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!

Medicare Supplement Coverage for People with Autism

I thought my mother in law had shared many of the details of Bil's expenses with us but we found out this weekend that was not true.

We were helping her organize some bills when when we saw a bill for Bil for $338.  It was for Bil's Medicare Supplemental coverage, she explained.  Although he is was accepted for NY Medicaid a handful of years ago, his Medicaid Service Coordinator strongly recommended he keep this coverage.

It's $338 a year, we asked.

No, she responded.  This is his premium per month.  Then she explained that it was difficult to get him this coverage.  It had started out cheap several years ago and has gotten more and more expensive.  This past open enrollment period, she had looked at other options.  Many insurance companies won't take Bil because he is under 65.  The bill we saw was for the cheapest company.

$338 a month.  For someone who works in a sheltered workshop part time.  I'm not even sure he brings home that much money.

How can he afford it?  But, mother in law said, he needs this coverage.

She kept calling it "part D" coverage.  She couldn't tell me exactly what coverage he has.

$338 a month.

I wish she was more open about this kind of thing.  When we started to ask more questions, that wall came up; she accused us of questioning her judgement.  We were doing no such thing.  How are we supposed to take care of Bil's affairs when she no longer can, if she isn't forthcoming about his financial affairs.

How many surprises are we going to have when we take over?

Supporting the Sibling Support Project Through Your Holiday Shopping

I don't usually do plugs but this one is important if you do shopping on Amazon.com.

To quote from the Sibling Support Project, something I wish my husband would use for support (but that's another story) because it is a worthy organization:

"GET THE SAME GREAT DEALS YOU ALWAYS GET AT AMAZON.COM WHILE SUPPORTING THE WORK OF THE SIBLING SUPPORT PROJECT!  VISIT THE SIBLING SUPPORT PROJECT'S AMAZON ASSOCIATE STORE at" this link.

If you use this link you will pay the same price but the Sibling Support Project will get a portion of the $ of your purchase.

The Sibling Support project provides support through a Yahoo Group, Facebook, and various other opportunities for adult siblings of people with autism and other developmental disabilities, mental disabilities or health issues.  They have members from all over the world.  It's moderator, Don Meyer, is a tireless advocate for siblings.  They also work, through slightly different channels, to address the needs of siblings who are not yet adults.


Please consider doing your Amazon shopping through the above link.

Thanksgiving and the Annual Paperwork

My husband and I took an exercise walk today.  It was a "bonus" day here in upstate NY; the sun shining.  I was actually able to take off my coat.  A chance to, sort of, soak in the Vitamin D and try to plan out the Thanksgiving weekend.

And, to think and talk about our future.  And our future with Bil, and trying to get things more "started" now to prepare for that future.  I'm grateful we have this chance to prepare, and I don't want to waste any  more time.  I've had a couple of physical "surprises" in the past year and I know how quickly things can change.

We are not going to visit Bil and my mother in law for Thanksgving, due to circumstances up here.  But, in a way, that is good. When we visit for the holidays things we need to keep track of vanish in the holiday bustle.  I think, coming over the weekend, will work better.

Will Bil miss us not being there?  I'm not sure.  I think it may bother him a little because we are almost always there for Thanksgiving, at least in the past few years. (My husband's job, prior to 1999, required him to work many Thanksgivings.  So we would go down another time.  Sort of like what we are doing this year.) But I know one thing I would really like us to focus on when we do go down.

When my mil visited last weekend, she told me about how hard it was to do Bil's annual Medicaid review.  Despite knowing Medicaid will want Bil's financial statements, she keeps throwing them out because she is so tidy.  So then she has to run to the bank and pay unreasonable fees to get the paperwork.  While she was at it, she discovered that because Bil didn't have direct deposit of his SSDI checks, that the bank was charging $6. a month to deposit them.  Lovely!  So at least she got the paperwork filled out for direct deposit.

Why hadn't the bank ever brought this up with her?  Or the Medicaid Service Coordinator?  I wonder how many other little things can be done to make life easier.

Bil's Medicaid Service coordinator helped her with the actual filling out.  But she told me that all the running around had her totally exhausted.  Yet, when we have brought up trying to get some kind of guardianship, or representative payee, or other role for ourselves we are seen as meddling.  She never even asked us to help. (I know it is hard being 150 miles away but after she can no longer have an active role-we are still going to be 150 miles away.)  And if we ask the Medicaid Service Coordinator for any kind of information whatsoever the MSC runs right to my mother in law.  Do we, as other family members, not rate?

I've said it before:  I'm thankful my mother in law wants to continue to care for Bil, to her last dying breath.  But why can't she see that if we step in, or want to step in, that we are not saying she is worthless, or incompetent, or anything like that.  What does she think will happen if she suddenly passes on?  Doesn't she see that by not letting us participate more, she hurts Bil?  And us?

Sigh.

.

Bil and the Magazine

I don't know that I handled this correctly - I am still mulling it over.

Last month, when we visited my mother in law and Bil, my husband, mother-in-law and I were sitting in the living room.  Mil and husband were watching TV and I was paging through the TV guide magazine.  It is Bil's magazine-he pays the subscription - but it is mainly my mother in law who uses the magazines.  I don't get TV Guide at home and I like paging through them.

At one point I got interested in what was on TV and was watching TV with the TV guide in my lap.  For some reason, Bil came upstairs from where he lives, which is in a room in the finished basement/recreation area.  He usually doesn't come up unless he hears dinner being ready.  With his supersonic hearing, he always arrives exactly as dinner is being served.   Eats and leaves, and then comes back exactly in time for dessert.  Otherwise he never wants to socialize.

So I don't know why he came up, and picked the TV guide right out of my lap, looked at it for about a second, put it back, and left the room.

Was it because he wanted the TV Guide but didn't want to ask me for it? (meaning he would have to engage in social interaction).  But obviously, he did not realize that reaching into someone's lap, especially a someone of the opposite sex, is a no-no.

I didn't say anything.  I was a bit stunned (this was a first time behavior on Bil's part) and didn't react fast enough.

If it ever happens again though - I will have a response ready.

Living With Us Again?

I blogged several days ago about Bil deciding he wanted to sleep here on his last visit over the weekend.  My mother in law was sure he would not, and would not want to be away from her....but he was OK with it.  Although I don't know about next time, because he didn't sleep very well.

I wish I could remember the comment my mother in law made, something about Bil practicing for when she was "no longer around".  In other words, Bil was practicing sleeping here for when he would be living here permanently.  This is another topic my mother in law has a total blind spot about.  For a number of reasons we truly do not think that Bil living with us would be the best thing after she can no longer take care of him.  But I digress (although I do need to blog more about that.)

I have realized for a long time that there is some kind of, dare I call it, symbiotic relationship between Bil and his mother.  When an opening in supported housing opened up some 3 years ago, she refused to sign the papers. All of her other children pleaded with her, her Medicaid Service Coordinator pleaded with her, but no go.  I think that Bil could have been eased into it with some kind of transitional plan, but my husband and I didn't have the knowledge to really craft something like that.  I have to admit, working with people is not my strong suit.  I tend to be very introverted.  Be it as it may, she thought Bil wouldn't want to sleep away from her and guess what he did.

It's funny she thought that, because he has been away from her several times, when she has traveled.  She hasn't traveled a lot in her life because her late husband hated to sleep in a strange place.  In fact, they vacationed away from home (more than overnight, I mean) a total of three times that I can think of in nearly 40 years of marriage.

And, in the same breath, she announces she may go to California sometime next year for a couple of weeks, if one of her nephews travels out there to visit his son.  Again, Bil would stay up here.  So why was she making a comment about Bil practicing for when she was gone?  I wonder if she is thinking a lot about her mortality for whatever reason.  I do that enough and I am 25 years younger than she is!

Anyway, my brother in law's wife (Bil normally stays with them) was glad in a way that Bil stayed with us.  She would like Bil to stay with us part of the time if Mil goes to California.  Last time, my husband spent a lot of time with Bil although he slept every night at his brother's house.  I think that would be a good thing for Bil.  Visit and stay, yes.

But live in our house?  No.

Trader Joe's and Bil's Shopping

I recently read a post about some girlfriends, including a mother of a child with autism, shopping at a Trader Joes on the West Side of Manhattan.  It was so funny (in a way) because when we visit my mother in law's it is almost a requirement that we visit the Trader Joes about 1/2 hours from her-after all, we don't have a Trader Joes.

This same woman talked about the nearby Fairway, another foodie must-visit:  and now there is a Fairway a bit more than a 1/2 hour drive from my mother in law, too. Alas, in different directions from the Trader Joes.

I must have a soulmate somewhere on the west side of Manhattan.

This made me think about Bil, though, and his love of getting out and about and visiting food stores.

When we visit, Bil sometimes is just waiting for us to go to a mall or a food store, just so he can come with us.  At the mall near my mother in law's house we used to be able to let him to go off on his own, as long as we gave him a meet up spot and time.  "Meet us in front of Sears in exactly one hour" and there he would be.  And woe be upon us if we weren't there.  His prime destination was CVS, where he would usually buy some kind of chocolate.

But that mall is only a ghost of what it used to be, and it no longer has a CVS.  And Wal-Mart has come to town, and that is Bil's new favorite place.

But you know what else Bil likes?  Trader Joes.

We've taken him a couple of times (with my mother in law) when we have visited cemeteries on Memorial Day.  Bil loves Trader Joes.  Why?  Their selection of chocolate.  Because Bil is a confirmed chocaholic, much to my mother in law's horror.  Bil has....well, let's just say chocolate is not good for him.  But he does get his chocolate.

And who knows, he would probably love Fairway, too.  Although, probably not the one on the West Side.

Try to bring Bil into Manhattan?  Hmmm.....don't know if I am quite up to it.

The Problem Solving Side of Bil

Tonight I saw a different side of Bil.

Only one time when my mother in law was visiting up here (which she does usually just once a year) Bil has stayed with us rather than  his other brother.   His other brother and his wife have a larger house, with a pool, and had a guest bedroom.  Whereas, once we got rid of our sleeper sofa, we didn't have a comfy guest bedroom area.  But the one time we did have a sleeper and Bil stayed with us, he had a bad asthma attack. After that, he didn't want to stay with us anymore.

Until this last trip.  In fact, Bil is sleeping downstairs right now on, of all things, a Coleman inflatable bed.  At least, I hope he is sleeping.  In the meantime, my sister in law is sleeping upstairs in what used to be our son's room.

My mother in law didn't think he would do it.  Didn't think Bil would be comfortable sleeping several miles from her.  Didn't think he would say "yes" because of the memories of that asthma attack, which I think came about 15 years ago.   But she spoke to him, and he accepted our invitation.  However, it turned out it was because of something that had happened earlier this year.

Earlier this year I blogged about my mother in law and Bil staying over as houseguests (along with my sister in law) at this same brother's lakeside cottage about an hour away from here.  Turns out Bil was very unhappy there, because he didn't have his own room. So he hatched a little scheme, to have someone drive him back here the next time the family stays over (he's already anticipating a visit to the lake cottage next year) and he would sleep with us bac in town.  (There isn't enough room there for everyone at the cottage, so we did not sleep over.) Turns out he jumped on this invite as a kind of "dry run" to make sure he would be happy doing this.

Who says people with autism don't try to problem solve in their own way.

Housing Options

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.

When my young adult son moved into a mobile home, I visited him at his new trailer park.  His trailer, although old, is pretty nice.  And I said to myself, "with the right supports, I wonder if this might be an option for Bil one day."

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.

But thinking of the mobile home, that would probably only be an option if we moved Bil up here.  And that may not be the best thing to do (once my mother in  law can no longer care for him, that is-because as long as she can she is going to want him at home.) why does it seem governments exist only to provide red tape, not to actually help people like my mother in law?  And Bil?

Voting and Bil

What better day than Election Day to talk about voting and people with autism.

Bil voted for the first time...let's see, it was two years ago, for President. (keep in mind that he is in his 50's). My mother in law has very definite political views and, when she isn't watching the food network, has a network on famous for its political programming. So that is what Bil is exposed to on a daily basis.  Sometimes I am not sure what he is cognitively capable of (he does have a below "normal" IQ, but IQ tests don't test everything) but I can tell you he has picked up on this political programming.  He has definite political views - he, of course, does not discuss anything.  But, in the middle of a totally unrelated conversation he may blurt out something about the President-just as he might blurt out something about the weather or about his other main interest, the NY Mets.  And then, that's it.  If you try to engage him, it's almost impossible.

I don't know who came up with the idea, if it was Bil or if his Medicaid Service Coordinator who urged him to vote but vote he did.  In a way I'm surprised my mother in law never took him to vote but perhaps she assumed that if he didn't ask, it was because he wasn't interested.  At any rate, his MSC was very proud of Bil having voted.

I don't know if he voted today, but will be curious to find out.

The other recent political "interest" I've seen him show was back in July when Bil, my mother in law, my spouse and my sister in law all stayed in a hotel room to attend a wedding.  Around 8 or 8:30 Bil became slightly agitated, seems we didn't have a particular political show on that he enjoys.  We weren't watching any TV at the time-we had just had supper and were all enjoying each other's company.  Since we had rented a suite, knowing Bil would want privacy, we put on the TV in the living room for him and the rest of us retired to the bedroom area so he could watch TV in private.  But this may have simply been a function of Bil seeing this show on every night (I think it is on every weeknight) and, since it was a Friday, it would have been part of the routine.

I guess the moral of the story is:  if someone with autism can vote, we all can vote.  So:  get out there today and vote!

The Perpetual Memory

Bil....the memory of our family.

Want to know the weather on a date during Bil's life?  Ask Bil.  Want to know the date that a holiday like Easter (a holiday moving around the calendar) in a certain year is?  Ask Bil. 

For him it's not a party trick.  It may well be a function of his brain, which can not work right in so many ways, being able to devote large amounts of memory to other things.

I leaned on this ability a lot when my father in law died, 13 years ago this next Christmas.  I helped my mother in law out by calling various agencies.  And whenever they wanted a date in my father in law's life, there was Bil all ready to give the answers.

Even in the last couple of weeks-I had to help my mother in law fill out paperwork for Social Security.  They wanted to know the date that Bil had last seen a doctor.  Bill had it down - to the hour.  And the visit before that.  And the visit before that.

I know Bil isn't alone in this ability among people with autism.  I just wish I could figure out a way for it to help him, or even to make him a better income than what his sheltered workshop job.

Social Networking at the Job and Autism?

I recently read a most chilling (to those involved in the World of the Spectrum) book called The 2020 Workplace:  How Innovative Companies Attract, Develop, and Keep Tomorrow's Employees Today by
Meister and Willyerd. 

The book is about getting talent in a changing world....one that is changing quickly, and maybe not for the better for those with Aspergers-just in time for all of those 1 in 166 birth generation Aspies to be entering the workplace.

So.... The prediction that social networking will be used extensively in the workplace, along with wikis, and blogs, may spell bad news for those on the spectrum.  Some companies (and not necessarily technology companies) are using these tools now.

On the one hand, younger people with autism do use the Internet.  Some have blogs, others have websites.  I know at least one person with Aspergers and one with PDD-NOS who are on Facebook.  This is on their terms. But what happens if these social "tools" become the norm and expectation for the world of work?

Unlike Bil, who has always worked in the sheltered workshop environment, others on the spectrum have been able to contribute in the "non-sheltered" world of work.  But contributing by joining Facebook like networks and interacting with others may not be a strength.  Then what?  Are they shut out of the World of 2020?

I can see the older people with autism, who may not have ever been able to learn to navigate present day online life, and have a lot of problem dealing with change, being shut out completely.  It's hard enough for some neurotypical people in their 50's or 60's to adopt to the change coming now.  I can't see Bil ever being able to do this.

Another way for "older" people to autism to be off the radar?

As Bil's advocate, I think about a lot of things.

The future....just some more food for thought.

Change in the Wind?

Change, for Bil., is not good.  For Bil, there is no such thing as good change.  For us, Bil's caregivers...who knows?

We have known for a while that Bil's MSC (Medicaid Service Coordinator) has been ill.  I will not mention her name for privacy reasons but, in her personal life, has had a lot of challenges herself.  Now, apparently, the illness had become too much for her.   Bil is not the only person being affected and some of the details, quite frankly, are a little bit scary to me when I think of Bil's future.

This MSC was at Bil's 50th birthday party that is the last I talked to her.  She took sick not long after.  I was hoping to be able to visit with her in the next several months to get a handle on what upcoming NYS budget cuts might mean to Bil's service coordination.

Recently, .my mother in law had tried to reach the MSC and, on her voicemail, was a message that the extension was no longer hers.  No explanation, no message about how to reach the MSC.  My mother in law has the MSC's home number (another measure of how much this MSC is involved with her clients) and she intends to call her tomorrow.


I have never questioned this MSC's dedication.  But I do have some issues with PARC (Putnam ARC) itself.  And if the MSC is ill and can no longer work, why wasn't Bil's mother advised?  Bil himself would have a lot of problems communicating this, if he indeed knows.

And once he knows....(if there is something to know)-his reaction will be of a lot of interest to me.  My next trip down to where Bil lives (November?) may need to address this.

The Leak

We are down visiting mil and Bil today.  Last night the housekeeper did the laundry and lost a pair of Bil's underwear.  I think he was driving mil a little nuts with his constant queries.  We had to go somewhere, and didn't get back until he was in bed, so I don't know if he found them.

Then today, the toilet started to leak and Bil has that to worry about now.  We, at least, are here to help out.  Her plumber has the flu but gave us some suggestions about temporary measures.

I noted Bil was pointing instead of talking, in showing her the leak.  He may do that a lot still-I know he did before he learned to talk at age 5-but I had never seen it in action.  Mil had to tell him to use words.  I wonder how often that is happening.

Well, this was a short post as we have to run to the hardware store to get a couple of things the plumber said might help with the leak temporarily.  He won't be able to make it until Monday.

You Won't Miss it Until It is Gone

10-10-10.  That special date.

On this date, I walked into the public library in Vestal, NY, the only library in this area that is open on Sunday.  And there, I found a petition to save the library.



The library is having 1/4 of its budget cut.  No new books, and employees will (according to one of the librarians I spoke to) have substantial cuts in their hours.

So, what does this have to do with Bil?  

Well....

When I first started to research the various issues I have had to advocate on behalf of Bil (back around 2000), there were various sources of information I used.  One in particular, I found, had free, extensive resources and people not that knowledgeable about autism, but very willing to listen, to learn, and to help.

One woman spent about 1/2 hour with me, and talked about the flood of requests she was experiencing from other people.  I talked to her a bit about autism.

That person?  A librarian.

You won't miss the libraries until they are gone, my friend.  They are far cries from what you may think. They are not musty dim places where librarians who never married shush you if you dare to breathe loudly.  (and perhaps they never were.)  Now they host internet access for many needing people.  They help people look for work.  They help people in all types of need, including, yes, people who have a family member newly diagnosed with autism-and don't know where to turn.

The Vestal library, until earlier this year, carried Exceptional Parent magazine.  They were the only local library (to the best of my knowledge) that did.  They don't any more; they didn't have the funds to renew their subscription.

Libraries, in my point of view, are as important as police and fire protection, as important as garbage pickup.  They safeguard our freedom of speech (yes, librarians.  Not politicians-with apologies to those who do care.)  Without them, where would we be?

Think your tax money is wasted on them?

Think again.  Especially if you have a family member with autism.

Knowledge is power.  Please support our local libraries in their fight to stay afloat.

Choose your Political Leaders Well

I do not take political sides in this blog.  However, I do tend to pay extra attention to candidates who pay attention to issues of interest to families who have a family member with autism.

I found an interesting blog on politics and autism recently.  I don't know if I will have time to follow it, but it does claim to be non-partisan and the writer does appear to have the political science "creds".  One thing I wish is that he would have posted (and maybe he did, I just didn't find it) "why" he is interested.

Still, it sounds like a good educated read, to anyone with the time.

Being Gobsmacked, Part 2

It's been 6 years now since my aunt died.

My mother died when I was just entering teenage hood.  It was a difficult time for me.  Various "substitute moms" entered and exited my life.  One of these was an aunt, my father's younger sister.  She had two daughters around my age.

My Dad, I think, came to his younger sister too, when my Mom died suddenly, and he found himself a single Dad.

So what does this all have to do with autism?  Bear with me.

We all bonded.  We started going to this sister's house for Thanksgiving dinner.  It was over 1 1/2 hours on the subway (New York City) each way, and then either a bus ride or a long walk.  Dad and I most times chose the walk.  We'd have Thanksgiving dinner and my Dad would ride back home alone-he had to go to work the next day.  But he let me stay overnight, and for a few hours this only child would have two sisters.  And, several times, I spent the entire Christmas school break with my aunt and my two cousins.

Years passed, we all grew up, we all had children.  My cousin had a child with learning disabilities and became a speech therapist, working for a school system.  We stayed in touch, all of us.  My aunt, sadly, had many health problems as she aged and old age was not a good time for her.  She finally passed on and I traveled to NYC for the funeral - not that far from where the two NYC Worlds Fairs took place.

My cousin gave the eulegy and I was....gobsmacked.

It seems that I had a cousin.  This woman has autism - as far as I know she is still alive.  In those years when she was born (similar to Bil) autism was at best considered a mental disorder and at worse cause to throw someone "in the garbage".  And who entered the fray to fight for her relative, and her relative's mother, was my aunt.  Tirelessly, we were told by my cousin, my aunt entered the fray again and again and again.  Helped her relatives to have a good life. 

I had never known this.  Had never known about what my aunt did.

How sad that I did not know until after she died.

Knowing about Bil, she had never told me, and I don't quite know why.  Well, maybe I do, because my aunt was never a person who would never brag or boast.  Well, her oldest daughter decided the world, or at least, her family, needed to

The unsung heroes and heroines of this world include my aunt.

Meanwhile, I keep drifting....

Being Gobsmacked Part 1

People in caretaking or other situations (such as having to care, or advocate for someone with special needs) find there are two groups of people:

Those who "get it"
And those who "don't"

For many reasons sometimes we find we really don't want to talk to people.  But sometimes when we do....

So many times people who haven't walked in your particular shoes just don't get it.  And that means me, too.  For example, I know someone whose teenaged son became a paraplegic last year due to injuries suffered in a car accident.  The doctors told her people with her son's injuries normally either die, or walk away.  Well guess what, her son split the difference.  We can talk on one level because of some of what I have had to do for Bil and other family members but I have never had to take care of, or advocate, a person who is partially paralyzed and is so mad about the whole thing that he takes it out on everyone around him.  And who deals with constant exhaustion trying to run a business and working full time at another job so she can have medical insurance.

So you really try to pick and choose who you speak to, who becomes your friends.  The uppermost thing on your mind when you  live and breathe a special needs situation (and I am so fortunate that I am not at this point in time, although there was a time or two in my life when I did) is....will people really understand?  Will you get support?  (which is NOT the same thing as people feeling sorry for you.)

Sometimes you just have to trust your instincts.

Recently, I was thinking of some instances when I have just been blown away by people...or, in the British sense, gobsmacked.  In Part 2, I want to talk about a person I knew on one level, but I didn't truly know "the rest of the story"until after she was dead.

Flood Fascination

I didn't call my mother in law tonight, but I can just imagine what Bil is going through right now.  His fascination with the weather on TV mixed with his fear of extreme weather "in person".  His area didn't get the torrential rains we got today (my son put out a 6 inch gauge and it was overflowing by late afternoon) but they will be hit later tonight.  I know Bil will be following the weather up here closely, giving my mother in law frequent updates. 

I hope they don't have thunderstorms. We didn't but we had a very strong wind gust and I guess I'll find out on the news later how much damage that did.

Jim Cantore has been reporting on this storm all day.  Jim isn't Bil's most favorite Weather Channel's personality (he is partial to any blond female, and that has nothing to do with the weather) but is probably his favorite of the men.

Unfortunately, where mil and Bil lives, they are prone to losing power (knock on wood we are not) so I hope my mil is charging her cell phone.

Hopefully he rides the storm out OK, and his area doesn't flood.

Here We Go Again Part 1,849

I know, I haven't posted in a while.  Things have been a bit hectic in another part of my life, with some associated deadlines.  But here I am again.

Our visit last week with Bil and Mil went OK.  But in one way I'm still....not seething, but rather, seeking to find a way around this.

The day Mil dies (or has a major stroke or other sudden event-and she's had one small stroke again) we are going to be in a lot of trouble.  We do have HIPAA releases (my spouse does, anyway, which is all that matters) signed so Bil's primary care doctor can speak to us.  But we don't have anything else.  We can't help him with other medical matters, we have no releases to help him with checking, banking, paying bills or anything else.  His MSC (Medicaid Service Coordinator) has been seriously ill, and we suspect she has missed visits, with no one else at the organization he is a client of taking up the slack. We have no guardianship papers on Bil, no representative payee and I am not even sure which way we should be going or who we should be asking.  We don't want to spend more money on lawyers.

My Mil basically does what she wants.  She's asked me to research things at times then does what she wants to do anyway.  I feel like I am not going to research anything else for her.

But that day that Bil is alone in the world without her:  THEN WHAT?

I don't know that guardianship is what he needs.  But the latest thing that had me a bit upset is that she has a financial advisor and has given him almost everything Bil has, moneywise, to invest.  The advisor is quite willing to speak to us, which is good.  What it came down to is that there is no way to have us look at Bil's accounts online because my spouse is not a trustee of the trust.  We are a bit gunshy about his investing because in a previous investment she received bad advise on (NOT from this advisor) Bil lost a bit of money.  And then the next financial advisor rolled this bad investment into another bad investment.  So he lost even more money.

She has his money in the stock market, for Pete's sakes, someone who works part time in a sheltered workshop. And she doesn't understand the stock market.  That's what I am really concerned about.  I don't know if she is getting bad advice AGAIN.  And if that is serving Bil at all.

I wish we could convince her we are not "after" anything.  She is quite willing, more and more, to ask our help on her own affairs. But mention Bil, and the Great Wall goes up.

Meantime, we'll have no legal ability to help him when "The Big One" hits.

How do you find this kind of stuff out?  I should know but I am pulled in so many different directions right now, it is like my mind has turned to mush.

The Newspaper and Advocacy

This isn't a post about Bil "per se" but has to do with advocacy.

We've learned (I hope we have anyway) some tricks in the years of having to advocate for Bil and another family member, and hope the skills we learned make the below have a good outcome.  So thank you, Bil, for indirectly helping your mother.

I've written before about my mother in law, Bil's mother and caretaker.  She is in her 80's and suffers some mobility problems from some falls, and from a minor stroke she had almost three years ago (minor, in comparison to what might have been.) 

One thing my mother in law enjoys is her morning paper. But this has become an ordeal for her.  She has been having Bil go out and get it for her.  But finding the paper for Bil is like a daily scavenger hunt.  Will it be in the bushes?  On the driveway? Wet and unreadable? During the winter, will it be in a snowbank?  Or will it be somewhere mysterious, to be found weeks later?  He really wasn't up to the task, she sure wasn't and...for a dying industry to treat a 40 year subscriber that way,  to me was Just Plain Wrong.

My mother in law is a strong woman but more and more appreciates help.    She called the 800 number (this sure implies their customer service is outsourced somewhere doesn't it) and was assured, and assured, and assured, that the paper would be delivered properly.  All my mother in law wanted was for the paper to be put on a shelf under the mailbox, which would have been quite reachable by any deliveryperson without leaving the comfort of their vehicle.  Anyway, this 800 number gave no resolution.  I sure would like to know where she was calling?  Was it even in the U.S.?

Anyway, this Friday we visited and for whatever reason I decided I needed to do something so she could enjoy her paper.  I went to the paper (she said it was picked up by Bil that morning but the date was from over two weeks before!), got a feel for what the email addresses were like, and decided (although they didn't give his email address) to email the publisher and the VP of Sales.  I stated my case simply, just the facts, without any anger (this, we've learned, is the most effective way) and told them what I wanted the resolution to be-daily delivery onto that shelf.  And, I gave my full name, address and phone number also as the daughter in law who wanted to be advised of the resolution.

It was about 5:30 pm when I emailed.

I guessed their email addresses right.  The emails didn't bounce back.  I went and ate supper.

Within an hour the publisher emailed me back and copied several people.  Within the next few hours I got two other emails.  Then Saturday a rep called my mother in law and spoke to her, apologized, said the paper would be delivered per our request, on the shelf under the mailbox.  When I got home yesterday there was a phone message from the same woman, and an email from one of the earlier people (I had answered each email, thanking them kindly for their help).

It sure stirred up a little hornets nest, didn't it.  And if the papers keep coming in the bushes and in winter snowbanks, guess who will get a followup.

I do hope no other of their elderly subscribers are going through what my mother in law did.

So, again, some of the ways of advocacy we have learned came through.
Keep your temper (so hard to do sometimes!), be objective.
Be Prepared with the Facts
State them simply, do not show anger, do not ever be sarcastic.  Remember you are dealing with people (as hard as that can be sometimes especially when people get carried away with being bureaucrats.)
State the resolution you want
If you get results, always thank the people involved who help.


To the newpaper I would say this:
Dear publisher, I appreciate you working to get this resolved.  I hope it is resolved, and that your folks carry through on what they have promised my mother in law.  She deserves service.  She's been a loyal customer for over 40 years! And it is too bad someone had to go to the "head honcho" to get that service.
I appreciate you responding to me so promptly.  But it is obvious you are outsourcing services.  If you are doing it to save money, I'd like to suggest that you take a good look at what you are doing.  You may not be saving money if your service is driving customers away.
Those customers won't be back.  My young adult son wouldn't pick up a paper to read it if he was dying of boredom.  So you really need to keep the customer base you have.

I hope you do.

Social Interaction

You don't have to have autism to feel, sometimes, that social interaction is like a gigantic minefield.

I sometimes feel like that-a lot.  I'm introverted, and sometimes I would just rather be by myself.

Bil, though, takes it to an extreme.  I guess that goes without saying for anyone with autism.

Recently, though, I read a blog post that seems to say it all.  With funny pictures.  If you explore her blog, it will be time well spent.


I do keep thinking of the last time we were together with Bil (almost a month ago! time flies-but we will be seeing him again in about a week, everyone's schedules willing) and he actually came out and stayed apart from us, but close enough to observe us, when our family was all together on a porch, visiting.  That's the first time I've ever seen that happen.  We didn't encourage him at all, he did this on his own.

It may have helped that he was not at home.

I do wonder though, if my mil does need to have surgery, if he will come out any more from his shell if he ends up having to spend time up here with his two brothers.

I'll probably have more to write about after our next visit.

The Life More Restricted

This is not an autism post.  Rather it is a book review that I happened to stumble upon.  You could call it the life most restricted by circumstances-in this case, polio.

I've written about polio before.  I know at least one person who had it as a child.

Polio.  It struck terror into our hearts as very young children.  I was young enough to be just entering school when the Salk vaccine came out.  I remember lining up in the basement of my elementary school to get my shots.

Life in an iron lung would have seemed like a death sentence.  But not to the author of this book.

Makes me feel in a way strange when I think of Bil.  Is he happy within the circumstances of his life?

At least the woman in the iron lung was able to write her memoirs.  If Bil wrote his, what would he say?

And, would I want to know?

Surgery for Bil's Mother?

It looks like my mother in law is serious about pursuing surgery for her knee.  One of her nieces (in her 60's) is going to have some arthroscopic surgery and Mil is talking about seeing the niece's doctor-about an hour from where Mil lives.

I can't blame her.  It is putting her ability to live independently in some jeopardy.  Independence is extremely important to my mil.  I mean to say, it is important to us all but to her and others of her generation, I suspect it is important to a degree we baby boomers can not imagine.  The "rugged individualist", she is a very devoted Republican.  (I only mention that to give an idea of some of her mindsets.)

So I spoke to my husband today.  In my point of view, he tends to procrastinate over anything to do with Bil's housing situation.  But now he is going to have to face the fact that if she goes ahead with the surgery she may have to spend some time in rehab, and Bil can not live alone.  He will need some kind of in-house care, or someone looking in after him. 

We live 150 miles away.  The nearest sib is about a 20 minute drive away and works an afternoon/early evening shift at her job.  I don't know, in all honesty, how she would approach being "the one".  (This also gets a little into the book about daughters and daughters in law expected to do the caretaking that I mentioned in another blog entry.)  Bil works part time, two days a week (and I know they have been cutting his hours), and would need someone there to meet him when he gets off the ARC bus, and to make sure he is fed-among other things.

I know my husband will face this head on and full speed ahead when it is upon him-where we tend to differ is that my tendency is to be proactive and his is not.  Guess only time will tell who is right, but as a daughter in law...you guessed it, tag I will also be "it"!

(and we haven't even faced the colonoscopy his doctor wants Bil to have.....)

OMRDD vs. OPWDD or, What's in a Name?

Don't you love the names of these government agencies.

What's an OMRDD?  and why should it have been renamed OPWDD?

Just as the "Associated for Retarded Children" morphed into the "Associated for Retarded Citizens" (when many of its clients were actually living into adulthood-one small leap for its time) and then "ARC" with local chapters such as ours getting rid of the "ARC" intials alltogether....so has the NYS Office responsible for those with developmental disabilities decided to join modern times.

The word 'retard', once quite acceptable and descriptive (way beyond its narrow meaning as a technical term) is now one of those names that we recognize as a put down of those it tries to describe.  How can a "retard" show progress?  How can a "retard" be equal to you or me?

That's why our local "ARC" now calls itself....ACHIEVE.   How fitting.

A while back, the "OMRDD" in New York State recognized this same thing - since, yes, that's what the "R" in OMRDD stood for.  So years after the "R" word became a mind set to avoid, our NYS bureacracy was still serving its "retarded" citizens.

Not any more.  We were the 49th state to drop the "R" word but the important thing was that the preson who signed this legislation into law was himself disabled.  Not "retarded" but visually impaired. (some would say more about our governor but-that is treating him on terms of performance, not disability.)

So now people like Bil have to deal with the "Office for People with Developmental Disabilities".  Make no mistake, still the old bureaucracy.  (and, I hate to say it, but it's going to take a long time to remove OMRDD from my vocabulary.  I'm still trying, hence this post.)

All we can strive for is the day when "disabilities" is a word to be removed from the vocabulary, too.  Because the blunt truth is, these offices do not serve our disabled citizens.  In my point of view, the government programs that assist serve more (from what I've seen) to keep them down, in poverty, and dependent on government.  But I digress.

We have a long way to go, in basics such as liveable wages and housing for our "disabled."  I may write more about that in my next post, as far as Bil.

Mr. Bil and the Hurricane

Was Bil disappointed with Hurricane Earl?

I can see him now, tracking every moment of it.  I know he's pretty relieved, actually, that it went to the east and didn't hit where he lives.

Weather on TV?  Enjoyable.

Weather in "real life"?  That's a whole other story.

As a child (and even now) Bil was terrified of thunder.  He isn't even that thrilled about rain.  When my son was injured in a car accident, Bil was eager to get his mom up here (well, not that he could drive her) until the forecast on the chosen day was rain.

He stayed home.

Weather has always been Bil's special interest though.  He loves the Weather Channel and Jim Cantore.  (Also any blonde woman who happens to show up).  I wish there was some way he could tour the Weather Channel one day, but getting him down to Atlanta would be a whole other challenge.

A challenge about as challenging as braving a hurricane.

Betwist and Between

I am "inbetween".  Siblings have their support websites.  Parents have their support websites.  In laws have....well, we make it up as we go along.  As our special needs charges sometimes slip through cracks in life and in "the system", well, the in laws do to.

Sometimes it doesn't seem fair.  But then I read a story like this one.

I have to respect what my husband was...well he wasn't born into it because Bil is younger than him, but never the less he didn't "sign up".  When I married, it was for love, and maybe an understanding because my father was disabled.  But I doubt it, I think it was more youth marrying for love and not for what the future might bring.

For what it is worth, Bil will never be able (in my best judgment, and in the judgment of his Medicaid Service Coordinator) to be quite as independent as the author's brother.

Still, the man who wrote that article in the NY Times was able to "step up to the plate" when it was time.  I know one day we will get that dreaded phone call, and it will be our time.

Why does planning for that day seem like walking through gluey quicksand?

Bil at the Lake

My mother in law, sister in law, Bil, other brother in law and his wife, and my husband spent the afternoon at the brother in law's lake house in Pennsylvania.  A good time, I think, was had by all.

It's a lot of work, this lake house, for my brother in law and his wife, but she loves to entertain.  She talked about possibly having my mother in law up again in September.

As I expected, Bil occupied himself at the lake by watching the Weather Channel.  My other brother in law's wife, who is very sociable and outgoing, tried to engage Bil a couple of times without success.  She didn't (to my surprise) ask Bil to help prepare dinner, which she has on other occasions.  She really does a good job in trying to draw Bil into learning new skills. 

My mother in law helped chop vegetables for a salad.  She talked a bit about how lonely she was-her next door neighbor, (a widow who grew up about 20 years and a mile from where I grew up) who is also a good friend, occupies a lot of time with her family.  This has always been the case but my mother in law is becoming more and more dependent on her-to help her drive places, and so forth.  The shame is, once of her nieces lives only a couple of miles away but with 3 busy children, hardly even says "hello" to my mother in law.

And yet this niece's aunt- my mother in law's sister and, until she died a couple of years ago, this woman was taken care of by my mother in law.  (there were three sons but two of the three hardly paid any attention to their mother.  How sad.) My mother in law took her sister shopping, to almost all of her appointments, helped her with some light personal care and so forth.  And now....nothing in return.  It's really sad.  I pray I don't suffer a similar fate.

At any rate my mother in law treated us to some cookies which, she admitted somewhat sheepishly, cost her $18 a pound.  She doesn't have that kind of money!  But she can't break the habit of all those years when her husband was alive and she (after a childhood of poverty) finally did have some money.

We ate dinner outside and Bil, after eating, went back to the TV as is his habit-but to my surprise came outside a few minutes later.  He sat apart from us but he is always watching-it would be a little creepy, honestly, if you did not know him.  Again, you never know what is in his thoughts.

The future planning thing has stalled out somewhat.  We need to get back on track, but some immediate family issues in our family are hindering it.  Ah, this juggling act.  Ain't it wonderful.

Bil and the Mobile Home

Bil is up here (staying with my other brother in law and his wife) for a couple of days.

We went out to eat at a cheap but OK Italian restaurant-to our surprise Bil ordered vegetable lasagna (maybe because his mother did). He didn't say a word during the meal-just stared into space.   That would fool most people but I know he was picking up many details of what was going on around him to process in his own way.

Afterwards we went to my son's pride and joy-the mobile home he is moving into out in a country mobile home park.  He, again, just looked around.  I don't think he was that happy to be there because there was no TV (no money for cable or satellite yet and there is no reception up there otherwise) for him to watch the Weather Channel on.  But who knows-a mobile home may be an option for him-it isn't all that expensive (compared to other forms of housing) and he could be totally "alone" if he wanted to.  One nice thing about country living (I've lived both in NYC and in deep country, much deeper than where this park is) is that people tend to be "live and let live"-although they also know your business in a very deep way.  Both might be good for Bil.

This particular mobile home park seems very strict - they make sure it doesn't get "trashy", are particular about tenants keeping their grounds clean, mowed, no junk cars, that kind of thing.  This really may be something to look into, if Bil could get the supports he needs there.

A thought.


Later today we will all be going to my brother in law's lake home down in Pennsylvania.  I think he will be happier there.

Bil Must Move Out!

My mother in law wants to stay in her house "forever".  With her increasing physical problems I don't think it is going to be possible.  I want to honor her wishes but more and more I don't think it is right for her.

She is in so much denial.

She walks with a cane when she would probably be much better off with a walker.  It took several falls for her to admit she needed the cane, during which she did probably permanent damage to one leg.

She's had several recent small accidents with her car (fortunately, all involving her garage-nothing on public roads-yet).  The back of her car looks like a war zone.  There is no good public transportation where she lives and Bil expects her to be practically an on-call chauffeur.

She's had the "I've fallen" medical alert button for over three years now but refuses to wear it except when she is in the shower.

I think she needs to leave that house, and needs to be closer to two of her three non-disabled children.


I am very concerned about recent complaints that she is "bored" all the time.  Her good friend and next door neighbor spends much of the year out of state, and she is with family when she is in town.

She seems to want to be in front of the TV more and more.

On the other hand if she moves up here with Bil:

1. the cost of living up here in the Triple Cities is so much less than where she is in the NYC suburbs.

2.More transportation options if she has to give up driving. (I suspect that day may be closer than my husband wants to admit to.  I'm still worried about her recent accident where she drove into the garage with the garage door closed because she "got distracted". That's her reasoning for everything that happens.  She fell because she got distracted.  She misjudged parking because she got distracted.)

3.  I'm more and more concerned about the way she is spending money.  She feels she must be as generous if invited to a wedding, etc. as she always has been, for example.  And, she got invited to two weddings in three months "and had to buy a new dress and a new purse." for each one.  Well, no she didn't. But many years of spending without looking much at price tags (even though she grew up poor) isn't going to just stop.  When we looked at her spending, we were shocked on how much she was spending on food.  For just the two of them.

Of course, me (the daughter in law) is going to bear the brunt of caretaking.  Isn't that what always happens?

So what about Bil?
I think moving out for him would be the best thing to happen to him.


Whatever happens he MUST get settled in a housing situation before something really bad happens to my mother in law.  Because I don't know how he will react but it won't be good if she isn't there to cushion the change.  I've been told by his medicaid service coordinator that Bil is resistant to change to a greater extent than many people with autism.


Perhaps her moving out of her home might be a catalyst to her seeing that she MUST let go of him.  Not to stop being a mother who loves him but it is past time that he experience whatever degree of independence that he is capable of.

I hope we have time to talk about it this weekend when they are up here.

Independence Issues

Mil, Bil and my sister in law are coming up Friday.

Bil will have several experiences.  Friday, we'll be going to a casual pizza restaurant.  Saturday, everyone is invited to my local brother in law's lake home.  We haven't been there in several years. The family will stay there overnight.  So Bil will need to stay in a place he hasn't been to more than a handful of times.
Will it be violent?  Truly we have no way of knowing. 
Probably he will spend the entire time watching TV while the rest of us have a BBQ.

It will be interesting to see what turns conversation takes.

I've been reading an interesting book called The Daughter Trap about daughters and eldercare issues.  It is a lot more than a rant about the sacrifices daughters make to take care of elderly parents-a lot more.  My husband and I (he hasn't read the book) discussed some points brought up by the book during our exercise walk yesterday evening and he shared some things Mil has told him that he hadn't before.

Mil is complaining a lot about "boredom".  We both suspect she is depressed, which is not unusual.  More on that in our next post.

Anyway we will see what happens this weekend.

ARC Survey for Siblings and Parents

I was told about a survey on the ARC website.  After dinner I am going to tell my husband about it - I will probably have to fill it out but I want his feedback.

Don't know if I can get my mother in law to fill it out and if it is worth trying.  I do want to mention, ARC, that I appreciate very much you reaching out to siblings, not just parents.  Sometimes we sibs (and sib in laws) are the "forgotten ones" but we can be just as much caretakers as the sibs.

I hope this survey is more than a gathering of information.  Guess we will see.

Knee Problems

It's official, my mother in law (mil), Bil and my sister in law will be coming up later this month.  And with that, other news:

My mother in law's knee has gotten so bad that she is talking about checking out a local hospital that has been advertising about their state of the art orthopedic program.

I have knee problems (for us both, the main problem is arthritis) but no where near as bad as hers. And, I am 25 years younger than she is.  Still, when I've had times when I can barely step up on a sidewalk curb without agonizing pain, I think of her, living alone except for Bil, in a split level house.  Her bathroom and bedroom are up stairs, Bil is located down stairs, although luckily for her, not a full flight of stairs either way.  He won't volunteer any help unless she asks. 

She had an entrance built directly from the garage into her house, and that is going up and down stairs, too.  In fact, that stairs is where one of her falls occurred.

But back to my mother in law, the fact that she is even entertaining something like knee replacement surgery is a sign of just how much everyday pain she is in.  It's frightening too, in that I personally know a couple of not so good outcomes to this type of surgery (to be blunt:  one person who ended up fighting c. difficule - which at her age could be fatal-and it took months, and several trips to the ER to recover- and, someone else who did die post op, from a hospital-based  infection that the doctors never quite figured out.  (it could have been MRSA, but before the days when MRSA had a name.)

And, of course, how would we take care of Bil while she was recuperating.  She has had surgery before but it was a long time ago, back when her husband was alive and she still had (teen) children at home.  Now, she would need a caretaker.  And we are 150 miles away.  My sister in law, who lives about 20 minutes from her, would probably be elected once she was out of rehab.

I reckon we will talk more when she comes.  In fact, I don't know if she even attempted to get Bil the colonoscopy his doctor wants him to have.  She never talked to us again.  I have a feeling her physical problems have overshadowed this.

Worrying about Dementia

A post on a blog I like to read mentioned the horror of feeding dementia patients with a feeding tube.  This person knows thereof what she speaks of.  I've never had the honor of being a caretaker for someone with dementia and I pray I never am.

I know I am wandering a little bit from "autism" but there is something in common here-how we treat the most helpless of our society will bear on how we treat those with autism-some of whom need a lot of help (and some who can function quite well, thank you.)

When I think of this tube feeding post, I think of three people.

First, the sister of a work friend.  Said sister is in a nursing home, suffering from early onset dementia.  She is in her 60's and her mind is totally whereever the mind of a dementia patient goes.  We like to go walking sometimes, that workmate and I, and sometimes she excuses herself because she needs to go to the nursing home and help feed her sister.

Next, another work friend whose husband is in a similar situation, thanks to several strokes, and finally he too was moved to a nursing home after years of her caring for him at home.  She too is totally devoted to her loved one, visits him constantly, spends many of her non-work hours with him, or advocating for him.  Or thinking of him.

Finally, a cousin of my husband's, who cared for her father, in his 90's and with Alzheimers, until he died.  She never put him in a nursing home.  She did whatever she could, including partial home health aide coverage to give herself a chance to get away.  She even was treated for breast cancer during this caretaking period.  But she was bound and determined to be there for her Dad and she was, to the bitter bitter end.

And then I think of this blog post.  Who has brought us to this?  The insurance companies?  Won't pay for nursing homes to treat their residents like human beings?  [that being the case, what do group homes do for their residents?]

And you know what?  One day this generation of children with autism are going to age, and find themselves in nursing homes.  (shudder)

May someone care for me enough to save me from this fate.  And spare Bil, too.

UPDATE:  I may write more about this topic later.  But not now.  I decided this would be a bit off-topic.  So back to autism, Bil and Mil in my next post.

Dr. Lovaas and Me (Not but I wish)

Many in the autism field mourn the passing earlier this week of a pioneer in autism therapy, Dr. Ivar Lovaas.

In the world of autism, there was no "inbetween" when it came to Dr. Lovaas.  You loved him or you hated him.  Whichever end of this spectrum you are on, you have to admit that Dr. Lovaas changed the field of early intervention for those with autism forever.  Many have benefited.

It's tempting but I am trying hard not to play the "what if" game.  For Bil, there was no treatment, only a special ed program in school that failed him miserably.

Dr. Lovaas, back in the 1960's, started to pioneer an early intervention program for children with autism that became something now called ABA. (Applied Behavioral Analysis) It had its share of critics because originally it used something called "adversives" (i.e. there was an element of punishment) but Dr. Lovaas later changed his stance totally on this.  Today, many consider ABA to be the "gold standard" of childhood treatment.  It is said that some of these children, as they progress in school, even lose the label of "autism" all together.


In a way I am also sorry I never had the chance to look into this.  Back when Bil was younger....well, I just didn't know there was hope.  It was a different age and I was in a different place.  I can not beat that person up.  She no longer exists.  So, all I can give is an indirect tribute, as an "in law" of a man with autism. 

I know at least one area "autism mother" who did have that privilege of meeting him.  She is one very strong woman and I have to believe it was a life changing experience for her.

Dr. Lovaas opened many doors to children with autism either directly or through the ABA he pioneered.  He also opened the door to hope for their parents.  And isn't that what it is all about.

Hope.

Sometimes you Have to Laugh

Because even a serious blog needs a change of pace I present.....

Zach Anner!

Arguably the funniest man with CP on the planet, Zach is NOT politically correct.  Ya gotta love him-enjoy his videos!

Bil and the Dentist

Sometimes I could take person-centered planning and....I wonder how many people with intellectual disabilities have been harmed by the assumption that the client always knows best.


This isn't true, I'm sorry to say, even if a lot of advocates will disagree with me.  


I am not going to compare Bil to a child, but let me ask a question of those advocates.  Would you let your toddler make his or her medical decisions?  I didn't think so.  Their brain isn't fully developed and they don't have the capacity to make those kinds of decisions.  If you did let a toddler make those decisions, wouldn't it be a type of child abuse?


Bil, of course is an adult, but let us be blunt, he has intellectual disabilities.  He is no child.  In the eyes of the law, he is able to make his own decisions.  But can he?



Bil has always resisted going to the dentist.  This is a common behavior among those with autism.  So my mother in law, without support from those who work with Bil, had stopped bringing him.   So we felt we had to step in, my husband and I.  I hate to invade his privacy in this way, but I have an important point to make.  He had breath that could knock you out at 50 paces.  One time I had to ride in a car with him, in the back seat, and nearly passed out.  I am not exaggerating.  This wasn't halitosis.  This was a sure sign (to me) that his teeth were rotting.


I've listened to my dentist, who teaches that periodontal disease can impact health dramatically, causing a host of other problems, including bacteria going into the heart.



We had several conversations with his MSC (Medicaid Service Provider).  She didn't seem to think it was a problem.  But finally, we got through to her, proving this wasn't more than a cosmetic issue.  It was a health issue.


Bless her, she found dental care for him.  This is not easy for people with autism to find.  We did some of our own research (the Special Olympics can be a source for this type of information, by the way and I would love to give a little shout-out to them) but she got Bil to the dentist.  He had to be sedated (this is common, too) and he was not well pleased by what had to be done to him.


But the dentist was able to treat what he found.  Thank heavens!


But left to Bil and his feelings about his health, his teeth would have kept rotting.


He was not capable of making an informed decision, any more than the man with stroke-caused dementia I wrote about in my last post.  


Why do medical people think they can treat the disabled like that?  Do they not deserve to have steps taken to preserve their health?  Are they not entitled to live their full life spans?

Let the Resident with Dementia Make His Own Medical Decisions - and What Does this Have to do with Autism?

In a word, don't ever think you can put your loved one with autism on automatic pilot.  And sometimes you have to battle the "establishment" to do right by your loved one.


I have a friend who is a caretaker to her ailing husband.  Over the past 6 years he has battled against everything from stokes to cancer (more than once for cancer).   He now needs 24 hour care and is in a nursing home.  After a number of strokes, major or minor, he has some lucid days-but more and more, the days are not lucid.  And, due to the strokes, he can not think clearly.


So, of course, let him make decisions impacting his health.  And let's not consult with loved ones first, such as his wife who is at his bedside nearly every day (in addition to working full time, I might add.) 


So what does this have to do with Bil?  Please bear with me.   The following is printed with her permission: (the names of the guilty having been changed), one of the latest of her trials in caretaking and advocacy:


"The speech therapist, just called and said that (her husband) was very clear this morning about not wanting to drink any more of the thickened liquids. (We've been going around and around on this since he got out of the hospital where he battled back from a variety of ailments.) [The speech therapist] explained to him that he's at risk for pneumonia if he aspirates something into his lungs. He answered very calmly and politely that he'd rather take that chance than drink anymore of that s**t, or go thirsty like he's been doing. And he said it in front of the nurse. So she's going to call [his doctor]  and ask him to change the order.

Even though I've been using that very argument, they still leave it up to the resident--who half the time isn't even conscious of what is going on!"


My friend's experiences are valuable learning opportunities.  I listen and absorb. 
The bottom line is....YOU are the person who has to look out for your loved one.


NEVER "leave it to the professionals".


And, despite person-centered planning (which I know I don't fully understand) you CAN NOT let a person with autism necessarily make his own health care decisions.  Yes, I know I will be ticking off a lot of advocates, but I think the pendulum has swung too much in the other direction.

Tomorrow I will write more about this subject.  I may have touched on this before, but I want to do so again.