Bil and Computers

Bil does not use the computer.  I once encouraged him to go online with me, several years ago.  I showed him the Weather Channel site, hoping it would spark interest.  Although weather is a special interest for him, he wasn't interested in any type of interaction online. 

Seems there is quite an online community of people with autism-writing blogs, journals, you name it.  Many people with autism, apparently, take to the very visual media of the Internet, with little need to worry about committing a faux pas.

I wonder if Bil has any interest in communicating like that-all I had shown him was websites.

I don't know if it is worth it to try or not, in all honesty.  It will be enough trying to work our way through all the other issues we will have to face with him (and are starting to face.)  I don't know where to start.  Or if it is worth starting.  The one computer in Mil's house is upstairs next to her bedroom.  It is territory he does not enter unless she asks him to help i.e. bring up laundry or do some other chore for her.

Then it is right back to his little room in the finished basement.  If we bought him a computer I fear it would be a new object.  We've seen how he reacts just when an old beloved clock radio or air conditioner dies and we have to replace it.  It's a major event.  So....maybe not.

We will be seeing Bil later this month, when he comes up to visit with him Mom and sister in law.  And maybe he'll be staying with his other brother next year if my mil visits family in Florida.  Maybe I will bring my laptop to one of these and test the waters.

Is it bad to want to broaden his horizons?  Is it some kind of judgment at the hands of a well meaning neurotypical in law?  Or...is there someone trapped inside that mostly expressionless shell, begging to be let out and be heard?  And no one hears because we don't know how to listen?

Maybe we will never know.

Riding the Pee Bus

Twice in the past week I have ridden a Broome County Transit bus that reeked of pee.

Budget cuts?

The 2nd time, it wasn't my imagination, as another passenger tried to open windows and ended up spraying hair product into the air in an attempt to mask the smell.  Then several of the passengers got into a discussion about it.

Here in the Triple Cities of Upstate NY, the majority of riders of the buses are either elderly, disabled or poor (or, more than one of these.)

They don't deserve this.  No one deserves this.  I can think of Bil, perhaps living up here one day, needing to ride a bus that smells like pee.

I hope someone looks into it soon.

The end of driving?

Not Bil (who has never been able to learn to drive.)  But my mother in law.

Bil will be up here (with his Mom) sometime in August, for a couple of days.  They will be staying at my brother in law's home about a 15 minute drive from here.

At some point we have to try to stop tap dancing around the subject of what Bil's living arrangements are going to be starting in the near future.  My mil's mobility continues to be an issue, combined with a couple of recent "incidents" (fortunately, both on her property) involving driving-one time, driving into the garage except the door wasn't up.  Both times she was "distracted".  That seems to be her explanation for her falls, and other 'incidents", too.

I'm praying she isn't distracted on the road next time.  With Bil in the car (or not.)

My sister in law has already raised the issue of "can Mom continue to drive?"

If she has to give up the keys (apart from how tramautic it is going to be) we have to face the fact that there is very little public transportation where she lives.  Bil wants his outings.  She wants to maintain her independence.  She wants Bil to continue to live with her, and he does help her (carrying packages, etc.) if she asks-which she does do more and more.

Both have to be able to get to shopping, to appointments.  There may be some options through the Office for Aging, or other government agencies.

It's going to be a big change in his routine, however this happens.

We can't talk to Bil's Medicaid service coordinator (MSC) about this (before talking to my mil) because if you mention anything about any subject to her, she is immediately on the phone to my mother in law.  You would think she was mil's coordinator and not Bil's.

The driving issue (and what will happen to Bil housing wise) is a huge elephant in the room, and, folks, the elephant is getting ready to burst through the walls.

And where is my role in this?

Right now it's just making sure, as best we can (helping my brother in law and his wife), that we can make this a good visit for her.  And trying to be supportive.  But I am getting more and more frustrated.

Another Pretty Neat Autism Book

Another book I picked up at the library that I would like to mention- "The Autism Mom's Survival Guide" (for dads, too!) by Susan Senator.  The subtitle is "Creating Balanced and Happy Life while Raising a Child with Autism". If only my in laws had had a book like this; it would have made my mother in law's life so much easier.

Susan Senator is worth hearing out for a number of reasons.
First,she writes a heck of a blog.

Second:  she has information on life when the person with autism has grown up.  Few books have that.

There is a short chapter at the back called "Looking toward the Future" with various thoughts and resources regarding adults with autism.  Some of it is about her own son.  Also, Ms. Senator mentioned various websites which allow ASD adults to communicate in their own (so to speak) voice.  One would think computers would be a heavensend for those who wish to communicate but are non verbal, and sure enough, for some it has been that heavensend.

Not Bil, though. (for the record he is verbal, although his verbal communication is somewhat limited.)


Also, this book concentrates on a lot of topics you will not find in any other book on autism, including keeping the relationship between a married couple alive.  And, how autism moms and dads keep their sanity.

Finally, a help to all those with children who have special needs (no matter what they may be) is a section on how to deal with a world that can be very noncompassionate.  We are fortunate right now with Bil; he does not act out in public. (that wasn't the case when he was young!).  However, we have never been in a true circumstance where Bil has to do something he doesn't want to do, and he must do it.  We've always been able to negotiate.

I'm dreading the day when this will come up.  In the wrong situation, it could lead to tragic consequences for Bil.


I am going to explore some of her ideas (if I can remember to write them down!) in my "spare time".

Books for Inspiration Part 1

It's sad in a way, but our local libraries are stocking more and more books about autism, Aspergers, and other spectrum disorders, plus books written by parents and even people on the spectrum themselves.

The only thing I can wish for is a book by someone in my situation.  Hmm, maybe I should be the one writing that.

But seriously, I will report now and again on some books that have struck me one way or the other.

Today I wnt to mention "The Best Kind of Different" by Shonda Schilling.  Keep in mind that here in Yankee country it is against the law to even think about the Red Sox....no wait, her husband Curt retired.  Still, it was an act of bravery to stock that book.  Kudos to the Broome County Library.

Seriously....

This book rang so true.  I don't want to get into particulars but I have "been there and done that" on a different (much different level)...so I was right there pulling with Shonda as she struggled with raising her "different" son.   Eventually Shonda listened to her Inner Mom (never ignore your Inner Mom by the way-it is always right) and got her son tested.  In a way, she was the last to know....it was so obvious....

The results:  Aspergers.  In a house already bursting with ADHD (two other children, and her husband) this was just the icing on the cake.  (by the way, Shonda:  YOU ROCK!)

A lot of people would do well to read this book.  Considering how common autism is becoming, a lot of people had better get educated, and fast. 

Red Sox fan or not, this book is worth reading, on a lot of levels.  From her experiences in realizing that her Aspie son may not be cut out for sports (and why this is the case is a national shame, in my opinion), from her disregarding advice from her neurologist (learning to trust the Inner Mom once again), from her finally seeking out help (it's a sign of strength, folks...I can tell you that first hand, too) to bluntly speaking about her guilt in not getting her son tested earlier....this is one gem of a book.

And Shonda, if you ever want to know what happens on the other side of puberty-that's going to be a whole other story.  Please write another book, and let us know.  We want to know!

Why the Trip Worked and Didn't Work

We are back from our trip with Bil and my mother in law (and another relative) to the Jersey shore to be at a wedding.  All things considered, the trip went well.  Here are the highlights of what went well and what could have been better:

1.  A local [NJ] relative visited the motel room in advance and gave us a heads up on what it looked like.

2.  There was an Olive Garden nearby, which Bil likes and Mom promised Bil we would eat there - of course that meant we could not try a couple of local restaurants that sounded interesting, but it was a small price to pay.  (the restaurant experience wasn't perfect though-see below).

3.  Bil knew he was going to have his own area (we purposely booked a suite) so he had his own space.  The last time Mom and Bil (without us) stayed in a motel he didn't have a defined room area but had to share and it didn't work well.  Also  the local relative gave us a heads up that the bedroom area was really small.  On the other hand, the bathroom was in the bedroom, which I had never seen before-it is normally off the "living room".  That meant when us middle aged and elderly ladies had to use the bathroom in the middle of the night, Bil wasn't bothered.

4.  The wedding did not have a screechingly loud band - in fact the music the dj (no band) played was a bit subdued.   Less noise, better for Bil.
Bil looked a bit glazed and (as usual) stayed off by himself.  One day I may find out just what he gets out of these kind of public events - I am sure he is observing every little detail but what he does with that information we may never know.

Here's what didn't work well.

1.  I think I mentioned that the motel would not give us a "handicapped" room at the wedding guest rate.  So we booked a non handicapped room and Mom's knees bothered her greatly because of the bathroom setup.  On the other hand she could have bought her raised toilet seat.  I don't know that she meant to but we left it behind.

2.  We were sat down at the Olive Garden next to a table with three young children, who did what three young children do-make noise.  I didn't have issues with the parents but I think Bil was greatly bothered by the noise.  He barely picked at his food.  Mom asked if he was having gas. (he does suffer from some digestional problems-common in people with autism.)  My husband asked Bil if he was anxious and Bil got a really funny look on his face but shook his head "no".  Of course this begs the question if Bil knows what being "anxious" is.  I suggested we get his food wrapped and he did eat in the room later.  So this turned out to be a minor issue.

All in all the trip worked better than I expected.  We could have perhaps done some more advocacy work with the motel - I still don't know what they did (not offering a handicapped room at the bulk rate for guests of the wedding) was legal or not.  But Bil having his own space was definitely the key to success.

Support our Military-End Wait Lists

Support our military. Make it more than just empty words.

There is a wonderful video on You Tube about waiting lists.

Should you spend the 5 minutes to look at it?  Yes.  If, for no other reason than to support our military.  I would bet that, disproportionally, they bear this burden more than the rest of us.  But all families with disabled members (military or not) do.

I belonged, for several years, to a troop support organization (now disbanded).  We sent monthly "care packages" to troops in both Iraq and Afghanistan.   Our head person got to know a lot of the troops when they came home. She even went down to Alabama to visit some families (for whatever reason, at one point we were supplying several National Guard and other military units from Alabama.)

One of these families had a teenage son with severe disabilities.

The sad and sorry truth was that every time they had to move due to a duty station change he went down to the bottom of the new state's list.  Again and again and again.  And, he was at the mercy of each new state for educational services.  Some may have been good.  My guess was, a lot weren't.  It was the luck of the draw.

Why should that be for military families whose members are risking their lives every day?
 And better yet: 
Why should it be for ANYONE?

International Sibling Conference - Are Spouses of Siblings Family?

A couple of Internet groups I belong to forwarded me this information about an International Sibling Conference August 7 and 8 in Greenwich, CT.

The purpose of the conference is explained in this link.

To quote further, from the website:

The International Sibling Conference is the perfect opportunity for you to get your questions answered and engage in meaningful conversation with people similar to yourself. This conference serves many purposes: to give professionals an opportunity to hear experts in the field of family dynamics and experience workshops put on by siblings; to give parents an opportunity to focus on their child/children who are not disabled; to give partners of adults with disabilities an opportunity to focus on the impact that the disability has had on their relationships. 

Hurrah! 

It is a pity that my husband does not reach out in this way.  Is this a part of the male makeup, not to want to ask for directions or support?  I sometimes wonder.  If the sibling had been mine, I think I would have been right there especially as this isn't too far a drive from where my mother in law lives.

The only thing that is "too bad" about this is the pricing structure.  It is a bit hard to understand (they even have someone to contact if you have doubts.)  I'd like to say this to the conference organizers:

Could you reconsider your pricing structure.
We siblings [and "loved ones" of siblings] have enough on our minds in our daily challenges to figure out how much money to send in.
This pricing structure also seems to put loved ones at a disadvantage.  As the wife of a sibling, I take personal offense that I don't "count" as family and must pay extra.  True, I'm not a sibling.  But please don't tell me that after 30 plus years of marriage to one, that I am not a true part of his family.

In addition, I have  been up front arm and arm with my husband in trying to make Bil's life better, to try to find services for him.  And I don't think I am the only one. I think I am far from the only one!

You should be rewarding those people in siblings lives who try to support, not trying to charge extra for them.

Petty?  I don't think so.

Other than that-I think the conference is a wonderful idea.  Support is always good.  I hope your conference is a success!

Where are the Breadcrumbs?

Sometimes I feel so guilty I couldn't be more like our local super-advocate for people with autism, Sally Colletti.
A tireless fighter for people with autism (including her son), Sally continued to fight all during her fight with breast cancer.
 
What if Bil was her relative?  Well, he'd be hooked up to all the right programs, he'd be making progress, there would be some kind of miracle.

Or not.  I am no Sally Colletti.  I am just....tired.

Superwoman I am not.  Why do I feel guilty for feeling so tired sometimes?  I even feel I've lost my way with this blog.  It just isn't coming together for me.

Perhaps I need to start at the beginning.  Like many middle aged people, I find that I sometimes am in a room and forget why I am there.  I have to go back to the beginning so I can remember why I am where I am.  And why.

So I will do that.

Flashback to oh, 40 years ago.  I've graduated high school and am in college.  A young man in one of my classes makes my acquaintance.  We enjoy spending time together.  More and more time together.

I go and meet his parents.  We have Sunday dinner.  Things don't go so great.

I have several strikes against me.  One is being from New York City.  Another is...well, it's because my father has epilepsy.  This boy's father isn't too thrilled about that.

However, that father is holding a secret, a secret about his younger son.  How ironic, that he dwells on my father's seizures, when he has a son who is disabled.  In those days autism wasn't out in the open. When I finally find out, I'm not even sure I know what autism is.  But it doesn't scare me.

We eventually marry.  It isn't until years later that I do reading and find out just how many people run the other way when presented with a boyfriend with an "elephant in the room".  Perhaps I didn't run because of my Dad.  But some days I wish I could, and there is no shame for feeling that. 

I've sure learned since then what autism is, and I know I won't find out until my mother in law passes on the true extent of what Bil is like, what he is made of.  Right now everything is filtered through my mother in law.  She is Bil's spokesperson.  His communication device.  His way of seeing the world.

So what happens when she leaves this plane of existence?  Will Bil have his own breadcrumbs to find his way?  How will be react to things when she isn't his buffer? When we don't know the right things to say or the right ways to say them?  She's never written these things down.  We will have no Bil Rosetta Stone.

I don't think Bil will take her eventual death well. (yes she isn't immortal, and in a way that is an elephant in the room of our lives.  Not just ours but Bil's other two siblings.)  He expects to be able to live in the room he's lived in so long forever.  But there is no forever.  The house will have to be sold.  My mother in law won't talk about it.  She still expects his siblings to take Bil in.  We aren't going to.  There is a huge generation gap between her perceptions and ours.  We've promised to make sure he is cared for.  But she hasn't done her part.  Forgive me, but she hasn't.  I know a couple of people with disabled adult children; I used to work with one.  They moved their son into a "forever" housing situation young, when he had lots of time to adjust.  Good thing, as her husband died earlier this year.  My mother in law, on the other hand, won't let go.  Isn't that a form of selfishness when you are in your 80's and declining health?

You see the true elephant in the room is this.  Bil was on a housing list here in NYS called NY Cares.  His name came up a couple of years ago.  His Medicaid Service Coordinator approved of the possible placement.  My mother in law wouldn't cooperate.  We talked with her, we all did, we pleaded with her.  And then we spoke to Sally Colletti.  She started to give us good suggestions and then....breast cancer struck her life.  We lost our way.

So what will happen when he can't get his way about where to live?  Does he have a huge tantrum?  Exactly what will happen?  What are our options?  With the NY budget cuts coming...what are our options?

Do the siblings have a right to their own lives?

Why do we keep going around and around with this?

Breadcrumbs, please.  Someone.  I feel like we've failed.

What are Cousins For?

One of my husband's cousins' wives (who lives in NJ) took it upon herself to visit the motel where we are going to be staying later in the month, getting permission to look at the room, and reporting back to my mil.  Now we have a description and my husband made sure to ask my mil to give the facts to Bil.

Such as.....

The room is (in the cousin's opinion) on the small side.
The room's bathroom will be on "Bil's" side, the living room part where he will be sleeping so he doesn't have to share space with the rest of us-so be prepared to have people walking around several times during the night.
(For my mother in law, she grew up in a large family in a small apartment, so this is nothing for her-no worries.  But we did ask that she spend time and try to prepare Bil...he isn't too used to sharing.

But on the good side, there are a lot of nice restaurants in the area so we won't be stuck there all night.  I'm sure some of us will get good use of the pool too. 

Of course, I will have something to report when we get back.

The Bil Jersey Shore Traveling Show

We've been invited to a wedding on the Jersey Shore later this month.  My mother in law intends to bring Bil.  We have to stay overnight in a motel room.

Anyone familiar with autism knows where this one is going.

Several years ago my mother in law brought Bil to another wedding requiring an overnight stay. We weren't able to accept that particular invitation.  But I understand that Bil did not do all that well.

There are going to be 5 of us (including Bil) in a "suite" motel room.  In other words, four of us in the bedroom and Bil in the living room.  He'll have his own TV.  But I don't think any of us are going to sleep well.

I am not looking forward to this.  In a way I wish she would let Bil stay home on his own.  He is not going to enjoy the noisy reception and the strange hotel room is going to be stressful for him.   There's no good way to prepare him.  He will probably have a good memory of "last time" which will sour him even more.  But most of all, if something happens, we won't have much of an "escape" for him.

I believe most times for inclusion but this time....I just have a bad feeling about this.

I hope I'm wrong.

Independence Day for People with Autism

For all the progress we have made in treating those with disabilities as human beings, we still have a long way to go.

There are two things I want to discuss today on the birthday of our country.

One is the fact that in November of 2008 Bil voted for the very first time.  He voted for president.  His Medicaid Service Coordinator (MSC) said Bil had very definite opinions and knew exactly who he was going to vote for.  It was thought out (at Bil's ability level) and Bil was proud.  Of course, I could ask - why was this the first time, at 50 plus years of age?  Bil watches TV a lot and because my mother inlaw tends to watch a particular channel that has a lot of political programming, he is exposed to that.  So why had he never been given the chance to exercise his right (and duty) as an American citizen?

Was it because he is still treated as a second class citizen?

Obviously, he listens to what goes on around him.  His MSC also told us Bil doesn't always agree with that channel in some of his views so he is obviously drawing his own conclusions.

Second, there is this local news:

Today, there was an article in our paper written by Maria Dibble, Executive Director of the Southern Tier Independence Center.  The article concerns Broome Developmental Center and recent abuses that have been  alleged there.  What is not in dispute is the fact that the state has found deficiences there, and back in October they were prohibited from taking on more clients.

What the families of those whose loved ones are already there are thinking, it is impossible for me to say.  I do know someone who works there, but this person is in a "support" job that does not involve any client contact.  (This person also has a physically disabled son, for what it is worth, and needs that job badly.)  Also, although I do not know Maria Dibble personally, I have read many of her writings.  I respect her highly.

This, of course, enters into what we may want to do concerning Bil's future housing.  Southern Tier Independence Center may be able to do his Medicaid Service Coordination-if they are taking on new clients.  They, by definition, oppose group homes and other such institutions. But will they be able to help Bil?  Or, would we have to seek out some kind of group home situation?  And if so, will we one day face something like what is happening at Broome Developmental?

Bil, after all, can make decisions, but they are limited.  If you ask him about housing, he wants to stay in his room at home forever.  But Mil has a reverse mortgage, and the house will have to be sold to pay it off.  None of us can afford to pay the loan back. We can not comply with his wishes.

And what about others, more impaired than Bil?

These "clients" are citizens.  I'm sure some vote.  Why shouldn't they have the right to control aspects of their destiny, as their abilities allow?  Why do we allow these abuses to take place?

There, but for the grace of God, go you and I.  One day, it may be your son or daughter.  Or your brother or sister.  Or your aging parent.