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Sharing is Caring especially when it comes to AUTISM

The following is something I read on Facebook today, although I do not know this mother personally, I understand her story all to well.  I believe her story, as I have seen this all too familiar scenario played out due to ignorance as well as unawareness to our special needs community.  Our communities are not comprised of all perfectly “normal” human specimens.  In fact, the quote that normal is only a setting on a washing machine or dryer is very true.  As we are all snowflakes, not one of us is identical to another, we all have our quirks.

When will we learn to be tolerant, accepting, and encompass the diversities we encounter on a daily basis?  When trusted medical doctors, nurses, and other healthcare officials cannot be trusted, it is time to change the system.  Approximately 17 years ago a Psychiatrist at the Cuyahoga County Board of Mental Retardation, informed my son (who was 11 at the time), my husband and myself, that he (our son) should give up his dreams and passion for baseball.  She told him his dreams were too lofty and that he was destined to living in a half-way house and performing menial jobs.

As parents, we refused to listen, and we argued with her that she was wrong despite a complete case study she provided us with to prove her point.  Today, not only did my son graduate high school with a 3.0+ GPA, attend college and receive a BS in Business Management, he has also been an Autism Advocate, and for over a year he has worked with the Cleveland Indians and has accepted two advancements.  He is living his passionate dream despite the ignorance of a “trusted” professional.  If we had listened and given into her diagnosis (not the one of our son’s neurologist) we would have not only ruined our son’s life but destroyed much of ours as well.

Anyone who knows someone on the spectrum most likely has a similar story, and we must continue to bring the REAL SPECTRUM AWARE to light.  April may be Autism Awareness Month, but for the one out of sixty-four and their families, Autism Awareness must be every day.  #IGNORANCENOTACCEPTED! #webothhavesonsbythenameofAlex

 

APRIL IS AUTISM AWARENESS/ACCEPTANCE MONTH
Why this is so important to me and many of my very dear friends…

Our story that changed me forever…

June 2015 Alex had a horrible sinus infection. He was in terrible pain, but because his verbal skills are limited, he did not know how to express how he was feeling. All he knew is he needed relief from the pain. He ended up hitting himself which resulted in 2 black eyes. As my poor “Gentle Giant” baby was lying in bed that night, his eye started to bleed. Although I was very skeptical on how he would be treated there I knew (thought) he needed to go to the hospital where they would give him something to make him feel better.  And that my friends is where Alex and my Horrific Nightmare Began…

Before this, I think we kind of lived in a bubble. Beachwood is kind of a small town where most people know each other. So most people knew Alex for the funny, smart, fun loving, Gentle Giant he is. On top of that, he attended an Autism School. So acceptance in the community was just part of our world. Never did I imagine he would go to a hospital 10 minutes away from our house where the minute he came through the doors, he was treated like a monster.

All these doctors saw was a 6’4” man with 2 black eyes not happy. They didn’t care that he was not happy because he was in pain. When I told them he had autism, they actually said to me “We have never had anyone here with autism before” I called Bullshit on them. “Really? 1 in 64 and he is your first?”

They put him in 4 point restraints and sedated him. They would not treat his sinus infection even though I insisted. I stayed with him 24/7. I slept in a metal folding chair and only left for a couple each night when someone I trusted at the time would come so I could shower. I heard and saw everything that went on. I would tell them he is in pain. I would beg them to give him something for his pain. They would say “He is sedated he doesn’t feel anything” I could see he was in pain. They didn’t care. To them, he wasn’t a person. He got pneumonia and ended up on a ventilator. This went on for 3 WEEKS! I fought with them, I yelled they DIDN’T CARE!! I tried telling them what a wonderful boy he is. THEY DIDN’T CARE!! To them he was a very large disabled “monster” The doctors would talk around me. Like I wasn’t there. They told me if he got out they wanted to send him to a mental hospital. They treated him like a crazy monster. They didn’t care; I was his mother and legal guardian. They acted like I knew nothing about him. They didn’t believe anything I told them. Me and others that saw him never said the words but knew he was going to die there. They were going to kill him. I begged for him to get transferred out of there. I thought of ways to sneak him out. Finally, after 3 weeks, they sent him by ambulance to the main Clinic where after 2 more weeks they were able to get him off the ventilator. He was left immobile. They wanted to send him to rehab, and I said “NO. NO MORE. I WILL DO ANYTHING AND EVERYTHING TO HAVE HIM REHAB AT HOME!”

Thank God Alex has the Fershtman determination and hard work ethic. It took a while but he had to learn to walk and feed himself again. And most importantly he had to learn to TRUST again.
He had nightmares from this experience. I slept with him every night for 1 year. I still have nightmares. And unlike Alex, I have not learned to trust again.
You know how they say “Once you are in Hell nothing else frightens you” It is true. I was there and I do not get intimidated by anything anymore. Alex and I are both fighters. We are survivors. If we made it through Hell we can make it through anything!
Even making this move. I knew it was the best thing for both of us but I thought the transition might be a little hard for him. However, I knew we would get through it. If we survived our horrific nightmare we would survive transition issues. Thankfully he has been so happy here since day one! I promise This will NEVER HAPPEN TO ALEX AGAIN! I WILL DO ANYTHING AND I REALLY MEAN ANYTHING TO MAKE SURE IT DOESN’T!! And I also promise I will make sure everybody will always treat him as the sweet, loving funny person he is!

AND WE AS A COMMUNITY NEED TO MAKE SURE THAT WHAT HAPPENED TO ALEX NEVER EVER HAPPENS TO ANYONE AGAIN!!!

REMEMBER, PEOPLE WITH DIFFERENT NEEDS ARE STILL PEOPLE AND DESERVE TO BE TREATED AS PEOPLE!!! NOBODY’S LIFE IS WORTHLESS BECAUSE THEY HAVE ANY KIND OF SPECIAL NEEDS!!!

And I don’t care who you are if I hear you say otherwise I will call you out on it every time!!!

THIS IS NOT A POLITICAL STATEMENT SO PLEASE DON’T MAKE IT ONE!
THIS IS A STATEMENT ABOUT PEOPLE PERIOD!!!
AND A STATEMENT ABOUT AUTISM AWARENESS AND ACCEPTANCE!!

ps. I cannot promise that this is my only Autism Post this month… so Buckle Your Seatbelts Kids!!

***Annette Scott & Sandi Fershtman – thank you for sharing and now let’s home we can touch the hearts of humanity (and medical professionals) to understand that Autism touches us all!

 

Supporting Each Other in Harmony

Well, it has been a whirlwind around here both in the house of the HALE family as well as newclevelandradio.net.  March is birthday month for both my husband and me, and I am exactly three weeks older than him almost to the minute.  Richard (my husband of thirty-five years,) is my best friend.  When you spend 35 years with someone as intimately as we have there are days when you hate (ok, dislike) the person you love.  We both have had our share of those days, but love in our case does conquer all!

In addition to birthday’s many of you know I have been battling the migraine issues again, and I am awaiting an appointment with a neurologist in April.  Not that I have wanted to wish March away but leaving the winter behind and finally getting the opportunity to find some answers for my headaches I will be glad to say good-bye to March (Madness.)

April looks exciting to me as the Cleveland Indians return on April 1st, for another fun season.  Although I am hoping for a winning one, I just enjoy the boys of summer, and I will not get into the politics of the game and players!  So let’s play ball!  Peanuts anyone?

In addition to baseball, newclevelandradio.net will be introducing a new show with local musician, comedian, and writer, Charlie Wiener.  Charlies is my favorite writer, and I am excited to say we will be discussing his books, his characters, who they truly are or are not and ask you our followers to read, listen and participate.

Also in the month to come, CARE NOTES with Doug Wilber from Cherished Companions returns.  New episodes on home care for the elderly, special needs, or even good old everyday assistance.  We have touched on this message in the past with so many of us living a fair distance from our loved ones, or unable to assist, businesses like Cherished Companions are a necessity, but they tend to do it as an award-winning organization.

Senior Moments will be returning as well, no official date has been set, but I understand Bradley and Heather Greene have a lot of new topics to cover as well as hear what is important to you.

My life is a blessing despite my migraines.  I am working with a variety of very interesting people, and every show delivers a message of hope with smiles, hugs, and friendship.  If we cannot provide a hand in person, we hope we are doing so virtually.

Our podcasts are now available on Spotify if you search the name of the podcast it will pop up for you or go to the page of the show to follow the link.  http://newclevelandradio.net/podcast-replays/

Happy Spring and let’s continue to support each other in harmony!

 

Difficult Roads – Beautiful Destinations

I have just begun reading, American Stories, by one of my newest favorite authors, Charlie Weiner, aka, K. Adrain Zonnerville.  It always takes me a chapter plus to get mesmerized by his storytelling and descriptions of life as seen and approached by his characters.  This morning, waking early, as usual, I picked up the book and began my day reading.  I stopped at the point when the main character identifies that she is a collector of sorts.  She collects stories!  I realized at that moment in time why this book as well as the sequel that I read first, speak to me.  I too am a collector, not of stories, but of people.

 

Don’t get nervous; I am not collecting people and keeping them bound up.  I am collecting people, like you, and me and encouraging them to live free, sing, dance, and express themselves in the medium that provides them joy.  I am not a Pollyanna and do not expect that happiness means never feeling sad, angry, unappreciated, or any negativity.  What I do expect at least from myself is to face each obstacle with as much positive energy to move around it or through it when the Wonder Woman in me pushes onward.

 

I have spent the better part of my almost 69 years trying to be like you, and I now know, I want to be me.  I once believed in the lyrics sung by Frank Sinatra, “All of me Come on get all of me Can’t you see I’m just a mess without you…”  Spending one’s life trying to fit in when you feel like the square peg in the round hole, is not living.  However, lessons can be learned, and one day you may wake up and become a collector of sorts.  As I gather new friends and revive relationships with old friends, I appreciate how precious life is.  It is a gift to follow our journey and share our experiences.  We are all guides in this amazing universe.

 

Although Carrie, the main character in American Stories may be dying, in reality, she is alive.  She teaches us that death does not have to destroy; it can be a lesson that teaches us how to fulfill dreams and appreciate each other.  By taking one step in front of another, we can create a path that provides us joy as we journey forward.

 

Join me here at newclevelandradio.net as we continue to podcast and provide you with opportunities.  Let us become empowered to appreciate our strengths!

It’s a New Year with Some New Podcasts

2019 will be bringing you some new podcasts as well as a return of, Senior Moments with Bradley & Heather Greene.  We are waiting with great anticipation to welcome them back after a hiatus.

Katie O’Toole Smith will be joining newclevelandradio.net, sharing the message that “all things are possible!”  It’s more than a saying or a spiritual belief.  “If you give up it means you never tried,” and with the support of others, there is no reason not to try!  (First show is scheduled for Thursday, February 14, 2019, @ 6 pm EST)

Melinda Smith will share thoughts on positivity and not in a cheesy condescending way, but woman-to-woman, person-to-person.  It’s not about right or wrong; it’s about facing challenging and creating new opportunities.  As Helen Kellet stated, “Although the world is  full of suffering, it is also full of the overcoming of it.”  (First show is scheduled for Monday, February 11, 2019, @ 6 pm EST) MY HEART MOJO

It is this poem by Edgar Guest that my pops repeatedly quoted that encourages me to face each challenge as an opportunity!

Somebody said that it couldn’t be done
But he with a chuckle replied
That “maybe it couldn’t,” but he would be one
Who wouldn’t say so till he’d tried.
So he buckled right in with the trace of a grin
On his face. If he worried he hid it.
He started to sing as he tackled the thing
That couldn’t be done, and he did it!
Somebody scoffed: “Oh, you’ll never do that;
At least no one ever has done it;”
But he took off his coat and he took off his hat
And the first thing we knew he’d begun it.
With a lift of his chin and a bit of a grin,
Without any doubting or quiddit,
He started to sing as he tackled the thing
That couldn’t be done, and he did it.
There are thousands to tell you it cannot be done,
There are thousands to prophesy failure,
There are thousands to point out to you one by one,
The dangers that wait to assail you.
But just buckle in with a bit of a grin,
Just take off your coat and go to it;
Just start in to sing as you tackle the thing
That “cannot be done,” and you’ll do it.

STOP ASKING WHY!

Please do not ask someone why they are anxious or depressed, often they cannot provide themselves with an explanation so why assume they will be able to communicate with you?  Anxiety is normal it is part of the flight or fight process.  Without a touch of anxiety, we could place ourselves in harm’s way walking up to roaring Lion or crossing the railroad track as a train comes towards us at full speed.  However, anxiety that produces dread for seconds, minutes or longer can interfere with our normal routines.  I know I went through this five years ago.  Up until that time I pushed and prodded through often with tears and mood swings blaming it on trivial things like a broken nail, I gained a few pounds, or I was not included in an invitation.  Oh whoa was me!  However, those situations were just the triggers, they weren’t the reason, and sometimes we never figure out the whys!

 

Anxiety can affect us all in different ways including irritable bowel, obsessive-compulsive needs, and migraines, just to name a few obvious ones.  In my case IB and Migraines are my malady and recently (over the past few weeks) I have had an increase in Migraine attacks along with this on again, off again of foreboding.  My fear is my anxiety will deepen and take me into depression and I won’t and can’t have that as part of my journey.

 

The series that I am planning for 2019 will not only help me face the demons that invaded my thought pattern, but it will bring me closer to others while I share my story I will listen to theirs.  It is only in this common thread of true and open communication that we can face this disease head-on.  Yes, anxiety and depression by medical terminology are diseases, and although they do not need to be terminal without support, understanding, and acceptance, for some, it is life-threatening.

 

This week has been difficult despite the love, friendship and support of family and friends.  However, please know there is still a brewing demon called anxiety living within in me, and I must become more intentional in my thoughts and living to extinguish what is not needed for survival.