Monday, December 31, 2012

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.

Sunday, December 30, 2012

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.

Saturday, December 29, 2012

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?


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?

Thursday, December 27, 2012

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.

Wednesday, December 26, 2012

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.

Tuesday, December 25, 2012

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.

Monday, December 24, 2012

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 or by mail. You can mail your
check to

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


Don Meyer
Director, Sibling Support Project
A Kindering Center program
6512 23rd Ave NW, #322
Seattle, WA 98117 USA
Sibling Support Project Website <>
Our training calendar <>
Our bookstore <>
New! SibTeen! <>
Our brothers, our sisters, ourselves

Sunday, December 23, 2012

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.

Friday, December 21, 2012

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.

Monday, December 17, 2012

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.

Saturday, December 1, 2012

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.