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Archive for April, 2010

By Shannon Penrod

I opened my email tonight to see a lovely message that a friend forwarded telling me that our local YMCA is doing a program for kids about gardening.  My friend sent it to me because she knows that I am really into gardening and this is just the kind of event that I would never dream of missing with my son.  But I will miss this event, because it is at my local YMCA, the scene of the worst discrimination my son has had due to his Autism diagnosis.  Shocking, I know, but true nonetheless.

A little more than four years ago my husband and I joined the local YMCA.  We had big plans.  We were going to work out, feel better, and feel closer to our community.  The date was January 2nd.  I remember because it was part of our New Year’s resolutions.  We attended for a ten day span and everything was going great.  We would put our son in the Kindercare and he was also loving it.  We had concerns about our son’s behavior because of some things we had observed at home but everything seemed to be okay at the gym.

On the 11th of January we had our appointment with a developmental pediatrician who diagnosed Jem with Autism.  The next day I went in and spoke to the Director of the Kindercare and disclosed the diagnosis.  She was very sweet and held my hand and told me everything was going to be okay.  It wasn’t.  In fact, it was a quick descent into every newly diagnosed mother’s nightmare.  

Suddenly, every time Jem blinked I was paged.  I never got more than ten minutes of exercise without interruption.  The hours I could bring him were diminished as one of the workers said she no longer wanted to work with my son.  No, I’m not kidding.  I even brought in a behavioral therapist to work with the staff.  Nothing worked.  They fed him pretzels, despite the fact he was wearing a tag that said “Do Not Feed!” and then lied about it.  I would never have known if one of the workers hadn’t followed me to the parking lot to tell me truth.  Within weeks I got a phone call informing me that my son would no longer be welcome at Kindercare.  So much for everything being okay!

I didn’t let it go.  I wrote letters, I made phone calls, in the end I was told that they simply were not equipped to deal with children with disabilities.  I remember saying what about a kid in a wheel chair, wouldn’t they make accommodations?  The answer was a shocking, “No.”  They told me in no uncertain terms that they were not prepared to deal with disabilities and at that time were not looking to remedy the situation.  I remember asking what the “C” in YMCA stood for.  The woman told me, “Christian, of course!”  I  believe I said something not very nice about it only standing for capable.

Of course the YMCA isn’t the only place to discriminate against my son, but their ignorance robbed us of so much more than a place to work out.  My view of the “C” word was badly damaged by their thoughtless behavior. I am a Christian, but I have no desire to be associated with the brand of Christianity my local YMCA was practicing 4 years ago.  I find it ironic that when we needed help a few years ago to pay for a therapy bill, we were referred to the Jewish Free Loan Association.  Despite the fact the we are not Jewish they lent us all of the money we needed, interest free.  That’s the kind of Christianity I would like to be associated with.

I don’t know whether we’ll go to this gardening workshop.  Part of me would like to invite every parent of  child with a disability within a 60 mile radius to come and bring their kids.  The other part of me doesn’t think the YMCA deserves to be visited by such wonderful and courageous children.  And then there is the whole concept of turning the other cheek.  I will happily turn my cheek, but it is yet another thing to ask me to turn my child’s cheek.  I don’t think I’m there yet.

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By Shannon Penrod

This week marks the 17th anniversary of my father’s death.  He died just two weeks after his 56th birthday.  My Dad was a remarkable “self made” man.  Born during the depression to a coal miner and a woman already in her 40’s with four older children, my father was probably not a much prayed for baby.  Times were hard. When my father was four his father died of a heart attack.  The family wasn’t just poor, they were dirt poor.  My dad would tell stories of not having shoes until he was over the age of ten.  There was never enough food.  When he was ten he got his first job as a paperboy.  When he got his first paycheck he didn’t go to five and dime and blow it on candy.  He bought hamburger, macaroni and tomatoes and made himself a goulash of sorts.  Til the day he died he loved goulash, he would savor every bite and tell the story of being a skinny ten year old eating goulash paid for with his own money.  That same year my father had a spiritual awakening of sorts.  He was raised in a very strict “God will smote you!” religion that taught that the movies played at the local picture show were of the devil.  So my father had never seen a movie.  At the age of my father went to the Eldon Opera House to see his first movie and that changed everything.  He wrote in his diary that watching that movie was so wonderful that it couldn’t possibly be of the devil.  He disavowed anything having to do with church and decided that he wanted to work in the movies. I would give my eye teeth to know what film he saw that night, but he could never remember.

Through his teen years my Dad worked and he played sports.  He was a brilliant basketball player and an even better baseball player.  As he was leaving high school he was offered an opportunity to play on a farm team of a major league team.  He said no.  He didn’t want that kind of life.  He wanted to be married, to my mother, and to raise a family.  So instead he joined the Airforce.  First my sister was born, and then while my Dad was stationed in Puerto Rico, I was born.  My Dad left the Airforce and started a career in radio in time for the birth of my brother.  His career in radio, led to a career in television.  Simply put my father was a television engineer.  Ultimately he was a technical director for educational programming.  He loved  live broadcasting and he watched every television program and every film as though he were technically directing live.  We’d be watching ROOTS and my Dad would say “Did you see that shot?  Did you see that continuous shot? That was beautiful!”  or “Did you see how they cut away too soon?  You have to establish the shot, don’t be in such a hurry.”  I would always look at him like he was crazy.  What the heck was he telling me for?  It was like he was training me for a job I wasn’t the least bit interested in.  What was that about?

My Dad worked on so many things, had so many accomplishments that I couldn’t possibly begin to fit them all here.  But most importantly, he was a great Dad.  When all of my friends, except for me, were cast in the high school production of You’re a Good Man Charlie Brown my father arranged for me to take acting classes on the weekend at the professional theatre company that was 30 miles away.  Those classes were $200, a small fortune back then.  My father, who loved sleep as much as goulash, got up every Saturday morning to drive me to acting class.  While I was there he said he would just go into the network and do a little work.  It was years later that I found out that he had bartered his editing services to the theatre company in exchange for my tuition.  So while I was in acting class, he was working off the bill. I consider myself lucky to have known such great man and to have had such a wonderful father.

One week after my father dropped me off for my freshman year of college he was rushed to the hospital in intense pain.  Emergency surgery revealed colon cancer that had metastasized to all of his major organs.  They told my mother he had 2 months to live and to get her affairs in order.  They didn’t know my father. 

He fought the cancer and survived only to suffer a stroke four years later.  The stroke changed my father.  He wasn’t the same person he was before.  He had been brilliantly intelligent before the stroke.  After the stroke a simple ATM machine could frustrate and overwhelm him.  He lost the ability to do his job.  At the age of 47 he was disabled for life and had to relearn to communicate.  The last ten years of his life were hard, people all around him expected him to be who and how he was before the stroke.  He couldn’t remember who that person was. 

Still, my father worked to be useful, and struggled to understand the world around him.  There are so many times when I look at my child and watch him fight to overcome Autism that I see my Dad in those last ten years.  My son and my father are a lot alike, they are both fighters and they both have my respect and my unwavering love.

When my father died it was a shock to all of us.  I think we had all begun to believe that he was invincible.  He wasn’t.  When I think of all of the things that have happened in the last 17 years it is hard to believe that my father hasn’t been here.  The grandbabies and the great grandbabies, ahhh, he really would have loved them all.  But each of them carries a piece of him that is strong and visible and that is a comfort to me.

For me, I think of my father every time that I sit down to edit something.  The career that he had spent years training me for finally caught up with me a few years ago.  My father knew what I didn’t know, that I am a storyteller and I would never be satisfied until I could tell my stories visually.  That means editing. Lucky me for me I was trained by a master.

I no longer miss my father the way I used to.  Instead I see him all around me.  I see him in my child when he sleeps with his hand over his head like my Dad did.  I see him in the face of my nephew.  I feel his pull whenever I see a silver dollar.  I hear him as I edit, and it has proved to be enough; for now.

Norman Penrod

April 8, 1937-April 22, 1993

Gone but Not Forgotten

Shannon Penrod is the host of Everyday Autism Miracles a live talk radio show about Autism.  The show airs every Friday at 2pm Eastern time on www.toginet.com.  For more information or to download the FREE podcast visit  www.toginet.com/shows/everydayautismmiracles.  You can also subscribe to the free podcast on iTunes.

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by Shannon Penrod

It’s happened to all of us.  We mean well, but sometimes things come out of our mouths that are criminally stupid.  The worst is when the utterer doesn’t even realize the gaffe they have made, so they just keep on.  It’s so bad that it sometimes becomes funny.  Sometimes it’s hard to laugh about it in the moment, but later a really bad faux pas can provide an element of humor. 

Like the school official who at a reception the night before my son’s first ever day of preschool decided to tell me in great detail why they make all employees at the school clear a finger print check. She gleefully told me the change had come after that one custodian years ago kidnapped that poor unfortunate child…. No, I’m not kidding. Picture me listening to this and having a complete mental breakdown.  Who tells a mother such a story on the night before the first time she is ever going to let her kid out of her site?  And she wasn’t trying to upset me at all, she was trying to put me at ease by telling me how it couldn’t happen, because everyone had been finger printed.  Because we all know that only people with a prior record ever work at schools, and once having been finger printed no one would ever dream of committing a crime.  I don’t think I slept for a year.  But I can laugh about it now.

A friend of mine recently lost her brother to a particular kind of cancer.  It was a bad situation, made worse by the good friend who called repeatedly to give their condolences by repeatedly and graphically talking about how there was no more painful death than this particular kind of cancer.  Even after my friend asked him to stop, he kept on saying, “Jeez, I feel so bad, you have no idea how excruciating that death is…”  What do you say to that?  Thank you, I feel so much better now that you’ve put it that way?”

Of course with Autism there is a never ending list of stupid things that people say to us.  Like the Doctor, yes, I said DOCTOR who insisted that there was no gluten in white bread.  I patiently explained to the Doctor that gluten is found in all wheat products.  She nodded and told me there was no wheat in white bread.  To which my husband said, “What do you think they make white bread out of?  White?”  Needless to say, we never went back to that Doctor.

Then there was the woman who when I told her my son had Autism asked me if he could play the piano.  At the time he had not yet started lessons, so I told her he didn’t, but asked why she wanted to know.  She blithely replied “Well with Autism some of them are idiots so they can play the piano real good.”  There were so many things wrong with the statement that I didn’t even know where to begin.  I started to explain the term idiot-savant to her and then decided that life was too short to waste on her.

I think it’s better to laugh at the stupid things say than to get angry about it, which is why I am doing a show tomorrow with the topic “Stupid Things that People Have Said to Me About Autism.”  Have a story you want to share? Call in at 877.864.4869 between 11am and Noon PACIFIC time.  If you just want to listen you can do so  by going to www.toginet.com tomorrow at that time or you can download the free podcast starting on Saturday by going to www.toginet.com/shows/everydayautismmiracles or by going to iTunes and entering Everyday Autism Miracles in the search box.  It should be worth a laugh.  I hope you call in or listen in.

Shannon Penrod is the host of Everyday Autism Miracles on Toginet Radio.  The show airs every Friday at 11am Pacific time at www.toginet.com.  Free podcasts of the show are available at www.toginet.com/shows/everydayautismmiracles and on iTunes.

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by Shannon Penrod

In case you didn’t know April is Autism Awareness Month.  For me every month is Autism Awareness Month, because I am one of the millions of parents worldwide who is raising a child with an autism diagnosis.  It’s an interesting  journey that is frequently made tougher by a lack of information among the public.  So here are the five things I wish everyone knew about Autism:

1.  One size does not fit all with Autism.  In fact, it is better to think of it as “Autisms” instead of “Autism”.  Children on the Autism Spectrum have a wide variety of symptoms, sensitivities and capabilities.  Try not to assume that the label Autism means they are capable or incapable of doing anything.  Some children with Autism can’t bear to be touched, others require frequent touching to stay engaged.  Don’t assume, ask questions and be willing to look at those diagnosed with Autism as individuals with individual needs.

2. Autism is not the result of bad parenting.  I’m sorry I even have to say that, but I do.  There are still people who think that Autism is caused by bad parenting, it’s not.  However, it is true that superlative parenting, via ABA Therapy is helpful in diminishing or eradicating  Autism behaviors. Currently most insurance companies don’t pay for ABA Therapy, even with the new Health Care Bill, which is why it is so important that individual states pass legislation to make insurance companies accountable.

3. Autism is treatable and in some cases it is possible to recover from Autism.  There have been countless cases of children diagnosed with Autism at an early age who, after extensive early intervention, later tested as being neurotypical.  There are video tapes of many of these children that clearly show autistic behaviors at an early age and their progress has been scientifically documented.  It’s not a rumor, a false hope, snake oil or urban legend.  There is hope and studies clearly show that the earlier the intervention the greater the possibilities in outcome.  So if you have or know a child that you have concerns about you should not take a “wait and see” approach.

4. It is no longer politically correct to refer to children as being “Autistic”, the correct term is that they “have Autism” or “have an Autism Spectrum Diagnosis”.  You can even say that they are “on the Spectrum”. Stop and consider that we would never refer to a child with Cerebral Palsy as “Palsic”, or a child with Leukemia as “Leukimic”, we simply say they have the disorder, it should be the same with Autism.

5.  Children on the Autism Spectrum and their parents need your help.  There are charities raising money for research and to fund treatments, if you can give generously.  I highly recommend Autism Speaks and ACT Today.  If you know a child with Autism, ask the family what kind of assistance they could use.  It could be something as simple as a regular play date that could make a difference in a child’s life.  These children are worth the effort, please offer them what you can.

Shannon Penrod is the host of Everyday Autism Miracles on Toginet Radio.  The live talk radio show airs every Friday at 2pm EST on www.toginet.com  Free Podcasts of the shows can be downloaded at www.toginet.com/shows/everydayautismmiracles and on iTunes.

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by Shannon Penrod

Friday is World Autism Day.  In honor of the day Autism Speaks has asked us all to “Light it up Blue”.  The “it” to be lit blue is up to each and every one of us.  The Empire State Building will be blue, Kingdom Tower in Saudi Arabia will be blue and my porch light will be blue.  It’s subtle, but the idea is pure.  This is something that affects all of us.

If Autism isn’t affecting you now, it is my sad job to tell you that it will soon. Whether it is your child or the child who sits next to your child, your friend’s grandchild or your bosses child, someone in your life is or will be dealing with Autism soon.  The statistics are staggering.  Conservative estimates have us at 1 in 100 children worldwide, 1 out every 70 boys.  Before you excuse these numbers with theories of misdiagnosis or bad parenting consider for a moment the disservice you do these courageous children who are fighting daily just to be a part of our world. 

Autism is real.  It’s not going away.  But there is help and there is hope.  This Friday please put your cynicism aside and offer the children and families that are on the front lines of Autism your support.  Find something to light up blue, whether it means wearing a blue shirt or sending all your emails in blue type, make the effort.  Because as Dr. Suess once said, “Unless someone like you cares a whole awful lot, nothing is going to get better.  It’s not.”

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