Call and Wait

This is the part of advocacy that can be so aggrevating.

No callback from ARC.  No new information about Bil's new Medicaid service coordinator.  This is all part of the game.  You call.  They don't call back.  You call again.  It's like an old fashioned dance.

We can't play our part of the game right now, due to some personal circumstances.  And anyway, it's the beginning of a holiday weekend.  So it might not be worth the effort to try to call again tomorrow.

We may have to wait till next week to get more information. And who knows what budget cuts will take effect tomorrow. 

That's the other part of advocacy.  Learning to be assertive.  But patient.  Very patient.

New Medicaid Service Coordinator

The person we were supposed to call to get introduced to the new service coordinator was out today.  But we did find out a little more about the person who will be doing Bil's service coordination.

The person is young.  And has more than one child with autism.  My husband got the feeling she is pretty new at the game.

This could be good or bad.  Bad, in that she hasn't learned the true limits of what can be done.  But good, in that she may not have preconceived notions about how to advocate.  Good, in that she has experience with autism. And, she will be learning the service coordination game in the brave new world everyone with disabilities (and everyone in this country, really) will be living in - the brave new world of lowered expectations and budget cuts.

But bad, in that her "personal" experience is with children.  And maybe that will also cause her to identify more with parents than with siblings.

Sadly, it seems siblings and parents don't necessarily "get along".

Of course, I don't want to prejudge anyone.  So when I learn more, I will blog about it.

Budget Cuts and Housing for Those with Disabilities

I heard a story from my husband, who spoke to his mother today.

Bil is going to get a new Medicaid Service Coordinator.  The one he has now (who has to leave her position due to personal reasons) had two disabled people living with her under some kind of New York funded program.  She and her family cared for them, in a family setting.

This program is being discontinued due to budget cuts.  They are going to be losing their home placement.

Apparently, they will not be homeless - our understanding is, they will be moved into a group home situation.

I don't know if either of these adults have autism, and how quickly they had to move.

Imagine, if you were neurotypical, if this happened to you.  What a shock it would be.

For Bil, it would be a disaster.

A reminder of how fragile his living situation may be, once his mother is no longer able to care for him.

A Helen Keller Confession

Helen Keller has been dead over 40 years now.  Yet, her name still stands as one of the most remarkable people with disabilities in American history.

Today would have been her...oh, let's see,  141st birthday.

She would have been remarkable without also having multiple disabilities.  With those disabilities, her achievements are legend.  Writing 12 books, having some movies made about her.  Her birthplace in Alabama is a museum.

And, like some legends....there is a whole genre of jokes about her.  Helen Keller jokes.

And now, I have to make a confession.  I have laughed at Helen Keller jokes.  Even now, as an advocate for my disabled brother in law, I find some of them funny.  I guess I should apologize for it but, you know, it's a type of black humor.   Sometimes you just need to have an inappropriate laugh, before you go back to your advocacy.

I have no idea if Helen Keller found Helen Keller jokes funny.

I decided to look online, and (should I be shocked at this) there are a lot of websites featuring Helen Keller jokes.

 It's a tribute to a great woman (in a way) that over 40 years after her death, people can laugh at jokes using her name, and know what the jokes are takling about.

Although I'm not sure that Helen Keller's favorite color was velcro.

The Shame of Autism

Is autism shameful?

At one time (and not that long ago, as I can attest to as a daughter of a father with a disability) the answer was a definite "yes".

Although autism is no longer (I pray) a reason to keep a child "in the attic" in our country, that is not the case everywhere.

Some days ago,  I read an article about autism in South Korea.  It's like "deja vu all over again"  (see my recent post regarding the mentally disabled in China.)  While we have moved on here; people in South Korea who have family members with autism must deal with a stigma that may ruin chances of marriage of other family members.  These children are still hidden, with excuses of "late bloomer" or worse.
The article ends with a glimmer of hope that things are finally starting to change.  Let's hope so.

And with that....I really do need to return to posting about Bil.  Things have been quiet on the "Bil" front, but that won't last forever.  Due to my mother in law's injuries of earlier this year, I don't know if she (and Bil) will be coming up this summer.  We may not be going down until later in the year.  But I will try to organize my thoughts more, and try to get back to what I had meant this blog for in the first place.

Special Needs Blog

I promise, I will get back to blogging about Bil.

This will be another short post.  I have found a blog, written by a woman who has three special needs children.  It it awesome reading.  She wrote a post about Medicaid and special needs dentistry.

This woman GETS IT.

In my (ha ha) leasure time I will investigate her blog more.

The Way She Sees It

Temple Grandin.  A doorway into the heart of how people with autism think, feel, and experience.  Arguably, Ms. Grandin is the most "famous" person alive with autism.  She has a unique talent with animals, and a unique talent in being able to communicate well with the neurotypical community.

Sometimes I wish there were more books out there dealing with adults with autism. Every time I see a new book in the library (and - sadly, in a way - the libraries are buying more and more books on the topic) I pick it up and leaf through it, and hope there will be something in there about adults.

There almost never is.

I happened to find this book online:  The Way I See It by Temple Grandin.

This is not a new book, but is revised.  For whatever reason, I have seldom sought out actual books written by people with autism.  I don't know why that is.  Perhaps because they would already differ from Bil, who has major problems in communicating (although he is verbal).  And, you can't assume that all people on the autistic spectrum are the same.  That's why it's a spectrum.

Still, I wonder if this book would have information of interest to me.  Perhaps I will look for it, when the library reopens on Monday.

And, oh, yes.  The HBO movie about Temple Grandin is now on DVD.  I hope our local library gets it soon.  Funny how there is hardly any place here anymore to rent DVD's.  There's the Redbox but what's the chance of a Redbox having this movie?  I've resisted signing up for Netflix so far (and I don't have a modern TV, anyway).  So the library has become a major source of DVD's too.

I'll report, if I do get the book or movie, on what I find out.

The Blindness of Blindness

Instead of autism, I want to blog today about blindness.  No, not the visual disability, but the attitude of people towards those with disabilities.  (Throughout this post, I will use the term "blind" as that is the term I grew up with.)

There has always been a fear in the back of my mind that one day I would go blind.  I don't know at what point it started, but as long as I remember, I did not have good vision without glasses.  It wasn't noticed until I was 4 years old, when a friend of my mothers noticed that I would watch TV with my nose practically up against the glass.  Fortunately, my extreme nearsidedness was easily corrected with glasses.  But each year (this was back in the 1950's) my parents would get a mailing each summer, while school was out, offering services for the blind to me.  This was back before IDEA so I suspect what the mailings concerned was me going to a school for the blind.  In those days, that is how the school system dealt with blindness-send the children away.

At least in New York they were trying to educate them, which wasn't true for all disabilities.

As I grew up in New York City, I'm pretty sure that I would have ended up in a school for the blind in NYC.  But for people in upstate, the choice may have been a school in Batavia, NY.

By the time I was 11 my uncorrected vision would have been enough to classify me as legally blind, and I wore glasses full time.  All I have to do, to experience blindness, is take my glasses off.  How lucky I am that a low tech solution was available to me.

As I've blogged before, things were very different for people with disabilities in that day.  Some people are so nostalgic for the 40's and 50's but there was a lot of ugliness right underneath the surface.  And the blind people of that era paid a horrible price for that prejudice.  But I did not really understand it until a few days ago.

Someone I know (not well, but I know a very good friend of his) suffers from a medical condition, which left him blind about three years ago despite a last ditch surgery up in Syracuse, NY.  He retired (he had enough service in and he was in his early 60's anyway) from his job and ended up working at a place in downtown Binghamton, which (this may be unfair) may be on the order of a sheltered workshop.

What I did not know, until a few days ago, is that this man actually was born blind, spent most of his childhood blind, and went to that school for the blind in Batavia.  At some point in his growing up, a series of surgeries gave him a degree of vision, and he was able to work in the "usual" workplace. He's never seen well enough to drive, but that never stopped him.  He's a lovely person.  He has friends.  He has a good life.

But now he was in that place for the blind, you know, the place where the blind people work.   And he was - horrified.

So many of the people there - how do I put this delicately, in a "correct" way - have problems.  No, I don't mean visual problems.  I mean mental problems.  They are "off". They aren't right.  I've seen some of them on the bus when I ride to work in the morning.

How could that be?  Blindness is about the eyes not working, about the brain not getting vision signals from the eyes or not being able to process them right.  It is not a "mental health" condition.  Or is it?

He talked to his boss.  He had to understand.  He was struggling to adjust.

His boss told him, "You were fortunate.  Your parents were able to raise you with the advantages.  You weren't abused.  They did whatever they could for you.  (the school in Batavia, at least now, is private, so who knows how much it cost.  In those days there was no federal law guaranteeing a free, appropriate, PUBLIC education in the least restrictive environment.) You were surrounded with love.  They sought out doctors for you.  They wanted you to succeed.

Most of your co workers didn't have that growing up, his manager continued. 

At best, they were neglected.  At worse, they were abused.  They became warped.  That's why they have mental problems.  That's what happens when children aren't loved.  That's what happens when children with disabilities aren't accepted, aren't treasured for their other talents, when people can not see past the blindness and think they are stupid-or worse. (I won't even use the "R" word.)

This is how visual impairment changes a person.  They aren't born like that.  It comes from the attitudes of their society, their family, from the people they interact with.  It isn't from their lack of vision.

My acquaintance understands.  He is trying his best to adjust and accept.  He "doesn't" have to work, but he wants to make some money on the side, and this is the path he has chosen to get that extra money.

What a waste.

And again, it makes me think of Bil, of his suffering when he was younger.  If he hadn't been in a family that loved him, who knows the path he may be walking now.

Plight of the Mentally Disabled in China

Just a short post tonight.  There have been a couple of articles recently on a blog called Seeing Red in China, which talks about various issues in China.  Recently there have been a couple of posts concerning the physical and mentally disabled of China.

Apparently, things are starting to improve for the physically disabled. But, conditions are horrible, and not changing, for the mentally disabled, including people with autism.  (earlier this year, I had posted on the situation in Korea.  This seems to be even worse.)

I can't bring myself to read any of the stories in the links, but warning:  the stories, which include murder for profit, are pretty disgusting.

This needs to be publicized.  If you read this, please spread the word.

Cuts in BC Transit

For many disabled people, public transportation is a must. 

I have heard through the grapevine of pending cuts in BC Transit, the mass transit covering Broome County, New York.
-Sunday service will be cut out entirely shortly
-not immediately, but in the near future, all night service will be cut, with the final buses running at 6pm

Express buses will be cut on the #35 line, which is probably the longest line in the system.

Disabled people have few alternatives, except taxis, which are beyond the budget of many working poor.

If Bil was living up here, I would be concerned. And who knows, he may have to move up here one day.

I am aware that public mass transit is being cut in many areas. It's a vicious circle, and disabled people, and the working poor as usual, bear the brunt of cuts.

The End of the Challenge

For various reasons, I have had to cut my personal "post every day in June" challenge short.

However, I will continue to post as I can.

Fortunately, the reasons have nothing to do with Bil.  But still....that sword is dangling above my head...and one day the thread will snap.  I still wish we could be more proactive, but I fear at this point that nothing will happen until our family is in an emergency situation.

Happy Father's Day to Special Needs Parents

A very simple blog today, Fathers Day.

Happy Fathers Day to all fathers of children with disabilities!  I wanted to share two blog posts with you.

The first, "An Autism Dad on Feelings and Manhood"  I found this one on Twitter.
 
And secondly, thanks to "Five Minutes for SpecialNeeds.com" for this one

This is a simple and very moving tribute to a father, and to the mother who wrote it.

Fathers especially get a bad rap.  They have a reputation for checking out, either mentally or physically, when a child is born to them who isn't exactly perfect.

Sadly, I've known situations where this happens.  But I also know situations where the fathers hang in there.  Like my son's friend, who has Asperger Syndrome.  He's a young adult now, newly graduated from a one year program at SUNY Delhi and his father has been a constant presence in his life.

So, happy Fathers Day to the fathers who hang in there.  And, the mothers, like my mother in law, and Bil's mother, who have hung in there, too.

Local Senator Speaks on NY Autism Bill

I don't like to become political but sometime you have to.

Sharing a link showing our state senator speaking out for an Autism bill being proposed in our state legislature.
As he says...long overdue.

The NY Senate has just given final legislative approval to this bill:

"The bill (S.4005A), sponsored by Senator Charles J. Fuschillo, Jr. (R, Merrick), would save tens of thousands of dollars in out-of-pocket expenses spent by families caring for individuals with autism and address insurance companies’ refusal to cover costs for autism treatments and therapies."

Yes...it's long overdue.

Ouch

I fell and hurt myself.  Nothing broken, but I got a bit shook up, have a split lip and sore shoulder and hand, and it hurts.

So, of course, my thoughts turn to my mother in law and the falls she has taken, and it's like living by herself.  I think she was expecting to have Bil as a help, but that isn't what ended up happening - except when she asked him directly, and only in a very basic way.

So I am very lucky, and it could have been worse.  I'm not caretaking for a developmentally disabled adult.  I can take it easy.  I can afford the damage to items I was wearing, that got gorged/scratched up when I fell.

Hopefully I will be in the mood to resume blogging in the next couple of days or so.

A Humbling Walk

I walked in an autism walk a couple of weeks ago, and met a number of advocates working in the autism community.  Many of the walkers were parents.  But, as far as I know, none were parents of a murdered child.


This story out of Iowa is a very humbling story.

The fact that these parents, in tribute to their murdered daughter, would embark on this type of walk, is mind boggling. 

Every time you lose your faith in humanity, something like this restores it.

Dog Bless America

The other day I blogged about service dogs and people with autism....

What about service dogs for veterans?  This is where an organization called Dog Bless America comes in.

This is one of those "we get enough people to like us on Facebook, we will....." kind of things.  Normally it is annoying to me but this is for a worthy cause.

Please consider liking them on Facebook.  And, spread the word.

Working and Autism

I picked up this story about a blind musician with autism thanks to Twitter.

Besides the story of talent and autism, there was another statistic in this story.  I quote:

"According to Autism NOW: The National Autism Resource and Information Center, an estimated 24 percent of people with cognitive disabilities aged 16 to 64 work — and many of those workers keep part-time hours, Brusatori said."

Well....Bil has been working, for a sheltered workshop, over 25 years.  He only works part time.  The last I knew, he was making less than minimum wage.  And yet, his income gets counted in (for example) my mother in law's eligibility (or not) for HEAP.  It seems so unfair.

It doesn't surprise me that a minority of people with cognitive disabilities (I realize not everyone in this statistic has autism) work.  There just aren't many opportunites.

Unless you have a major talent like the man in that story, it is hard for anyone with autism to get any kind of meaningful work.

Bil will never be able to support himself, and it sometimes seems that the entire Medicaid system is geared to keeping people with disabilities in their place - poverty.

It could be worse though-as I blog about tomorrow.

Chocolate - Friend or Foe?

Bil loves chocolate.  There is just one problem.  It isn't good for him.

Bil uses his small salary paid by the sheltered workshop to buy goodies for himself.  And,he also enjoys buying something to serve company.

He is fortunate, he had a mother who enjoyed entertaining.  Now, she doesn't do it that much but she loves to have company.  Nowadays, the company will bring a lot of the food.  But Bil still enjoys contributing something.  He used to buy his chocolate at CVS but when the CVS in his local mall closed, he switched to Wal-Mart.

Is it a desire to share?  Or something about social behavior and his mother that he models?  I don't think it really matters.

One thing I don't see that often is Bil enjoying cookies.  So I have never observed if he likes Oreos.  (come to think of it, I've never seen my mother in law eat Oreos).  If he does, though, I bet that he enjoys the latest addition to the Oreo menu - Berry Burst Ice Cream.  Bil loves fruit flavored soda, so I wonder if he would get into the berry flavor. 

But I am not going to tempt fate.  As much as I would love to bring chocolate to Bil, I know that his mother says that it aggravates allergies.  And, there is the extra weight Bil is carrying.  And sometimes, as much as we want to believe in "people first", sometimes we just have to save our loved ones from themselves.

One day, I am afraid we are going to have to deal with this head on - however we can encourage a man with autism to diet.

Dogs for Autism

A brief post this evening.

I took a look on Twitter to see if there is a "spectrum" presence there.  I found lot of the major organizations advocating for autism have presence on Twitter.  Jenny McCarthy (or someone claiming to be here) was there.  As are some people saying they have Asperger Syndrome. (from those with Asperger Syndrome that I know, that actually comes as no surprise.  The surprise would be finding people like Bil.)

I also found an organization called Dogs for Autism.  Fascinating.  I went to their website to find out more.

What a wonderful idea - service dogs for autism.  I found is that service dogs are a lot more than the stereotype of the German Shepard helping the blind. Besides the blind, service dogs assist people who can't hear, and people who suffer from seizures. 

This organization has been around for some 20 years, although they only started working with training dogs to help those with autism in the past few years.

The loveliest part?  You can make a contribution in the name of a beloved dog in your life who has passed on.

I wish I could say (as an aside) that Bil loves dogs.  But, my mother in law's family never had a dog as a pet.  They had a cat but Bil never interacted with the pet.  But I bet there are a lot of people with autism who love dogs.

But other than that, I spent a few minutes browsing people who came up when I typed in "Adults with Autism".  Right now I'm not interested in following any more people on Twitter but when I get my Twitterlegs, I will most likely investigate this topic more.

Autism-an Evolutionary Advantage

This article I picked up from someone I follow on Twitter has the viewpoint that autism may have provided our species with an evolutionary advantage. 

Never mind evolution (whether or not you think it is a valid explanation for how we all got here) but you can almost see it today.

Consider "the geek".    And the prevalance of Asperger Syndrome in certain areas of the country heavy in technology industry that has been reported in media.  Coincidence?  Or, are we seeing a mini-evolutionary process in our very own culture?

Just think, too.  What if we do make contact with an extraterrestrial species - and they turn out to be Vulcan-like? (noting that the stoic/logical nature of the Star Trek Vulcans was cultural, not genetic.)  Think about if real Vulcans came to our planet tomorrow.

Who better than people with Asperger Syndrome to meet with them.

(I could be thinking here that if the aliens love weather, or the New York Mets, that Bil might be our ideal first contact person.  But maybe not.)

Or, lets say conditions change and we are in a world where constant social interaction isn't as important as it is now, people with autism, including Bil, will flourish.

But, the way we are going, as much as geeks are needed, I don't know if people like Bil will flourish in our new world of social networking.

It really is something to think about.

Now that I am on Twitter, I am going to investigate (when I have time) people on the autistic spectrum who are active on Twitter.  This should be....most interesting.

Fathers and Autism - Fathers and Support

Fathers get a bad rap.  I personally know one person who gave birth to a child with disabilities, and the father was totally disengaged.  He ended up leaving the marriage officially a few years later, but was absent without leave way before that.

I also don't remember my father in law being engaged much with Bil.  Nor did he make any effort (that I know of) in Bil's future planning.  He left only minimal life insurance when he died, and it wasn't because he couldn't afford the premiums.

But there are certainly engaged fathers out there.  I remember, a few years back, meeting the father of a 4 year old child with Angelman Syndrome and he was, at least in the setting I saw him, quite involved.

Therefore, I was pleased to see that the Family Resource Network is now sponsoring a Father's Forum  "for male caregivers, facilitated by male caregivers." 

So much support out there seems geared to the mother....I applaud this.

Now, if there could be more support geared to the "in law"...the person in a marriage not the sibling...another sore point I will talk about another time.

Learning to use Public Transportation?

Being able to drive is such an important part of American life.  To many with autism, including what I suspect is a fair number of those with Asperger Syndrome, it is almost impossible.  So therefore, enter public transportation.

I am not sure Bil has ever been exposed to public transportation.  He has had (up to now) his mother to drive him.   There is little public transportation where he lives.  The ARC he receives services from provides transportation to and from his sheltered workshop job.

What if Bil had to live with us one day?  Would he ever be able to use public transportation?

I do use public transportation, and the quality in our area (buses only) is somewhat spotty.  But we live within walking distance of a major line in this area.  For Bil to learn to use public transportation:

1.  He would have to know where to catch the bus and where to get off.  I think Bil could learn that fairly quickly, especially if he was using the bus only for one or two destinations.

2.  In our area, (with few exceptions), the buses use a "pulse" system i.e. the buses go to one central area (downtown) you get off, you find the bus you want to transfer to.  Again, I think Bil could handle this.

3.  To use the bus, you must have either exact change or a bus pass.  You must swipe the pass and it must register before you leave the boarding area and sit.  Again, with some repetition, I think Bil could use this.

4.  To signal the driver to let you off, you need to pull a cord.  Again, I think Bil could learn this.  On some buses, depending on where you sit, you might have to press a strip.  Having two alternate methods might be a bit tougher.

But, could he put all the actions together?

Where I am not sure Bil could learn is the social interaction.

1.  I think Bil would want to sit in the same place every time.  That isn't possible, especially on the more crowded routes/times.  I think that would be a real problem.  He has a rough time adjusting to small things like having to purchase a new radio.

2.  What if the bus driver had to engage him in conversation, such as if the pass didn't work right? (that does happen).  I think that would totally throw Bil "for a loop".

And, what would happen if the bus wasn't working right or broke down?  That has happened several times to me, so it is a possibility.  More than once the bus has stopped and the driver indicates everyone must get off.  They do this when there is a bus to pick us all up.  We have to walk to the new bus, get on, and in that situation you don't pay another fare.  I think that would totally throw Bil.

It will be most interesting if we ever have to train Bil to use the bus (assuming he ends up living in this area.)  I sure hope there are trained professionals to help us with this.

I Cheated But There's a Good Reason

I am actually writing this post on 6/9.  But I have a good reason - to keep the Autism Blogging Self-Challenge alive.

I had internet problems.  Really.  I was offline for almost all of June 8 and much of June 9.  And even now, for some reason, the internet connection is very slow.

But I will prevail.  More tomorrow....er, today.

People First Waiver

I had blogged before about the Medicaid Service Coordinator I met at the Greater Binghamton autism walk on Saturday.  She couldn't predict what the scheduled budget cuts would bring, but mentioned we might soon have a new Medicaid Waiver.

I found this online.

It's pretty heavy duty reading (what things related to government aren't?) and I'll have to wade through it when I have some more time.

In the meantime - I wonder - will this help with getting affordable and decent medical coverage? (Bil's current medical doctor, his mother's, does not accept Medicaid.) Will it speed up the various waiting lists for housing for adults with developmental disability (so mothers in their 80's don't have to worry about taking care of their children?  Although, in all fairness, Bil's mother does it because she wants to-she has resisted having him moved into a separate housing placement.)  And, will a new waiver really help?

People First - a nice buzzword, but doesn't always work -( especially if the person in question is not capable of making decisions because they can't understand the issues and the consequences.)

I'll be curious about what I can find about this proposed waiver.

People First

At the autism walk Saturday, a Medicaid Service Coordinator alerted me to changes in the NY Medicaid waiver system.  I'm glad she did because we have heard nothing about this from Bil's Medicaid Service provider (Putnam ARC)  They may have alerted Bil's mother, but no matter how many times we ask to be kept "in the loop"-well, we aren't.

Frustrating.

But now I have something to read.

The 30 Day Challenge

I am into day 6 of a 30 day challenge.

The challenge:  blog everyday, for 30 days straight.

With this, I am going to be reviewing my reasons for blogging on the subject of Bil, and I may be changing the direction of this blog slightly.  I really don't have enough to write about my brother in law, because (right now) we just don't see him every day.  So, I may want to be changing the focus of this blog to those in general aging on the austistic spectrum.

I see a need for this, especially after attending the autism march I attended yesterday.  The children born at the beginning of this "autism epidemic" are fast approaching (if not already approached) adulthood.  And, if parents do not prepare properly, they are going to have a nasty surprise.

Many services disappear at either age 18 or 21.  Not just the right to a free, appropriate public education in the least restrictive setting.

Guardianship or some other legal form of helping the individual adult may be necessary. (I am not a lawyer or legal person, but only a layman on this subject.  Actually, it is a subject I need to learn more about myself.)

So, I will reevaluate as I take this challenge.  No, I'm not in any particular contest or competition.  Just trying to challenge myself as an advocate.  I've been a little focused elsewhere due to things going on in my life, and if I don't get back to my "roots" I am going to be bitten in the you-know-where, big time.

Greater Binghamton Walk for Autism

I did it.  We walked the walk.  You may have seen me and my husband walking down Main Street in Endwell today.

My husband and I decided to participate, and we are so glad we did.  We ended up meeting up with, and speaking for a while to, an advocate we had not seen in many years.  This woman helped another family member, one who lives locally, so tremendously.  I've never thanked her properly (and I was so busy catching up with her, that I still didn't thank her!)

I saw her son, now a teenager.  (he was a lot smaller the last time I saw him!)  I saw the teenage son of another advocate who had helped us after the first advocate had gone on to another job.  They grow so quickly.  Time flies...

Yes, the emphasis was on children.  Yes, there was someone selling "I Love a Child With Autism" T-Shirts. 

To the parents wearing those shirts I would like to say this:

"I wish I had better news for you, but the struggle never ends.  Sometimes it gets better.  Sometimes it just gets different.   Please, please, prepare for that day when your child or children grow up.  Please, don't forget the child with autism. If you have other children, don't forget them, either.  Please include them in your planning.  Please communicate with them honestly.  Because you will not be in the lives of your children with autism forever.  But siblings will be forever."

Thoughts on an Autism Walk

This Saturday (actually, that's tomorrow!) is the 2nd annual Greater Binghamton Walk for Autism, to be held in Endwell, NY.

There seems to be very little information about this locally.  I saw a poster but that's all the publicity this seems to have.  Saturday, register at 11 for $10, walk at noon.

Just show up at 11am tomorrow and register?  I'm really unsure if I want to participate in this.  I know nothing about the organization that seems to be sponsoring it.  In fact, I'm not even sure of exactly where the money is going.  And, I'm not sure I would really belong there.  I'm a sister in law, not a parent, and I have a feeling it is going to be mostly parents (or grandparents) of younger children that are going to show up.

And that's when I start feeling so different.  Feeling like I don't belong. Feeling like I am alone in this.

There are support groups for parents.  For siblings. But, as far as I know, nothing for in-laws.  And we do matter.

Bil predates the autism epidemic. Bil is in his 50's.  His world is so different from the world of autism today.  He has little in common with those young children, it seems, and I don't know if I would have anything in common with those parents.

It's a shame, that sometimes siblings and parents are at odds about the future of their children/siblings with autism.  Parents are coming from one place and the person with autism's siblings a totally different place.  Some of that is probably generation gap.  Maybe it's also like we are groping different parts of the elephant.

Maybe I shouldn't feel this way, but I do.  I can admire my mother in law but sometimes - many times it seems-we just aren't on the same page.  And I'm apart from the siblings, too.  Unlike them, I chose this.


So, I may-or may not-walk tomorrow.

If I walk, it will be with a lot of conflicted feelings.

How About Those Mets!

During our recent stay, Bil came up from his room as his mother and we sat down to breakfast.

He has a radar for meals (always has had the ability to sense when a meal is about to be served.)  You rarely have to call him.

Usually, Bil will have little to say.  He will stay until he finishes eating (although I know he is observing everything around him), sometimes smiling to himself.  Then he will wordlessly get up and leave.  Never tries to help clear the table.  His mother had never insisted on it while she was younger, and she admitted to me not that long ago that it was "more trouble than it was worth" to try to get him to help.  I don't try to insist, either, although I have a nagging feeling that I should try more.

But today was a little different.

The first thing he did was update his mother on how the New York Mets did the night before.  She's a Mets fan also.   But in all honesty I think he would update anyone who was there, whether or not they care about the Mets.  And it seems lately, he's more and more eager to do the updating.

Bil has several "special interests" and the Mets are one of them.

With him, it remains conversation and watching on TV.  Bil's had chances (through his local ARC) to go to Mets games, and he never wants to.  Sort of like his love affair with the weather. Great if it stays on the Weather Channel. If it rains, or thunders near him - he doesn't like that at all.

Let's go Mets!

The Longest Conversation

Sunday, I saw Bil engage in the longest sustained conversation I've ever witnessed between him and someone else (in this case, Bil's brother).

It was only a couple of minutes.  But it's a sign that Bil is trying to...change? Grow?  I still can't put my finger on it.  It's like the interest in food I mentioned yesterday, which I will come back to again (hopefully) soon.

The subject matter was simple.  Bil wanted to know if his brother was "going out".   I think what Bil wanted was to be taken somewhere.  It seems (as part of this change) that he wants to be out and about more and more-but on his terms.  I think his mother's increasing fraility may be causing that. She just can't drop everything and take him somewhere.  Mobility has been a very big issue for her for most of this year-and will be for the rest of her life.

So what was special about the request?  Well, usually Bil talks in one or two sentences (if that). And then withdraws into himself.

This time the words just gushed out. 

But, we had a full slate of things to do for Bil's Mom, and my husband had to tell him "no, we aren't going out." (later on, we needed to run an errand, and he never came out of his room to ask if we could take him.)


He seemed to accept the "no" with good grace.

Was this just one time?  Or are we starting to see some kind of change/growth?