The Three Wishes for Bil

On this last day of 2012, I have three wishes:

1.  The continued health of Bil, my mother in law, and other family members
2.  That my mother in law finally see reason, and realize that Bil needs to be moved into a more permanent situation before she falls one more time, or becomes too disabled to care for him. That it may seem kindness to keep Bil with her but is trauma will be that much worse when that day finally comes when she can't be in his life full time - or not at al.
3.  That New York State come to its senses, and stop cutting of funding of services to the disabled, and their caregivers, who save the state so much more money than they cost.

I can't guarantee how much I will be posting in 2013.  Sadly, it somewhat depends on how much I need to rant.  I suppose, then, that my 4th wish could be for a rant-free 2013, free of any problems.

Like that's going to happen.

See you in 2013!

Transportation and People with Autism

Bil is unable to drive.  He does not have the mental abilities or required judgement to learn how to drive, as do many other people with autism.  We like to say that, with help, the disabled can do anything that a non-disabled person can do.  But that isn't necessarily true.

Driving is not a skill that everyone can learn.  And, in many parts of the country, that means that the disabled must depend on mass transit.

In our area of south central New York, this is what a person like Bil would face:

Mass transit that is constantly in danger of danger of being cut, or the fares being raised (both disastrous to the disabled....)

Sidewalks that are, many times, not plowed or cleaned for days and days after a snowstorm.....sometimes by homeowners, but more times than you would think, by businesses.  Yes, businesses.  Because they will plow their parking lots, but heaven help anyone who walks or takes mass transit to their business.

Sometimes, the homeowners can't clear sidewalks because they are elderly or disabled themselves, and can't afford to hire out.  You know htat pool of eager teenagers that used to exist for that function?  Too many times now, that help is hard to get.  Not all municipalities have programs to help these people - again, because of budget cuts.

Sometimes, those are the sidewalks the disabled need to get to the bus or train.  Impassible sidewalks, maybe they get punished by their employer or even fired.

Disabled people ask only that the "playing field be leveled", but blocked sidewalks hurt them, hurt the elderly, hurt many people - sometimes, even physically, when they fall.

But even if sidewalks are cleaned - it is still hard for the disabled to get around in the ice and snow.

One could wish that, with the New Year, that would change.  But we know it won't.

Still and all:  Happy New Year, Bil.

The Worst Time of the Year

Here in south central New York, winter has settled in, with snow, ice, and howling winds.

It is a rough time of the year for disabled people.

Many depend on HEAP (Home Energy Assistance Program) to help with the heating bills, but money is limited, and unti that HEAP check comes, they have to limp along their heat.  The heating people won't make deliveries without a certain number of fuel oil or kerosene gallons, and many can't afford that minimum delivery without the HEAP money.

People in this country may not believe how close some people come to freezing to death each winter, but this could be one of your neighbors.  It could be the young man helping you at the grocery store, making minimum wage at a part time job, with few or no benefits.  Or, the disabled vet.

Or, a person like Bil, with a developmental disability.

Bil doesn't even make minimum wage at his sheltered workshop job, but the county he lives in counts his income in with his SSDI (social security disability) and his Mom's pension, and bottom line, it puts her above the cut off for HEAP.  So she has to struggle along, and Bil struggles with her.

For the disabled, this is the worst time of the year.  And that isn't even the entire story.  More tomorrow.

Why Can't Bil Help? Because He's a Man, That's Why

Time for another rant.

Why is it, that in my in law's family, men can get away with not helping?

I blogged the other day about one of Bils relatives, who is over 100 years old.  Bless her, that she can continue to live independently - except she can't.  She has a son at home, and until recently, she was taking care of him, not the other way around.

He insisted on fresh vegetables, and this woman, who has three digits in her age, would stand by the sink, cleaning and cutting.

She still would get down on her hands and knees to scrub the floor until recently.  When she was younger, she had the highest standards in housekeeping, so maybe this was voluntary, but why wasn't her son doing the cleaning? Or, most of the cooking?  Or at least the heavy prep work, if he wanted his fresh veggies and not microwave Steamables, for example?

Does the family condemn this man who lets his centenarian mother wait on him hand and foot?

No.

This family attitude extends to Bil.  True, Bil now helps to carry in groceries.  It's become part of her routine.  And sometimes, he will fetch items she can't reach, at her request, especially if the item is on another floor.  But, I've gotten no support whatsoever from my mother in law in trying to train Bil in things like loading and emptying the dishwasher.  Or, putting plates and silverware (from the dishwasher) away.

Folding his laundry might be a stretch, but I think he could be taught.

I think there would be other ways that Bil could make her life easier.  Her mobility becomes more and more limited, and her falls more frequent.

I suspect I know why she doesn't try.

It's because he's a man.

Why does this family insist on waiting on their male members??????

She'd rather suffer, rather be in pain, than have her son live up to his full potential.

And she hurts him, too, by not giving him that chance.

Can't she see that?

The Birthday

Not Bil's, but a beloved aunt who is a centenarian.  She will be having a birthday in January, with a little party.  She is frail, but has all her mental facilities, and is a delight to be around.

Bil is expecting to be able to go to her party.

Mom doesn't drive long distances anymore, and this relative lives over one/half hour away from this aunt.  That means another relative will have to take her.  We live too far away, so another relative will have to do this, and that will all depend on the weather.

But Bil doesn't accept "we don't know", "it all depends", and anything with uncertainty. One thing I am trying to expose him to, more and more, is that life is uncertain.

At least, the last few times we've visited, Bil hasn't asked, when we were barely in the door, when we were going to leave.  I did not want him to do that because, while I understand that he has a need to know in order to structure his world, it is also a very rude question.

Bil seemed to accept the "we don't know, it depends on the weather" for whether he will be able to go to the aunt's party. And the funny thing is, once he is there, he will just stare into space, or sit with everyone as long as there is food - and once the food is eaten, he will go watch TV.

It still puzzles me.  I intellectually understand.  But it still puzzles me.

Bil and the Seat Belt

One thing that really annoys me greatly is that my mother in law lets Bil ride in the back of cars without putting on his seat belt.

Having survived a car accident several years ago because I was wearing my seat belt (I always have worn them, by the way), I am a stickler on insisting that everyone in my car wears a seat belt.  In New York State, front seat passengers must wear seat belts - but it is optional for back seat passengers above the age of 16 - unless the driver has a learners permit, in which case all occupants must be belted in.

So each and every time Bil rides in my car (or if my husband is driving my Mom somewhere with Bil in the car), I insist that Bil buckles in, but his Mom tries to tell me that Bil doesn't have to wear his belt.  Yes, if he's in the front, no, if he isn't in the back.  Bil doesn't fight it (well, a little, but he gives in).  I wouldn't care except why does Mom contradict me when I ask?  Why does she endanger her beloved son like that, letting him think it is every OK to be without a seat belt on?

Today, Bil had trouble putting his seat belt on.  To my amazement, he let me help me.  I accidentally touched him and immediately apologized.  I was afraid he would freak out.  He didn't.

Sometimes, Bil amazes me.

I thanked him, and told him that I care about him.

I am certain he knows that, but I wanted him to know, in my neurotypical way.

A Very Bil Christmas

We had a very pleasant Christmas today, at a relative's house.  We exchanged gifts, with Bil staring into space and not making eye contact with anyone.

But that doesn't mean Bil doesn't care.

He picks out all gifts with the utmost of care.  I don't know how much help his Mom gives him, but he always tries to base his gift on an interest the person has.

He was happy to be with family, but didn't want to get involved in any of the games we played with each other after dinner.  He wants to be with us, but, as usual, doesn't want to be involved socially with us.


I never knew Bil when he was really young, to know how he behaved.  So many children with autism find the holidays a difficult, overstimulating time.

But Bil copes well.  The family is used to this, and just played games around him.

Tomorrow, we will be going home and may not see Bil again until spring - depending on how harsh the winter is.

Support the Siblings!

I am taking the liberty of reposting this.  The Sibling Support Network is a most worthy support organization for siblings of those with physical, mental and developmental disabilities. I could only wish my husband would take advantage of them.  This was passed along by someone I know.

Efforts to support brothers and sisters are surprising hard to fund. It¹s
true in Australia, true in England, and even in Japan. The Sibling Support
Project receives no support from federal or state governments and we depend
on the generosity of people like you.

If you or a family member have benefitted from Sibshops, SibNet, SibTeen,
SibKids, SibParent, or our new Grandparents of Kids with Special Needs
project please consider making an end-of-the-year donation to the Sibling
Support Project.

There are two easy ways to make a donation: online, at
http://www.siblingsupport.org/about/support or by mail. You can mail your
check to

The Sibling Support Project
6512 23rd Ave NW
Seattle, WA 98117

Thanks!

Don Meyer
Director, Sibling Support Project
A Kindering Center program
6512 23rd Ave NW, #322
Seattle, WA 98117 USA
206-297-6368
donmeyer@siblingsupport.org
Sibling Support Project Website <http://www.siblingsupport.org>
Our training calendar <http://plus.calendars.net/sibshop>
Our bookstore <http://astore.amazon.com/thesibsuppro-20>
New! SibTeen! <http://tinyurl.com/SibTeen>
Our brothers, our sisters, ourselves

Newtown, Aspergers and the Mentally Ill

I am breaking my silence about autism and the Newtown shooting.

I want to go on record to declare my support for advocates of those with autism and Aspergers Syndrome.

There has been so much misinformation in the media about autism and Aspergers. 

This is a spectrum disorder. Let's talk about Bil for a minute.  Bil, my brother in law with autism, is not Adam Lanza.  He never could be Adam Lanza.  He never would have been Adam Lanza.  Period.

Being socially awkward is not the same as the type of mental illness that apparently Adam Lanza suffered from.

And, I want to go on record to declare that the way we treat mental illness in our country is an absolute disgrace.

It doesn't help anyone.  It doesn't help the sufferer, it doesn't help the families, and it doesn't help society.

It avoids an issue that must be discussed, and discussed NOW.

I have personal experience with someone with mental illness. I've seen first hand that supports were little more than lip service.  Even today, I know someone whose brother is mentally ill.  I know someone else whose spouse is mentally ill.  Both times, families have been left with no support, and few options.

That has to stop.

Guns aren't the issue.  Mental illness is.  And I say that as someone who supports bans on the types of assault weapons that have no purpose other than mass carnage.  But I also know we had a mass shooting near where I live several years ago, and the shooter used a weapon legally purchased in a sporting goods store. Almost all of us who bought guns in that store would have used them responsibly.  Mental illness pulled that trigger, orphaned two children, and killed 13 people.

 Mental illness was the problem.  Experts say we are going to see more carnage if we don't change the mental health system.  And now we in the United States are in the most vicious of circles, where we buy even more guns out of total fear.  How many guns does it now take to defend our families from the improperly treated mentally ill?

Calling for armed guards in schools will not help the mentally ill.   Columbine had an armed guard.

We must change the mental health system.

When I was growing up, we said "Support Mental Health or I'll Kill You."  It is no longer funny.

I Wish I was a Wise Man

This time it's snow and wind.

First, there were the immediate concerns.

Will my mother in law lose her power?  Will Bil be temporarily at the mercy of his mother in law's decisions to stay put (or not) without power?  After Superstorm Sandy, it took days for her power to be restored.

This time her neighbor, who helped out so much, will be far away, in her winter home.

But now, there may be another storm coming right after Christmas.  We are going to have to make a decision, while we are visitingher and Bil for Christmas, of the best way to insure her safety.  Worse case scenerio, we will have to cram Bil and Mom into our small car and bring them back with us next Wednesday or Thursday.

But we can't keep doing this.  Again, I know "the our of decision" is almost here, but I still feel like a fly stuck in amber.


I feel paralyzed by the events in Newtown, which continue to affect some of my thought processes.

I wish I was a wise man, and I wish there was a star shining in the sky that would give us direction and guidance.

The Fallout of Aspergers

My mother in law fell again.  She is OK, with nothing broken, but did hurt herself, and is struggling with pain.  And now, we are struggling with the pain brought by the mass shooting in Newtown.  In a strange way, these events are related.

I think we are very close tothe point where Mom is not going to be able to live by herself and Bil any more.  Pure and simple- society does not support individuals with Aspergers or autism, doesn't support their families, doesn't support their siblings, or their parents.

At Christmastime, we are going to have to talk about Mom's future and Bil's.  It isn't going to be a pleasant conversation.  But she is now at the age where injuries are just not going to heal.  And Bil really can't help her anymore.

Bil is one broken hip (his mother's) away from a major life change - and our lives, too.

And that broken hip will make Bil homeless, if Mom has to leave her home for more than a year.

And then, what?

Do you know what I am afraid of? The aftermath of Newtown and the horrific shooting there by a 20 year old man who was obviously mentally ill.

There are rumors that the shooter had Asperger's Syndrome.  People are going to equate his mental illness with Aspergers Syndrome.  And then what?  Will people become afraid of all individuals with Aspergers? 

I think we've just seen the tip of the iceberg.

The Final Days

Thanksgiving with Bil will be the last Thanksgiving of the status quo.  I know that now.

My mother in law's days are numbered before she suffers another fall.  She increasingly is losing energy.  She has the will, and has a very positive attitude, but her constant pain and other problems are wearing her down. She would have had to be superhuman not to become more and more wore down.

During our visit down to Bil, we spent a couple of hours filling out Bil's Medicaid renewal paperwork.  We still don't have a clear indication of how he latest budget cuts will impact Bil, but his Medicaid Service Coordinator has such a heavy caseload that she can barely keep track of Bil any more.

We will see my mother in law next at Christmastime.  

In a Far Away Land Hope Comes

This is a blog focused on my brother in law, who happens to have autism.

However, I do read some other special need blogs, and I was amazed to read a blog post about raising awareness of Down Syndrome in Namibia.

I have written at times about Autism and how it is treated in other countries - Korea and Japan, for example.

This is a very hopeful blog post and I can hope that something could happen in a far away land to their citizens with autism, too.

Giving Him Shelter

Bil had quite an interesting last few days.  First, Hurricane Sandy, spending it with his mother at a relative near NYC.  Sure enough, Bil's home (he lives with his mother) lost power so we guessed right in helping his mother find shelter.  But they left Thursday to check on their house, and my mother in law didn't want to impose on that relative any more.  It turns out they were able to stay tonight with a family friend whose power had been restored.  I hope they can stay longer.

As of tonight, the power to Bil's house still hasn't been restored.

My mother in law called NYSEG, their electric utility, for help, and was basically told to call the Red Cross.

Let me explain again why most shelters DO NOT work for individuals with autism, people who depend on routine, and who can't withstand sensory overload very well.  Their hearing and sight is keener than you can imagine.  Some, (not Bil) are non verbal.  Some can't even toilet themselves.

Shelters have many elements that will upset a person with autism. The routine of their lives has already been disrupted. At a shelter, there is no privacy.  There is no true routine.  They get fed and there is a TV. What shelters also have is constant sensory bombardment.  And staff while, well meaning, many times know nothing about autism.  If a person starts to have a tantrum (which may happen with the sensory overload) or starts stimming, they may interpret the behavior as violence, with tragic results.

With the changes in weather patterns, and constant power outages due to storms (several a year now), we MUST find a better housing option for Bil and his mother, whether or not she wants to buy into it. At least we must protect Bil.  She can choose for herself.

But she can't drag Bil into it any more.

Powerless Bil

Considering what happened due to Superstorm Sandy in NYC, just a few short miles from where Bil and his mother are staying with a relative - Bil has lucked out.

He is comfortable in a finished basement, with all the privacy he could want, while my mother in law visits with her relative.

But, she wants to go home.  Never mind that her entire town is without power.  Never mind that maybe 90% of her county is without power.  The drawer of home, comfort, and routine is a powerful one to all of us, especially when you are elderly.  She wants to go home, even though there no power.

But what about Bil?  Is it selfish for her to take him into that situation?  I think it is, especially as the relative, who has to go out of town, says they are welcome to stay in her absence.

I think we are going to have to put our feet down about this. 

As advocates for Bil, I think we have to do this, IF Bil wants to stay rather than be in a house without power.  (and, truly, if he wants to go home, I still think a woman in her 80's needs to be in a place with power, especially with cold weather just around the corner.  It could be days or even weeks before power is restored.)

We may have to work out something else, but first we will see what tomorrow brings.

The Drive to Safety

 For the second time in 15 months, Bil has had to evacuate in advance of a storm.  They aren't in danger of flooding where they live, but they are prone to power failures.  And, I even worry that a tree could fall on their house.

Now here comes Tropical Storm Sandy, with thousands and thousands of people evacuating.

Bil, is safe - I hope - with a relative.  His mother is there too and at the very least they will have company in case anything does happen.

Now I can rest a little easier.

But how many times is this going to happen?  As a long distance caretaker for Bil (my role more like an advocate right now) and my mother in law, who is in her 80's,  and global warming, this seems to be happening more and more.

I am so grateful he doesn't have to be in an evacuation shelter.  I dread the thought of a man with autism having to be in one of those places.

Now let's hope everything stays OK in the tri-state area.
 

Bil and Hurricane Sandy

We, and a couple of other relatives, have found a safe place for Bil and his mother in law with the storm called "Frankenstorm" bearing down on where they live.

Bil is terrified of rain, especially thunderstorms.  And, there is always the chance of a power failure.

Tomorrow, they will be traveling to one of Bil's cousins, who has been gracious enough to put them up in her home for the duration.  We were lucky, because a few more days and she would have been on a trip thousands of miles away.

For now, they will be safe.

But....
I think it won't be long before we have to face the fact that perhaps it is time that his elderly mother, my mother in law, can no longer be in her house alone, and we will have to fact what living arrangements are best for both her and Bil.

Its not easy, doing this long distance.

A Happy Day

Today, my husband and I traveled down to the New York City area to attend a family gathering.  Bil was there.  Again, he was "just there" -always on the sidelines, never interacting with anyone, never seeming to enjoy himself . But, one thing I am grateful for is that my mother in law NEVER excluded him from family gatherings.

Fortunately, his behavior has never been objectionable.  He just keeps to himself, like The Invisible Man.

We weren't able to stay with Bil and my mother in law on this trip, so didn't get to talk much with Bil.  He seems to be doing OK right now.  I've been in contact with his Medicaid Service Coordinator and the case load is now so big that visits with Bil are rare.  We keep in touch once or twice a month, and I appreciate it.

We will probably see Bil again at Thanksgiving time.  Let's hope nothing happens between now and then.

Saturday the 13th

It is becoming more and more difficult to post on this blog.

I blog in spurts, maybe two or three days in a week, and then I don't blog again for two or three weeks.

I guess as long as I want to keep this as a type of online journal, that isn't bad.  But I'm thinking of rolling this over into another blog, perhaps "cannibalizing" it.

For now, please bear with me.  I really need this as a safety valve, especially when I feel like whining or complaining.  Right now, it isn't so much my mother in law I am angry at, but rather another family member, who could be a big help but doesn't want to be bothered.

But don't be surprised if I don't post a lot, and especially don't be surprised if I don't blog much (if any) during the next couple of months.

On the other hand - I may have a lot to complain about in the near future.

We'll see.

Sibling Stories

While I am on the topic of online sibling support, I found this wonderful blog:

Sibling stories.

How I wish I could write one about Bil.  But I don't think that my husband, Bil's brother, would allow me to.  He doesn't want to be involved with any kind of online support.

It can be very lonely being the in law of an adult with autism.  So much uncharted territory, a mother in law who has her own expectations about what Bil's future will be but just assumes we are going to go along with it, and a whole lot of other family dynamics.

But I feel myself on the verge of a rant, so I will just say:  if you are a sib, explore the Sibling Stories blog.  You'll be glad you did.

I just wish there was a similar support group for in laws.

Support for Siblings Through Amazon

If you are an adult and have a sibling with autism, or any other disability (developmental, physical or mental) there is a wonderful program called The Sibling Support Project that provides online support in a safe atmosphere.

This project needs financial support and there is a free (to you) way to provide this....

If you shop online at Amazon.com, instead of getting into Amazon in the regular way, use this link:  if you enter Amazon using this link a portion of what you buy will go to the Sibling Support Project.

http://astore.amazon.com/thesibsuppro-20/

This will bring you into something called the Sibling Support Project Store.  Don Meyer,

Quoting from the Store:

 Dear friend of Sibshops and the Sibling Support Project—

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

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

You can shop for just about anything at our Astore. Once you add something to your shopping cart from one of the categories seen at the right and proceed to checkout, you can then wander anywhere on Amazon. (And, if needed, you can yank any item out of your cart prior to purchase.) Any eventual purchase made within 24 hours of entering the Astore will benefit the Sibling Support Project.

And here's a tip: If you can't find the category you're looking for, just click "Miscellaneous"!

Don Meyer, who runs this program, is a tireless advocate for siblings.

I only wish my husband would join the Sibling Support Project.  But, like many men, I guess, he poo-poos the need for support.  But I suppose that would the topic for another blog post.

Concerns Raised over Independent Living Centers

A disturbing news article:  Concerns raised over Independent Living Centers.

Quoting from the article:

"The Centers for Independent Living provide information and referral services, training to help those with special needs live independently, peer counseling and advocacy services. As of 2010, there were 337 federally-funded centers across the country, all of which are run predominantly by people with disabilities themselves."

Continuing, from the article:

" a new audit finds, calling into question how effective the centers are at helping people with disabilities integrate into the community."

If/when my husband and I become responsible for Bil's housing, it is quite possible we would have turned to our local independent living center here in upstate NY.  On paper, these centers would have seemed to be the place to go for help - they are run by people with disabilities for people with disabilities.

But....is there any REAL help out there for siblings like my husband, trying to do right for his brother with autism?

Another disappointment.

Another Trip for Bil

Bil and his Mom are staying with his brother in upstate NY this weekend.

He did some eating out, visited some local attractions and even took us having to switch to a different restaurant last minute well.

Didn't hae much to say but I have a feeling he enjoyed being away from home with family.

My mother in law, right now, is the worry.  The last time we visited her over Labor Day she seemed to sleep more than normal.  Her hearing also has definitely deteriorated since spring.

I wonder how much longer she will be able to drive, and with that, Bil will be stuck in the house.

I hope he enjoyed this latest visit up to our area, because it may be a while before he can get out.

Bil at the Farmers Market

Bil loves to shop.  He loves to get out of the house.

So when we needed to go shopping in our recent visit, he came right along with us.  He even accepted an additional stop without much anxiety, which I was happy for.  In fact, it surprised me a little.

We took him to a farmers market.  I wouldn't be surprised if that was the first farmers market he went to.  Fortunately the market was a pretty small one and not too crowded.

He patiently stayed off to one side while we visited several booths and made our selections.  I can guarantee that he was recording, with his mind, everything that he saw.

At home, he took some of the purchases out of the car and walked into the house.  He is used to helping his mother by carrying her groceries, so that has become part of his routine.

Bil doesn't like to eat veggies - but his Mom has figured out a way to get him to do so.  The secret ingredient is something he loves, and can be shredded and put on veggies.  Bil also ate an ear of corn that we ate at the market.

This sounds like just a simple "What I did today" essay. But, with Bil and his autism, it is a lot more than that.

Will we ever know what it meant to him?

No Concrete Answers

Our visit with Bil went well, except for an interesting question he had.

He wanted to know if his Medicaid is going to be affected by "Obamacare".

This brings up several interesting observations:

1.  He knows about Obamacare; (no surprise, as he watches a cable channel devoted to news)
2.  He's heard, on said news channel, a lot of bad things about "Obamacare"
3.  Either this channel has made him very anxious; or
4.  He figured it out himself that there could be a problem.

AND

5.  He knows that Medicaid is benefiting him.

He knows his prescriptions are paid for by Medicaid.  I'm glad to know that.  Sometimes, it is hard to know just what he does know. 

 I am not sure if he realizes that he has a Medicaid Service Coordinator, which I think it is fair to say he considers (maybe not a friend, but) someone he can trust and talk to.

Once again, I feel obligated to mention that many people think of Medicaid as something that benefits "Welfare Queens".  In reality, the main recepients of Medicaid paid services, according to my readings, are elderly people in nursing homes.  I wouldn't be surprised if the disabled (like Bil) come in second.

We told him it is too soon to know.  I know that won't satisfy Bil, because he craves concrete answers.

But it's the only answer we can give him.

A Storm Chasing Dream?

The media story about a boy with Down Syndrome who was denied boarding because of being a "security risk" reminded me of a flying dream I have every so often.

Bil loves to watch the Weather Channel.  The Weather Channel is one of his special interests.  But, in the real world, Bil is afraid of the weather - especially thunder.

I doubt many adults (or children) with autism enjoy thunder.  Or severe weather.

And yet....there is a storm chasing tour designed especially for young adults with autism.

This is amazing on a number of levels.  Weather can't be predicted.  People with autism do not like change.  On this tour, they would have to accept sudden changes in plans.

Weather can be scary, and noisy.  These adults with autism must deal with unpredictable, loud noises.

People with autism like the familiar. These adults would have to stay in different motel rooms each night.

What an experience!  What a chance for these adults to expand their boundaries.

Another episode of "how I wish this was available for Bil years ago."  Now, I doubt we could get past his anxiety.  And speaking of anxiety....

I wonder how many of these young adults have to fly to get to where these tours tart.  Bil has never been on a plane.  And what would happen if we did get him prepared, and it was flight time and he became anxious?

Nice to know that certain airlines consider young adults with disabilities as a security risk.  I somehow doubt the story that this young man was being disruptive. Although, it is possible.  Just like people with autism can be disruptive if they are exposed to certain stimuli.

But a cell phone video of the young man shows a young, calm man, playing with a baseball cap.

The young man had flown more than 24 times before this.

We all know how many terrorists are people with autism. (not)

No, I think someone in the first class section they were going to sit in somehow figured out that this young man would sit in this expensive section, and no, that just wouldn't do.  And on the flight he finally ended up on, no one was seated within two rows of the family - like they had a communicable disease.

One of my dreams would be to have Bil get training so he could fly one day, just like this young man with Down Syndrome has done, with his parents' support, many times.  But he would also be at the mercy of the airlines.

I think it's likely that Bil would never be able to participate in a storm chasing tour.  Or (without a whole lot of preparation) get on a plane.  But wouldn't it be awesome if he could?

Workshops I Wish Were Around Years Ago-Preparing for the Real World

I do not publicize this blog as it is (at times) a "rant" blog.  However, I do want to post this for anyone from Upstate New York, if they stumble across this blog.

Oh, if only we had this for Bil about....40 years ago.


The Family Resource Network, Inc. Presents its Fall Conference on Autism Featuring Chantal Sicile-Kira, founder of Autism College and Author of A Full Life with Autism

A Full Life with Autism: Preparing for the Real World

Conference Description:
For individuals with autism and for others with developmental disabilities the transition to adulthood can be challenging, but with proper preparation it can also be a positive life experience. Hard-won wisdom and practical tips on how parents and educators can pro-actively prepare teens of all ability levels for adulthood will be shared.
Topics include a short resume of puberty, relationship boundaries, sexuality, self-regulation, self-advocacy.

The skills needed for employment and college will be addressed. Topics include what top skills employers look for in employees; how to create community connections, finding mentors, creating opportunities based on interests or skills. Examples of what parents and educators have done elsewhere with positive results will be shared.

Conference DetailsDate: October 4, 2012
Time: Registration: 8:30 AM
Morning Session: 9 AM to 12 PM
Lunch (included): 12 PM to 1 PM
Afternoon Session: 1 PM to 3:30 PM

Location: Tompkins Cortland Community College
Frank Taylor Forum
170 North Street
Dryden, NY

Map:Locate

About Our SpeakerChantal Sicile-Kira is an award-winning author of five books and the Founder of AutismCollge.com which provides practical information and training on-line.

Chantal has served on the California Senate Select Committee on Autism & Related Disorders, and was appointed to serve as Co-Chair, South Counties Autism Regional Taskforce.

Her most recent book is A Full Life with Autism: From Learning to Forming Relationships to Achieving Independence (Macmillan 2012), co-authored with her son, Jeremy, who graduated from high school at age 22 with a 3.75 GPA, and gave a commencement speech using voice output technology. Jeremy is the Autism Research Institute’s Youth Representative to the United Nations, and the California Youth Leader for the Global Autistic Initiative.

For more information about our speaker, visit the following:

http://www.chantalsicile-kira.com/ &
http://autismcollege.com/

Registration Information

Registration is FREE for parents and caregivers of individuals with disabilities.

The fee for professionals is $40.00.

To register on-line go towww.familyrn.org
and click on the News & Events and Conference links.

OR

Register by phone by calling 607-432-0001.

Lunch is included.

Seating is LIMITED so please register early.

Registration Deadline is September 25, 2012.

Our Thanks to the Following:

The NYS Office for People with Developmental Disabilities

The Southern Tier Special Education Parent Center

Their support of this conference is greatly appreciated.
Family Resource Network, Inc. • 46 Oneida Street • Oneonta, NY

We took the NY Sibling Survey

Earlier, I had written about the NY Sibling Survey posted online by Cornell University.

Today, my husband and I took it - he answered it and I input it.

In all honesty- will it make a difference?

Realistically, I don't think so.  But first, a comment:

It would have been nice if some of the questions had space for explanation.

For example - how often do you talk to your siblbing?

Well, it isn't too often because Bil is very reluctant to use the phone.  His brothers only talk to Bil if they are visiting in person, and both of his brothers live out of town.  But saying "less than once a month" implies we the siblings don't care. That is very far from the truth.

There also seemed to be an emphasis on training. Questions like: what kind of training do you need?

Siblings don't need training as much as they need help!  Physical help.  Not just referrals or education. Aging parents who don't want to let go of their caregiving responsibilities need help big time!  Training isn't going to give siblings and aging parents the help they need.

Apparently we will be trained to death but won't get the help we need.

What help is that?  Let's start with appropriate housing for our siblings, and go from there.

Oh well.  I didn't have high expectations.

Like a Dance

Two steps forward.  Three steps back.

Bil refused services offered that could have helped him with some of his anxiety issues.  We were hopeful, but once again Bil turned the services down.

It's disappointing.  It is a big burden for his mother, who finds herself in her mid 80's with increasing mobility issues, to take him everywhere.  We do what we can but we live far from him and can only see him a few times a year.

It sure would help if he would permit someone to take him on outings, take him shopping, and so forth, but it is very hard for him to trust anyone.  Meeting a new person can generate a ton of anxiety for him.

These services may have helped him overcome some of this fear.

All we can do is keep trying.

Man with Autism Denied Heart Transplant -Please Be an Organ Donor

I pray my brother in law Bil never has any kind of medical problem.

There was the little girl in the news several months ago because Childrens Hospital of Philadelphia (CHOP) denied her a kidney transplant (a family member was the donor) because the little girl was (OK we are going to be politically incorrect here) intellectually handicapped.

Childrens Hospital of Philadelphia of all hospitals.  Years ago they saved the life of someone I know.  I guess lucky for him he wasn't handicapped.

Now, another hospital has denied a 23 year old man, with autism and "psychiatric issues" a heart transplant.  And, what a surprise, in Pennsylvania.

What is going on here?  Well, like so much in this world, it is more complicated than a surface rejection of someone with a disability.  Transplantable organs are scarce.  Doctors, everyday, must do a type of triage.  A terrible type of triage. (this was not an issue in the CHOP case but it is with the man with autism case.)

Yes, organs are scarce.  But do not people with autism have the same right to life as all of us?

But in the meantime.....

What needs to be worked on first (as it happens, I know someone with kidney disease - not Bil, but someone who knows Bil- so this is an interest close to my heart) is why we have shortages of transplantable organs in this country.  It's because the pool of people who have declared their OK to have organs taken from them in case of untimely death is a lot smaller than it should be.

Unlike kidneys (and livers), which can come from living donors, hearts can not.

There is one immediate way to increase the supply - sign the part of your drivers license that permits organ transplants.  If you are applying for a license, or renewing one, check that box.  Some states also have a registry.  Please do it.  Today, if possible.  You could indirectly save the life of someone you know or love.


And back to the issue of people with handicaps and organ transplants - there must be a STOP to using a person's handicap to deny a transplant just because there is a handicap.  Even the doctors in the man with autism heart transplant case admit that his autism in itself would not cause him to reject the heart.  It is other issues - that, perhaps, could be controlled.  Yes, antirejection drugs would be needed, but what happens if, for example, if a person with autism has diabetes?

But until there are more organs available - and more enlightenment about autism - I fear for Bil.

The NY Sibling Survey is Live

Passing this along to all NY sibs of a disabled person!

 NYS Sibling Survey Page!

Are you an adult (over 18)?

Are you the brother or sister (sibling) of a person with a developmental disability*?

Does your sibling reside in NYS (including NYC)?

If you answered "yes" to these questions we want to hear from you! Please complete our New York State Siblings Needs Survey. We are trying to better understand the needs of siblings in New York State. The findings from this survey will help us plan the next steps to support adult siblings of persons with developmental disabilities. We will also give you a list of sibling web resources at the end of the survey.
The survey will take about 10-15 minutes of your time.

Click on this Survey link:

New York State (NYS) Siblings Needs Assessment Survey

We want to include as many siblings as possible. Please promote the Sibling Needs Assessment Survey by forwarding this email and/or encouraging siblings to complete the survey.
The survey may also be reached at this easy to remember web address: www.nyssibsurvey.org
You can find out more about the survey and the organizations and people that are helping with the project at this link:
http://www.ilr.cornell.edu/edi/p-NYSSiblingNeedsAssessment.cfm
In May 2013, information regarding the survey findings will be posted at this link as well.
Please forward this message on and help us find more siblings!

A Chance for Bil?

I think we may finally be making some progress in obtaining some services for Bil, at least on a temporary basis.  It's too soon to tell yet but we are holding our breaths, my husband and I.

I hope the service Bil will be able to get will greatly impact his quality of life.  Hopefully it may enable him to eventually overcome some of the fear and anxiety he faces when given the opportunity to have something new in his life, even if that something new enables him to do more of the things he loves to do.

In the meantime, I am now in contact with another person at the place where Bil receives Medicaid Service Coordination, someone who has known Bil for years.  This can only be a good thing.

I can't say too much more right now.  I should probably know by sometime next week.

I hope so that our hopes will not be dashed.

The Conspiracy of Silence

This is a belated father's day post and rant.

I couldn't help but think when I read this New York Times blog post posted last father's day.....

Sometimes I resent Bil's parents (my in laws) so very much because they just don't want to LET GO.

My father in law claimed he had "everything all prepared" for Bil.  When my father in law died, we found out he had done:  nothing.  Absolutely nothing.  Never got him on Medicaid, although we found out later Bil was the ONLY PERSON in his sheltered workshop not on Medicaid. (Why does that matter?  Because you can't get service coordination, most services without Medicaid eligibility.).  By the time this happened, budget cuts had started and we really had to struggle to get him onto Medicaid.

Left Bil's mother holding the bag.

He hadn't seen a dentist in years and had bad breath that could knock you over.

Didn't they ever smell it?  I couldn't even hardly ride in a car with him without gagging.

She did what she could after her husband died (and yes, Bil did finally see a dentist) but now she is in her 80's, has increasing health issues, and is more and more frail.  Yet she won't let go.  We (Bil's brothers and sisters) have to be responsible for Bil once she is dead but she just assumes this is going to happen by some kind of osmosis.

But then, I get to thinking some more....

We are fortunate in a way though that Bil's Mom still wants to care for Bil with all her heart and soul.  Because that's the way "the system" is set up.  Never mind people in their 80's....I have read about people in their 90's caring for their children with autism!! It has to be so very hard, with failing eyesight, failing ability to walk, failing hearing....and they have this burden, which state governments are more than happy to let them do WITHOUT ANY HELP.  Although said parents are saving the state millions.

Should the state help?  I guess that is the basic question here.

You know the saying that "it takes a village to raise a child?"  It also takes that village when people can no longer shoulder a burden.  They deserve that help.

They deserve to be able to put that burden down.

And, to flip this again, parents also need to help their non-disabled children ease into their burdens.  Don't just assume it will happen by osmosis.

Sometimes all of this just makes me want to scream. 

The conspiracy of silence.  The elephant in the room.  I am so sick of it.

The Miracle Project and The Magic Paintbrush Project

This post isn't about Bil.  Well, maybe it is, in a way.  Two shoutouts. 

Again, I can wish these projects were around when Bil was younger, but wishes really don't accomplish anything.

I wanted to give a shout out to actor Jack Black and his work with autism, as he raises awareness of autism
through The Miracle Project.

And locally, there is a wonderful organization in my city called The Magic Paintbrush project.

One day, there will be an organization just for Bil.

So many lost opportunities.  We still hunt for the found opportunity, the one that will make a true difference in Bil's life.  Until then.....

Sigh.

The Medicaid Lifeline

We got an update from Bil's Medicaid Service Coordinator. 

Some of the things put into motion as a result of my husband's conversation with her in July are progressing.

But we can't lose sight of the fact that cuts in Medicaid and other services continue.

So many people don't realize that Medicaid isn't just for so-called Welfare Queens.  Many people with disabilities depend on Medicaid, and not just for their medical and dental services.  (I also note here their selection of doctors and dentists is greatly reduced from if they had private insurance - and it is so hard for them to get jobs offering private insurance here in the United States.)

They depend on Medicaid for just everyday services - someone to help them learn life skills, someone to keep them company and allow them to interact with the community, even sometimes someone to provide counseling in life's harder moments.

We can only hope Bil can get these services before the Medicaid rug is pulled from underneath him.

People First Disabilities Last

Ever hear of People First Language?

I do link to articles on occasion that refer to "autistic people".  But I try to abide with People First language in my own blog writing.

Bil is a person with autism.  He is not autistic.  Autism is just one aspect of who he is.  Granted, it is an important aspect.

But it is still one aspect of a man who loves to read horror novels, loves to follow his New York Mets, and worries about the weather where his brothers live.

A North Carolina website gives a nice explanation of People First language.

So why do I mention this?

I'm still finding a number of otherwise worthwhile articles who describe people with autism as "autistic".  Well, at one time people were also "confined to wheelchairs", were "mentally retarded" and were "blind as bats". The language was a symptom of beliefs that these individuals were not worth the time and trouble to provide them with services and supports that allowed them to flourish to the best of their ability.

Thankfully, state statutes, more and more, are shedding this "person is the disability" language.

But People First isn't always a good thing, as I will blog about in the near future.

Adults with Autism and the Clergy

My brother in law is one of a growing number of adults with autism.

What will their future be like?

My brother in law did not come of age in the (what I call) era of A.D., the after Autism Discovery era.  When Bil was born many people with autism were diagnosed with mental illnesses.  In fact, my mother in law just coped as best she could and it was a friend who encouraged her to take her son for an evaluation - when he was almost 18.

No Child Find.  No schools trying to identify him, other than as a person fit for special ed, to be warehoused in a terrible BOCES placement. (it's a long story, but he was able to get out of it and was somewhat mainstreamed in high school.)

His adulthood has been spent in a sheltered workshop.

But what about other adults?

I have a blood family member with PDD-NOS.  He is a young adult now, in his 20's.  He is a lot more high functioning than Bil, and has had all the proper supports, but he struggles in many ways.  He has an ambitious career aspiration, which he has been working towards for many years - to be a clergyman.

I find that most interesting, given the level of social interaction a clergyman (no matter what religion) or woman must engage in.  Counseling, consoling - it is a lot more than learning the Holy Book(s) of your particular religion.

For this reason I found it of interest when I read an article about a Syracuse, NY pastor who has struggled for years before his diagnosis of autism.

I truly don't know what the future of my blood relative will be.  But I hope he can somehow fulfill his dream.

Do I Make My Struggles For Bil Public?

Up to now this has been somewhat of a private blog. But there are various blogging challenges I can join and if I did, I would have the opportunity to gain some readership for this blog.

But if I do that, I can never go back.  This blog will be public, and Bil, in a way, will go public with it.

I don't know if I want to do that to him.  I have the right to do whatever I want for myself. But Bil can't give informed consent.  It's as simple as that.

I think I made up my mind writing this post.  I stay private.  I don't have any right to expose Bil to the world.  He doesn't know that I am writing this blog, and I don't think he would have the capacity to understand what I am trying to accomplish.

So.....isn't it funny how you can expose yourself to the world on a blog but still stay private.

Is there anybody out there in a similar situation to me?

I guess I will never know.

Driving Mr. Bil

One of our concerns when my husband spoke to Bil's Medicaid Service Coordinator yesterday was about Bil and his need to get out into the community.

He loves to be taken to certain places - the Mall, Barnes and Nobles, Wal-Mart, even a CVS.  He likes to browse around and buy a treat for himself.  When his Mom visits someone, Bil likes to purchase a dessert - a box of candy, or something simlar.

When we come and visit, he wants to be taken somewhere.

My mother in law has increasing mobility problems. She is in her 80's and will one day reach that not-so-magic moment when she will have to hand over the car keys.

And then, Bil will need someone else to drive him.  We live over 100 miles away, so it can't be me or my husband doing the driving.

But he is very resistant to having others (other than my husband, or maybe one of his other siblings) take him places.  He really would like it, always and for all time, to be his mother.

This is one of the things we discussed which brings me to a rant I will publish soon - about Person Centered Planning.  Bil will be offered something, he will say no, and under the rules of Person Centered Planning his no means no.  So if his medicaid service provider offered him someone else to take him around, he would say no, reflexively.  Because of his disability.  Because he hates and resists change.  And a new driver is change.

But he has to be able to depend on people other than his Mom and his siblings.

More on this another time.  I think my husband made some progress on this issue.

Overworked and Overloaded

Well, my husband called Bil's Medicaid Service Coordinator and got "the scoop".  I'll blog about what my husband was told in the coming weeks.

What was remarkable - or, sadly, not remarkable at all - was the MSC's comment about his/her workload.

This MSC has almost 40 clients now. Bil is one out of  almost 40. 

Can you imagine someone having that kind of case load?  In New York State, a Medicaid Service Coordinator is a person who assists persons with intellectual or developmental disabilities in gaining access to necessary services and supports.  The job is quite complicated.  He/she must use a  "person centered planning process" and be knowledgeable of all kinds of state and local programs.  There is paperwork - an awful lot of paperwork.

The Medicaid Service Coordinator is supposed to be an advocate for the disabled client.  (I believe the technical term is "consumer" but I will use "client".)  The ideal is:  the client tells the MSC what is needed and the MSC somehow makes it happen.  Of course, this is quite difficult in real life.

And oh yes, the client has to be on Medicaid.  Doesn't matter if  he or she is a millionaire's child.  He or she has to be eligible for Medicaid (and meet other criteria) to be eligible for this service.

At one time the MSC had to visit the client once a month.  Now it is down to three times a year.  A certain percentage of the visits are home visits.  Otherwise, the client can be seen at work or somewhere else convenient to both.

I would really like to give a shout out to Medicaid Service Coordinators.  I can't believe they make huge sums of money.  It has to be dedication that keeps them going.  I suspect a high percentage of MSC's have a family member (child, parent, sibling) with a disability.  Just an educated guess.

And now, with that in mind - I will write more about Bil's situation in the coming weeks.

The 300th Post

Tomorrow my husband has an appointment to speak to Bil's Medicaid Service Coordinator.

We have so many questions to ask.

1.  What can we expect with continued Medicaid service cuts?
2.  What about housing lists for Bil? (A sore subject with his mother, but we have to face this.)
3.  What about the upcoming People First waiver?
4.  (related to #2) will supported housing be cut? 
5.  And last but not least, what can we do to help Bil?

It is so hard to peer into the future.  With this, my 300th post, I find that in a lot of ways, we are no further along with advocating for Bil than we were in post #1.  It's like hiking through quicksand!  Has there been ANY progress at all?

I hope we will find out tomorrow.

Autism and Aurora

Thank you blog Autism Policy and Politics, for alerting me to this.

I never thought I would be writing about the events in Aurora, CO.  If anything, if I had a genie, I would make a wish that the alleged shooter be made invisible, and that the media would never write another word about him.

So why am I writing about "he who caused Aurora" today and not about Bil?

It would seem that a morning TV talk show person made a statement.speculating about the mental condition of this shooter.  He said:

"As soon as I hear about this shooting, I knew who it was. I knew it was a young, white male, probably from an affluent neighborhood, disconnected from society -- it happens time and time again. Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale" and "I don't know if that's the case here, but it happens more often than not. People that can walk around in society, they can function on college campuses -- they can even excel on college campuses -- but are socially disconnected."

Well, some of this is true.

But diagnosing someone with autism, or Aspergers, not as a mental health professional but as a journalist?  What is his proof?  What is gained by this?

I know sometimes I play at "does this person have autism?" based on my knowledge of Bil, and other young people with autism. But never would I make my speculation public.  And, on top of this, autism is a spectrum disorder.  It manifests in so many different ways.

I know a young man with Aspergers who will smile at you, and even crack jokes.

I don't feel Bil could intentionally be violent.  (this is not to say a person with autism might react to a stressful situation, especially if they were being bombarded by sensory stimuli- but it is situation specific, and not a personal lashing out.)  And Bil craves company, but in his own way, and on his own terms.

This journalist, who has a child with Aspergers, has just tarred the name of Aspergers.

And one more thought - if it turns out that the allleged shooter has Aspergers - it does not mean all mentally ill people have autism.

If he doesn't retract this, we are back to the era where people with autism were mentally ill - and confined to institutions.

Thinking of Ourselves First

 In September of last year, our area, along with many other areas of upstate NY, was flooded.  We suffered a one-two punch between Tropical Storms Lee and Irene.

Not long after the flood waters receded and we started our recovery here in upstate NY, my mother in law called.

When are you coming down here next, she asked.  I've received some papers in connection with Bil, and I need you to look at them.

Unfortunately, it was impossible for us to come.  We had been impacted by the flood and had to worry about ourselves.

What ended up happening?  Well, she hung onto the paperwork and waited until we could come.  And as it turned out the paperwork had a deadline, which she missed.  I had to do some emailing to "make it all right".

**Sigh**

Thus goes long distance caregiving.

Why am I writing about this now?  Because, in a couple of days, my husband (after a lot of emailing) is finally going to talk to Bil's Medicaid Service Coordinator over the phone. We were supposed to do this in September of 2011 - but life intervened.

Amazing to think that it took us 10 months to get to the point where we could do this.  No, not because of being physically impacted.  I think there was a lot of psychological stuff going on.

I'm glad we are back on track, though.  But sometimes advocacy is impossible. Sometimes a caregiver just has to think of him or herself first.

A Penny for His Thoughts

Like so many with autism, Bil suffers greatly from sensory overload.  He can control it a lot of the time, but sometimes it just becomes too much for him.

Fortunately, he has figured out that if he is in a place he is familiar with, he can remove himself from the situation.

Today, Bil was visiting up here.  We didn't see very much of him.  Normally he would sit in another room and watch the Weather Channel. But this time, he disappeared for most of the visit.  I think he went to the bedroom where he sleeps during these visits, and (somehow) occupied himself.

I can feel for him because I know he was looking forward to this time with the family that lives here in upstate New York.  Yet, he wasn't able to be near us.

I think there was just too much noise for him this time.

He did join us for meals, but we were hoping to involve him in meal preparation. We weren't able to.

He also joined us when we were getting ready to leave to go to our house. (He was staying with another family member).  He stood silent.

Again, although he is verbal, it is difficult for him to communicate with us.  I really wish I could give a penny for his thoughts.

The Missing in Action Sibling Survey

A couple of weeks ago I blogged about a New York Sibling Survey - and it still isn't live, as of today. 

Nor has the message my husband left on their phone on Independence Day been answered.  This doesn't surprise me.

What will we do? Probably wait a couple of more weeks and try again.

I really wonder why this survey, which was supposed to go "live" in June, is still missing in action.

Once again:  siblings get no respect?

No voice?

One reason I suppose I have to somehow keep on blogging.

Almost at 300

The 300th post is so close. In a way, this is a milestone, given that I don't post here all that regularly.  And with this post, we await a visit from Bil this weekend.  He will be coming with several other family members.

We don't know yet if he is going to stay with us. But the weather is going to be good, so Bil won't have to worry about his dreaded thunderstorms.

What will happen during the visit of the siblings?

Probably what happens in the other visits.

We sit and socialize with family and Bil sits wherever there is a TV and watches the Weather Channel.  We might as well be invisible, except for dinnertime.  At dinner, he eats and runs.

Family sometimes tries to get Bil to spend a little more time with us but if he does, you can tell he isn't very happy about it.Well, he might be, but that's not how he appears to behave.

This time around, we are going to try to get Bil to help some with the food preparation.  My sister in law had some success with that last time he came up here.  He is willing to do this as long as there is no cooking involved.  He is terrified of the microwave oven and, for that matter, the cookstove.

Last time he was here, it was because of Hurricane Irene.  Not good memories, and I hope he isn't anxious because of that.

We'll just have to see how it goes.

A Sister's Perspective

I wish my husband had written about Bil when they were both young.  I wonder what he would have said.

That's why I enjoyed this post by a teenager who has an older brother with autism. 

I remember my mother in law's hurt one time when she discussed her childrens' relationship with Bil when they were growing up.  I think she would have loved for them to take on some of her burden.  Keep in mind that in the 1970's my mother would not have had any support.  Not from her pediatrician, not from the schools, not from support groups.

She looked to her children.

And her children wanted to be children.  They wanted their lives.  I can sympathize greatly with my teenaged husband to be, trying to be a "normal" teenager and not the sibling of someone with autism.  By the time his family knew Bil had autism (keeping in mind it was NOT a common diagnosis in those days) my husband was already out of the house and living out of state.

Today, I'm glad to say, sibling have support. 

I encourage you to read the post I linked to.  I'd also love to see what she might say in 10 years.

And the other thing?  I hope that her Mom and Dad have made plans for her brother Marshall, and not left things up in the air the way my mother in law has.  Even to this day, in her 80's she still can not face the fact that she will leave her son behind. 

But that is a story for future posts.

The Role of the Weather Channel

Yesterday, I blogged a little about Bil's habit of,when visiting one of his relatives, just disappearing into the nearest room with a TV and watching the Weather Channel.  He comes out only for meals - and, may I add, he has a most uncanny ability to know when food is ready to be served. (makes you wonder what kind of cues he picks up on.)

I've always been interested in knowing: What happens if there is no Weather Channel?

My mother in law found out the other day.

She decided to visit a friend, and took Bil along.  The friend is someone Bil has known for years.  Bil has met her time and again. But I'm not sure Bil was ever to her house (or apartment, I am not sure).

Anyway this friend of the family does not have cable TV.  So Bil had to sit there.  The friend was a gracious host and served a very nice meal. (Have I mentioned how much Bil likes to eat?) I'm sure she is very kind to Bil as she always has been.  She knows the type of person Bil is.

So what happened without the Weather Channel?

Bil was very uncomfortable the whole time and couldn't wait to leave, or so my mother in law told my husband after the incident.

This isn't a "Rainman" situation where a show was coming on at a certain time, and Bil had to see it.  Although, on a trip we took with my mother in law and Bil once, I saw that in action.

I will blog about that another time.

Temple Grandin Talk

Temple Grandin gives a talk - about 16 minutes long - on various topics, such as our need to have all different kinds of minds working in our society.

She talks especially about the educational system and what they could be doing better. But there was also a section in her talk about how she, and other people with autism, think.

Oh, if I could only know what Bil is thinking.  His Medicaid Service Coordinator contacted me the other day.  He is taking some time off in the next month, and plans to come up here. (we already knew about that but the trip is still pretty up in the air).

You would never know it by watching Bil's behavior - he will disappear into the nearest room with a TV, turn on the "Weather Channel" and appear mainly for meals.  So what is he thinking?

Back to Ms. Grandin's talk.

She flashes a slide showing a "S" and a "H" - made up of little and big S's and H's.  Someone with autism and someone without autism may process this different, possibly seeing only the big letters or the small letters.

So we know that Bil processes a lot of information differently. But why in blazes would he be excited about a trip, and then sit around and watch TV all day?  Isn't it the same channel that he can get at home?

What is the point?  Oh Temple, I wish you could tell me.

It's a worthwhile talk, by the way - touching on a lot of different topics.  If you've seen the Temple Grandin movie originally shown on HBO, you've already seen some of this material.  If not, treat yourself to this talk.

If only Bil could give a talk.

Autism - Hiding in Plain Sight

As scary as Bil's future could be, at least one thing happened to him that didn't happen to many other people in their 50's, 60's, and 70's and beyond.

He was diagnosed. And, thanks to a family friend, he was diagnosed as an adult but before the age of 21.

If he hadn't been, the services he could have received in his native New York State would have been limited.

What about all the adults who were never diagnosed properly? It is a scary story, now being told by the LA Times.

They are adults with autism - hiding in plain sight.

Some have lived their entire adult lives in institutions, diagnosed as mentally ill. Schizophrenia is a favorite.  Also popular (the article uses this term) was the diagnosis of mental retardation.

Some are on the streets, homeless.

Some can function only thanks to friends - guardian angels as you will.

Some are finally diagnosed, after relatives are diagnosed.

It's hard to believe, in this day and age of the "autism epidemic" how these men and women fell through the cracks of our society but their world, and the world of Bil's childhood, was a very different place than the world of today.

The link above is to a harrowing story.

It should be a must read.  Read it, and be horrified.

I read it, and was thankful Bil did not suffer this fate.

Support for In Laws

I accidentally stumbled on a support organization for sibs of people with disabilities, located in New York City.  We live in upstate NY, not that close to NYC, but that may or may not matter.

This "NY Meetup" is a place to meet and network, apparently - it is not a place to vent, at least online.  There is even a button where you can use Facebook to find out if any of your Facebook friends are a member.

First, it got me to thinking about my mother in law, who had to "do it alone" in raising a child with autism back in the late 60's and early 70's.  There was absolutely no support for her.

She has never expressed any interest in networking with other Moms.  Perhaps, at her age, she doesn't think it is necesaary.

Next, it got me to thinking about male vs. female. My husband has never been that interested in support groups. And, interestingly, looking at the list of members - there are men, but it looks like the majority of members are women.

It may be a stereotype, but it seems (in my experience) that women in general like to have the support of other people in their particular situation, where men see themselves more as solitary problem solvers.  It's almost like asking for help is like asking for directions - not manly.

Not better or worse styles, but just....different.

And last but not least:  I felt a pang seeing another support organization for sibs.  There are organizations to support sibs, and organizations to support parents.  It's a familar pang -when will I ever find support from other in laws?

I can't be the only one in the situation of having an inlaw with a disability.

Maybe I'll (grin) have to make it up myself.

Anyone else out there married to someone who has a sib with a disability?

Casting my pebble into the waters.....

Real Human Love Exists in a Better Society While we Live with the Handicapped

A little over a year ago, I blogged about the plight of people with autism and their families in South Korea - a place where treatment of autism is still in the dark ages and families must endure shame - and worse.

Now, there is a South Korean marathoner with autism.  CNN did a feature on him not too long ago.  Slowly, attitudes about autism in South Korea are changing, partially due to this young man's accomplishments.

Why should we in the United States care?  Because what affects people with autism in any country affects us all, in some way.

I wasn't able to find that much more about this young runner via an internet search, but found that a 2005 film had been made on this young man.

I also found an article (in English) on a Japanese site called "Mindan News" about the movie.

One quote from the Japanese article, I think, said it all.

"Real human love exists in a better society while we live with the handicapped."

The translation may be a tad "politically incorrect" but, as the sister in law of a man with autism, I applaud it.

NY Sib Survey - A Glimmer of Hope?

Today, where I live in New York State, it is Independence Day for most of us.

But not for my brother in law, Bil.  Bil, who is in his 50's, could never live independently at this point in his life.  A former Medicaid Service Coordinator who worked with Bil for several years, told me that he most probably never could.

In a perfect world, there would be a place for Bil.  The sad thing is, I don't think he has a good handle on what is going to happen after his mother, who has been at his side nearly every day of his life (except for when she's had to be hospitalized) can no longer take care of him.

There are so few services that caring in laws can use to gain independence for the brother in laws they love.  Several months ago, in fact, we found ourselves in a type of Catch-22 situation with Bil.  He lost access to certain services because he had not used them. But the reason why he had not used them is because there was no one available to give the service.

His current Medicaid Service Coordinator is caring, but there is only so much she can do in the current climate of budget cuts. But, there may be some hope on the horizon.

Today, we found out about something called the NY Sib Survey. 

This is a call for brothers and sisters of those with developmental disabilities to complete an online survey, both to educate themselves, and for officials of New York State to learn more about their needs.

The only problem was - when I went to the survey site - the survey still wasn't there, a month after it was supposed to start.  The quoted Facebook site didn't seem to exist, either. Hmmm....another victim of budget cuts?

There was a phone number, so my husband left a message.  The number is an Ithaca phone number - Ithaca is about an hour away.

I hope someone will call back. If no one does - it will just be part of the same-old, same-old.

Coming out of Hiding

I've left this blog fallow for some four months, trying to come to a decision.  Should I continue? Or should I abandon this blog?  Abandoning it would be so easy.

But that's not how I'm made.  I like to finish what I've started.

July 1.  A new month.  A new half of the year.  A new start. 

Yes, I am going to restart this blog, I say a bit bravely (I hope).

 I changed the name of the blog, from "A Special Brother In Law" to "My Brother in Law with Autism". 

I still don't know if I am going to "go public" with this blog i.e. participate in blogging challenges.  At this point in time, I don't want to.

I sometimes vent my frustration here, and I continue to.  If anyone who knows me discovers this blog, so be it.  After a lot of thought, I have also come to that decision.  The Internet is not a place to hide.

Who knows, I might even open a Twitter account for this blog.

I thought about posting every day.  I don't think that will be realistic. 

I really hoped I would be able to teach others by example - being a help to the several families I know locally who have children or young adults with autism.  Well, I can't help them if I don't post.


But, I am still going nowhere fast. That much hasn't changed.  Bil's situation is about the same as it was back in February, and I am still soooooo frustrated about that.

I have a feeling, though, that this is going to change in the next few months.  And I want you to be along for that ride.

Psychological Help and Autism

I wonder if Bil heard the same thunder that we heard here in our upstate New York home yesterday.  I know people 60 miles from us heard it.

He's so scared of thunder.  He's so scared of so many things.

I don't know what the early thunder will mean.  There is a lot of folklore about there about thunder before leaves are growing out on the trees.  What I do know is what thunder means to Bil.  He is deathly afraid of thunder - in fact he is somewhat scared of just regular rain.  One time he wouldn't come up here when a family member was ailing, because he would not travel in the rain.

But this is the price we pay for our mild winter.  And one thing the mild winter has meant is that my mother in law hasn't lost power.  That happened both last winter and this summer (one time for about 4 days) - actually, twice this summer.

But Bil has dreaded storms long before the time when power failures lasted for days. (that didn't seem to happen in his childhood.)

I sometimes wonder if there is some kind of psychological help out there for Bil and his fears.  I don't know how talk therapy would work with a person who has severe communication impairments.  He is verbal, but can barely put two sentences together.

How does that work?

His thought processes are so foreign to me.  But the pain of his fears is real, and I wish there was help out there for him.  It might be something for me to try to investigate.

It's Been Such a Long Time....

Where have I been?

I wish I could say I've spent the time since the last time I posted working 24/7 for Bil's advocacy.
Truth is, I havec made some progress, but so much work remains to be done.  But the good news out of this is that I seem to have developed a good working relationship with Bil's MSC (Medicaid Service Coordinator).  She is actively taking an interest with Bil, trying to gain his trust, and even suggesting a service that might assist him.

I don't know if she will be able to get that service (budget cuts) but if she can, I think it would really benefit Bil and increase his independence.

Housing? No progress.

And with budget cuts....I fear there won't be any.

I hope that my husband and I can meet this MSC in the next few months.  When you've met someone, it's different (to me anyway) than just communicating by email.  You put a face with a name.

Let's see what happens.

Another Awesome Advocate

I was pleased to discover that local autism advocate Gary French was written up in the Syracuse newspaper.

He hoped to study law but had to care for and advocate for his child with autism and a seizure disorder.
He assists other parents in their advocacy efforts.

And now, he is taking the case of his daughter to the Supreme Court.

Never underestimate the power of a parent of a disabled child.

I wish him the best of luck.

Another Sib-There But For the Grace....

The other day, we met an individual who has not one, but three, siblings with disabilities of one type or another.

We are very lucky with Bil in many ways.  Right now at least there are no behavioral issues, which I fear will change once his mother, who has been the one constant in his life, is either deceased or no longer able to care for him.  Also, he is in relatively good health.

As for this other individual, the other siblings were placed in supported housings (I use this as a very general description) years ago.

We talked about one sibling in particular.  The sibling does not have autism, but rather a profound disability caused by a medical condition that is easily diagnosed and treated today.  It's a tragic situation.  The sibling is profoundly - shall we say, intellectually challenged - and lived in an institutional setting for many years.

When the sib was taken out of it, it was a very long adjustment period because of the high need for routine and structure.

Just like Bil.

The sib did make the adjustment though.  Just like Bil will have to when his time comes.  He will have no other choice. And I don't know how well we can prepare him in advance.

It's small comfort, I guess, to realize there are others in our shoes - people you would never suspect until you mention Bil to them.

The Disabled Caring for Aging Parents

At one time, in New York, Medicaid Service Coordinators (MSCs) had to visit with their clients once a month and do a home visit every 3 months (so, in other words, they saw their clients in the home setting three times a year).

Now, with budget cuts, the visits are 3 times a year, and only one visit needs to be in the client's home.  So, in other words, home visits have been cut from 4 times a year to once.

I don't know the last time Bil had a visit at his home, where he lives with my mother in law.  But we are worried about my mother in law's falls (several falls in the past year), and went ahead and made the medicaid service coordinator aware of it.  I wouldn't be surprised if Bil mentions the last fall to the MSC, where he was unable to get her up on her feet and (fortunately she was conscious) she was able to give Bil instructions on getting help for her.  Fortunately, all ended well.

The MSC offered to do the annual home visit now, rather than wait another four months, to make sure all looked OK.  That visit will take place in the near future.

I wonder what effect the decreased schedule of visits will make in the lives of the developmentally disabled overall in NY State.  Bil is far from the only disabled person living with aged parents.  In Bil's case, she is visited regularly by other relatives.  But that is not always the case.  And I can't believe other developmentally disabled individuals don't cope with trying, in some way, to help care for their elderly parents.

We without disabilities have enough problems being caretakers.  I feel for Bil and this situation that, basically, his mother has forced him into without being willing to let him go into supported housing.  But he has taken on this burden. He's incorporated some aspects of his caregiving into his daily routing-such as automatically going into the car trunk to take groceries or whatever into the house.

But for enough things, he still can't help unless he is constantly coached.  And he won't do anything with cooking at all - anything to do with cooking (the stove, the microwave, etc.) terrifies him.

We've made the MSC aware of this situation, and we'll see if she has any ideas after the home visit.  Her help, of course, can only extend to things that benefit Bil, and we realize that.  But another eye on the situation will help us.