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Archive for the ‘Activism’ 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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By Shannon Penrod

Just when I think I have the food thing figured out I hear God laughing again.  He laughs at me a lot.  I eat really healthy, my child eats really healthy, I can’t speak for my husband but let’s just say he eats healthier now than he ever has and leave it at that.  My child willing eats vegetables, even requests them, so I must be doing something right.  Still….I read and wonder.  I am religious about having my son on a GFCF diet (Gluten Free/casein Free for those of you outside the Autism community), he is also free of sugar and artificial sweeteners.  This is not a some time thing, it’s an all the time thing.  I’m the crazy woman at the birthday party with the weird-looking cupcake and the sliced beets on my kid’s pizza.  So you would think that I am crazy organic too and great friends with a group of sustainable farmers.  Yeah…not so much.

I don’t know if the rest of you have noticed, but organic stuff is expensive.  I’m talking EXPENSIVE!  I used to care more about organic before the whole Autism thing came to live at my house.  But Autism is even more expensive than organic vegetables so it won the fist fight.  Now I’m thinking that may have been a bad choice.  A new study has come out that suggests that ADHD may be linked to pesticides.  Apparently pesticides are designed to disrupt something in the bug’s neurotransmitter system.  I didn’t know that, I thought it just killed them.  That probably sounds stupid, but I never thought about it before.  I just figured it choked the bugs somehow that wasn’t great but wasn’t all that harmful to humans.  You’re talking to the woman who used to run into the fog made by the DDT truck when she was a child.  Those pesticides probably killed the neurotransmitters in my brain that allow for higher thinking about pesticides.  I digress.

If this pesticide disrupts the bugs neurotransmitters and we eat vegetables that are sprayed with it doesn’t it stand to reason that we would see a BUNCH of people having neurotransmitter issues?  Oh, yeah, we have. Hmmmm.  How about that skyrocketing rate of Autism, ADD, ADHD,  Depression, BiPolar disorders and the list goes on.  So I am arranging to have an organic farm co-op bring us a box of food every week.  I don’t see how I can’t.  It’s not even that expensive, maybe $10 more a week than I would have spent, but I would have spent that in gas driving to 3 different stores.  It’s an adventure.  I’ll let you know how it goes!

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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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My son was diagnosed with Autism 5 years ago.  At that time I tried to wrap my head around the fact that my life was going to be significantly different from how I had imagined it.  Instead of taking day trips to the zoo, learning how to ride a tricycle, or registering for T-ball my son and I were going to learning the ins and outs of intensive ABA therapy.  I attempted to accept it with grace; if it was what my son needed we were going to do it.   What I didn’t know, what I hadn’t counted on was that helping my son was only going to be half of my job.  The other half was to educate the world around him about Autism.  For me, this was harder, crueller than I could ever have imagined.

I remember in the early days of our Autism journey, standing in line with my son at the bank, or attempting to.  The man in front of me was not happy with me or my child.  My child was moaning, attempting to escape and intermittently rolling on the floor when I could no longer restrain him.  The longer the wait, the worse the behavior, and I was worn out.  The man kept turning around and giving me dirty looks.  I wanted to cry… for all of us.

It’s not easy to listen to a child moan for twenty minutes while standing in line.  I know this all too well.  But I knew that in 20 minutes the man would be able to walk away.  I wouldn’t be walking away and I needed him to at least understand.  So…I picked my son up off the floor for the 100th time and began to talk loudly to him.  I told him what a good job we was doing.  The man in front of me hrumphed with derision.  I continued, I loudly told my son how difficult it is to stand in line, how frustrating it is, that I too would like to cry and lay on the floor.  I told my son that it was hard for adults so I couldn’t imagine how hard is must be for a little boy with Autism.  I told him that I knew he was just trying to make sense of a world around him that was full of too many colors, too many noises; a foreign world where he couldn’t speak the language or understand it.  I told him I knew that he was scared, but that mommy would never leave him; that I would always be patient, even when it was hard because that’s what he deserved.  I watched as the man’s shoulders changed shape in front of me.  Eventually he turned and looked at me offering a silent sheepish apology with his eyes.

I cried the whole way home that day because I knew it wouldn’t be the only time a stranger would look at my son and make a judgement based on ignorance.  I thought about how hard my child was going to have to work in order to do things that most of us take for granted, like being be able to look at someone and say, “Hello.” And the kicker?  If he worked tirelessly to accomplish this, for him, heroic deed his reward would a simple, “Hello.” back.  The respondent would have no idea how hard-won the exchange had been.

Five years later, I continue to be shocked by what the world does not know about Autism.  People tend to have an image in their heads of what they think Autism is and they tend to apply that to anyone who has Autism.  Unfortunately, this is tragically inappropriate.  Autism presents differently in everyone it affects.  There are some children who can’t bear to be touched, others who need frequent touches in order to stay calm and focused.  Shockingly there are still some people who think Autism is not real and simply a function of bad parenting.  Ignorance is bliss apparently, but it can’t last long.  As more and more children are diagnosed in epidemic proportions it is only a matter of time before such ignorance is faced with the stark reality of truth.  If Autism does not currently touch your life, it will soon.  Statistics promise it.  I wish it weren’t true.  Everyday I pray that brilliant unbiased minds continue to search for all of the potential causes.  While they do that I continue to plod along doing my job, trying to make a world where my son and children like him are seen for the true heroes they are.

World Autism Awareness Day is April 2nd this year.  On that day I hope you will participate.

Things you can do to raise Autism awareness on April 2nd:

Wear blue all day

Changing your porch lights to blue for the evenings of April 1 and 2

Make your FaceBook Profile picture blue!

Donate to Autism Speaks or ACT Today!(They currently have an initiative to help children with Autism whose parents serve in the military)

Show compassion when you see children and adults with behavioral issues.

Visit Autism Votes to find out how you can urge your representatives to further insurance reform so Autism treatments will be covered in every state.

Urge the school administrators in your area to participate in Skills for America to receive grants to help educate children with Autism.

Ask questions…there may not be an answer, but if we keep asking the questions the answers will come.

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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

I should start by saying that I haven’t seen Waiting for Superman, the hit documentary that details the decay of our modern public education system.  I can’t bear to see it.  I saw clips on Oprah when she featured it and I couldn’t breathe for a full day.  It all seems so overwhelming.

I volunteer in my son’s school on a regular basis, but until recently I only spent time in his classroom.  I had already made the decision to offer to direct a play at his school when I heard about Waiting for Superman, but I would be lying if I didn’t admit that it made me follow through.

For the last two months I have been making semi-regular visits to the fourth grade of my son’s school, rehearsing the Women in History Theatre project with them.  I started this project out of a sense of obligation.  I owed it to the school.  They’ve been really good to us.  We’ve had some amazing support for our son; teachers who have cared deeply, a principal who has been amazing and a community that has embraced our child in all of his wonderful quirkiness.  Did I mention an aide who has basically become a member of our family?  Yeah, I owed a huge debt.  So, I decided to step it up in the way that I felt comfortable.  I’m not good at selling cookie dough.  I don’t remember to cut the box tops off of groceries.  I’m not even good at going to PTA meetings, but I can direct a play so that’s what I offered to do.

We are still three weeks away from the two performances we will be doing for friends and family and it is abundantly clear that no matter what, this is an experience I will never forget.  There really aren’t words to describe how rewarding this project has been.  Imagine getting to spend 2 hours a week with 100 sweet little sponges who get excited when you talk to them about the thing you are passionate about.  It’s a lot of fun.  It’s humbling.  It’s unbelievably rewarding.  I think if parents knew how wonderful it is to donate their time they would do it more often. 

So…I don’t know about Waiting for Superman, but it seems like your local school might need you, and from  what I’ve seen it more than worth it to show up.

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