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.

A Lottery Christmas

Christmas has come and gone.

Bil got what he wanted - Barnes and Nobles gift cards and chocolate.

And he got something he did not ask for - lottery tickets.

This was obviously Bil's first experience with lottery cards.  These were the scratchoff games you can buy in machines here in New York for $1, $2. or even $5. The $2. games, for example, can have grand prizes of $25,000.  You scratch off numbers and can win.

My husband showed Bil how to scratch off the numbers and tried to explain how the game worked.  Not sure Bil got it, but he sat there patiently and scratched all the tickets.  Alas, he didn't win anything.

I'm glad.  Because if he had won, I wonder if he would have wanted to start playing the lottery.  At his financial level, it would be so very tempting.  I've not heard of people with autism developing gambling habits but....hey, you never know. 

Would he have considered it harmless entertainment like the rest of us?  I'm glad I didn't have to find out.

Merry Christmas With the Family

Today, we will be together with relatives of my husband's (including Bil) for Christmas.

Bil's MSC (Medicaid Service Coordinator) reports that everything is going well in his "other life" at the local ARC, where he participates in a sheltered workshop work environment.  His last annual review, which my mother in law participated in by phone, went well. 

We are waiting for the decision on if his Medicaid will be extended for another year.  With the budget cuts, we can only hope that outcome is favorable.

Now we can only hope that government programs don't continue to be cut.  AND that we (it may be "me" as all the siblings seem so afraid of bringing this up) can convince my mother in law that Bil needs to live away from home, and this needs to be done before she dies (which we hope isn't for a long time but one never knows.) SO frustrating!!!!

I think Bil enjoys these family gatherings a lot.  And that doesn't have to end if he lives away from home!

But I will put my frustration aside for one day and enjoy the day.

Write My Congressman on Christmas Eve?

I'm not known for writing my congressman.  But, in this busy holiday season time, I ran across this blog post. 

Perhaps I should write this, using her template

Dear Senator Schumer:
I am the sister in law of a man in his 50's with autism. We need so much help just to keep our families together. Autism is so complex.

One of our country’s blessings is our human services. Let’s take Medicaid as an example, because I have firsthand experience with that program.  Bil has just lost lost his Medicaid Home and Community Based Waiver.  We've never been able to get reshab services and.With so many having been educated with our public school system (also far from perfect, but lightyears beyond what the disabled used to have — Nothing) isn’t it a profound waste of human potential to let these people just languish for the rest of their lives, doing nothing and living in their aging parents’ homes — and that’s only the lucky ones who have parents up to the task. 

Medicaid is not the place to experiment with deficit reduction. As unpleasant as it is, we all know that revenue to pay to run this country comes from taxes. Please look to the wealthiest in this country first, before looking at the poorest and most vulnerable. Medicaid helps the most vulnerable. 

Back in November, there was a question regarding whether one of Bil's medicines would be covered by Medicaid any longer.  Fortunately his Medicare Part D is still covering the medication but it was a scare never the less.  We know Social Security and Medicare are in trouble.

Will our developmentally disabled fall through a frayed safety net?


Yours truly, (and happy holidays)
Bil's sister in law

The Importance of Completing Growth

I recently found a book in the library called "Making Sense of Autistic Spectrum Disorders-Create the Brightest Future for Your Child" by Dr. James Coplan.

The name immediately rang a bell. I had the pleasure of meeting Dr. Coplan years ago.  He used to practice in the Syracuse area and later moved to Children's Hospital of Philadelphia.  Simply put, he is a developmental pediatrician who has a number of sub-specialties, and is uniquely qualified to work with children with ASD's - and their families.  When I met Dr. Coplan years ago, what impressed me the most was his compassion.

Sometimes, doctors with great knowledge can be cold, and that is the last thing a family who has a member with autism needs.

Now, years later, I found out more about the background of Dr. Coplan.  He has a younger sister with a developmental disability - in other words, he is a "sib" besides being a doctor.

He is a very accomplished blogger.  I met the Doctor before blogging existed so I don't know why that surprised me - but I had never attempted to find his work through the Internet.

But I really don't want to write about Dr. Coplan.  I want to write about his book.

While this 400 plus page book gave an extensive overview of many issues with children (and I highly recommend it to those with younger children).  Like so many of these books, they "fade out" when it comes to adulthood.  Usually that is disappointing.  But, since Dr. Coplan is a pediatrician, it is understandable.

But what Dr. Coplan said about adults with autism....well, it is so much what I feel, also.

Dr. Coplan explains that a child's "job" is to grow up and become independent. The drive to independence begins the day after birth. 

If an adult with a disability is kept at home, he or she never can complete their growth.

Dr. Coplan realizes such an individual might never be independent.  But there is a difference between living in a supported environment away from the parents (he did mention group homes, which many in the disability communities would rather go away, as an example) and staying at home.  And he was very emphatic about this:  the individual with the disability has to leave the home to complete the growing up process.

The parent who prevents the child from leaving is doing him or her a grave disservice, especially if there has to be a sudden change in living situation (such as the parent dying suddenly.)  He even gave an example of such an instance (a parent dying suddenly.) 

This is what I have been saying all along!!!!

The Long Silence

I haven't been posting much lately.  I am here but a lot has been happening - just when I should be blogging the most, I find myself not blogging.

My life has been full of a lot of things.  Some involve Bil but a lot do not.

I also know that the first rule of blogging is "blog often".  But this blog is more a place for me to blow off steam, in addition to providing information and content.

So I apologize for the silence.  We'll see what the next week brings.

Very Busy Weekend

We had a nice Thanksgiving visit with Bil.  A lot (comparitively) of interaction.  And, some unexpected paperwork.  I am still working through all of the details but promise to post the details later in the week.

I haven't been making many entries lately but I will try to change that - but not until next week.  I will be learning something about Medicare, Medicaid and perhaps some other programs.  The hard way, I'm afraid.

More later.

Another Victim of the Upstate NY Flood

It has been a tradition, for many years, for the Southern Tier Independence Center (STIC) to host a Hometown Holiday Lighting Festival. This started in 2001, in Otsiningo Park, and a carload of people, for a very reasonable price, could drive through the park and enjoy lighted holiday characters.

It was a major fundraiser for STIC.

And now it has been cancelled for this year (and possibly for good), due to our flood of earlier this year.  After torrential rains the beginning of September, many places were flooded.  Otsiningo Park is prone to flooding (that is one reason there is a park there, and not housing developments) but this was bad even for them. The water got into the electrical outlets the displays depend on.

Another "victim" of our floods? STIC must now try to raise money in another way, competing with flood related charities and others.  This will be a hard holiday season for our Triple Cities of New York State.

STIC serves people with all types of disabilities, including autism.  If Bil lived here he may have received service coordination through them.

Not much to say....I hope they can make up the shortfall.  Or, people with autism and other disabilities will pay the price.

Buried Feelings

We've heard from Bil's newish Medicaid Service Coordinator with a status update.  The MSC has been visiting Bil on the job.  Bil is getting to know her, and is comfortable enough with her now to initiate conversations. This is something he does not due except with family, generally.

The topics of conversation are generally those he talks to (in very abbreviated conversations) family members about.  The weather, for example.  And, some other topics he generally does not talk about - politics.  

Bil has been expressing some concern about his mother.

This is not the first time Bil has shown concern about his mother, and it makes me feel (once again) that there is so much right underneath the surface of Bil that he just can't express.  (which is one reason why I have so many misgivings about People First benefiting Bil - because if you can't communicate, and if you can't communicate your need to be able to communicate, you are never going to get help with communication.  So because Bil isn't expressing his desire to communicate he will never get that help.  Around and around this will go forever.  But I digress.)

But he can communicate his concern and it seems to be a concern about his mother's ability to drive.  Ah, that is sometime else too....the keen observer of events.

What has he seen, exactly?  We just don't know.  Is it just age related issues - so far she isn't showing the obvious signs of needing to give up the wheel (lots of minor accidents, etc.)  None that she is admitting to, anyway.  But we see him next, in less than a week, how can we find out?  We aren't going to have time alone with him - he basically comes up for air (mealtime) and then runs right back into his room, not to be seen again unless there is a public place he wants to go to.

Always a challenge.

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?

Stuck Stuck Stuck

Bil's Medicaid Service Coordinator tells us there is nothing that can be done to help us find emergency housing for Bil as long as we are not his guardians.  This is because Bil has not expressed any interest in this option.

People First strikes again.  I maintain once again that People First, while great for those without cognitive disabilities, is a disaster for those who can not understand complex concepts such as "if my mother, heaven forbid, drops dead tomorrow, my future is going to change tremendously and I can not stay in  my mother's house, where I have always lived, because there is a reverse mortgage on it and the bank will kick me out."  In not so many words, that is.

As far as we know, my mother in law has never been declared Bil's guardian, but she seems somewhat secretive about this.  If she were his guardian, she assumes someone in the family is going to take Bil in.  Somehow, this conversation never takes place.  It is just too painful for any of Bil's brothers or sisters to bring up. Never mind that most of us are older than Bil, that some of us have health problems, and that Bil really deserves something better than being passed from sibling to sibling as we pass on.  Which will be, in all probability, before Bil leaves this earth.

So do we start the legal proceedings to become guardians?  This would, I fear, tear the family apart as long as Bil's mother is alive.  The only hopeful thing is, the brothers and sisters may be together for Thanksgiving.  But I am not optimistic about this conversation happening.  I fear no one will want to "ruin the holiday".

If Bil's mother dies before we can have a frank discussion a lot of holidays are going to be ruined.  Why do we always seem to be stuck in quicksand?  I'm so tired of whining about this.  I was hoping to have a hopeful blog, not a whiny blog.  But we are stuck stuck stuck.

NY Whistleblowers

Nothing much to report re Bil this Saturday.  So instead, I will pass along a link to the latest scandal in NY State:  what a surprise, people who were supposed to shield whistleblowers - employees of group homes who might be reporting instances of neglect or abuse - were instead reporting the names of the whistleblowers.

We have never considered group homes as a  housing option for Bil (who lives in New York State) but one never knows what the future will bring.

Reading some of the instances of abuse/neglect in this article makes me hope that we never have to consider this option.

Voring and Autism

Today was a milestone for the son of an autism advocate I have written about before.  It has been quite a year for this young man.  Turning 18, and then having his neighborhood flood severely, causing him and his family to have to relocate, and disrupting his school routine.  (at this point I don't even know if they have been able to return home.)

But today he voted!  What a milestone.

I'm proud of you, young man!

(I don't know if Bil voted.  I hope he did.)

A Mother Who Cares for the Housing of Her Child

I haven't been reporting on Bil's Medicaid situation lately.  It has not gone well, and I would rather not talk about it.

We are not going to get much help as far as getting a housing situation for Bil set up.  Rather than vent my anger over the situation (while we try to juggle work situations, flood recovery from our community flooding in early September due to a tropical storm that dumped some 10 inches of rain on our fair community, and other issues including a health issue in my family) I found this blog post.  A mother with the energy to go through this process, the process that we just don't seem to have the will to pursue.  May she obtain what she hopes to obtain for her son.

It isn't that my mother in law doesn't care. It's that she doesn't get it and no one wants to confront her.  And someone we thought was going to be an ally in our efforts turned out not to be.  Shame on us for trusting that person.  We just don't have the energy to pursue it.  I am feeling quite overwhelmed right now.

Right now I really don't want to say more.  I will when I am ready to.

A Disturbing Video

Everyone who has raised a teen knows that they try your patience and sometimes your sanity.

In the now famous "teen being beaten by father who is a judge in Texas" video, sometimes that can take an ugly turn.  The then-teen, now in her 20's, has Celebral Palsy, but that really doesn't enter into this situation. This, from a interview on the Today Show, seems to be a lot more than a "special needs teen" type case as the mother claims to have been abused by this same man, her ex-husband.

 I frankly hope this judge ends up in jail for what he did.  This is way beyond discipline.  If he had done this to a stranger out on the street, he would have had to answer to the law.

Children with disabilities...any child, really...deserves better than this now famous video seen over 1,000,000. times on You Tube.  I have not and will not watch the entire video and will not post the link to the entire 7 minute video on You Tube.

Bil was never treated like this growing up.  And if he had, it would have been Just Plain Wrong.

The Silence of Life

I don't know why it took this long for me to find out about thisThai life insurance commercia.  But I have.

This speaks volumes for so many aspects of the suffering a sibling, a parent, or a child can suffer due to the harshness of society towards those involved in the lives of those with disabilities.  In the case of this commercial, it is a Deaf father who can not speak, and his teenaged daughter on her birthday.

I think anyone who has raised a teenager will identify with this little story.

The Thai Life insurance commercials are some of the saddest around.  This one speaks volumes to society's prejudice - not just in Thailand, but in our country.

Support the Sibling Support Project Through Holiday Shopping - Please!

I am passing this email along from the Sibling Support Project.  This is a most worthy organization, providing a safe place to vent, to share experiences, to ask for information, and just simply to network with other people who have disabled siblings.  The type of disability isn't important.  It can be physical, mental, or developmental.

I honestly wish there was a similar organization for the "others" in siblings' lives - such as their husbands and wives.  But there is not.  But at least the siblings have support.

This will not cost you anything.  If you plan to do your holiday shopping (Christmas, Hanukkah, Festivus, or whatever) on Amazon, simply use the link below to access Amazon.com.  It will only cost you a few seconds, and will not cost you a penny.

Thank you for your support!


Dear friend of Sibshops and the Sibling Support Project,

If you’re like me, you will start thinking about gifts for loved ones in the next few days. And, like me, you may prefer shopping online instead of heading to the mall.

If you are one of the millions who shop at Amazon, I have a favor to ask: Will you support the work of the Sibling Support Project by beginning your shopping by “entering” Amazon through the Sibling Support Project’s “Astore”?

You will get the same great deals you always get at Amazon, and Amazon will donate up to 6.5% of the purchase price to the Sibling Support Project!

Here’s the website for our Amazon Astore. Please add it to your favorites or bookmarks.

Once you add something to your shopping cart and proceed to checkout, you can then wander anywhere on Amazon. (And, if needed, you can yank any item out of your shopping cart prior to purchase.) Any eventual purchase made within 24 hours of entering the Astore will benefit the Sibling Support Project. 
 


Thank you for your support! Here’s the link again.

One last thing!  If you'd like to celebrate the holidays with a direct gift to the Sibling Support Project please click here.  Those who give at the $100+ level get a free copy of our newest book, Thicker than Water: Essays by adult siblings of people with disabilities!

Wishing you all the best,



Don Meyer

Director, Sibling Support Project

PS—In case you were wondering, we never know who buys what on our Amazon Astore, so we’ll never know you bought grandpa a subscription to Playboy.
 


PSS—If you think this is a cool way to do good while doing the inevitable holiday shopping, will you please share this email with others?


Epilepsy and Autism

I encourage you all to read this post by a woman with a husband and children with epilepsy.

This is not an "autism" post but a lot of the information (it's a long post but worth it) would be of interest to family members of people with autism.

At one point in time Bil was suspected of having epilepsy but it turned out he (apparently) does not.  However, it does seem that the rate of epilepsy in those with autism is higher than that of the general population.

I'll let this powerful blog post speak for itself.

Autism and Employment

Today will be a short post as we cope, long distance, with Bil and my mother in law needing to be evacuated out of their home (without power since Saturday afternoon) to a relative's home about an hour and a half from her.  Fortunately, the roads were in good enough condition to permit this.

Bil only works part time, in a sheltered workshop, so getting time off from work for this latest evacuation (they also had to be moved, up here, due to Hurricane Irene in August) isn't a problem.

So it was interesting when I found this article regarding adults with autism and employment.

Bil is working in a sheltered workshop, part time - he is one of the "lucky ones".

How sad.

Weather - the Sequel

Due to the snowstorm in downstate NY yesterday, conditions are pretty bad in the area my mother in law and Bil live in.   Trees are down everywhere.  Some areas downstate got as much as 19 inches of wet, gloppy snow.  Mil and Bil have been without power for over 24 hours and here we are 150 miles away coping with our own problems.  Fortunately, family a little closer than we are are going to be able to drive down and get them, and take them back home.  So they will be in a safe place with power.  I wouldn't be surprised if it takes upwards of a week for their power to come back on.

We were afraid of this after Irene but, quite honesty, since the flood in our area in early September (which impacted us personally) we haven't been giving it much thought.  We aren't in a position to be able to put her and Bil up either, at least for another couple of weeks.

I hope this isn't a bad sign as far as the winter they are going to be having.

Sometimes when it snows....it pours.

Winter Weather in October

It is as if summer was only a dream.  We are back to winter and...my mil losing power due to storms.  It happens one or two times each winter.  It's not good that the first time is in October this year although...hopefully it will get above freezing there tomorrow.

Along with what may be 3 or 4 million people before this is over, my mother in law and Bil are without power.  I am hoping very much that they get it back sooner than the 5 days it took after Hurricane Irene.  Because this time, it is a matter of heat both for Bil and for my mother in law.

It was good, in a way, that this storm happened.  We've been thinking of our own issues a lot recently (also weather related, ironically) and had not looked into a generator for mil.  I fear it will be too expensive.  But my mother in law can not keep losing power.  And it has to be hard for Bil, too.

Temple Grandin on TV

Within a week after watching a DVD of the Temple Grandin HBO movie, we got to see her on TV once.  And she was to appear on ABC Extreme Makeover-Home Edition tonight, but we didn't find out about it in time.

Still...isn't it strange the way you will read or see a program or movie on something or someone, and suddenly that person (or a place, or an event) will suddenly pop up everywhere.

We saw the 60 Minutes last Sunday on Steve Jobs and to our delight, the show talked about I-Pad apps for people with autism.  I'm not sure Bil would benefit from any of that as he is verbal, but it was interesting to learn about.

Meanwhile, the Extreme Makeover program did a home makeover for an Oregon couple with two childen with autism, and I was able to read a local paper's article on Temple Grandin's visit (which was actually in September.)

One thing I've never checked into is whether Bil knows anything about Temple Grandin, or even if he knows if she exists.  Maybe - with an I-Pad app? we could one day find out what Bil thinks of her.

Hundreds Search For Missing Boy with Autism

A walk through a Virginia Civil War battlefield may prove deadly for a missing non-verbal boy with autism.

I hate to feel pessimistic about this, and my heart goes out to this family of a boy who wandered away Sunday during a family walk in the North Anna battlefield.  But the temperatures have gotten down into the 40's.  "Emergency packs" left by searches (with survival equipment) are left unused.

We can not lose hope.  Hundreds of volunteers are searching for him.

But we may well be facing another tragedy of autism.  How many times has something like this happened this year?

Is there a solution?

Justice Finally for Mark Lindquist?

It is the sad but sorry truth that people who work with the developmentally disabled, in so many cases, make barely above the minimum wage.  This is one reason why we can not get anyone to work with Bil and haven't been able to despite years of searching.  But people do go into that line of work.  And sometimes things don't work out too well for them.

And then, when an aide tried to save the lives (in vain) of three men with Down Syndrome as the Joplin tornado of earlier this year bore down on them, and suffered severe injuries to the tune of over $2.5 million dollars - his employer's work comp insurance company denied the claim because he hadn't put himself into any more danger than anyone else in the tornado's path!  Even more outrageous, Missouri law allows this.

Thanks to the power of the press, the insurance company has now reversed itself.

The aide was seriously considering selling his house to pay his medical bills.

I do wonder, though, how many other work comp claims have been denied, leaving people who work for the well being of our society's most helpless - bankrupted by work related medical bills.

Thank you, Press, for bringing this outrage to national light.

Happy Birthday to an Autism Advocate

Happy birthday, Sally.  I don't know which number birthday it is, but I am so glad, after your battle with cancer that you are being given additional opportunities for birthdays.

You have done so much for the autism community in this area.  And now you have to deal with a random force of nature.  In September, Tropical Storm Lee dumped massive amounts of rain on your neighborhood. Flooding resulted.  Your neighborhood, along with several others, are now local synonyms for disaster.

I drove through a couple of blocks of your neighborhood for the first time since the floods today, heading towards a shopping destination.  The exit from the highway has been open for a couple of weeks now but I just didn't want to go there. There is still so much work to be done in your neighborhood, Sally.  There are still porta potties on several street corners, I see..  In one yard, or what used to be a yard I guess, a large tent was sheltering people preparing lunch for the neighborhood.

I think of you and your children living in the middle of all that.

But I also know that you are not prone to self pity, Sally.  What I can hope is that karma, or whatever, will bring "normal" back to you-whatever normal is.  You've done so much for other people, especially the children and young adults of the Southern Tier with autism.  You deserve a very happy birthday.  I hope you got one, and had the time to enjoy it.

Next year HAS to be better!

The Temple Grandin Movie

I had blogged (it seems like a million years ago but it was only in June) about the Temple Grandin movie made for HBO and how my local library had finally gotten hold of it.

Yes, I did get it out, and yes, I loved it.

Why did I love it?  Well, yes, the actress who played Temple Grandin did an excellent job of portraying her, I felt.  In fact, the entire cast did a wonderful job.  But more than that, it wasn't just a story about autism.  It was a story about a woman pioneer in a male-dominated industry (cattle ranching and the design of equipment related to ranching and slaughtering) and what she had to overcome.  For any woman it would have been daunting.  For Ms. Grandin, it may have approached a miracle (and if I was Temple, I'd be seeing a picture of Jesus walking on water as soon as I read "miracle")


Too late, I realized there was a commentary feature (by Temple herself) available with the film.  I was very pleased to find out that "Hollywood touches" were kept to a minimum, at least according to this review.

A British newspaper has a wonderful interview on Temple and the movie.

As for Bil's mother and Temple's mother (who is still alive and is similar in age to my mother in law?)  That will make a good post for another day.

Autism and Medicaid

While we continue to wait (still no word from Bil's Medicaid Service Coordinator) for word on how we can best attempt to fight Medicaid's decision to no longer pay for one of Bil's medications - a medication that does a lot to improve Bil's life - I want to give a shout out to the blog Autism Policy and Politics.

I was interested in a  recent article about - Medicaid.

Bil lives in New York State.  For what it is worth, his primary care medical doctor does not take Medicaid so his mother must pay for his doctors visits out of pocket.  Fortunately his mother can do this.  One day we may have to.

It is also difficult in the part of New York State we live in for people on Medicaid to get any kind of dental care.

Private insurance?  How does someone whose sole income is SSDI, and a part time job in a sheltered workshop, pay for private insurance?

So this is the situation that Bil, and many others with developmental disabilities, find themselves in.

I was disappointed when I once again did not hear from the MSC today.  I think I will drop the MSC an email this weekend and touch base. 

Almost a Year Later -The Saga Continues Part IV

Back in October of last year I wrote the following post, which I have somewhat edited.


What I wrote then is in italics, the update in "regular" font.

Back around 2001 my husband and I attended a seminar on housing by someone who worked for what was then called OMRDD.  What we found out was that housing options for developmentally disabled are confusing, wrapped in government red tape, and had lots of long waiting lists.

Things haven't changed.  The person who did the seminar very kindly had dinner with me (I wasn't able to come to the presentation) and some other family members.  He is retired now, and was a consultant for a while, but I have lost his name (and card) in the mists of time.


Things have changed-for the worse.  OMRDD may have changed its name but it hasn't changed its stripes.

Due to budget cuts, Bil's ARC can not build any new housing. We are now told that, however, the existing housing (totally inadequate) will continue - for now.

Bil's Medicaid Service Coordinator doesn't feel Bil could ever live independently.  However, she feels he would be a good candidate for some kind of supported housing situation, with perhaps one or two other "roommates".  I am not sure a complete evaluation has ever been made regarding his life skills.  We've also been trying for about three years to get Bil a service provider under NY's Residential Habilitation Program (Res Hab) but no one seems wiling to work with a 50 plus year old man.  I'm sure that is combined with the relatively low wages for such a position compared to the cost of living in Putnam County.
 
Still no Res Hab.  In fact, Bil was taken off the Home and Community Based Waiver because - he isn't getting services.  Why isn't he getting services?  Because they were unable to get him Res Hab!  Talk about a "Catch-22"!  But the new service coordinator Bil has now is trying.  I hope she can find something before budgets are cut even more.

The good news (comparatively) is that Bil is still on the NY Cares list, so there is a bed out there for him somewhere if his mother's health takes a turn for the worse.  However, who knows where that bed would be.

We actually started this advocacy journey, as I mention above, in 2001.  And where have we gotten?  Maybe just a little further along on the NY Cares list.  That's all.

Waiting to Advocate

I am hoping Bil's medicaid service coordinator (MSC) is having success with her research in trying to figure out how we can get NY Medicaid to continue to pay for one of his prescription medications.  It's a medication that benefits him very much, and can be difficult for a person without autism to switch due to its nature.  For Bil, I fear the experience will be traumatic.

So far, nothing, and the MSC has made me quite aware that it is going to be quite a struggle.  The MSC is facing this with a lot of consumers (as "clients" are called.)

I've blogged about this before, and all I can say is that I am still in a holding pattern on this, and also the wait for more details on the People First waiver.

Wish Bil luck with the NY budget cuts and all NYers with autism, because they are going to need it.

Bleep Yeah

Although I sometimes vent concerning my mother in law, an "autism Mom" (her son with autism is in his 50's) she is a true Autism Mom.  She cleared the path for the generations of autism Moms to follow.  How sad that the rates of autism still seem to be increasing.

I would like to provide this link to a blog post about "autism Moms". 

Looking at this, I found one of the funniest sites you will ever find out there.  This Autism Mom is the total opposite of my prim and proper 80 plus year old mother in law.  But I have a sneaky feeling they would love each other.  Well, maybe not, because their politics are totally opposite.

But I still love this woman's point of view.  And even the four-letter words she uses (constantly) to express herself.  Cause sometimes you just have to do that, when you face something like autism.

Bleep yeah.

Give her website a visit.

The Department Store Fall

Today I was shopping in a local department store when I heard a very loud "thud".  Within seconds, I heard exclamations of surprise and employees running towards an escalator.

It was obvious something bad had happened.

A few moments later I saw an employee carrying a cane away from the scene.  And then I heard sirens, and a couple of medical people entered the building.

My heart sank when I saw the cane.

It could have been my mother in law.  And what if Bil had been there with her, as he is enough times when she shops - because he likes his outings.

I wonder what happened.  I probably will never know.

Autism and Medical Coverage

I found this blog post interesting - about the possible effect of the Health Care Law on autism mandates.

In case you are wondering why so many people with disabilities need Medicaid, this is a perfect example.  Health insurers have been slow to "step up" and cover autism.

Meantime, we wait for Bil's Medicaid Service coordinator to finish her research on what we may want to try to do to keep Medicaid coverage for one of Bil's medication - they will no longer pay for the brand name, and it is doubtful right now that they will even pay for a generic.

But on the other hand, people with autism may finally be able to get some health insurance.  In the past, health insurers have refused coverage for non-autism related illnesses - just because the person has autism.  Shall we hope no more?

And now, back to fighting Medicaid formularies.

Fred Fay and Temple Grandin

Today, while I wait for Bil's Medicaid Service Coordinator to provide us more information regarding Bil's medication issue and Medicaid (it may take upwards of a week or more for the MSC to research), I received a sad email from Wrightslaw.

Fred Fay, who suffered a spinal cord injury years back when he was 16 and became a pioneering advocate for people with all disabilities, passed away on August 20.

The good news in this is that PBS will premiere a film on his life, Lives Worth Living, on October 27.

This film is advertised to be both a biography of Fred Fay and a documentary about the Disability Rights movement.

Today I also found, in the local library, the HBO movie on Temple Grandin, arguably the most famous person with autism alive today.

Two people who affected our lives-and Bil's, in different ways.  Two wonderful films in a month.   Can't wait.

Budget Cuts Come Home to Roost

After months of wondering what effect the budget cuts in NYS programs would have on Bil, I need wonder no more.

The new Medicaid Service Coordinator (MSC) is in a hard spot concerning the situation with one of Bil's medications no longer being covered under Medicaid. (I blogged about this several days ago)  It's a type of medication that is hard to switch (that's all I will say about it.) but very necessary for Bil's health.

If Medicaid won't pay, Bil must pay out of pocket.  Now keep in mind that Bil works part time, in a sheltered workshop.  This is not the road to riches.  It is the road to poverty.  The one hope here is to try to get Medicaid to accept a generic (which may or may not work like the brand name - with this medication generics are not always as effective) and we will have to see if the generic works.

If not, we try to find out where to get this drug at a reasonable price.

With all the budget cuts in New York State this, according to the MSC, many people dependent on Medicaid are in this same situation.

Please keep in mind, when you read about Medicaid, so many people think "welfare queens".  But many disabled people are on Medicaid.    It is a life line for many.

A lifeline that is fraying.

We'll have to see what the MSC can come up with.  But how many times does the MSC see this with other clients?  And will this be just the first of many situations to come for Bil?

Self-Advocacy

Just a short, hopeful note today.  It appears Bil's current MSC (Medicaid Service Coordinator) is very approachable by email.  Things finally seem to be moving.

It also appears she is willing to work with Bil directly rather than have to run everything past my mother in law like the previous MSC seemed to like to do.  I don't intentionally want to cut Mil out of the loop but Bil has to learn to self-advocate.  I think he's capable but needs practice.

I hope we can continue to progress on this front.

More about Self Advocacy and Autism

I've been thinking a little more about the fact that Bil's Medicaid Service Coordinator contacted us about a request Bil had made - actually a concern that he had expressed to her about the fact that Medicaid will no longer pay for one of his prescriptions unless he switches to a generic.

What I found interesting (although I do not know the entire story) is that he came to his Medicaid Service Coordinator, rather than his mother.

That makes me very happy.

No, I'm not happy that my mother in law was bypassed. But rather - Bil is in his 50's.  He should be able to advocate for himself. 

He's never had any formal training, and he has a disability that affects his ability to communicate.  But when he needed help, he sought out someone (his new Medicaid Service Coordinator) he hasn't known for that long.

I have a feeling this new Medicaid Service Coordinator is going to work out well for Bil.  Let's cross our fingers.

Generic Drugs

It seems that Medicaid is no longer going to pay for a medication Bil takes because he is not taking the generic.  Bil is concerrned and went to his Medicaid Service Coordinator (MSC) for help.

I am so glad to see that Bil took this initiative. 

My research seems to indicate that the generic, in this case, is not as effective as the brand name.  I take a number of medications and with one exception, they are all generics.  I found that one generic just did not work.  I take the brand name.  I am fortunate in that this (brand name) is not tremendously expensive.

I see where Medicaid is coming from.  They need to spend their money wisely. As a taxpayer I agree.

But I also know from the above experience that (despite what health insurers say) that certain generics do NOT work as well as brand name.

At any rate this is a  medication Bil needs.  Looks like I will be putting on my advocacy hat. But first, Bil will need to try the generic.  He will need to communicate with us if he feels any change for the worse.

It will be a challenge for him to put this into words rather than into behavior.

This will be interesting.

UPDATE:  The problem is not that Medicaid won't pay unless Bil takes the generic. The problem is, apparently, that the medication has dropped off Medicaid's formulary.  His MSC is going to try to get it covered as a generic but needs our assistance.  If they won't he will have to pay out of pocket.

An Insight into Anxiety

Another restless night, hearing the rain pound on the roof here in the Southern Tier of New York.

Will the rain stop?  Will it flood again?   Should I go down and check the basement?  Should I check our street to see how much water is in it?

Over 100 miles away, I'll bet Bil is watching The Weather Channel.  He's always been anxious about rain.  He hates thunder, but even rain scares him.  One time he was looking forward to a visit up here but it was raining, and he refused to get in the car.

He must be watching the radar and weather report for our area.

About three weeks before our area was flooded, with almost half of the city of Binghamton evacuated (the call came for people I know at 3 am), Bil and his mother were brought up here for safety from Hurricane Irene.  Bill and Mil missed about 5 days without power.  But their basement was OK.  No water.

Now I have a little taste of what Bil goes through on a daily basis.  The difference is, of course, is that I do not have autism.  I can tell myself to calm.  I can tell myself I am not helpless. I can research how to deal with the mild post-traumatic symptoms I and others who went through the flood may have.  I can tell myself I can take action.  I can tell myself it will be all right.

I don't think Bil can do any of these things.  And therein lies the difference.

I thank life for this opportunity to walk in Bil's shoes.

Prince John and Bil

Whenever I watch a movie, my ears always perk up when I hear a story or link to a disabled person.

Tonight, finally, I got around to viewing the move "The Kings Speech".  This award winning movie talked about the speech impediment of Prince Albert, the future King George VI who was the King of Great Britain during World War II.   He was the father of the current Queen, Elizabeth II.

What I did not know about George VI (besides the fact that George was not his first name) is a little known historical fact that he had a severely disabled youngest brother, John, who died in 1919 at the age of 13.  John was mentioned briefly in the film.  As the fifth and youngest son of King George V, he would have been 5th in line to the throne.

John did not have autism.  He had severe epilepsy, and died as the result of a seizure.

As was the custom of that day, John was kept out of the public eye, least an epileptic seizure bring shame to the Royal family.

Not too many years ago, that also would have been Bil's fate, even if he had been a member of the British Royal family.   Especially sobering is the fact that many people with autism have problems with seizures (although Bil does not.).  But Bil has never been hidden away.

Times have certainly changed.

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.

Bil Still Not Able to Go Home after Irene

Bil is spending at least one more night up here in upstate NY.  Power to the house where he lives with his mother in law was just restored tonight, and a neighbor advises us the power comes on, it goes off, it comes on.

His cold seems better.  So did his appetite.

We wouldn't be able to take him and his mother home until the weekend - my husband and I both have to work.  But another family member may be able to take them home. We aren't sure he will be able to do so - it's a bit up in the air. We should know tomorrow.

Tonight Bil's appetite seems to have improved. I think he is sensing the end of his exile.  He knows the power is back on. When he was getting ready to leave he turned to me and said "we have a 50-50 chance of going home tomorrow".  And then he said "I hope I go home tomorrow".

This is one of the clearest communications he has ever had with me.  It came out of nowhere.

Not only that but Bil seemed not to mind us not having the TV on during the visit.  I'm a bit burned out on noise (my mother in law is hard of hearing and she wants the TV on at supersonic levels) and I just wanted it off.  He didn't even ask once to have the Weather Channel on.  His anxiety level was way down.  I guess that is what hope does to someone-the hope of seeing home again.

It's been a good experience having the family up here, and it has also been stressful.  But for their sakes, I hope they do go home tomorrow.

Autism and Taking Refuge From The Storm

Bil is lucky.  He has been with family in the Southern Tier of New York since this weekend, before Irene moved in.  Where he lives is still without power.  The power won't be restored, according to their electric utility, before Thursday or Friday.

He has been patient, amazingly so, but is restless and we know he wants to go home.

He is fortunate in that he has visited here before, and is familiar with his family here, and their homes.  But he has been a bit under the weather (literally) with a cold.   He is really fortunate that he did not end up in a shelter.  And that we did not end up being flooded out, which could have been a possibility.  We didn't miss being flooded at our house back in 2006, when massive flooding hit our area.

People with autism who end up in evacuation shelters are unlucky indeed.  They are noisy, smelly, chaotic:  Everything that people with autism can not tolerate.  There is no opportunity for privacy, such as Bil has here.  Bil can watch TV here if he wants.  In a shelter that would be impossible.

Bil suffers a lot from stomach problems, and he would have no choice of food in a shelter.  And no private bathroom to work out his stomach problems in.

People with autism can react to stress by having tantrums, or stimming, and people who run shelters, generally, have no clue as to how to deal with that behavior.  In general, they do not receive this type of training.  Even after Katrina, even after other disasters, this training is lacking.  Medicaid service coordinators do not deal with the possibility of their clients being evacuated with creating plans for their clients.  It is something not thought of until it is too late.

That is going to become a problem as our population of people on the spectrum continues to increase.

I have no solution for this.  Just gratitude that Bil did not have to go through that kind of experience - this time.  Because we had a friend who offered to help us out - and it turns out she was a victim of the flooding.

Let's home Bil doesn't lose patience before it is time to go home.

Bil is Safe

Bil is safe up here.  He was brought up here by a family member.

It will be an interesting weather day for us here on the East Coast.  A friend in NJ says things are pretty crazy there.  I've been in communication with a friend in Brooklyn and a friend in Queens and they are OK but there is a lot of damage out on Long Island.

As for the suburb where Bil lives - we will have to wait till tomorrow to see.  Don't know exactly when Bil will be able to go home so right now - we just watch and wait.

The Approach of Irene - 24 hours to Go

NYC is hunkering down with mandatory evacuations.  My mother in law and Bil are not in those zones.

LoHud (local newspaper for Westchester and Putnam County) has lists of emergency services.

Bil and my mother in law are going to stay put in their suburban NYC home.  It is going to have to be a good choice because the bridges across the Hudson River are probably going to close sometime tomorrow.  We won't be able to get to them even if we wanted to.

We've done what we can; we hope the family member shows up to stay with Bil and my mother in law.

Although we are not in an official danger zone where we are, we just bought bottled water and will make sure our cell phones are charged.

Earlier this week there was a bad storm at my mother in law's house and Bil was terrified. Well, I would have been too!  I hope Bil's anxiety doesn't overwhelm her.  Or him.

24 hours to go.

Autism and Hurricane Irene

We aren't the only people out there worrying what will happen if Hurricane Irene impacts a family member with autism.

I remember accounts of the aftermath of Katrina, and the inability of families with a family member (I won't say "child" because there are adults, too) to get timely help.

There is at least one resource online but again (and I hope I am wrong) this concentrates on families with autistic children.  As in non-adult children.

Well, I have a family member in his 50's.  He is terrified of severe weather.  We are hoping that a family member living much closer to his mother than we do will be able to stay with my mother in law and Bil, who live together in a suburb of New York City.  The family member will make sure they have adequate supplies of food and water, that cell phones are charged, that they will not be alone.  Otherwise, we would have had to go down and get them.

That in itself would have been stressful for Bil, because his routine would be disrupted, and because he seems to exist in a constant world of low level anxiety.

And one way or the other, Bil is going to undergo major stress and anxiety due to Irene.  As I blogged before, Bil follows the Weather Channel religiously so he already knows Irene is on the way.

He isn't the only one.  In doing an Internet search I came across a blog written by someone with autism, talking about the coming of Hurricane Irene.

This is going to be an anxious time for all of us - the relatives near NYC and we, out of the direct path, but holding our breath to see what will happen.

Hurricane Preparations?

Trying to ensure that my mother in law has adequate food, water, other supplies, and possibly someone can either stay with her and Bil or even bring her up here.  Hurricane Irene is on the way, and people in the New York City metropolitan area don't have experience with hurricanes - unless they used to live in a hurricane area.

Long distance caretaking can be so much fun (not).

Better to be safe than sorry.  We are in the way, too, but it wouldn't be as bad here as it may get where Bil lives.

As for us - we need to get some water stockpiled also.  And some canned goods.  For us it will be more wind and floods.  This area has had massive floods, and we have a lot of trees around us.  For Bil, I hope he is not terrified.  He is always glued to the Weather Channel and he is terrified of heavy rain and lightening.  He certainly knows this storm is coming and he is probably driving my mother in law crazy with his anxiety. She is a strong woman, but you can only be so strong when you are in your 80's.

Hurricane Evacuation?

Just as I was wondering how the Northeast earthquake affected Bil (did he feel it wherever he was?  How did he react?) we have to worry about Hurricane Irene.

My mother in law's house appears to be in the high risk zone.  An 80 plus year old woman and her son with autism are not a good mix with a pending natural disaster.

They are not in a flood zone but this would not be a good thing for them to go through especially
a. if they lose power or
b.  a tree falls on their house

Now we have to wonder if we should drive down there and bring them up here.  We don't have much room and there would not be motel rooms available here, with the students returning to college. (we already know this from a previous time they were going to visit.)

We have a couple of more days to make this call.    The funny thing is, we are on the border of the high risk zone ourselves.  We may be moving her out of the frying pan and into the fire.

We just don't know.

Social Security Disability in Danger of Insolvency

So....still another worry concerning Bil.

Apparently the SSDI system is on the verge of insolvency. This fact has been swallowed up in all the discussion about Social Security in general.  But, a lot of disabled people depend on their SSDI.  And Bil is no exception.

 Bil's father is dead.  His widowed mother takes care of him.  She has her Social Security. Bil gets SSDI on his late father's account.  It is NOT welfare.  It is a benefit based on his father's work record. And Bil has his job in the sheltered workshop, and his SSDI check.

Sheltered workshop jobs, it seems, do not pay well.

Could you live on 50% of minimum wage?  We don't know exactly how much Bil makes (his mother has never disclosed this to us) but it is possible it is only 50% of minimum wage.  Or it could be that Bil isn't exploited in this way, but he can't be making that much. And, the area where he lives with his mother (the NY Metropolitan area) is not a low cost of living area.

How many other people are in this situation?  The SSDI isn't spending money.  It's living on money.

To understate it, this isn't good.

The Next Steps

I am going to take a change and email the new Medicaid Service Coordinator assigned to Bil. The previous one never did much with email, claimed that PARC (Putnam ARC) discouraged it.  I would find that very hard to believe nowadays.  I think, rather, she must have been uncomfortable with it.

The new Medicaid Service Coordinator is young. Hopefully she will email back. I plan to ask if we can set up a phone call at a convenient time for all of us (probably just my husband and her, but to include me depending on her work hours.)  We have a lot of questions to ask.
-what do budget cuts mean for Bil?
-exactly what is the People First program and what does it mean for Bil?
-is there any chance of getting Reshab services for him, to help teach him skills leading to independence?

Finally we understand that Bil at work, will ignore, or procrastinate, with work he is assigned that he just doesn't feel like doing.  At the sheltered workshop level this is tolerated.  At anything higher, it would never be.  Bil has to be able to learn a better living than he can at a sheltered workshop, working part time.  Is there any possibility that this problem can be worked on?

Regretfully, this has been ignored in the normal business of our life.  I am ashamed to make this admission.  I will send the email tomorrow, and see if we get a response.

Another Triumph for People with Disabilities in NY (we hope)

Governor Cuomo does it again.

Although I am not sure exactly how badly budget cuts will affect Bil (we already know it won't be for the better) Governor Cuomo is proving to be a good advocate for the developmentally disabled.

It's about time for some accountability.

Short and sweet:  the former OMRDD can no longer get away with policing itself.

Abuses must end.

Let's hope this is a step in the right direction.

Help or Not Help?

I am very glad I have not been faced with this dilemna

Read this post.

What would you have done?  Would you have ignored the struggling people?  And how would you have reacted when you finally offered help, and they were nasty back? 

I'm not sure what I would have done.  And that's sad, in a way.

What a world we live in.

Trying to Exercise Bil

Every time we see Bil (right now, about once every two months - we live 150 miles from him) it is obvious that he has gained weight since the last visit.

Bil lives with my mother in law, whose mobility continues to deteriorate due to arthritis, and falls.  She used to love to mall walk but it is almost impossible for her now.  The winter especially poses challenges. This past winter he was housebound for weeks as his mother recovered from a fall.

Meantime, there is no close family member to take up the slack and accompany Bil to the mall. (or drive him there, either).  When family comes, their concentration is on my mother in law, and Bil's exercise needs get overlooked.. Bil does like to walk in the mall, but he does it slowly. The one time we ever tried to get Bil to do some exercise walking with us, my mother in law practically read the riot act to us because - what if he had an asthma attack?

I now discover that we are not alone in this fight.

The next step would be:  how do we implement the suggestions in this article?  Bil can't get to the mall on his own. (I suspect the mall is the one place he would exercise, because that is where he used to accompany his Mom.) And, we've never been able to get a reshab provider for Bil to take him out.  But we can't give up.  He has to stop gaining weight.

I hadn't done a Google search in over a year on the subject (trying to get inspiration) - this time I actually found a couple of links (see above).  There is another link that shows promise although right now there is no information concerning adults. But the good news is, some attention is starting to be paid to this

I just wish we could think outside the box.  Because right now I feel like I am at a total dead end, just talking about Bil: talking talking talking and not doing.

The More Things Remain the Same....

Another visit with Bil and my mother in law concludes 

Incident:  It was dinner, and my sister in law had set up a table with food so we could all serve ourselves. Bil is always served by his mother.  So of course he expected to be served.  My sister in law told him he needed to get his own food.  (Even as her mobility deteriorates, and he is supposed to be helping her, it sometimes seems years of habits on her part just don't change.  Not that I don't realize how hard it is to break habits, but she has to let him develop some independence!)

Outcome:  he did get his own food.  But the next time we had dinner, the scenario replayed itself.

Incident:  Family socializes in living room, and just a few feet away, Bil sits by himself and watches The Weather Channel.  Family member tries to get Bil to sit with us.  Bil's mother asks Bil to sit with us. 

Outcome:  Bil reluctantly sits with us, for perhaps 5 minutes, then back to the Weather Channel.  My mother in law makes an excuse that he is anxious about the weather (there is a chance of rain). 

Incident:  Every time we see Bil, you can see the weight gain.  Bil still will not exercise.  His excuse is his asthma.  And now that my mother in law finds it hard to do things like mall walking, he is getting even less exercise than before.  He also has a sweet tooth.

Outcome:  I truly believe my mother in law is trying her best, and fighting a losing battle that she doesn't have the energy to fight.  I have no idea how to get Bil to move.  I am truly worried about his health.

I will write more about the exercise issue tomorrow.

The Number 18

Earlier this week, the son of an awesome area autism advocate I have blogged about before turned 18.

18 is one of the most important numbers in the life of a person with autism in New York State.

When a resident of New York State turns 18, he or she becomes an adult. The law (I'm speaking here as a layperson-I am not a lawyer or have any type of formal legal training) presumes such person is a competent adult fully able to take care of his or her affairs.

The parents lose their ability to advocate for the child/now adult.  The adult must now advocate for his/her own self.

Although this may have changed in recent years, it was my understanding years ago (when I took some training in preparation for one day needing to be responsible for Bil) that, prior to age 18, it was relatively inexpensive to file for guardianship of an individual with an intellectual disability.  After 18, it becomes a lot harder (and more expensive).

Which is where we are with Bil.  Bil, of course, is way past age 18.

Bil's mother authorizes his medical treatment.  She helps him deposit checks and basically tells him what decisions to make.  He sees the world through her eyes (figuratively)  Bil has never had a guardian, a representative payee, or anyone officially appointed to help him with aspects of his life requiring decisions.

At this point in time it is unclear if Bil would need a guardian or exactly what he would need.  However, Bil's former Medicaid Service Coordinator told us that, in her opinion, Bil could never be self-sufficient.  I trust that judgement. She had worked with Bil for years.

So far, Bil's mother has resisted any effort on our part to talk to her about any of those issues.  Which means, should she suddenly become incapacitated or worse, we are not going to have a fun time of it.

On the other hand, I am sure that the autism advocate whose son is now an adult in the eyes of New York State has made such arrangements.  Her son is lucky.

Bil?  I hope we are up to it when the time comes.  We will have a steep learning curve.  I wish I could outline that information from years ago, but it is outdated now.  So much to learn.....

A Farm Residential Community?

Yes, indeed.

I recently read about SustainAbility.  This started out as the dream of an adult woman with autism - to live on a farm.

Her mother is helping the dream come true, not only for her, but for (right now) about 11 other adults.

This isn't a "first", at least for adults with autism.  There has been a movement (if that is the correct word) for many years, the Camphill communities.  One of my relatives knows someone whose teenaged son attends the Camphill school in Pennsylvania.

But where Camphill works with people with disabilities in general, SustainAbility warns of the crisis our country is about to enter into when all the children with autism grow up.

Must be an echo in here.  I've been talking about this for years.  Bil is just the beginning of this crisis.  Just wait, 10 years from now.  And just wait when all of today's parents of children with autism enter old age.

For Bil and his Mom (and me) that day is already here.

We need housing options.  And quick.  Hurray for that Mom who took action.  Thank you, from the bottom of this sibling-in-law's heart.

People First Waiver-The Only Constant is Change

How interesting. I had blogged several months ago about stumbling across something called the "People First Waiver" but never had time to do more research until now.  If we ever get hold of Bil's new Medicaid Service Coordinator, we will need to find out more.

One thing seems obvious...they don't seem to be reaching out to the siblings or siblings in law to get their input.  So only now do they have a questionaire?  I'll be filling this out shortly.

August 4, 2011 Dear OPWDD Stakeholder: In recent conversations with members of the OPWDD community, I have learned that some confusion exists about the purpose of the new 1115 waiver and the changes it will bring. We have worked hard to make all the technical information our design teams and staff are using to study options and possible features of the new service system available to everyone on the People First Waiver Web page. While we have provided a lot of complex information, it appears we haven't yet clearly communicated what the new waiver will mean for the individuals and families we support. I will try to address some of the questions I have heard in this letter. Is the 1115 waiver a way to achieve budget cuts? First and foremost, the People First Waiver is NOT a means to cut OPWDD's budget. OPWDD's budget is directly affected by New York State's fiscal situation, tax revenues, and lawmakers' decisions about how to fund, within the limits of those resources, the many services New York State government provides to its citizens. The People First Waiver is not part of the budget process and will not bring further cuts to the OPWDD budget. Likewise, it will not shield our system from the realities of the economy. Will I lose services as a result of moving to the People First Waiver? Although there are many decisions yet to be made, we fully expect that on "day one" of the People First Waiver, all of the services that you or your family member receives will transition smoothly into the People First Waiver. We will continue to meet the same needs for service. However, the new waiver is allowing us to review how well those current options are supporting people and what ways we could do things better and promote better personal outcomes for individuals and families. Over the five-year course of the waiver, we will carefully test ways to better access services, new service options, ways of organizing care, paying for services, and measuring quality by implementing and evaluating pilot projects. The ideas that work well will ultimately be made available on a statewide basis, with careful and thoughtful implementation and continuous dialogue with you, the people we serve. The transition, from testing of ideas to implementation, will take several years. The services you receive may change somewhat, but we promise that the changes that result from the implementation of the People First Waiver will always be done carefully and in a transparent way with advanced notice to all individuals and families. There is a lot of talk about "efficiencies." What exactly do you mean? While the People First Waiver will bring changes in how the system operates, those changes are our opportunity to respond in better ways to the needs of those we support and make sure our service system is robust and stable for decades to come. The reforms of the People First Waiver will allow us to more accurately determine someone's needs for services, and then provide "individualized" services that will best meet their needs. In this way, the system will be more efficient, directing funding to services that are needed, rather than funding programs and levels of service that do not support someone to achieve their personal goals. This increased "precision" in how we target services to peoples' needs will also establish greater equity in the availability of services throughout New York State. To get there, we plan to update and improve how we assess an individual's needs so that we appropriately provide greater levels of service to those with greater needs. This could mean changes for some as individuals move into less restrictive settings and begin to enjoy more inclusive and meaningful lives. For many others, it will mean confirmation of their need for close supervision and support. Again, I assure you we will be careful and cautious as we plan for the implementation of these changes and will communicate with everyone about how the service system will respond to their needs for support. OPWDD stands firm in our commitment to protecting the health and safety of everyone within our service system. The agency that provides services to my family member is like a part of our family. Will I lose that contact? We recognize that service providers have been and will continue to be the foundation of the new service system. As we move from a fee-for-service billing arrangement to a care management structure, we will move slowly over a period of several years to allow the voluntary service providers to adapt and find their most successful and stable position within the new system. As we expand the types of services they provide and develop a new process of coordinating and paying for that care, we will work to ensure continuity of care for individuals and families and avoid abrupt and disruptive transitions. Again, we will communicate openly and continuously as these changes unfold over a period of several years. How can I share my ideas about the 1115 waiver? Finally, I want to assure you that OPWDD is relying on all of our stakeholders, and especially on the people we support, to help us design the details of People First Waiver system reforms. We've held listening sessions and public forums and provided an online survey that gathered many valuable comments and ideas. With this letter, I am announcing a second online opportunity for you to help us design the waiver so that it achieves its objectives with the full support and advice of the people we serve. The survey can be found at the People First Waiver Web page (www.opwdd.ny.gov/2011_waiver/index.jsp). I hope this information helps you to understand and support the development of the People First Waiver. It is a vitally important next step in the improvement of our service system, and therefore, it is critical that all of us who know and care for individuals with developmental disabilities understand what it is. Please share this letter and its clarifications about the People First Waiver with your colleagues and take part in the new online survey about the waiver. Thank you. Sincerely, Courtney Burke Commissioner