Friday, March 31, 2017

The Wisdom of "Gone With the Wind"

Today, for Friday Reflections, I am pondering this quote:

“Life’s under no obligation to give us what we expect.” - Margaret Mitchell

This is a quote from the American classic novel "Gone with the Wind". The full quote is taken from a conversation between the heroine of the book, Scarlett O'Hara, and a man she once thought she was in love with, Ashley.

Once they were young and idealistic.  Then, the United States Civil War came, bringing suffering, poverty, death, and more suffering.  Now, after the war, Scarlet was speaking.

“We’ve come a long way since those days, Ashley,” she said, trying to steady her voice, trying to fight the constriction in her throat. “We had fine notions then, didn’t we?” And then, with a rush, “Oh, Ashley, nothing has turned out as we expected!”

“It never does,” he said. “Life’s under no obligation to give us what we expect. We take what we get and are thankful it’s no worse than it is.”

Years ago, when my husband and I were in our late teens, we never dreamed how the future would turn out.  We were self-absorbed. My brother-in-law with autism, "Bil", was invisible to us in our youth, someone who spent all his time hidden in his room.  We never dreamed of how, one day, he would cause us hours and days of worry. 

There is much that is uncertain right now.  I haven't blogged about a lot of it, and I should.  But, briefly, he was on a list to get housing when his mother can no longer care for him, and the list no longer exists.  There is another list, years long, and, due to a "catch-22" (another literary expression!) he can not be put on that list.

Other options are limited.  And, with budget cuts, his options are shrinking.  In the meantime, he wants to live on his own, which will not be possible without extensive support.  That takes money.

And we are all getting older.  The clock, as they say, is ticking.

We know now what we didn't know then. We and (he) have quite a journey ahead of us.  I intend to write about some of that, and other of my thoughts about Bil, in April, for the Blogging from A to Z Challenge.  I hope to write a book one day, and hope that A to Z can help me focus on just what I want to write about.

My theme is - Journeying Through the Unknown.  

This April, I will blog daily, Monday through Saturday, and on the last day of April.  On April 1st, the topic of my post will begin with the letter A.  On Monday, April 3, it will begin with B, and so on.

After that, we'll just have to see where this journey is taking us, and Bil.  I'm not giving up - no, far from it, but we must take different directions, and some are unproven.

Join Sanch Vee and Corinne Rodriguez each Friday for #FridayReflections.

Friday, March 24, 2017

Is There Any Good in this World?

Today, I was struck by a quote:

“There is some good in this world, and it’s worth fighting for.” – J R R Tolkien. 

This has not been the world's best week.  Some days, I feel like we of the human race are living in the world's worst reality show, and that we are close to being voted off the Universe.

Other days...

I, and other family members, had a frustrating week dealing with bureaucracy, caught in a quicksand of looking for documentation, and getting only bad news about our efforts to make a good life for my disabled brother in law, Bil.

But then, yesterday, it all turned around.

The room was packed with people, and it was unbearably hot.  There were no liquid refreshments.  But we didn't want to leave for a minute, as we listened with great attention, spending two hours learning about things we never quite understood.

And then, at the end, the two instructors, perhaps sensing some need in us, spent the next hour and 15 minutes meeting one on one with us, and answering sometimes repetitive questions with great patience.

They didn't have to do it.

One even mentioned (when I told her the problems we had signing up for the class because it was hard to reach her) that she had been out that week due to a family emergency.

But here she was, spending time she didn't have.  I know these people have such big case loads. Some days, it must seem so hopeless to them.

What a favor these two women did us with their kindness.  We have a better idea, now, of the reality facing us, but they also gave us hope.

Hope is what the human race needs right now.  And while the big people of this world try to drive it to destruction, each and every one of us "little people" has the ability to fight for the good in this world.

How?  By showing up, and by helping your fellow humans repair our world.

It's that hard, and that easy.

Linking to Sanch Vee and #FridayReflections.

Monday, March 20, 2017

Journeying Through the Unknown #atozchallenge

Welcome to my Unknown Journey and my Almost Unknown Blog.

I am a blogger who has been blogging since 2009 with another blog, but has held this second blog almost secret - until now.

I am taking a chance and joining the Blogging from A to Z Challenge, a challenge I've successfully completed twice with my other blog.

Now, I am truly revealing myself, and throwing myself on the mercy of A to Z readers.  Why?  Because I want to find out if I can really write a book.  It would be a book about my experiences, my memories, my fears, and my advocacy for my brother in law, who has autism and is in his late 50's.

My theme is - Journeying Through the Unknown. 

The unknown of autism, the unknown of my brother in law's future, the unknown of the risks I will need to take and the unknown sacrifices I will need to make in the years ahead, especially once my elderly mother in law, who has been caring for him all his life, can no longer do so.

In this process I don't want to lose myself.

I have named my blog "The Unknown Journey Ahead" for just this reason.

I would love for you to accompany me through this short 30 day alphabetical journey through what I know, and what I don't know.
Come, let us travel on this Unknown Journey together.

Friday, March 17, 2017

Why The Unknown Journey Ahead?

Why have I named this blog "The Unknown Journey Ahead"?

I have a brother in law, "Bil" (I do not use his real name) with a developmental disability called autism.  He's been cared for all his life (almost 60 years) by his mother.  But his mother is getting older, and she has many health problems.  One day, to be blunt, she won't be able to care for him anymore.

How serious a problem is autism in the United States?  I found this statistic on a quick Google search:   "On March 27, 2014, the Centers for Disease Control and Prevention (CDC) released new data on the prevalence of autism in the United States. This surveillance study identified 1 in 68 children (1 in 42 boys and 1 in 189 girls) as having autism spectrum disorder (ASD)."

One in 68.  It used to be one in 150, then one in 88, and....well, there are a lot of people out there who have family members with this condition.  Now, the first wave of what many call an epidemic have reached young adulthood, and parent struggle with the fact that most supports are removed at ages 18 or 21.

My husband, who is his older brother, is "Bil"'s guardian.  That means that my husband can make decisions concerning Bil's finances, and many (not all) of his medical decisions.  It was quite a process, and costly, for him to be named guardian. 

So, what happens when my mother in law no longer can care for Bil?  Bil lives with her, and this is what she wants.  But eventually, it will no longer be possible.

We are learning the answer to our question is not so simple.   There are programs, but they are not guaranteed.  He can't work (for reasons that I will explore in this blog another time).  He depends on non profits, government assistance, and family.

Plus, with the new Presidential administration in the United States, social programs are being slashed left and right.  Conservatives tell us we should be depending on non profits, but we have found out some those non profit depend greatly on government funding. 

Without great efforts, Bil is going to fall through cracks.  We must be inventive to try to assure he has a good future. We must, as the saying goes, "think outside the box".  There must be another way to get good housing for him, and to assure him a good life, we say to ourselves, and we are going to make it happen

We will not whine.  We may complain at times, but we will gather our strength, and do the best we can for "Bil".  Documenting that journey is the reason for this blog.

Documenting this journey will be the purpose of the Unknown Journey Ahead blog.  My hope is that others just now embarking on this journey (the birth rate of babies with autism continues to rise in our country, as quoted above) will learn from my experiences or help us with suggestions.  For that reason, I hope to participate in Blogging from A to Z Challenge in April.  In fact, I invite you to join me on March 20, when I reveal my A to Z theme.

There is a need for the knowledge I can provide.  In a way, my in laws and I have become trailblazers.  We would love you to join us on our Unknown Journey Ahead.
Join us at Friday Reflections.  Today's prompt:  The reason behind your blog and its name.

What are the reasons behind your blog?

Thursday, March 9, 2017

I've Always Wondered....#FridayReflections

I've always wondered what my brother in law, Bil's life might have been like if only he had been born today instead of in the 1950's.

An autism advocate once told me "don't dwell on the past. Only think about the future. What's done, s done."  But, nevertheless, I wonder.

What if my mother in law's concerns about her son had been addressed and not ignored?

What if her son had been evaluated when he wasn't staring to talk, instead of blaming her for it? Or when he showed other behaviors that weren't anything like what her older children had done, at the same age.

What if the United States, in the early 1960's, had Child Find?  

" Child Find requires school districts to have a process for identifying and evaluating children who may need special education and related services, such as counseling or speech therapy. Even infants and toddlers can be evaluated. They could then receive help for learning disabilities and developmental delays through the government’s early intervention programs. These programs help parents find out if their young children are on track. Then, if needed, the programs can connect families with appropriate services early in the child’s life."

But Child Find, and IDEA (guaranteeing children with disabilities, a Free, Appropriate, Public Education) did not exist.  And Bil did not get the help, the therapies, he needed.   Instead, he got bullied.  And, although he tried to go to college, he quickly floundered and had to leave.

He spent years and years working for less than minimum wage at a sheltered workshop.

He's never had a romantic interest.  

He's missed out on so much.

So here we are now, as he approaches age 60.

I can't help it.  I don't take that advocate's advice. I've always wondered.  How could things have been different?  What contributions might Bil have made to our world?

I just can't help it, although it does neither him or me any good.

Come join Corinne, at Everyday Gyaan, and post at #FridayReflections.

Thursday, March 2, 2017

April and Autism #FridayReflections

This week, I learned just how much a giraffe can unite the world, and bring pleasure to those with disabilities.

And if a giraffe can do it, why can't we reach out to the world and make it a better place?

All over the world, people are watching a webcam set up by Animal Adventure Park in Harpursville, New York, about 30 minutes from where my brother in law with autism, "Bil", lives.  Yes, all over the world.  And now, you can, too.

The webcam shows a giraffe by the name of April, who is quite pregnant, and due any day, in her stall.  In the next stall is Oliver, her mate. 

She could give birth any time.  In fact, I am publishing this a day early, so you all can enjoy the experience of watching her obsessively.

What a perfect name - April, which also happens to be Autism Awareness Month.  As it happens, many children with autism, for some reason, have taken up the April baby watch, obsessively watching the webcam day and night.

They are reading about giraffes.  So, here are a few facts about our local giraffe:

April is 15 years old, expecting her fourth calf (first calf for five year old father-to-be Oliver).  As the You tube page explains:

"The calf will weigh around 150lb and will be about 6' tall at birth.
The front hooves will come out first followed by the snout.

Mom will naturally raise the calf, with weaning could take between 6-10 months, maybe longer. We will not rush this process – it is just a documented range of captive weaning.

The keepers will go in with April, clean her pen, give her treats (but not Oliver). He is a bull - and a bull is a bull is a bull!

Giraffes are pregnant for 15 months

Upon naturally weaning, the calf will move on to another facility to start a breeding program there. We cannot retain offspring, as it would lead to incestuous mating and undermine the genetics of the program and species."

I understand the actual labor and delivery may take as little as 15 minutes.  Lucky April!  We human women could wish....

Right now, as I watch, Oliver is sleeping.  Figures!  The bull (male) doesn't help in the child raising, either.

At first, I thought watching the webcam was silly.  But, daily, I learn how much pleasure it is giving people.  Tomorrow will be better for them, because they are shedding the cares of the day, in favor of a relaxing virtual visit to upstate New York.  It, hopefully, will be better for me, too, as my husband and I try to work through some of the concerns we have for Bil's future.

April doesn't worry about tomorrow.  For her, it's all about today.  It's a good philosophy.

Bil isn't one of those watching, by the way.  He's never had much use for the Internet, and I made the decision, a while ago, not to push it.  Animals aren't his special interest; he is interested more in the weather.

April doesn't have much use for the Internet, either but she now has her own website.

One more thing - some of you may be familiar with the symbol of autism, the "puzzle piece". When my husband came over to watch April with me, he said "you know, the giraffe's spots look like puzzle pieces."

I guess, in a way, they do.

Tomorrow will be better, because of the lessons a giraffe taught me today.

What about you?

Today's prompt for #FridayReflections is "Tomorrow will be better because today I learned…"