)

The rule is that if you play music, it isn't supposed to leak out of your headphones.  Well, today, a young woman was playing music and it was LOUD.  Sometimes you can hear the base line, but this was so loud (and I wasn't even sitting next to her) you could hear the entire song.  As a veteran of mass transit, I buried myself in my magazine.  But one woman across from this young lady took exception.

"Turn it down!" she said.  No response.

"Turn it down!" she yelled, loudly.  No response.

"She's playing it too loud to hear you" another passenger offered helpfully.

The woman appealed to the bus driver.  Now, this particular driver doesn't hesitate to discipline his passengers. (some won't).  He stopped the bus, got out of his seat and walked over to the passenger. She was still oblivious!  He just about got into her face.  Now she paid attention.

"I'm hard of hearing!" she protested.  "How am I supposed to play my music?"  (If you've ever heard people with hearing impairments talk, they sometimes have a certain quality to their voice - and I heard it in her voice.  I don't think she was lying).

I don't think she should have been blasting her music.  I don't care that that was the only way for her to hear it.  Not in public.

I may not be too popular with some, but people with disabilities deserve (and are legally entitled to, in some situations) a "level playing field".  What they are not entitled to is special privileges.  Like disturbing an entire bus with their music.

I find it hard to listen to music on the bus.  There is a lot of noise.  As it happens, it is not enough to be a disability for me, but I do have a degree of hearing impairment. (I think it may have come from an antibiotic I was given, years ago, to treat - ironically, an ear infection.) Guess what?  I don't play my MP3 player on the bus.  I don't have the right to impose myself on others.

I don't think this hearing disabled person had that right, either.

People First - Still Waiting to Find Out

I had blogged earlier about the People First medicaid waiver that is being developed in New York State.

Bil's Medicaid Service Coordinator tells us that the Waiver is still being developed and she has no details - but maybe she will by the end of the year.

So, we'll just have to wait.  Waiting, of course, becomes second nature for anyone involved in the world of developmental disabilities.

But when I find out something, you'll know.

The Need That Is Not Spoken Of Part 2 of 2

In yesterday's post I talked about a little joke my mother in law tried to play on Bil, me and my husband several years ago - pretending for a minute that she had met a man (she is a widow) and was engaged to me married.

I was thrilled for her, in that moment before she admitted it was a joke.

And what about Bil?

He was not thrilled.  He really didn't react strongly verbally (that would have been surprising) but you should have seen the shocked look on his face.  And for some reason tonight, I started to think about that.

Does Bil have feelings for the opposite sex? Does he yearn to have female companionship, to put it bluntly? This is something that just is never spoken about - one of those taboo topics.  How dare people with autism have those kind of feelings?

Remember, we are speaking here of a man who is a man, a normal man as far as chemicals and hormones, but a man with a severe communication disability.

Well, Bill does have "those" feelings.

Several years ago, he was given a gift card at Christmas time for Hooters.  I forget who gave him the card, but we were there when the family opened their presents.  We don't have a Hooters where we live and I don't know where the nearest one to Bil's home is.  But he certainly had heard of Hooters, and was thrilled to get the card.  (I don't know if he ever was given the opportunity to use the card.  I've never asked, either.)

At that point in time, my mother in law told me something interesting.  And that is the only time, in all these years, that she has admitted that Bil does have "those" kinds of feelings.

"Bil is very excited to get this card" she told me 'because he loves blondes.  There is this blond meteorologist on The Weather Channel, and Bil has a crush on her." (I won't name who.)

Bil watches Fox News a lot, and I wouldn't be surprised if it isn't strictly because of the politics, but because of all the blond female commentators that channel seems to use.

But you know what?  No one ever asks Bil about whether he would like to learn how to talk to women.  Not that I expect any social services agency to hunt up girlfriends for him (I know I am really veering into a taboo area here) but rather - they are supposed to work with Bil to improve his various skills.  And isn't the ability to get companionship (I mean companionship, not a one night thing) a basic human need and want?  Doesn't Bil deserve love as much as any of us?

That night (the one I spoke about in my last post) where he thought for a moment that his mother had found a new male companion - what was running through his mind?  That there would be a new, strange man in his life? (Doubtless - this would have been a moment of transition for all of us).  Or, would it be a matter of him having to share his mother, after so many years, with someone else?

Or was it a yearning of sorts, a wish that one day he might have a woman in his life?

With Bil - again we just don't know his thoughts.  We may never know.

The Need That Is Not Spoken Of Part 1 of 2

You know, this blog post reminded me of something my mother in law tried as a joke several years ago.

We picked her up and she flashed a large ring.  "I met a rich man"  she said "and he just proposed marriage to me."

"That's great!"  I exclaimed. (I was in the car, along with my husband, and Bil.)  After all my mil has been a widow for over 10 years now.  She would make a lovely wife to the right man - someone who would love and cherish her, and help her with her increasing physical frailness. But I never thought "it" would happen.

It hadn't.  It was a joke.

But what was really interesting was the way Bil reacted.  And it got me to thinking...which I will blog about more tomorrow.

The Carey Settlement

Although I am the sister in law of an adult man with autism living in New York State, I do know several parents of minor children with autism.  As such, I am pleased to announce a settlement in the Carey case.

No amount of money will ever bring back this 13 year old boy, murdered by those his parents entrusted his care into.  Can we say justice was done?  Perhaps it is more a matter of this underside of caring for children with autism being exposed.

How I pray that Bil will have good care on the day he must enter the system for residential care.

Flood Recovery, Neighborhood Buyouts and Autism

My autism advocate acquaintance is back in her flooded home.  Hurray!  The school bus is running for her son finally and his routine is somewhat restored.  She has much hard work ahead but there is a sense of community in her neighborhood that will support her in the days ahead.

What, then, will happen if her neighborhood is offered a buyout?  I haven't heard of one yet but it may be a distinct possibility in our brave new world of the post-flood Southern Tier of Upstate NY.

Moving is traumatic for us all.  For you to wake up one day to find flood waters sweeping your neighborhood, followed by sewage, gawkers and loss of routine must be terrible for any of us.  And, as so many other things are, so much harder for someone with autism.

I don't know how much of her son's life has been spent in this house, but it is bad enough for the losses they have already suffered.

I hope a solution is found, because that neighborhood is such a wonderful one to live in for its residents. What a shame to perhaps lose it.

I know this isn't blogging directly about Bil, but I can so easily imagine him in this situation.

Another Gap in Posting

I apologize for not posting the last several days.  Flood recovery, even for us (not as impacted as many we know) is still mentally exhausting.  We hope to have better days ahead.

We have been in communication with Bil's Medicaid Service provider in the meantime, but that will have to be a story for a less busy time.

So Grateful

As family of minor children and adults with autism  in the Southern Tier of NY and the Northern Tier of Pennsylvania struggle to keep routines and get their lives back to normal, the shelters empty out and families return to their homes.  For at least one such family, they are going back to a house still without power, and needing to be completely bleached out due to sewage having gotten into the water. 

I shudder to think, since I live in a flooded neighborhood - what if I was responsible for Bil?  What would I have done when the evacuation call came?  Would I have stayed in a flooded neighborhood?  Would I have tried to bring Bil to a shelter and take my chances?  I don't know. What I can tell you is that rational thinking goes out the door at a time like that.

Speaking of loss of routine - life stops in a flood.  You can't go anywhere.  The smell is incredible.  Traffic noises stop but there are helicopters in the air everywhere. And the relentless sound of rain coming down...coming down....still coming down, as the water gets higher and higher.

What if we decided to try the shelters?

One shelter was at Binghamton University.  We probably could not have reached that one.  One was at Johnson City High School.  We may have been able to get there at first but eventually all the streets around us flooded. How anxious would Bil have been?  How anxious would we have been?

I am so glad we didn't have to make that choice for Bil - that he was over 100 miles away, safe.

Free Transit This Week Due to Flood

I can applaud a lot of government agencies and people this week in the wake of our area flood - I would like to especially give a shoutout to Broome County mass transit, which a lot of people with disabilities depend on.

Because several of the routes are disrupted, BC Transit is not charging fares this week.

Having routing changes can be a huge thing to someone with autism dependent on the bus coming to a particular place at a particular time (and also, the rest of us!).  So I also applaud all the government agencies trying to get roads back to normal so mass transit can continue normally. The goal is to have that completed by Monday.

May they make that goal.

Thank you again!

One More Take on Natural Disasters and the Disabled

I wanted to pass along a little story a neighbor of mine told me when we returned to our flood stricken neighborhood in upstate NY on September 11.

This neighbor's mother has kidney disease. She recently received a kidney transplant (one of the lucky ones, I might add, but that is a story for another day).  When the call came to evacuate our neighborhood, this daughter had a terrible choice to make.

Go to a shelter?  Or take her chances with a local relative?

She chose the relative. Why?  Simply put, her mother never would have survived the shelter.  Fortunately, the relative was not flooded out. But what if? 

Why couldn't a transplant patient go to a shelter?

Simply put:  too many germs.

On top of that, the neighbor had to quickly gather all of the anti-rejection medications her Mom takes.  There was about $2,300 worth.  If those were lost, the insurer would not give out another supply.

Just another day in the life of the medically fragile, you might say.  But ponder this.

One of the leading causes of non-genetically related kidney disease is diabetes.  And, guess what is growing rapidly in this country?  Yes, the percentage of people with diabetes.  Want to bet we'll be in the middle of an epidemic of kidney disease in a few years?  

And having diabetes in the middle of a natural disaster - in that context people with diabetes are disabled, too.  They just can't throw their meds aside.  They need frequent meals and can't just eat anything presented to them.

So never mind the burgeoning population with autism.   Besides the developmentally disabled our society is going to be dealing with a lot of people caught up in disasters who are medically fragile in one way or another.  Are we prepared for this?  What do you think?

More Autism Flood News from the Triple Cities

This news was released last night.  I know a couple of people in the Twin Orchards area of Vestal, NY including someone with a teenaged son with autism.  This is the latest of several blows to the life of this family and their neighborhood.  Bottom line, it seems likely this neighborhood will be condemned.

The only good news is that her son's school reopened yesterday so he can try to settle back into some kind of routine, at least for part of the day.

My husband and I know several people now who have lost everything, including a woman 5 months pregnant with her first child.  Many people need everyone's thoughts, prayers and support right now.  But I especially feel sorry for this one mother, as she has done so much for other people.

I hope I can find a way to help her.

Help with the Flood From a Person with Autism

Yesterday, I returned home with my husband.  We only got water in our basement, but much of what was in there was ruined.  Mold (or something dark) was already starting to grow on the walls.  It was not pleasant.

To the rescue?  My son and his good friend, who has Aspergers Syndrome.

Let's put it this way - flood water stinks. It is slimy.  You have to use chemicals to help with the cleanup.  These chemicals stink too.

And the friend didn't hesitate.  True, he was being offered some money but it still had to be hard. He had just returned from where he (yes, he also) had been evacuated to.  And after he left our house, he went to help his grandmother, whose house in another part of our county was (I hear) under 5 feet of water.

Thank you, friend.

Autism and Taking Refuge from Flood in School

Today, I got back into my evacuated neighborhood, evacuated Thursday due to flooding caused by former Hurricane Lee.  But an autism advocate I have written about before, Sally Coletti, is still not able to move back into her home.  She lives in one of the areas that has been heavily, horribly impacted by the Binghamton area flood.

She isn't the only one with children with autism that has been left temporarily homeless by the flood.

One thing that has been disrupted here is school.  For children with autism, school is part of the routine of their daily lives.  When there is no school they aren't happy because their routine has been disrupted.  To children with autism, a good school placement is like a lifeline.  And our area is blessed to have a great autism school placement for those functioning highly enough to be part of it - the Oak Tree Program.

But what happens when students are in shelters?  Can the school buses run?  (I've blogged a little before too about the fact that people involved with shelters rarely have training to be able to work with children and adults with autism - causing an extra nightmare for those families.)

I don't know if Sally Coletti's school district will be open tomorrow, or where her family has taken refuge. But if I know the Oak Tree program, they will make sure their students can return to school.  Even if those students can't return to their homes.

Why I've Been Silent

To my readers - I am in one of the evacuated areas of the Triple Cities in upstate NY.  We are OK but have not yet returned home.  When I do I will be blogging more about certain experiences.

Please be patient - I will return!!

Bil Is Home After Leaving Due to Hurricane Irene

Power to his house (well, his mother's) has been restored.  Bil is home.  And, quite happy about it, as is his mother.

He weathered the storm (no pun intended) very well,  I am very, very surprised.  Normally, the loss of routine is very stressful to him (as it is with most people with autism).  There has to be something at work here, and I don't know what it is.  There is a truth here almost in my grasp, but not quite.

Bil should have been upset.  But, unless he did a super job of hiding it, he wasn't.  At least, he wasn't in my presence.

I wonder if there are things about his life that he does not like.  Oh no, I am not implying in the least that he isn't surrounded by love at home.  But sometimes I almost wonder if he is....bored?  Not challenged?  Does he dislike his job? (I suspect that he does, but that is something to write about another time).

With his lack of communication skills, I wonder how we could ever know.  I end a number of posts this way and.....I still struggle with this.

Autism Manga

I found, at the library today, a manga (Japanese comic)  book called "With the Light - Raising an Autistic Child" by Keiko Tobe.  This is a series, and I found the second and third books.

I have never read manga before, but it is about time.  I enjoy learning about other cultures and why not in this way?  Apparently this series began in 2000 and now it has been translated into English.  According to my research, this series even was made into a television drama.

Sadly, the author of this book died last year.

(interestingly, Amazon.com doesn't mention her death in their review of these books.)

This is a very long book.  I'm not sure I will have the time to read it.  But this has gotten a lot of very good reviews so I think I owe it to Bil to try to read it.

I will report on the experience.