Saturday, February 27, 2010

Sitting in the Cold Dark

This isn't strictly a story about my brother in law with autism.  This is more about eldercare issues.

We live some 150 miles from my mother in law, who is in her early 80's, and lives with my brother in law.  A couple of times a year they will have winter storms that knock her power (hence her heat) out.  This past storm that hit the Northeast United States was one of those storms.

My husband and I were coming home from work last night when she called our house on her cell phone and spoke to my son.  Of course, being a teenager, he didn't exactly tell us the moment we arrived home.  Well, he finally "remembered" (a couple of hours later!) that his grandma had called , and said she didn't have power, her heat was off and the trees around her house were quite bent to the ground under the load of all that gloppy, wet snow.

And we are 150 miles away.  Speaking of being helpless.  We're recovering from our storm too.

First, time to make phone calls.   She has internet phone, so of course it is off.  That tells us she is still without power.   Her cell phone gives us an unavailability message.  Finally, my husband calls one of her nieces (30 miles from her) who calls Mom's neighbor.  She's home, and without power too, but says Mom is OK.  Finally he was able to reach his sister who lives about 20 miles from Mom.  She said that she had gotten hold of Mom, and that she was huddled under a bunch of blankets and OK.  As my husband is talking to his sister, the call waiting announces his Mom is on the line.  So he ended up speaking with her but she said her cell phone was ready to die so they talked quickly.  And here we were.

All this technology. 

Every time there are one of these storms, it is more and more worrysome.  She suffered a small stroke some 2 years ago.  Her mobility isn't what it used to be.  She falls.  She refuses to wear her "I've fallen" alarm.  She is fiercely independent and wants to be able to have bil continue to lives with her.  And, how much can bil help her?  Could he call for help if something happened?  What will he do if the power stays off?  (one time, before my father in law died, it stayed off for three days.)  Oh, and did I mention that she drives one of those recalled Toyotas?


I hope this posting is around somewhere when I am old enough to drive my son crazy.

Friday, February 26, 2010

My Brother in Law, Computers, and the Virtual Weather Channel

Several years ago, I tried showing my brother in law the Weather Channel website, and some other things online.  He didn't seem to be that interested, but nothing says I can't try again one day.

I have to find some way to help broaden his horizons, so he can learn more about life and be able to make informed choices for himself.

My mother in law does use a computer but she has never owned a really good one - and her most current one needs to be replaced. So my brother in law has not had much exposure to them.

I found today a virtual Weather Channel HD studio tour.

One day I'd like to see if I can interest my brother in law in this.  But then I think about him using sites like Facebook and I shudder a little.  Introducing him to computers would be one complicated thing.

But maybe one day.

I may write about this topic of computers again sometime in the future.

Thursday, February 25, 2010

The Weather Channel Comes to Binghamton - But Can Brother in Law Go to the Weather Channel

Mike Seidel of the Weather Channel was broadcasting details of our snowstorm live from Binghamton earlier today.

Wonder how my brother in law feels.  I'm sure he has been watching.  The storm wasn't that bad during the day but an hour or so ago the wind really started to pick up.  It is pretty nasty outside right now.  Bil wouldn't want to be out there but I'm sure he is following the storm on TV.

The weather is my brother in law's true love.  It's funny too, that his two neurotypical brothers are very interested in the weather, too.  In fact, my husband, had the local colleges offered a major in meterology, probably would have taken it up.  But there wasn't the money to send him to a college that offered that. 

But back to my brother in would have been something if the Weather Channel gave tours, but they do not.  And, it would be a very daunting challenge to get him down to Atlanta.  Still, I may blog more about this one day.

Wednesday, February 24, 2010

Winter Storm-Brother in Law Style

My brother in law loves to follow the weather - on TV, that is.  He is scared to death of thunderstorms "in person".  He is anxious whenever the forecast is for snow, either at home or where his brothers live.

Yet, he has had the most sustained conversations he is capable of when talking about the weather.

Bil must be really anxious and excited now.  We are under a winter weather warning, here in the Binghamton area.  We are supposed to get 8 to 14 inches.  It will be the really heavy stuff.  Let's hope we don't lose our power.

Bil is probably giving my mother in law frequent updates about the situation.

Weather is a wonderful "special interest".

I wish I could take him on a tour of the Weather Channel.  Wouldn't that be awesome if he could see it in person and not just on TV?  Somehow, the key to bil may be in the weather-if only we knew how to unlock that door.

Future Planning Part 1-Cautionery Tale

 Planning for the future.   Most of us are guilty of slacking off on this. We were no exception.

Over the years, we asked a number of times "what about bil"?  And my father in law responded "everything is taken care of".   He really didn't want to discuss it.  He didn't tell....and we didn't pursue the asking part.  Shame on us.

My father in law died 2 weeks after retiring.   He left a handwritten will and a small amount of life insurance.  (what did he do for a living?  Well, he was in the insurance industry.  So never "assume".)  He had a company pension.  But he had not taken the pension option that would have given my mother in law a survivor benefit because he wanted the higher pension while he was alive.  Too bad he didn't live to see it.

But worse:  He had never made any attempt to get bil on Medicaid.  Why?  Because he didn't believe in big government.   (As an aside, you the reader may be asking why it was so important that bil had gotten on Medicaid.  Well, he would have become eligible for quite a number of services here in our home state of NY where being on Medicaid was a requirement for eligibility.  This situation may exist in other states too, but I only know about NY.)

When we met with the local ARC, where bil had been at a sheltered workshop all those years, we found out that he was the only client at that job that wasn't on Medicaid. 

It would have helped my mother in law too, because by that time she was struggling to pay for her medications, and for his.  She and Dad had worked hard all their lives. They didn't turn down Social Security or Medicare, why was this different?

We finally got bil on Medicaid, but it took years.  And he isn't out of the woods, with all the NY budget cuts. Who know what the future will bring-because of lack of planning, and us not being assertive enough about our concerns.

Monday, February 22, 2010

What Do Siblings owe Their Siblings with Special Needs? Part 3

Dear Mother in Law - my "letter" continues.

We did care, but perhaps it would have helped if you had discussed your expectations with us.  Siblings do care, and should care.  But, and this is the important life-we also have the right to our own lives.

I remember, as an adult, the time my husband took bil for a walk.  And you got so upset, because it may have triggered an asthma attack.  In the meantime, we felt that bil's horizons had to be expanded, that he needed to be exposed to different things so he could make an "informed decision" about his goals for his life.

In the meantime, we did one day find out your expectations for your other children.  I remember how hard it was for us to have that talk but we did have it.  You had "assumed" that one of bil's siblings would step forward and take care of him.  That we would eventually move him into one of our homes.  You didn't, however, account for our health problems, for one sibling living in a one room basement apartmentor, really for that matter, a lot of other things.  Like the fact that 2 of the 3 other siblings are older than bil, and bil might just outlive us all.  We've been blessed, he is in relative good health.

You just assumed. As it turned out, all of us had different expectations.

We will be "there" for bil.  We've always assured you of that.  But no sibling should ever be expected to sacrifice their entire lives"just because."    We all need to work together to make sure that bil has the best life possible because he can't fully advocate for himself.  And what becomes of bil may not be what you expect-but it will be good.

Meantime....what does bil expect?  What are his hopes and dreams?  It is so hard to find out but one day I will write about what we do know.

Your daughter in law

Sunday, February 21, 2010

What Do Siblings Owe Their Siblings with Special Needs? Part 2

I want to talk a bit about the relationships between "typical" siblings and their sibs with autism and also the expectations of their parents.

If I was writing an open letter to my mother in law (see previous post for what set this off) I would say something like this:

Dear Mother in Law:  (and you are a good person, so I say this with respect)

Being a mother, I know it is hard when you are trying to raise 4 children.  It was much harder for you back in the 1950's and 1960's when there was no support for what you were going through.

But do you truly feel that you were supposed to get that support from your own children?  Sometimes it just isn't possible.   Or you do get support, but it disagrees with what you feel would have been best.

You've said more than once that you wish your children had spent more time (especially my husband, who is the oldest) with your child who had autism.  You wanted your other children to help you with this and yes I am going to use this word, burden.

But when it comes down to it, should (for example) a 10 year old boy be responsible for his 4 year old sib?  And if so, how?   Should a young boy have to sacrifice his friends, his interests, just because he has a disabled brother?  And if so, WHY?  How about at other ages?  We've been lucky but other siblings have had parents not show up at sporting events they participated in, at concerts they played in, at school graduations, etal. because of the disabled sibling.  There could be quite legitimate reasons but all of this is a form of sacrifice. 

Many siblings have even sacrificed their careers, or at least been made to feel perpetually guilty for daring to have their own lives.

At an early age my husband was already getting up early and making breakfast for the family.  My husband also started working at the age of 12, first as a paper boy, and then as he grew older taking on other jobs such as lawn mowing and golf caddying.   Pretty much as a teenager he bought his own clothes and had his own spending money.  He bought his own first car, which was old and lucky to pass inspection.  He paid for his own college.   In college (a low cost one), he worked 3 jobs one summer and also worked nights during the school year.  Didn't that take a burden off of you? 

You never discussed with us your expectations, your hopes and dreams for bil.  More on that later.

To be continued....

Saturday, February 20, 2010

What Do Siblings Owe their Siblings with Special Needs? - Part 1

This is one of those "elephant in the closet" topics - I truly hope I don't offend anyone who knows me, because some parents of children with autism have been of very great help to me during our journey of discovery and learning with bil.


It is my observation that there is a big divide between siblings and parents, and not just in the autism area, perhaps for all "special needs".  But I can only speak to our own personal situation, which has to do with autism.

To set the stage:  my husband is the oldest of 4.  His first brother (typical) is 17 months younger.  His brother, the one with autism, is 6 years younger.  There is also a sister.

I am not the parent of a child (growing or adult) with autism, nor am I a sib.  But I am a parent, and also the wife of a sib.  We've been married a long time.  And bil has been in my life, one way or another, for almost 40 years. So perhaps I have a unique view of the whole situation. 

Anyway, what set this off was a random comment by my mother in law when we brought my brother in law back home.

I can't quote her exactly now, but she made a comment to the affect that my husband had not spent a whole lot of time with his brother growing up so it was really nice that he spent a week with his brother now.

More in Part 2.

Thursday, February 18, 2010

Learning to Plan

One very busy day during his recent visit, my husband ran into a little glitch.

He had picked my brother in law up and then picked me up at work so I could go to physical therapy.  He was going to take my brother in law to Target while I was in therapy.

There was just one problem.  My brother in law didn't realize how long he was going to be away from home.  He takes medication and he did not have it with him.  It never occured to him he should have taken it with him.  So my husband had to drive him back to my brother in law's house (1/2 hr trip) to get it.  It made for a long afternoon for my husband.

I am not sure my brother in law has ever had much reason to plan ahead.  Someone has always done his thinking for him.

What happens when my mother in law becomes ill or worse? Do we take over all his thinking?  I truly do not think that is a good idea.

How do you teach a person with autism to plan?

A while back I had looked in the public library to find if they had books on teaching an adult with autism.  The reference librarian was very interested in helping me but she couldnt' find much, even at other branch libraries, on the subject.

There are books for children but what do you do with an adult who never had specialized education geared to those with autism as a child?  We aren't educators either, we are just caring family members.

More questions than answers in a lot of these posts.

Wednesday, February 17, 2010

A Person with Autism Explores his World

Is my brother in law bored?

It is so hard communicating with him.  Also, his life has been in a similar routine for so many years.  For someone with autism, that is not necessarily a bad thing.

However, we made some interesting observations while brother in law was up here.

He is very curious in his own ways.  In small doses, he wants to explore places (mainly shopping malls and stores like Wal-Mart and Target.)  He wants to see what has changed since the last time he was there.  And, due to his excellent memory, he remembers the small details.  As we already knew, he enjoys going to restaurants.

And, when my brother in law's wife was working with him, getting him to help with dinner preparation in easy ways, or pushing a vacumn cleaner, she observed that he seemed to want to help.

Finally, when we arrived at my mother in law's house (3 hour journey) he settled back in and then wanted to be taken to the mall down there.

I know that sensory input for many with autism is an issue.  But I wonder if my brother in law needs a little more novelty in his life.

We took him to some places new to him and I'm not sure he was totally happy with that.  However, when I had to go to physical therapy (my husband was with us - I do this during my work hours) we gave him the choice of going into the building or not.  He chose to go.  We only had him there a couple of minutes.  It was so hard to tell what he was taking in.  He certainly did not resist leaving.

I don't know if he is bored with his life but I do want to investigate this subject more.

Monday, February 15, 2010

Earning a Living

 Back in the 1970's, job opportunities were somewhat limited for someone with autism.  Unfortunately, they still are (in many cases).

After bil graduated from high school, he tried to go to college (right after high school, so that would have been in the late 70's-before any kind of supports were available for those on the spectrum) unsucessfully. Subsequently, he ended up at a sheltered workshop through the local ARC.  He is still working in the sheltered environment.

There is a appreciation award on the wall in my mother in law's house, thanking bil for his 25 years of service.  He got that award several years ago.

Over the years, his work experiences weren't always successful.  There was one job in particular he got fired from because of a supervisor who was (to put it mildly) less than willing to work with him.   But that was many years ago.

Right now he only works part time, 16 hours a week.  He works with blister packaging for medical needles.

I do not know what he makes now, but several years ago, it was below minimum wage.

How is someone supposed to live on that?  That would be worth its own series of posts.  I am no expert on this, just a family member, but it seems the "system" is designed to keep those with disabilities at a poverty level, trapped.  Just an observation.

He says the work is OK.   I know his Medicaid Service Coordinator has been looking into other opportunities for him on a higher level, and I know that in the past he has been somewhat resistant to any kind of change.

I will write more on this at a later time, although it may be a while.

I am not sure he is truly happy with his life, but it is so hard for him to communicate what is on his mind. 

Sunday, February 14, 2010

Change...It's a Gonna Come (part 2)

My brother in law's medicaid service coordinator told us the story once about them having to change his chair at the sheltered workshop he works part time at.  It was a different color than the old chair.  He was very unhappy, and it took him over a month to adjust.

Little things during our visit....we were already familiar with these issues, and know they are part of the autism "package" but now we were seeing it in action day after day.  For example:

We were taking him places, and added a stop at the last minute.  He was immediately anxious.

His other brother in law said he'd be back to pick bil up at a certain time, and he was a few minutes late.  As soon as the appointed time came, bil was immediately anxious, with anxiety building as the minutes ticked away.  It wasn't very long but to bil it was a lifetime.

On the way out of town (husband and I driving him the 3 hours back home), I knew we would pass the library.  I had books I had to return so we decided to swing into the parking lot and use the drop off box.  Immediately, bil anxiously exclaimed "what are you doing?"

Same thing when we got into his home town.  You are on the main road and then you have to take several local roads.  Husband turned onto one particular road and suddenly from the back of the car came the anxious "what are you doing?"  It must be my mother in law doesn't take that particular road.

And finally, when we got home, my brother in law told his Mom he had bought a new pair of shoes.  Immediately she said "you are going to throw the old ones out, right?"  He just stared at her.  She then said "Tell me you are going to throw out the old shoes".  Apparently once something is worn out or broken, it's very hard to get him to get rid of it.  My mother in law is a meticulous housekeeper but she has to do all of that.  He won't get rid of old things on his own.  At least not without a great deal of effort on her part.

More later.

An Autism Valentine

During my brother in law's recent visit, he asked if my son would like a valentine from him.

My son is a young adult, soon to leave the teenaged years behind.

My husband laughed and said, "no, at (son)'s age, he should be getting a valentine from a girl."  And that was that.  (We were curious and asked if he gave his Mom a valentine, and he said no.)

I don't know if anyone has ever explained Valentine's Day to him.  But the way it is merchandised now, I can see where he gets confused.

After all, I play an online game called FarmVille.  For the past week, friends have been exchanging valentines with each other.   I wonder what my brother in law would think of that.

Change...It's a Gonna Come (part 1)

My mother in law is back home, and my brother in law is now returned home to his room in his house. This is the one place he remembers living in.  And one day he is going to have to leave it for good.

Change is going to come.  It's the elephant in his room.

My mother in law has fallen several times.   She fell around Christmas time and this time she doesn't seem to be totally bouncing back.   My mother in law, bless her, she is fiercely independent.  She has done much in her 11 years of widowhood.  She didn't even tell us about this fall right away.  No surprise, she hasn't always told us about the other falls.  We usually find out because she has a visible bruise or has otherwise hurt herself. And I wonder how many other falls there have been.  One day it is going to be "the fall".  And then what?  It's the big "what" that all grown children face with parents one day.  It's just our turn now.

Anyway, several things of note.

First, in talking about her great time in Florida, she mentioned she fell on a sandy beach, despite hanging on to her nephew, who was walking with her.  She just couldn't keep her balance.

Second, she mentioned she had been so relaxed in Florida, and now she felt like all the weights of the world (that wasn't exactly what she said-I'm paraphrasing) were back on her shoulders. 

I wonder exactly what she feels about her disabled son.  She's always been so protective.  A couple of years ago, when his name came up on something called the "NY Cares" list, she would not let him go.  And she also made a comment, the time before this, about people saying bil is company to her.  She said he really wasn't.  I couldn't believe this, it was not like her at all.

Maybe the truth slips out more easily now.

She still tries to protect him, but she no longer can't.  Now, bil must be the best help to her that he can be.  Change comes to us all.  It doesn't come well to him.  More on that next.

Friday, February 12, 2010

Our Week Together ends

Today we take my brother in law back home.  When I have more time, I'd like to talk about it a little more.  No, scratch that.  A lot more.

We, but my husband especially, did a lot of things with him.  We even took him to see where I take physical therapy. (since my mother in law has had to have some similar therapy, I thought it was a good thing for him to see. ) He got to see me hooked up to something called "electrical stim".

And I hope we learned a lot about him.  We are going to need that knowledge one day.

I hope bil enjoyed the week.

Tuesday, February 9, 2010

Unlocking the Key to...the Key

It's been an interesting few days spending time with my brother in law.

Yesterday husband and I both took the day off work and spent time with my brother in law.  We took him out to eat (one of his favorite activities) and then took him to Wal-Mart, our local enclosed mall, and the Christmas Tree Shop.

When we picked my brother in law up at my other brother in law's house, the house was locked as he and his wife were both at work.  They gave Bil a key.  Their lock is such that you have to lock it from the outside (you can't turn something and have it lock when you close the door).  Bil had a great deal of difficulty manipulating the key; my husband had to walk him through the steps of locking a door.

I have a feeling that was the first time Bil has ever used a key.  But maybe not, maybe the difficulty was this was a new door, a new key, to him.  (I think, though, that my first theory is correct.)

When we returned him "home", same process, Bil had to be shown all over again how to unlock the door.

My sister in law has been using this visit to teach Bil other life skills and I can only hope he remembers them.

I wonder if brother in law can use the skills in another context.  For example, they have a caller ID that displays on the television.  They taught Bil and so when my husband called to let Bil know he was coming, Bil answered the phone.  But would he recognize the caller ID in another context?  That would be an interesting question.

Sunday, February 7, 2010

Getting Bil to Help My Mother in Law Out

Bustling around, getting ready for the Super Bowl (just my family, my brother in laws, my sister in law-son is working) I got to thinking-I've had a lot of help - my husband does the bulk of the cooking-but I've been doing a lot of stair climbing today, which has my arthritic knee complaining, and my back (which I have problems with) is complaining massively, too.

Meanwhile my mother in law, who is in her 80's, and has some mobility issues (a lot due to arthritis too but not all of it) tries to get bil to help.  This has been a recent development, trying to get him to help.  Now, he helps take the trash out, and she "thinks" he would be able to call 911 if necessary (she has fallen several times).  I tend to doubt it. The last time we were down (Christmas) he helped her with some table setting. But in truth, he doesn't help anywhere near what he should be doing, imho.

My other brother in law tried to show bil how to do a laundry and it wasn't very successful.  His wife has succeeded in getting bil to help with simple food preparation (no knives, etc.)  I didn't try to get bil to lend a hand - he stared at the Weather Channel while I opened bags of chips (this sometimes is hard!) and washed dishes, and my husband cooked.

We HAVE to get him to help my mother in law out.  She needs the help.  I am going to post more on this topic another time, as I have to go.

Saturday, February 6, 2010

What is so Special About Being Special?

The recent incidents about people in the news using the dreaded "R" word (everyone with a connection to someone with a developmental or intellectual disability knows the word I mean) made me think about something else-the use of the word Special.  As in "special needs", "special Olympics", "special ed" and so forth.

I use the term myself.  I would certainly call my brother in law with autism a "special needs" person.

Years ago, I used the word "special needs children" (in another context) to someone, who took great offense.  "What is so special about special needs children?" she asked.  "Isn't every child special?"

Well....yes and no.

Online dictionaries give multiple meanings to the word "special".  All I can say is... many of us wish we did not treat people differing from the majority of us in a certain way. But we have, through the years.  When my brother in law was growing up, back in the early 60's, we had mostly stopped hiding kids like him in the attic (literally).  However, there was still a tendency for well-meaning professionals to suggest institutionalization, so the family could forget about their "mistake" and get on with their lives.  I'm glad my in laws didn't make that choice.

My brother in law is a person. He isn't always likeable.  But he is different, in a good way.  And sometimes a very funny....special person.

We told him he would have chicken for dinner tonight.  Husband asked him "how would you like your chicken?"  The reply was "Chicken Divan would be nice."

I don't know why, but that tickled me so much, I'm still chuckling.

He isn't getting Chicken Divan, but we are making something....err, special. 

Friday, February 5, 2010

The First Adventure

My brother in law is in town, brought up hereby my other brother in law while my mother in law is in Florida.

While I was at work today bil kept my husband company for an hour or so.

The two brothers arrived.  The brother bil is staying with asked my husband to "watch" bil while he went to the health club to exercise.  My husband did, and they had a good time watching the Weather Channel and the financial news.  But, brother had said he would be back at a certain time....and he was a few minutes late.

Brother in law was already becoming quite anxious.  Anxiety, sadly, has affected a lot of his quality of life.  Even the weather, one of his loves, can make him very anxious.

I wonder how we can 'train' my brother in law to be more accepting of the uncertainties of life.  The last time we saw him before today, he asked me if we would be visiting for a certain event.  I told him we did not know yet (which was the truth).  A few minutes later, he was asking my husband.  He could not rest without knowing, and "I don't know yet" wasn't an acceptable answer.

We'll both be spending time with him tomorrow evening so stay tuned for more.

Tuesday, February 2, 2010

T minus Less Than Two Days

My one brother in law should be bringing my other brother in law up here Thursday.

And then he will be here for about a week and a half visit.

Am I anxious?  In some ways yes.  But I also know that if I worry, what will go wrong will be something I never even thought of.  So I try to calm myself with that thought.

 As far as I know, this will be the first trip "bil" has ever taken (about a 3 hour car ride each way) without his mother along, although he has visited up here maybe 20 times in his life.  And trust me, bil remembers each one in great detail.  That is one thing I've always been fascinated with, his almost photographic memory.

Bil has stayed at my other brother in law's a number of times, but never for this long, and again, never without his mother.  I don't know if this will stress him out.  I don't have any "history" to go by.

One thing I have never compiled, for various reasons, is a document we can go by, which details my brother in law's wishes, his likes, his dislikes.  Sure, we know his favorite foods and his favorite TV shows.  But there is a lot we really don't know about him.  My mother in law (who he has always lived with) has never really communicated these things to us and if she left us suddenly.....  I hope that my in laws, or us, can notice a lot of things during this visit.  Even little details like the brands/flavors of toothpaste, could mean a lot one day.

That's one of the disadvantages of living 150 miles away...we just don't have the everyday interaction.

SibNet and SibKids

I would be remiss if I don't mention two lifelines for siblings (young and old) of those with disabilities of all types.

SibNet for adults - SibKids for children.

Both are very safe places to gather on line, and talk.  To talk about successes, frustrations, and gather information.

If you are a sib-you are not alone.  Unlike my husband, who had to "do it alone" there is help now. 

Enough of recommendations for now-in my next posts I will be returning to my brother in law.