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Archive for the ‘advocacy’ Category

by Shannon Penrod

When A Child Dies From Autism…

Last week, on Mother’s Day, Mikaela Lynch’s parents experienced a nightmare that didn’t end.  Mikaela, a nine-year old with Autism, went missing.  For four days volunteers, family members and friends of the family searched for her.  During that Mikaela Lynchunbelievably difficult time, Mikaela’s parents would have been told that their child did not qualify for an “Amber Alert”, which would have mobilized more help and created more media coverage.  Amber Alerts can only be used when there is evidence that the child has been abducted. Children with Autism who are known to “elope” do not fit that criterion, despite the fact that they may be facing life threatening challenges.

The Lynch family was also subject to some negative media barbs wondering why they hadn’t watched their child more closely. As if you can ever watch a child with Autism who elopes closely enough…as if these poor parents could transcend the human necessity of blinking, getting a drink of water or simply looking away for a split second.

I wish there were a happy ending to this story, that Mikaela had been found alive and that her parents could have sighed with relief and held their child in their arms, smelled her hair and felt her breathe.  That isn’t the end to this story.  Mikaela’s body was found on Wednesday, in a nearby creek.  For the Lynch family all that is left is to mourn.  For the rest of us, we have the responsibility to learn from this tragedy and hopefully prevent the next one…because if we don’t, more children with Autism will die.

I know what you’re thinking.  Autism isn’t fatal.  Children don’t die of Autism.  I hear this a lot.  When someone tries to explain to me why there are more children affected with Autism than Cancer, AIDS and Juvenile Diabetes COMBINED but it still receives only a small percentage of the funding these other medical issues garner, this is often the excuse I hear.  “Autism can be devastating to a family, but let’s face it…it’s not fatal.”

Tell that to Mikaela Lynch’s parents.

This isn’t a question of bad parenting.  A recent study estimated that over 50% of children on the Autism Spectrum will at some time engage in something called “elopement.”  No, they aren’t talking about running off to Niagara Falls to get married.  They are talking about when a child runs or walks away without regard to safety or rules.  Every parent who has ever had a toddler knows what this looks like – the child just takes off.  It’s scary for any parent, at any age.  Imagine for a moment what it would be like if your child never grew out of that behavior? Imagine feeling as though you could never let your guard down, not now, not ever.  It is unimaginable, isn’t it?  For a parent with a child on the spectrum it can feel that way sometimes.

The horrible truth none of us likes to think about is that it is impossible to watch our children 24 hours a day, 7 days a week.  We can try, we can do our level best, but it is impossible.  Every year we hear about more children with Autism who go missing from their homes.  Some are found safe, many are not.  What follows is astonishing to me.  As in the case of the Lynch’s, the media and the public often point fingers at the parents.  If they knew their child was an eloper, why didn’t they keep them safe?  This is the rationale of someone who doesn’t want to face facts.  Until we make sure that all families facing these issues get help and support, we are ALL responsible.

The good news is there is support we can give families to help stop their children from eloping.  It takes time, and systems have to be put in place to keep the child safe while they are getting the proper intervention.  It takes money.  It takes trained specialists.  It isn’t something an exhausted parent can do by themselves.  We need to stop acting like they can.

If you or someone you know has a child who elopes, don’t wait and hope that it will get better.  There are organizations that can help you.    Call your local Autism Society and ask for help.  Contact a TACA parent mentor.  Apply for an emergency grant from Autism Care and Treatment Today!  Don’t wait.

If you are a grateful parent of a well child, and you are able to use your restroom, or step into the kitchen, or take a phone call without fear of losing your child forever, please, please, spread the word and support organizations such as the ones I listed above.

Lastly, send a loving thought to the Lynch family.  Their loss is immeasurable.

Shannon Penrod is the mother of a nine-year-old with Autism.  She hosts Autism Live, an interactive web show devoted to giving free information about resources and solutions in the Autism Community.  Ms. Penrod makes the choice in her writings to capitalize the “A” in Autism, despite the fact that it is not grammatically correct.  In her words, “Trust me, when someone tells you that your kid has Autism…it’s a capital A.”

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Teachers are my heroes.  Okay, not all of them.  There are some people who should not be teachers.  If you’ve been watching the news lately this has been clearly brought home.  But, in my experience, the vast majority of people who dedicate themselves to educating our children are passionate, caring people who genuinely care about enriching children’s lives.  But even great teachers need good support and training or they can’t be truly effective in today’s classroom.

As a parent of a child with an Autism Spectrum Disorder, I have been enraged, saddened and horrified by some of the stories of how teachers have been attempting to cope with the ever-growing presence of Autism in their classrooms.  In December there was the mortifying story of the teacher who placed a fourth grader with Autism into a duffel bag as form of punishment for his challenging behaviors.  The mother was called to the school and discovered her son…in a duffel bag.  The good news is the child was alive.  We could spend an eternity talking about all the things that are wrong with putting a child into a duffel bag for any reason, but I think we have to stop for a moment and think about how you arrive at thinking a duffel bag is a punishment solution.  It is an epic example of not having the skills, tools or training to know how to cope with challenging behavior.  With only a small amount of training and support that teacher could have known how to safely and effectively redirect that child’s behavior.

Even more recently there was the case of the teacher in Riverside County who was sending a student with Autism into a cardboard box as a punishment for his challenging behaviors.  The media covered the story and parents were appalled.  A cardboard box…really?  The school responded and while they did not defend the teacher, they defended the cardboard boxes.  The school has tried to create “safe environments” for students with sensory issues; a quiet place where they can take a moment to collect themselves.  This allows a child to regulate their states – before things get to a boiling point.  It is supposed to be something that prevents challenging behavior.  In order to work properly it has to be used before the challenging behavior occurs.  The teacher was not properly trained so she used it as a punishment after the challenging behavior occurred.  The exact opposite of how it was supposed to be used.  When a quiet place is used correctly you will see a dramatic decrease in challenging behavior.  It is a very specific intervention for a very specific type of behavior.  Because the teacher was doing the intervention wrong the student was engaging in MORE challenging behavior!  He needed a break and the only way he could get one was by misbehaving.  Talk about a mess.  Now you’ve got a child misbehaving, sitting in a box and there is no learning happening, all because the teacher wasn’t trained properly.  This is heart breaking to me as a parent because the fix is so easy, and had the teacher carried out this intervention properly her whole classroom would have run differently.

I look at the news and I hear the stories of districts spending money on “scream rooms” and other barbaric concepts simply to cope with challenging behavior.  It makes me crazy…as a parent, as a teacher, as a tax payer, as a person.  First of all I want to ask the Dr. Phil question…How’s that working for you?  If you put a child in a scream room and the child’s tantrums don’t decrease then you really haven’t helped that child, you just found a way to isolate them.  Wouldn’t it be better to give our teachers the tools and information to deal effectively with challenging behavior so ALL of our kids can get back to the business of learning?

One of the people I respect the most in this world, Dr. Adel Najdowski, is about to give a free webinar for teachers on how to effectively deal with challenging behavior in the classroom.  It’s free.  It’s online so there are no travel costs.  If you are a teacher who wants to do better I hope you will attend.  If you know a teacher who wants to do better I hope you will invite them.  If you are a parent I hope you will invite your child’s teacher, their principal and their school district.  If we truly want to educate our children we have to educate ourselves and our teachers.  Here is the flyer for the webinar, spread it around.  No child should be in a duffel bag, a cardboard box or a scream room.  Let’s get them in the classroom LEARNING!  If for some reason you can’t see the flyer contact support@skillsglobal.com to reserve a spot for the webinar.

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Dear Mrs. Obama,

As one mother to another I would like to ask you a huge favor…could you please change your porch light to blue for this Friday and Saturday night?  You see, this Saturday is World Autism Awareness Day and all over the world people and institutions will be shining a light on Autism by finding ways to “Light it Up Blue.”  My family will be stringing blue LED lights onto our condo balcony, but I have to be honest, your home is much more visible to the world audience.  Your help and support would be so appreciated.

My son Jem is seven years old, just a little younger than your girls.  He is a bright little boy who still believes in Santa Claus and the Easter Bunny.  He loves LEGOs and anything to do with space or robots.  He is just one of the world’s children who is living with Autism.  He is my hero.  I would never ask you for myself, but I will ask you for my son and for all of the children who are affected with Autism, could you please send a message to the world by lighting your porch blue for two nights?

You can’t imagine what it would mean to the children.  Thank you in advance, Mrs. Obama for understanding the importance of this small gesture.

Sincerely,

Shannon Penrod
Jem Miller’s Mother

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By Shannon Penrod

I have a seven year old who is recovering from Autism.  “Recovering from Autism”  this is the phrase that my husband and I adopted about nine months into our journey through Autism.  I didn’t want to call him “autistic”, it sounded final, it sounded harsh, it didn’t honor his spirit.  Like a lot of families we chose to say that “he has autism.”  It’s the truth and it pays homage to the fact that there is more to this little boy than just this one thing.  It was better, but it wasn’t enough.  I love words and I whole heartedly believe in the power of them.  I believe what you think becomes what you say, which becomes what you do and together they comprise how you experience the world.  I wanted to say something that would help our entire family to experience our journey through Autism with dignity and hope, so we began to say that Jem was recovering or actively recovering from Autism.  And yes, the decision to capitalize the “A” is a choice too.  If you live with this in your home you know that it warrants a capital “A”.

Okay, I know I will get mail from adults with Asperger’s and High Functioning Autism who will tell me that Autism is not something you need to recover from.  They like who they are and how they are.  They are offended that there is even talk about needing to recover from Autism. What’s to recover from? Hear me when I say – That is not the Autism I am referring to.  If you can read a blog, get offended by it, and feel the need to respond to it, then you aren’t being held back by Autism.  Unfortunately that isn’t everyone’s story.   My entire goal has been to recover my son from the “Autism” that didn’t allow him to speak, didn’t allow him to communicate or understand the world around him.  I am not trying to remove what is essentially him, his way of looking at the world, his interesting and unique way of seeing things…I prize those things.  I am fighting for him to be able to communicate those things to the world, the way that I see people with Aspergers and High Functioning Autism do.  Imagine the tragedy if Temple Grandin’s mother had not worked tirelessly to help Temple to communicate with the world!  What a tremendous loss.  When I speak of recovering this is what I am referring to.

I don’t know what causes Autism, but five years in there are many things that I do know.

1. It isn’t just Autism, it is Autisms.  Two children can both have a diagnosis and display vastly different symptoms.  If you know one child with Autism you should not assume that other children will be like them.

2.  In the wide range of Autisms there are many people who lead wonderful, productive happy lives.  On the opposite end of the spectrum there are children and adults who are incapable of connecting or communicating at all with the world around them. In between these two groups is where the vast majority of people with Autism fall, individuals who fight on a daily basis to communicate – to understand and to be understood. 

3. There is help for those who want and need it.  In some cases there is even recovery.

4. My personal definition of “Recovery from Autism”? – removing the obstacles which prevent a person from being able to communicate substantively with the world around them, so they can freely interact within the community of their choice.

Simply put, I don’t want “Autism” to stop my son from doing what ever he wants.  If he wants to be friends with a little boy he just met at the playground, I want him to be able to without “Autism” tripping him up.  If he wants to go to MIT and study rocket science, I don’t want stinky old “Autism” to gum up the works.  I want him to be who he is, but who he  is, is not his diagnosis. 

Daily we fight the part of Autism that takes him away from us.  We also fight the perceptions of the world about what they think Autism is and how they think my son should behave.  At the end of the day I don’t have a lot of fight left in me to defend my choice of words.  My son is recovering from Autism, everyday he gets closer to being someone who will walk through the world being able to do what ever he wants.  I’m good with that.

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by Shannon Penrod

Four years ago my son, who was 2 1/2 at the time, was diagnosed with Autism.  I remember being devastated by the diagnosis but feeling almost immediate relief.  I naively believed that if we knew what to call it we could find a way to fix it.  Like so many other parents I turned to the internet looking for answers, what I found didn’t comfort me it simply added to my confusion.  I wanted, needed a happy ending.  I wasn’t finding it.

Then one day I watched The View with Rosie O’Donnell, you remember back in the days when The View was worth watching, and they did an entire hour on Autism.  During the hour Rosie interviewed a boy who had “recovered” from Autism!  I didn’t know what to make of the word “recovered” but it didn’t matter, the boy was everything I prayed for my son.  He was intelligent, kind and he could hold a conversation.  I wept…and then I googled his mother.  I wish I could remember her name, but it went bye-bye on a sea of information about the treatment the boy had received.  The boy had intensive ABA therapy following the Lovaas method.  Now I was googling Lovaas.  What I found was confusing, there were articles saying he had helped children to recover, but there were other articles that said he was a quack, that his study had never been replicated, that he hit children!  This reinforced what our Developmental pediatrician had said to me, “Promise you won’t do ABA with this child, it will turn him into a robot!”  I was so confused!  The little boy on The View hadn’t seemed like a robot. 

I prayed for an answer.  I don’t usually talk about my spiritual life and leanings but I got down on my knees and asked God to help me to know about this ABA thing, maybe show me a family with a little boy who had gone through it.  The next day, my job sent me to a house with a little boy who was 2 years into an ABA program and flourishing.  The parents sent me home with reading material and I delved into the work of Ivar Lovaas. 

What I learned blew my mind.  In the 1960’s Lovaas took the concepts of Applied Behavioral Analysis and applied them to a group of children with Autism.  The results were stunning.  All of the children showed marked improvement and over half of them improved to the point where they were able lead their lives like nuero-typical children.  They didn’t require aides in school and they went on to lead productive lives with no major difficulties.  After months of research with no hope I was thrilled with a number like 50%.  I was excited, I was hopeful, I was on board.  I became a Lovaas groupie.  He was my Autism Superhero.

Whenever someone would say that Lovaas believed in corporal punishment I would rail and tell them to read the research. ABA is about providing reward, not punishment.  Lovaas is the one who clarified that punishment DOESN’T work!  When people would say that his studies had not been replicated I would stamp my feet and tell them their information was old…Lovaas’ studies have been replicated many times now.  When people would use the terms ABA and DTT indiscriminately as if they meant the same thing I would re-educate them.  DTT is an element of ABA, it is not the same thing.  It is like saying a steering wheel and a car are the same, they aren’t.  And most importantly, I fought for my child to get ABA in our home.  It was a battle that took a lot out of me, but it gave me back my son.  There are no regrets here.

Each year the ABA movement grows.  As more and more children improve, Drs., Teachers, Politicians and Parents are beginning to accept that ABA is the “gold standard” of treatment for children with Autism.

Earlier this week Ivar Lovaas died.  It is the death of a Superhero for my family.  The good news is that his work lives on through his students and through their students.  Five days a week we are visited by Superheroes and Superheroes in training.  They come to our house and work with our son.  In the beginning it was to get him to speak two words together.  Now they work with him on understanding and feeling empathy.  And by the way, there is nothing robotic about my child.  Tell him a fart joke and he giggles like any other 7 year old boy in the world.  This is a truly lucious thing.

The world will miss Ivar Lovaas, but his legacy is great.  Thank you Dr. Lovaas for giving us hope and more importantly for giving our children back to us.

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by Shannon Penrod

People ask me almost every day what the warning signs of Autism are.  I can be on the phone with my credit card company and as soon as they know that I do a radio show about Autism or that I am a mom of a child recovering from Autism they start asking about symptoms.  Waitresses ask me, people in line at Disneyland ask me, friends of friends call me – they all have the same question – How do you know when to be worried?  It’s a really good question.  And while there is no easy answer, there are some guidelines that can help you to know whether you should seek out a qualified medical opinion.

It’s important to note that if you have concerns you should talk to your Doctor as soon as possible.  Early intervention is one of the most important keys to helping children with autism  lead happy and successful lives.  So if you have concerns, don’t hesitate to get a qualified opinion.

Here are some symptoms that can be warning signs for Autism and should warrant a discussion with a qualified physician.  Not everyone who displays these symptoms will have Autism, but theses symptoms need to be addressed.

1. A child  over the age of a year displays little of no eye contact.

If your child cannot make eye contact or struggles to make and keep eye contact they should be seen immediately.

2. The child shows a delay or lack of speech for their age.  By one year of age they should be cooing, by 16 months they should be able to use at least one word to identify an object and by two years of age they should be  able to use two words together without repeating what someone else has said.    If the child is not demonstrating these skills they should be seen immediately.

3. The child does not respond appropriately to social cues.  The child  does not respond when you call their name, they show no interest in playing, they do not point at things to show  you something, they do not wave good-bye etc. these are all symptoms that require further inquiry.

4. The child loses any skill at any age.  If a child is talking and stops talking, or even if their language seems to diminish this is a cause for immediate concern.

I can not say enough that it is best to follow your instincts.  If  you feel that there is a disconnect in communication with your child take them to a qualified physician who can recognize the signs of Autism.  I keep saying “qualified” because the vast majority of parents that I meet with a child on the Autism Spectrum report that at least one doctor told them everything was okay before they were ultimately diagnosed with Autism.  That was certainly our case.  Because our son was speaking in full sentences I stopped worrying about Autism.  Then when his language began to slowly deteriorate my concern spiked.  Our pediatrician patted my hand and told me I was overreacting, that our son would soon be speaking in paragraphs.  She was wrong and we lost six months.  By the time our son was diagnosed he was considered non-verbal and we had lost more than six months of precious time when he could have been gaining skills instead of losing them.

Make sure that your pediatrician is knowledgeable and if you aren’t sure don’t waste time – get a second opinion.  Remember that time is of the essence when diagnosing Autism.

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By Shannon Penrod

You’ve probably heard of  six degrees of separation, the idea that supposes that we are all only six people away from anyone on earth.  I prefer the expression of being only “three phone calls away from the president”.  This is great party conversation, “Which one of your friends would you call first if you needed to get to the president in only three phone calls?”  It’s one of those riddles that can keep you up late at night.  Who would you call?  It’s a fun little brain teaser and for most of us not something we need to actually attempt.  But the other day in what can only be described as an “I love Lucy moment of clarity” I had an idea, an idea that refuses to go away.   I find myself in the unique position of needing to figure out who my three phone calls are – but not to the President, to the  First Lady!

I am a Mom, more poignantly I am an “Autism Mom”.  I am one of the millions of Moms around the globe who wakes up every morning and immediately steps on to the front lines of the war against Autism.  I am one of the lucky Moms, because in my home we are winning the battle.  I say that with pride, jubilation and guilt because I know that there are Mom’s all over this wonderful country who haven’t had access to our miracle.  Even worse,  there are people all over the world who don’t know what is possible when it comes to treating Autism.  They don’t even know what to ask for. 

Those of us who have seen the return of our children, who have seen the progress that is nothing short of miraculous, know that a change must come.  We know that schools are desperate for information that can change the face of Autism.  We know that it’s possible to rescue our children, we just need the right person to see it and believe it with us.  I believe that person is Michelle Obama.

So I had my “Lucy” moment and thought – “Invite the First Lady to see what’s possible!”  And I instantly knew where I want to take her. The Center for Autism and Related Disorders is celebrating its 20th Anniversary this year.  As part of a celebration of 20 years of research and recovery there will be a gala event in Los Angeles on September 25th.  It is now my personal goal to get Michelle Obama to willingly attend this event so she can see first hand what is possible when we give our children with Autism what they need.  Of course the President is welcome as well, but I believe that a woman with a fire in her belly is capable of anything and that is who I believe Michelle Obama to be.

Now I only have one problem!  Who are my three phone calls?  I never thought I would have to do this for real!  I definitely need some help.  If you know someone who knows someone…be one of my phone calls and help me to persuade the First Lady to attend this important event!

I frequently think of how polio was viewed in my mother’s childhood  versus today.  I hope that someday we can look back at Autism and think of it as something that a different generation had to cope with.  Wouldn’t that be remarkable? 

Shannon Penrod is the host of the weekly radio show Everyday Autism Miracles on www.toginet.com  Free podcasts of the show can be downloaded on the show page www.toginet.com/shows/everydayautismmiracles or on iTunes

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