Saturday, January 14, 2017

Time To Take Supports Away #WYHO

Yesterday, my husband, who is the guardian of his younger brother "Bil", who has autism, went to Bil's annual review at the program he attends three days a week.  Accompanying him were two other family members.

It wasn't what we expected, but we have learned to expect the unexpected.

We were told that Bil was about to lose eligibility in the day program.

You see, in the United States, programs for those with disabilities work something like this:

The family or other advocate works to get the person into a program that will benefit him.  Finally, at some point, you may be successful in getting the individual (let's call that person a "consumer") into the program.

The program gives the consumer (Bil) supports.  The program works with the individual.  The individual improves.  And so, the program (the support) is taken away.

Does this make sense?  Let me give an example.  You have a person who is sight impaired.   So you give the person a white cane (aka a long cane, or a probing cane) and teach him/her to use it.  With the support of the cane, the individual can sense obstacles, walk and get out into the community, sensing what is around and gaining confidence.

So now, would you take the cane away? 

What had made "Bil" eligible for his program was his lack of social skills, something that is part of the definition of "autism".  Within the program, using cues and other strategies, Bil did improve his social skills - within the program.  So now, time to take the supports away.  Well, he still has the disability.  Without the program, he will sit in his room and watch TV all day, instead of exercising his body and his mind, and interacting with other people.  He will backslide.  It's similar to what happens to grown children with autism who turn 21 and age out of their school supports.  They lose the gains they made.

Bil will lose what he worked hard to achieve, without those supports.  Not only that, but the people who run the program love having Bil.  They are genuinely distressed.  Bil loves coming to the program because it's a positive part of his life.  He knows the people there want him. So, as the expression goes, let's pull the rug from under him.

People with autism need positive experiences and encouragement.  Does that end now?  A support does not remove a disability.  It enables the individual to achieve despite the disability.

Today's cue in Write Your Heart Out was "This I promise you.". 

Bil, this I promise you.  We are trying our best to keep you in this program that you love.

Saturday, January 7, 2017

A New Year, A New Me?

The driving force of your life 
Three things I’d do differently this year

I've never attempted to address two writing prompts to the same post, but 2017 is going to be a year of challenge for all of us.  A President will be taking office on January 20 who is determined to make a lot of changes, and some of these changes may not be good ones for our family.

So today, I am participating in two linkies.

As my readers know, my husband and I are responsible for "Bil", a man in his late 50's who has autism.  Up to now, Bil has followed the courses that society has set out for a man with a developmental disability.  For many years, Bil worked in a sheltered workshop in the county where he grew up in downstate New York.

But, when my mother in law, who is in her late 80's, needed to be closer to family, Bil ended up living several miles from us in a small city in upstate New York.

Now, it is time to seek new directions for him in this new year.

Right now, the driving force in my life is an attempt to find some balance between working full time (as I approach retirement age, I have no interest in retiring), blogging, and helping my husband with the need to help increasingly with both Bil and his mother.  I can not be totally swallowed up by this, and I can't let my husband be swallowed up, either.  I am determined to do what is necessary but remain my own person.  It won't, obviously, be easy.

With sheltered workshops being phased out, Bil hasn't worked since mid 2015, and it now appears that he never may work again.  But, at the same time, new opportunities may be opening for him.  He has been participating in a day program two or three days a week, where he engages in various physical and mental activities.  You can see him starting to question things.  In the last Presidential election, in fact, he voted the opposite of his mother (something she wasn't happy about, I could add.)

So these are my three things I will do differently this year.
1.  For myself, I will educate myself more in how we can find help for Bil in finding increased independence for himself.

2.  I will take better care of myself.  I allowed myself to gain 10 pounds, and am on the verge of becoming overweight once more.  For the sake of my health, this must be reversed.

3.  I am going to reevaluate what I want from this blog.  Do I want to try to use it to blog a book?  I only have limited readership, so increasing the readership may have to become a goal.  I may find myself joining the Blogging from A to Z Challenge - more on that in the coming

Starting today I will join with Corinne at Everyday Gyaan in writing my heart out.  I won't do the entire Challenge but will participate in the weekly feature if I can. There is a lot more to the Write Your Heart Out event and I invite you to go to Corinne's blog to get the full details:

Write Your Heart Out #wyho is weekly feature that appears every Thursday with a linky that will be open from Thursday to Sunday.
  1. Write a new post in which you free write.
  2. You’re also welcome to write on the prompts offered in current post and/or add links from your posts from the week.
  3. Visit and comment on at least two posts before yours.
  4. Use the hashtag #WYHO to share posts and you’re welcome to grab the badge too.
Linking with #WYHO and #FridayReflections.

Friday, January 6, 2017

The Shame of It All

It's so easy to take a stand, but should you?

I did something impulsive on Facebook this evening.  On my timeline, I saw a sponsored post from Special Olympics asking people to take a stand on the recent horrific incident in Chicago, where an 18 year old mentally challenged young man was held prisoner by four individuals (I hesitate to call them "people"), who proceeded to torture him, live on Facebook Live.

They didn't even cover their faces.

The victim escaped and wandered the streets of Chicago, bloody and bruised.  The four were arrested and are facing charges of, among other things, hate crimes.  Bail has been denied.

It makes you wonder which was worse:  the torture, the live feed (complete with comments from others) or the fact that these individuals were so proud of what they were doing that they didn't even bother to disguise themselves.

So I impulsively clicked - I really did want to take a stand.  Who wouldn't?  The "sponsored post" looked to belong to Special Olympics, a most worthwhile organization that promotes understanding of individuals with disabilities, giving them the opportunity to compete in various athletic events, but doing a lot more. 

But now I'm wondering if I did right.  There are fake sites, and one of them may now have my email address and zip code.  It's something called Social Engineering - that something that reaches into your heart, and makes you click something Not Good.

We are cautioned time and again to "Think Before You Click".   I did investigate further, and I am comfortable that what I clicked really did belong to the Special Olympics.  But still....

What times we live in.  The shame of it all.

Friday, December 30, 2016

Can Determination Be the Key to Success?

Determination.

Many bloggers participate in a meme to choose a word for the year, that they will use as a springboard to achieving goals in the coming year.

As my regular blog readers know, I am the sister in law of a man in his late 50's, living in New York State, who has a developmental disability called autism. I call him "Bil". My husband is his brother's guardian.  Together, we are determined.  Although Bil lives with his elderly mother, he will be my husband's responsibility one day.

It's not an easy thing.  Therefore:


DETERMINATION will be my word for 2017.

DETERMINATION
will give us the strength to find services for Bil that will permit him to gain some independence; to be able to do more of the kinds of things he wants to do.  This is not an easy thing to do-dealing with government bureaucracy never is.  In 2016 my husband had to deal with delays, ranging from the agency moving to paperwork being lost to...well, you get the idea.

But it looks like the intake for this service may actually happen later in January.

DETERMINATION will help both of us persevere.  I refuse to be be swallowed up by the need to help with the needs of my elderly mother in law and "Bil".  Is it selfish?  I do not think so.

My DETERMINATION
to eventually write a book to help others with an adult member of their family who has autism had disappeared.  I had hoped to use this blog as a vehicle for that.

What I am finding is that I am still floundering; that this blog is still adrift without a clear course of action.  I am determined for that to stop, even if I have to stop posting for a while and regroup.

Finally, I am determined that Bil, once the time comes that his mother in law can no longer care for him, that he will have a place to go.  Shouldn't that be our home?  Well, that would be worth a post or two just on that topic.  We are both older than Bil.  Living with us can not be a permanent solution.

And, there is the matter of the incoming President of the United States. There is nothing I've seen that convinces me that Bil's quality of life will be improved by the change in administration.

I can only hope I am wrong.

Come link with me and others revealing their word for 2017.  Join us at Alphabet Salad and  #FridayReflections.

Friday, December 23, 2016

A Legacy of Love

I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel. – Maya Angelou.

Sometimes, people make the mistake of thinking that people with autism can not feel.  That is so far from the truth, although they find it difficult to express those emotions in a way that we, the community of those who don't have autism, can easily understand.

When you grow up different, many of your interactions with others are negative.  You may grow up believing that you are not worthy of love.  For those people, the special people who make them feel good have special places in their hearts.

Since moving to the area where we live in upstate New York last year, my brother in law, "Bil", has undergone many changes in his life.  It has been hard for him, but "Bil", who has autism, doesn't show much of it externally.

For the past year, "Bil" has been able to participate in a day program two or three times a week.  They transport him to and from, and he can play word games, exercise, color (adult coloring), and enjoy lunch.

Recently, the program had a holiday open house.  "Bil" came with my husband, me, and my mother in law, "Bil"'s mother.

We were greeted by one of the directors.  "Bil!", she exclaimed, "it is so good to see you.  Thank you for coming!"  She turned to us, smiling.

"Bil is one of our favorites here; we are so happy to see him.  We are happy he comes to our program.  We enjoy him being here."

I looked at "Bil" His face could have lit up the room. It may be a cliche, but now I know where the expression comes from.  I have known him for over 40 years, but I have never seen that kind of smile on his face.

Maybe that director says that to all the people who come.  Many are elderly, all have some kind of medical or developmental issue.  But it didn't matter.  "Bil" knows he is valued, that he has a place where they can't wait to see him come off the bus and walk in the door.

"Bil" will never forget how that director makes him feel.  And neither will we.  From his school days, and beyond, my mother in law received so much negative feedback, as do the parents of many with autism.

I wonder how many times she's been told "we like your son, we want him to be here."

None of us will forget that evening, and the power of a few words.  That director truly is leaving a legacy of love with those she works with. 

Linking with #FridayReflections. 

Friday, December 16, 2016

If Only #FridayReflections

I am again joining #FridayReflections over at Everyday Gyaan.

The prompt today is "If you could re-take a class from your school or uni days, which would it be?"  I want to look at this prompt from another angle.

I wish that there had been a different educational world for my brother in law with autism.

I remember well, my first experience with special education, and how far we have come in the last 50 years.

I started elementary school in the Bronx, a borough of New York City, in the United States, in September of 1957.  One day, and it may have been in second grade, we had to move down to the "special ed" room for several hours.  It was a scary place.

It was located in the basement of the elementary school.  The "special ed" students (our name for them used a word totally inappropriate today - a word that began with the letter "R"), were isolated from the rest of the student body.  I never did see them again.  I barely knew they existed.

Those children, isolated in my school's basement, had few rights in education, as did "Bil", my brother in law, who was born in 1958.  Not until 1975 was the "Education of Handicapped Children Act" passed.  By 1990, this law had assumed its current name, IDEA, the Individuals with Disabilities Educational Act. 

But these laws were too late for my brother in law.  I can wish that I could go back in time and bring what exists now to those times.

There was no modern Child Find when Bil started school in the early 1960's.  Earlier, when he was a toddler, there was no alarm over the fact that Bil was not speaking by the age of two.  Rather, my mother in law was blamed for his deficits.  She "spoiled" him, her doctor claimed, when he pointed to items and grunted.  He threw tantrums when he wasn't understood. He didn't speak until he was five.

In today's world, his autism would have been recognized at an early age, hopefully.  He would have been entitled to educational services through the age of 21 (after 21, what happens is a long, and not necessarily pleasant story, to be told at another time).  We'll never know what Bil might have been capable of, had he received the proper interventions.

But, as a wise autism advocate once told me, we can not live in the past. We have to work with the present day Bil, to make sure he has the best quality of life available to him.

But still...I dream....if only.  If only, in life, there could be do-overs.

Come over to Everyday Gyaan, link up if you wish, and read some other Friday Reflections.

Friday, December 9, 2016

Skywatch Friday - Moon over the Mall

My brother in law is developmentally disabled.

One of his favorite activities is visiting our local shopping mall in the Southern Tier of New York State.

I took this picture right after sunset tonight, trying to frame the moon between the utility wires.

Linking to #SkywatchFriday.  Come visit sky pictures from elsewhere in the world.