Autism and Colonoscopy

I am going to be undergoing a colonoscopy next week.  This brings to mind the fact that Bil's doctor wants Bil to have a colonscopy.  I blogged about this several months ago.

My 83 year old mother in law wants no part of this (wants us to help him through the prep, I should say) and I don't blame her.

I've been through the colonoscopy type prep twice now, and anyone who has done it knows it is no fun, especially the last 12 or so hours.

I've got to wonder, how the heck do you make a man with autism understand the importance of this test?  And that he is going to have to drink some kind of vile liquid, (in mass quantities) and live on the toilet (to put it delicately) for many hours?  If he can't understand "why" would he even give his consent?

But, I may be making too much of this.  With the prevalence of digestive problems among people with autism, there must have been enough people with autism that have had this test.  (this is a screening colonoscopy, not because anything is suspected, I should note.)  So there has to be a way. 

Is there a place that can do a different type of prep?  I don't want to get graphic here, but are there alternatives?  Has someone out there been through this?

So far we've been putting it off, and my mother in law hasn't pressed us about it, but sooner or later...you know this brings up other issues when you think about it, such as the availability of health care.

Will his insurance, such as it is, even pay for the exam?

"Enquiring" loved ones want to know.

Bil and Diabetes

Well, we made our Christmas visit.  At Christmas dinner, the conversation turned to diabetes.  I found out some interesting things about the medical history of my husband's extended family.  Apparently some of his first cousins have diabetes now, and we found out one of his aunts (who lived to 90) had diabetes for a lot of her life.

We also found out that Bil is, as my mil put it, is "borderline diabetic".  Exactly what does that mean?  Who knows.

Other than the "gee thanks for telling us" (what does she expect if something happens to her and we don't know things?  Why do things have to be such a secret?) I was already having some worries over Bil's health.  He has a weight problem. He never exercises and mil never encouraged him to.  I won't say more, as I don't wish to disclose much medical info online.

One thing I will give mil credit for, she does make Bil eat healthy.  I know food issues are common among those with autism.  She cooks good meals for him and makes him, as we used to say in the old days "eat his vegetables."  Left to his own devices, he would eat nothing but chicken.

I'd really like to know what is going on, what his blood work looks like.  When mil is gone we will have to help Bil manage his health conditions.  It would nice to know what they are, so we can try to prepare ourselves.

Again:  why the secrecy?  I know she's afraid to give up control, but Bil is going to pay the price when she is gone, or incapacitated.

Sigh.

Festivus (a day late) A Holiday of Choice for People with Autism?

I was too busy celebrating Festivus yesterday (well, not really) but I got to thinking about this holiday made-up for a Seinfeld episode back in 1997, which has caught on as a type of "anti-what the holiday season  has become" holiday.  (yes, I understand that the family of a Seinfeld writer used to actually celebrate something like this, but I will date this from the Seinfeld episode "The Strike".) 

Its slogan is "Festivus: for the rest of us".  Its point is to enjoy the holidays without stress, without commercialism, without pressure.  Families of those with autism can appreciate that.

The holidays are so difficult for Bil and others like him:  as the Grinch would say "the Noise, the Noise, the noise noise noise noise".  The breaking of routine, too.  The lights, and the other bombardments of the senses, don't add to the enjoyment.  Many families with members having autism have to tone down the holiday.  Bil is older, and Christmas has become a type of routine for him now.  But for younger children, it is extremely stressful-for them and their families.

And who needs more holiday stress than is already out there.

But then, there is Festivus.

There are several elements to Festivus, if you are not familiar with the holiday.  First, the Festivus pole, unadorned unlike a Christmas Tree - but made of aluminum, for strength.

People with autism would appreciate the relative lack of sensory bombardment.  As for strength, they must show it every day of their lives.  As must their families.  Plain, unadored.  Wonderful symbolism.

At the Festivus dinner, there is a set ritual.  Again, perfect for those with autism.

First, is the Airing of Grievances.  Family members, one by one, tell the dinner participants how they have disappointed in the past year.  Oh, what families related to autism could tell in the Airing of Grievances:  not specifically for their families (but sometimes other family members deserve a mention in the Airing), but what each family member has gone through in the previous year, with mean-spirited people in public, with the school system (too many times), with the  government agencies set up to help them.  With being excluded, despite protective laws.  With embarrassing moments only other families touched by autism would understand.  They would air how they have to fight every minute of every day in the struggle for advocacy and also devote themselves to their jobs, their families, and their neurotypical children.  They would really like a break.

Then dinner.  Not a fancy dinner.  Meatloaf is the usual choice. That's good, too.  Plenty of symbolism there.  The dessert should be a Pepperidge Farm cake decorated with M&Ms.  Not so good there, we don't want the artificial coloring.

Wrapping up the dinner is the Feats of Strength, where someone wrestles the head of the family to the ground and pins them.  This is very symbolic, too, of the daily struggle.

There is one last element, the "Festivus Miracle". Unlike a true miracle, Festivus miracles tend not to have happy endings.  Families with autism can sometimes identify with that.

After I started to write this post, I wondered if anyone had linked Festivus to autism, and the answer is "yes".   But I disagree that Festivus has "nothing to do with autism".  I think it does. As goofy as the thought of celebrating a holiday created for "the rest of us" via a comedy show of the 90's is, it does offer a chance to step back from what "Secular Christmas" has become:  and remember that Christmas really isn't supposed to be a source of unhappiness and stress.

Happy belated Festivus.

Will it Come to this in the United States?

A gesture by a distraught parent in Romania.  The father of a teen with autism jumped from a Parliament balcony to protest budget cuts.   His injuries, thankfully, are said not to be life threatening. Romania has fallen on some hard times.  Of course, under Communism things were really rough, but everything is relative.

People in our country would do well to see what people elsewhere are going through.  In the article I read about this parent, it detailed some of the budget cuts the Romanian people are suffering through.  It could happen here.

This is an extreme form of advocacy but it did get people's attention....maybe.  Certainly not a suggested method, but we can only imagine how frustrated, and worse, he must have felt to do something like this.

Which reminds me...we somehow have to be able to communicate with Bil's medicaid service coordinator without her running to my mother in law.  We have to know how Bil is going to be impacted. 

A Sibling's Viewpoint

I ran across this article tonight.  I will take a small break from blogging - just feeling exhausted right now - and will post this.  It's written by a woman with a severely disabled sibling.  Ironically, it is his disability that allows her to be close in a special way with him:  her other siblings live far away and/or are too busy with their own lives.

True, that Bil isn't quite this disabled.  Should I feel guilty that I can love him and want to do right by him, but it is so hard to connect with him that it can be very hard to like him?

Anyway, I loved this article.

We'll be seeing Bil again soon.  And perhaps in February, spending extended time with him again.

Bil and "Super Memory"

On 60 Minutes tonight there was a "Super Memory Summit" concerning a researcher who is investigating people who have perfect memories.  In other words, they can remember what happened every day of their lives.

The people in his study are from all walks of life.  One, Marilu Henner, is an actress.  What they have in common is the ability to remember the events of their lives, as if it had just happened yesterday.  And it isn't just the fact that, for example, a football game was on that day. They remember every play.

Marilu Henner, asked about what happened on a particular date, was able to remember her taping of a commercial over 30 years ago, down to the smallest detail.  When the 60 Minutes producers obtained the tape, they found that she was right in every detail.

What researchers find (after quizzing them to establish their total recall, then running them through memory tests, and giving them brain MRI's) is quite fascinating. I suggest you watch the online clip.

One question that came up was whether the people in the study have autism.  Many of the people reported people asking them that question, or alluding to the movie Rain Man.

So what does this have to do with Bil?  Well, I'm not sure Bil remembers everything about every day of his life. Due to his communication disabilities it would be very hard to establish this.  However, in some ways he is the family historian.  When my father in law died and I was on the phone with Social Security, he immediately remembered the date his father retired (and the day of the week it was, and the weather.) Recently I helped my mother in law fill out Social Security paperwork for Bil, and I needed to know the date of his last doctor's visit.  Immediately Bil knew the date, the time, and what he had for lunch afterwards-along with the weather.

For years, we've depended on Bil to immediately know the date of, for example, the next Easter.  He is right every time.  He carries a calendar in his head, so in other words this total recall extends into the future.

What I found fascinating about the study is that all of the participants have a visual recall of the memory (similar to a person with autism "seeing in pictures"), almost like they are going through a file cabinet to find the memory.  What was also fascinating was that all of the participants seem to have an element of obsessive/compulsive behavior.  (there is some of that on my father's side, so I do have some knowledge of this disorder.).  Of curse, OCD is not autism, but when it comes right down to it:  the brain is so complex and we need to find out so much more about memory.  Perhaps one day these studies will point to a treatment for Alzheimers (for example).

In the meantime....will we ever find a way to communicate with Bil?

Initial Advocacy Efforts and the Painful Process of Learning Continues

I do not remember how we found about about this seminar, but it was probably the most important meeting we ever went to.

It was a free seminar on housing needs for people with disabilities, and it was tied in, as I recall (my memory may be a little hazy on this) with a lawyer talking about something called Supplemental Need Trusts.

I believe this happened in 2001.  I could check my advocacy binder, but I just want to get this written.

I didn't go to the seminar-I had to work.  But my husband, his brother, and her wife went.  And I don't know how they did it, but the person who did the seminar agreed to have dinner with us at a local restaurant.

We probably learned more from that one man, who was employed by what was then called OMRDD (now OPWDD), that one evening, than we have ever learned before or since at one time.

I won't get into the nitty gritty of Supplemental Needs Trusts. (I really can't, I'm not a lawyer or other legal professional.  I'm not any kind of legal professional, in fact.  Just a in law who really cares.)

Now the housing things, though.

Housing for people "in the system" is a very tricky situation.  There are limited choices on how to fund housing, and all of them are...well, complex.  Very complex.  I am convinced the government "programs" for those with disabilities exists, not to help those with needs, but to keep them in their place.  A place of poverty and hopelessness.  But I digress.  You can lose government benefits if you do the wrong thing - government benefits Bil would need just to exist.

We also found out,that the worst thing we could do to help Bil would be to take him into our homes if something happened to my mother in law.  Even for one night.

We also learned that if Bil's mother died without plans for Bil's housing, he would be subject to the "first available bed" in an emergency situation...and many of these beds would be in programs not at all suited for people with autism.

There was also how Bil would react to think of.  As anyone who is familiar with autism knows, people with autism do not cope well with changes to routine.  Bil is no exception.  He treats any change of routine with a lot of anxiety.  And his mother has been the "constant" in his life, the interpreter, the buffer, the go-between.

If Bil reacted to a placement with a temper tantrum, for example, he would be drugged.  And drugged with heavy duty drugs at that.

This man's object lesson was:  We needed to make plans.  Not five years from then.  Now.

He also told us about a list we needed to get Bil on.  A list called "NY Cares".  He said not to even wait a day.  And, we had to get Bil on Medicaid.

So, what has happened since that night?  "Stay tuned".

Initial Advocacy Efforts and the Painful Process of Learning

It was quite clear to us, given the sudden death of my father in law, that if something happened to my mother in law, it would be imperative for Bil to have housing taken care of.

We knew Bil worked in a sheltered workshop at the local ARC (then called the Association for Retarded Citizens-how far we have grown since then!).  So our thought was to call our local ARC chapter here in Binghamton and find out about housing options.  Speaking of how naive we were....this was around the year 2000.  My husband, Bil's brother, called.  (I had tried to do internet/CompuServe groundwork, hadn't found out much.)  As I recall the conversation went something like this:

Husband:  I have an adult brother who has autism, and I need some information.

Local ARC:  Is your brother on Medicaid?

Husband: No. (we did know that much).  Uh, does that matter?

Local ARC:  It sure does.  Without Medicaid, we can't help you or your brother.

Husband:  Why not?  Can't we just pay for these services out of our pocket?

(someone at the other end of the phone was probably really sighing right now.)

Local ARC:  No.  The rules don't allow it. 

Very fortunately for us, we attended a skating night for children at our local elementary school (my son then was in elementary school) and we ended up meeting someone who was running for the local school board.  At that point our child was experiencing various difficulties at school and we talked to this candidate for a few minutes about them.  The candidate had a child with learning disabilities.  She gave us a name, of an advocate, someone who had a child with a physical disability. We contacted her.  She told us about something called a Home and Community Based Waiver.

A what?  Well, it was what we needed to be able to call the ARC back.  Not quite Willie Wonka's Golden Ticket, but, it was the entry point into "the system".

She also told us about something called Medicaid Service Coordination.  She didn't use the ARC but another organization, for her son (who is not developmentally or intellectually disabled.)


But at this point we were still somewhat focused on the ARC.  We thought we should, as Bil was getting services from his ARC.  (as we found out later, "not exactly".)



And so the journey began.

The Long and Winding Road of Our Journey with Bil - Intro

It's been said so many times it is a cliche:  if you don't study history you are doomed to repeat it.

Our road in effectively trying to advocate for Bil is a road that stretches over some 10 years now.  In a way we should be ashamed that we didn't start until 10 years ago.  However, we did start and that is what is important.  What is important too, is how we feel so stalled out right now, sort of like a real-life Groundhog Day.

Here, at year's end, it is time to take stock.  I feel so very lost now, that I must retrace my breadcrumbs-and hope some bird hasn't followed me to eat them.

I need to know what to do next.  I feel like I am stuck in quicksand.  So here's the story, sort of.

Before my father in law died in 1998, our efforts to learn more about Bil were always rebuffed.  "Don't worry", we were told "he's taken care of".   We were young, and for part of this pre-death period, we lived some 1300 miles away. For part of this time, my husband was in the military.  Other things came and went, so we didn't worry that much. 

Of course, when fil died, we found out quickly that -well, he had misspoken.  Majorly misspoken.  He didn't even have a typed will, this man who played golf all the times with lawyers. (and he was in the insurance business.  The cobbler's children go without shoes....)

My mother in law realized there was a problem, a big problem now, especially since at about the same time an elderly in law of hers fell down stairs, was paralyzed, and ended up with a living will the doctors would not honor for various reasons.  I won't get into the details, but it showed my mother in law (a very intelligent woman) that she had better see a lawyer to get documents in place for her, and also for Bil.

While this was happening, we were starting to try to educate ourselves on autism.  We found quickly that whatever material was on the then-fledgling Internet (and CompuServe, which I subscribed to), was geared towards children.  Adults with autism?  What were they?

How did other siblings cope?  Nada.

Our journey of discovery was beginning.

In future posts, the continuation of the journey.

Advocacy Time (again, and again....)

Advocacy never ends.  As I suspected, budget cuts for those of us fortunate (or unfortunate) enough to be living in NY State will be htting soon.  Like so many states, our outgoing (and incoming) Governors have to make decisions I am very happy I don't have to make.  So, I received the below email the other day and have to decide what to do.

One thing I learned long ago from a relative in the journalism field is NEVER to use a form letter, or use extensive wording from a form letter.  Such letters are easily discovered, and just as easily ignored.

Similarly, snail mail works a lot better than email. And, telephone calls are even better.

My style is writing so I have to see about a letter from the heart.  My heart is the heart of a taxpayer but also the sister in law of an adult with autism.  More and more, as my mother in law's financial resources dwindle, my brother in law's government betterments are more and more important to her.  My mother in law was raised not to depend on government, but sometimes you just need help.

That help needs to be there.

Maybe (or maybe not) I'll post the letter, or parts of it, when I get it written.

Anyway, here's the email I received.

PROTECT Services for People with Developmental Disabilities

Services for people with developmental disabilities are in grave danger. Governor-Elect Cuomo must reduce New York State's enormous deficit, and he will have to make cuts.

It is up to each and every one of us to prevent huge cuts to our services. We cannot afford to be silent!

Write to the Governor-Elect and your own state Assemblymember and Senator to tell them that large cuts would devastate our services, causing massive staff layoffs and endangering the health and safety of our extremely vulnerable population! Tell them that the Office for People with Developmental Disabilities (OPWDD) must be preserved as a separate agency, not merged with other agencies. Only OPWDD has the expertise to incorporate some cuts while protecting our critical services.

Write Governor-Elect Cuomo and your Legislators TODAY:

1. There are 2 sample letters attached: one for parents and a different one for agency staff. Choose the appropriate letter for yourself.

2. Send the appropriate sample letter or—even better—write your own. Be sure to include your name and address.
3. If you are a sibling or friend, adapt the letter accordingly.
4. Use the same letter (but change the addressee) to write to your state Assemblymember and Senator.
To find your Assemblymember, call 518-455-4100 or go to www.assembly.state.ny.us/mem/
To find your own State Senator, call 518-455-2800 or go to www.nysenate.gov

International Day of People with Disabilities - Bah Humbug!

Today (to look at more than just Bil for a change of pace) is the International Day of People with Disabilities.

Well, it's great talking about it but it has to be mor than just talk.  It seems too many times these "Days" are the "same old same old".

My mother in law is in her 80's and caring for a son with a disability, autism.  She is far from the only one.  I have heard anecdotally about parents in their 90's trying to care for children, with little help from the agencies (government or other)that supposedly exist to help them.  There's a lot of lip service but a lot of very needy parents.  The older they get, the heavier that advocacy burden becomes.  Having trouble doing it now when you are 30?  Wait until you are 82!

My mother in law is lucky in a way. She has three other grown children, and they are all involved.  (Our frustrations over trying to help, and take aspects of Bil's care over are besides the point for the purposes of this discussion.) And, she's made her own decision to keep up this burden.  But there are many parents out there that could not put down that burden even if they wanted to.

Even in our case...two of the three siblings of Bil are older than he is.  One is married to a woman with health problems, a woman who received a layoff notice right before Thanksgiving.  (Happy Thanksgiving!) With increasing life expectancy of people with disabilities, what happens when they outlive both their parents and perhaps their brothers and sisters?

I don't want National or International Days of Hot Air.

Our disabled community deserves something more than Hot Air!