A Local Front Page Story

Today, on the front page of our newspaper, is a story "When Care Can't Wait-But It Does".

My husband and I read the entire article.

Right now, for what it is worth, this article is the #2 most popular on the Press Connects website.  #1 most popular article is one about a man who died in a car crash.


It's about time this issue gains front-page status. This is hidden to a lot of people, but isn't going to be hidden for many people longer, especially as the parents of those "one in every 150" children age...as do these children, once they are adults.

It is going to be very visible.

Bil is just in the "front" of this problem.  Soon, his 80ish year old mother is no longer going to be able to care for him.  It may be tomorrow, it may be 5 years from now, but it is going to happen.

And, some years ago, she gave up the opportunity for Bil to be in a good placement, because she didn't want to have him leave her house.  Now, with increasing disabilities, she finds that Bil can only help her so much.  I really don't know what she was expecting. But what is done is done.

We were recently told by the supervisor of service coordination at the agency where Bil receives service coordination that the group homes in downstate NY are closing. And, because my mother in law rejected this placement, he was taken off a group home list.  (he is still on another list, NYS Cares).

Bil is in what is called the '2nd tier' of NYS Cares.  First tier are individuals who are a danger to themselves or others, or who are in imminent danger of being homeless.  Bil right now is not in this situation, but could be at any time.  2nd tier, where he is, is for individuals whose caretakers are aging and might soon be too infirm to care for them.

I want to make it clear that my mother in law cares for Bil by choice.  And, because I am not a mother in this situation, perhaps I can not totally understand how she thinks. But it is a matter of frustration, and it is starting up again.

We are going to see Bil and my mother in law sometime in August, and I wonder if this is going to come up. All the interested parties seem to be tap dancing around this-and I have expressed my frustration before.

But with these budget cuts, we have to be active advocates. We can't sit back anymore.

Summer Reading Autism List

It is interesting that "teen with autism" seems to have become a sub-genre of young adult literature.  It doesn't take much guessing to figure out why - with 1 in every 166 births resulting in a child on the spectrum, this becomes a very natural trend.

Here are a couple of books I found out about recently that have teens or adults with autism/Asperger Syndrome as the main characters.  Do I plan to read them?  Yes, if I can fit them into my summer schedule.

1.  House Rules by Jodi Picoult.  This won't be the first "autism mystery" book I've read.  A couple of years ago I devoured "The Curious Incident of the Dog in the Night-Time" by Joe Haddon.  I enjoyed that book very much:  the teenage narrator's thought processes were quite believable and a twist in the middle of the book only added to the suspense.  It wasn't a book about autism; it was a book that happened to feature a teen with autism as its main character. (note, the book itself does not identify the narrator as someone on the spectrum, but to me it is pretty obvious.)

I read some of the reviews of House Rules on amazon.com and the only thing that concerned me is that a reviewer with Asperger Syndrome thought it did not ring true, that it was more a work of someone who did a lot of research but hadn't really been exposed to people on the spectrum.

I've counted myself fortunate in knowing several people on the spectrum, including a very good friend of my son.  And, people on the spectrum can vary quite widely.  So I'll have to read and judge for myself.


2.  "Marcelo in the Real World" by Francisco X. Stork. This was recommended by the reviewer in #1 above.

Some of the plot of this book seems a bit strange but sometimes those kinds of books are the most rewarding.  Other than that, I didn't read the other reviews.  This one will be a "surprise me!" book.

If I do read any of them, I'll let you know what I felt about them.

A Woman with Breast Cancer - and Autism

I sometimes dread the time that Bil will become seriously ill.  You have to know that day will come one day.  How will doctors be able to communicate with him?  How will we?

One effect autism has on a person is that is makes it very difficult for that person to communicate with others.   And it is so difficult to know what that person understands, and doesn't.


Thanks to a blogger with autism who has been blogging about her experiences, readers are going to experience, second hand, how a woman with autism copes with a diagnosis of breast cancer.  I need to pay special attention to this.

Donna Williams, a talented artist in her late 40's (who also happens to have autism) from Australia, was recently diagnosed with breast cancer.

 One of the special things about Ms. Williams is her ability to communicate.  It is much more highly developed than the ability of Bil, or, for that matter, a lot of people with autism.  That is what makes reading Ms. Williams blog so special.

She has written several posts over the last several days about her experiences. She has chosen to make them public.  I can only wish her the best.


To me it is even more amazing that one of Donna's recent posts is "How Do I Talk to Someone with Cancer?"  This comes from her experience when she revealed her diagnosis to others.  (Warning - the post contains language some may consider inappropriate).

It doesn't solve the problem of how to communicate with Bil but perhaps reading Ms. William's experience, I will gain some insight for Bil.

Golden Alerts

Kudos to Andrew Cuomo, the governor of NY,  for signing into law a new alert system to alert the public when adults with cognitive impairments go missing or run away.  (this is a special problem for people with autism, also.). 

I don't like to take political positions but I will mention that people I know of "both sides of the aisle" like Andrew Cuomo very much.

Let's hope he continues benefiting those in our community who struggle with taking care of loved ones with developmental difficulties.

Vacation's Over

Both Bil and we have been on vacation - not together.

It's been nice but it's time to return to reality.

When we returned home, we found a phone message from Bil's new Medicaid Service Coordinator.  So trying to get ahold of her is going to be the first order of business.

We have found out a couple of details of the wonderful post-budget cut world for the developmentally disabled, and although we're told Bil won't be affected, I don't believe it.

More details as soon as we know more.

Summertime - and the Worry's Not Easy

Summertime is always a challenge for Bil.

He has asthma.  And very fortunately, he has an air conditioner in his room.

Before the modern medicines, Bil sometimes had breathing issues in the summertime.  Now, with the extremely hot weather we've had in the Northeast, this has become a concern again.  He won't exercise (he is afraid of an asthma attack) and, shall we say this delicately, his weight is catching up with him.  So he is basically a prisoner in his room.  He used to be pretty content in his room, but more and more he seems to want to come out.  But with the hot weather, there aren't many places he can go.

Weather is supposed to moderate after today-let's hope so.

Still Nothing

Right now things have been quiet on the "Bil" front.  He's on vacation from work, and we are having no success getting call backs from his new Medicaid Service Coordinator.

Because of things happening in our personal life, we haven't been able to do an every day call thing, like we will have to do.  This is one of the prime lessons of advocacy, that you have to keep (in a nice way) persisting.  You can't call and then wait and wait and wait.  You just have to keep callling until someone answsers the phone.

This is one of the hardest things about advocacy-being persistent.

I realize I haven't been posting very much recently.  This will hopefully come to an end in August, when I hope to be posting more.

A Visit

It looks like Bil will be visiting (with his mother, of course) sometime in August. Right now, we don't have much detail, but it sounds like it will be for two days.

One of the nights, we will probably have Bil as a guest in our house to sleep.

Other than that, I don't know what to expect.  Will write more when we have more details.

July Fest and Autism

We are hoping today to visit July Fest in downtown Binghamton.  This annual celebration features art, crafts, and, for the second year, a jazz festival.

This year, also....the Magic Paintbrush Project!

This is exciting news.  It can be difficult for people with disabilities to participate in a street festival.  Noise, people...not the favorite thing for people with autism.  And, if you are a family with a young child with autism, you have to try to balance the needs of your special little one with those of your other family members.

Just as a small example:  there is a booth with homemade soap.  They are works of art, and the owner of the booth is quite friendly. But the scent:  someone with autism would be able to smell it from quite a distance away and to them, it might not be pleasant.  The sensory life of someone with autism is not an enjoyable one; they feel and smell at such an intense level it can be totally overwhelming to them-which leads to tantrums or a behavior called stimming. Stimmng will certainly bring attention, unwanted attention, to the entire family.

It is so difficult for siblings (and it doesn't get easier when they grow up; trust me!) but they can be together at the Magic Paintbrush project.   When the member with autism can get involved in something like this, perhaps the next time a festival rolls around he or she will associate it with good memories.  It's always worth a try.


If this is your family, please stop by.  You'll be so glad you did.

It's worth the trip to downtown Binghamton.

New Yorkers - Your Input is Needed

If you are reading this, and you live in New York, or know someone with a disability living in New York in supported housing or a group situation, please click here.  Ditto if you know someone who is elderly, or suffering from mental health, alcohol or drug abuse issues.

Andrew Cuomo, our governor, is asking that citizens and other interested parties "submit your suggestions and evaluations of state programs related to developmental disabilities, mental health, alcohol and substance abuse, children, and the elderly."

Specifically, "Please enter your suggestions and/or recommendations to be considered as part of a system of effective safeguards for vulnerable populations in residential care."
It only takes a few minutes.

Still Nothing

Still no call backs from PARC.  Still no intro to Bil's new Medicaid Service Coordinator.  And, due to a personal issue in our lives, we haven't been able to follow up this week.

So advocacy goes.  Trying to make room for advocacy with other issues that may be going on is always a balancing act.  And, it remains true you always have to chase social agencies.  Blunt but true.

Hopefully I'll be able to start posting again more regularly next week.

Not in Our Backyard?

Not in our back yard!

No group home with children with autism in our neighborhood, said residents of a neighborhood in Queens.

Of course, this could get very interesting.  Let's look at some facts...

If one out of every 166 live births, or 150 births (depends on who you ask) result in a baby who develops autism, and a certain percentage of these children need a setting other than their homes....

Well, what then is the mathematical chance that you know one of these families?  Or that you are related to someone in this circumstance?

Or that (like me) you are married to a sibling of a grown up who one day may need some kind of group home setting?

Sounds like shooting yourself in the foot to me.

Instead of saying "not here" the question becomes:  where?  It has to be somewhere.

Of course, nothing is every "that simple"  What starts out as a NIMBY story turns out to be not that simple, because the neighborhood in question already has a group home - a block from the proposed group home.

Perhaps no happy ending-and no easy answer either.  I'm not going to propose one either, except to say our society has to face this issue head on-and face it quickly.

That's what epidemics are all about.
One day those children are going to grow up.

Happy Independence Day

Happy Independence Day to my readers in the United States.

Independence Day can be a not-so-happy occasion for families with a member who has autism.  Many people with autism do not like loud noises. It is possible to prepare and train a person with autism to tolerate fireworks, but it is never a favorite activity for someone like Bil.

I've only watched fireworks with Bil one time.  It was up here, one year, and he seemed very anxious the entire time.  It was the company picnic for a relative (and yes, it featured fireworks), there were large crowds and, to be honest, I didn't even have that wonderful a time myself.

This blog post has another perspective on the matter.

Many times, smaller is better.

Local Artist with Asperger Syndrome and the "Geek" Stereotype

Several years ago, I met a young teen in the Oak Tree program (BOCES) who had a talent for art.  This person isn't her, but there is a reason I am blogging about this artist with Asperger syndrome.

There is a stereotype of the person with Asperger syndrome.  They are "geeks", interested in science, nerdy, that kind of thing, or so the stereotype goes.  There is some truth to that (like many stereotypes, this has a degree of truth in it - and Bil, who has classic autism, has a special interest in the weather) but people would be surprised how many people with Asperger syndrome and autism have artistic talent.  Bil has never shown an interest in art, but who knows, was he ever really introduced to it?


Locally, we have something called the Magic Paintbrush Project.  This started here in the Binghamton area, and spread.  It serves all disabled populations, not just those with autism.  It welcomes adults, and if Bil had wanted this experience I would have been more than happy to introduce him to it.

Maybe one day I will, anyway.

Asperger syndrome isn't just for geeks anymore.  In fact, it never was.

"Autism Solutions"

While we wait for the information regarding Bil's new Medicaid Service Coordinator, I've picked a book out of the library called "Autism Solutions: How to Create a Healthy and Meaningful Life for Your Child" by Ricki G. Robinson, M.D. 

I usually shy away from books like this because I find that the "child" means just that:  child.  Once again, Bil being born years too early.  But I took a chance on this book because of flipping through it and finding a discussion about seizures and autism.

I've said that I don't want to discuss Bil's health issues.  But, in reading one of his early evaluations, I found something we had never been told - that at one point in time, Bil had been put on a seizure medication.

Surprise!

Talking to my mother in law, we found that there was a suspicion that Bil might be having seizures, so he was put on the medication.  The medication made him very sick, and he was taken off.  End of story.

I was told by an autism advocate that the observation in a evaluation done over 30 years ago probably didn't mean any much.

But one thing that really shines through with this doctor is her compassion, and her ability to "walk in the shoes" of her patients, and their families.  (Another thing was her not putting down homeschooling as an educational solution, but that is a story for another day and time.)  She did have a section on adolescense.

I am definitely going to spend some time with this book.  And, I can hope that one day she will write the sequel:  "Autism Solutions Now that Your Child Has Grown Up".  A portion of sales of this book benefit an organization, Autism Speaks.  With all due respect, I say to them:  If Autism Speaks speaks for those with autism, it must speak for everyone.

Including Bil.