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…"

Friday, February 24, 2017

To Be At Peace #FridayReflections

Picture Prompt, courtesy of Everyday Gyaan
Oh, to be able to sit calmly on a rock, fishing pole in hand, and wait for a bite.

To not have to worry about you, brother in law "Bil". 

Bil, I wonder if you worry about your future.  Perhaps, to you, time is unending, stretching out forever.  You depend so much on routines.  They provide a security, a scaffolding for your life, in a world where a change in routine means chaos.  That calm is deceptive.  We know how anxious you are.

Anxiety goes hand in hand with autism, a developmental disability that prevents you from understanding much about human behavior.

But we, your family, we must worry about you.  We are not peaceful fishermen.  We are apprehensive, because we can see things coming.

I wish I could transport myself into that picture.  I can imagine the waves lapping against the rocks and the sound they make.  I can imagine the man with his mind clear of thoughts, waiting.

Waiting, always waiting.  Will a fish bite?  Will no fish mean he goes hungry?

It might be nice to suddenly pop into that picture, and shed the worries I have here in my own world.

But here's the thing, Bil.  Your life is going to change drastically.  It may change tomorrow, or next week, or next year.  But changes are coming.

You were on a housing list, and now the housing list has been discontinued.

The State may be changing the way you get services.

Your mother will not live forever.  She's taken care of you nearly every day of your life.  You assume that someone will always be there for you, don't you?

That's the plan.  But, stuff happens.   We know how things are changing so rapidly, here in the United States.  Programs vanish.  Funding vanishes.  People are fearful.

I know those are not your worries, Bil.  They are the worries of your guardian, your brother, my husband.  Your guardian who, chances are, will predecease you, because you are several years younger. And you are in better health than he is.

Ah, to disappear into that picture, and never reappear.

Linking to #FridayReflections.

Friday, February 17, 2017

The Cat Killed Him

I am scared about what will happen when my mother in law dies, and my brother in law, "Bil", faces life without his mother for the first time in his life.  "Bil", as my regular readers know, is developmentally disabled.

His mother in law has been there nearly every day of his over 55 years of life.  Except for several hospitalizations, and a couple of vacations away from her (during which he was cared for by other family members), she has been in his life daily.

His mother is her interpreter, the person who helps him understand the world.  She has cooked for him, cleaned for him, took him to family gatherings.  Until the last two years, she was his transportation, as Bil has never been able to learn to drive, and has never been taught to use public transportation.  She helped to order his life. Someone, once, observing them, mentioned they sat together like an old married couple.

It's a relationship we can understand intellectually, but not emotionally.
When his father died, he didn't seem to be affected that much.  In fact, his reaction was somewhat puzzling.

He blamed his father's death on the family cat.

He didn't try to harm the cat, no.  But he insisted that the cat had killed his father.  I think the cat also realized that he wasn't all that welcome.  Eventually, he went to live with a neighbor, one who owned a cat.  The neighbor welcomed the cat and fed him when he showed up.  One day, the family cat never returned, deciding he would rather live with the nieghbor.

To this day, we don't understand "Bil"'s  logic, and why Bil felt that the cat had killed his father.

But, we know, when his mother (who is nearly 90) passes, it will be different.

We do know his father in law didn't participate that much in his day to day care.  It was always his mother who took care of him.  His father was in the background.

We don't know how Bil will react.  Will he listen to us?  Will he show temper and refuse to be reasoned with?  It scares me.  The thought of my husband's death, or my death, doesn't scare me nearly as much.

What we do know is that the state will not let him stay in the apartment he shares with his mother.  And we are not sure how much he understands how much his life will change.

Can any of us truly understand what her death will mean to all of us?

We will have a meeting later this month with a social service agency, and learn more about his future, and what we can do to make sure that Bil's wishes are honored.

Today, I am blogging from a prompt "What scares you most about dying?" at Living My Imperfect Life.