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Archive for the ‘Autism’ 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

In the song Return to Pooh Corner there is a line that says…It’s hard to explain how a few precious things, seem to follow throughout all our lives… Peter Pan is one of those precious things in my family.

I have always loved Peter Pan so I was thrilled when a little over a decade ago I was invited to attend a special performance of the acclaimed Broadway version starring Cathy Rigby.  The performance was special because it was being filmed for the Arts & Entertainment network.  I went to the Theater expecting a magical evening and I wasn’t disappointed.  It took my breath away.  It was a bitter-sweet evening, as I watched in wonder and also watched all of the children in the audience.  I was in my late 30’s with a biological clock that ticked louder than Hook’s dreaded crocodile.  The evening was perfect…except that I longed to have a child to share it with.

As luck and prayer would have it, I did end up having a child a couple of years later and I was thrilled that the performance of Peter Pan that I had attended was available on DVD.  My child LOVED the DVD from the first time he watched it.  He danced around the room and would crow like a rooster, following Cathy Rigby’s every move.  It was a special joy to me that my little boy loved that particular version of Peter Pan.  It made my world feel right.

Then my son changed.  It wasn’t overnight, but a slow slide into nothingness.  My child stopped dancing, and singing and then talking.  He still loved that Peter Pan DVD, but Autism had come to live at our house and now his enjoyment was displayed in sitting quietly when nothing else would soothe him.  Whenever he was sick, and for a while that was often, the only thing that made him feel better was that Peter Pan DVD – the Disney version couldn’t do it, but Cathy Rigby could. 

As my son worked to regain language, one of the first things he verbally requested was “Peter Pan!”  My son worked tirelessly for years to overcome the more disabling aspects of Autism.  Through those years we moved a couple of times and at some point the Peter Pan DVD got packed away and was eventually forgotten.  My son progressed miraculously and all was right with our world.

Then last month we were invited to a special performance of Peter Pan, starring Cathy Rigby!  I couldn’t believe our luck!  I couldn’t contain my excitement.  I talked to my son on the way to the theatre and asked him if he remembered anything about the version of Peter Pan that he had loved as a child.  He didn’t really.  I was dismayed, but hopeful.  I knew he was going to love the show, whether he could remember it or not.

We sat in the Theater as the overture began and I held my breath, it was a full circle moment that had taken more than a decade, but I was finally going to be able to share the magic of such a wonderful show with my own child! There are no words to describe how truly fabulous the evening was.  My face hurt from smiling so much.  My child was riveted, transported, transfixed, enchanted, swept away and moved.  I was in heaven.  I drank in the show, and my child loving the show, like a starved woman at a banquet.  I could have stayed in that Theater in that moment forever.  I would have gleefully moved in if they had let me!  I should also add that my husband who had never seen the live show, but at one point had the entire DVD memorized, sat on the edge of his seat with a goofy grin on his face the entire show.  He loved it as much as any of the children which was just the icing on the cake.

After the show, when I would have told you it could not have gotten any better, we were invited to go backstage.  My little boy shook with excitement when Cathy Rigby came up to him and quietly filled his hands with fairy dust.  She talked to him and I worried that he was going to pass out.  Ahhh, the eye contact was something to behold!  It was the perfect end to a perfect evening and the lovely bookend to a relationship with a truly magical show. But, it wasn’t the end at all…

The next morning my son woke me up singing.  Please understand that before Autism my son sang all the time.  After Autism my son hummed all the time and eventually sang on the rare occasion, softly, so no one could here.  Singing, it seemed, and the enjoyment of it, was just part of the collateral damage of Autism.  Over time it was just something we had accepted. 

I don’t know what the magic surrounding this particular version of Peter Pan is, I just know that there is magic in this show for me and for my child.  It is as though the show reached through time and touched something in him from years ago, something I thought had been lost in translation.  Ever since we saw the show, my child has been singing out loud whenever he has had the opportunity.  This morning he woke my husband and I up singing, ” Zip-a-Dee-Do-Da!”  Every night he has asked me to sing songs from The Wizard of Oz with him.  He has been making songs up, improvising lyrics, cracking us up and leaving us speechless.  I thought we had lost this forever.  But Peter Pan brought it back.  It was something I hadn’t even thought to hope for.

So…what can I tell you?  Our kids are only little for such a short time.  Getting to see their faces lit with wonder is such a precious gift.  Getting to share a moment of sheer delight with them is something to be cherished, a memory that will never fade or tarnish.  This is what seeing Peter Pan, starring Cathy Rigby can do.  This and possibly much, much more.  I’m telling you it’s magical!  This amazing show is on its way back to New York for the holiday season.  If you are looking for something spectacular to share with a child in your life, you can not afford to miss this show.

To Cathy Rigby, to the cast and crew of Peter Pan, and to Glenn Casale, the brilliant director of both this production and the one over a decade ago – Thank you!  Thank you for the magic!  Your work and your talent has made profound difference in the life of one special little boy.  Please consider your karma bank full and know that you are nightly included on one mother’s gratitude list.

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By Shannon Penrod

Dear Jim,

Nine years ago today we stood in front of friends and family and took vows that have more meaning to me now than they every could have meant then.  I remember part of our vow was an Irish prayer that said, “You are the last person I want to see before I sleep and the first person I want to see upon waking.”  Honey, it was true then, but it’s so much truer now.  When you asked me to marry you I said, “Yes!” without hesitation, because I knew I loved you and I knew I wanted to spend the rest of my life with you.  I’d already tried to live without you and I didn’t like that.  What I didn’t know was how truly marvelous you are.  I didn’t know it because time had yet to reveal it.

How could I have known that you were going to be such an amazing father?  I believed it, but the reality is so much better. I couldn’t have known that you were going to love our little boy with a fierceness that takes my breath away.  I couldn’t dream that you were going to be the type of Dad who calls me up from work and says, very seriously, “Honey, I’ve been thinking about it a lot and… we just aren’t videotaping enough.  I just know that some day we’re going to look back and wish we had a camera running 24/7.”  It just takes my breath away how wonderful you are.

The things you do to make that little boy laugh!  Oh my!  Yeah, other people may have Emmys and Oscars for their comedic performances but baby they’ve got nothing on you.  The best laughs I have ever had have been of your crafting.  I can not count the number of times you have made me laugh until I have fallen off the couch, been doubled over clutching my stomach and begging for air.  You funny.  It’s kind of my little secret and I LOVE to watch people who don’t know you realize it.  For years my friends and family thought that because I’m funny you must be the straight man to my humor.  Of course nothing could be further from the truth. I love your sense of humor and I treasure all of laughs we share.  Thank God we have laughed, because we have been through some @#!$!

When I think of what we have been through in the last five years I don’t know whether to laugh, cry or wet my pants.  I’d rather just hold on to you and tell you over and over, “Thank you!”  Thank you for sticking by me, through Autism, through a nervous breakdown, a reality show, three moves, being sued by the school district twice, 2 summers in Southern California with NO AIR CONDITIONING, total financial devastation, IRS hell, a dead landlord with a crazy ex-wife and ever so much more.  Thank you, because looking back on it, it all seems like a really funny adventure now.  That’s because we were in it together.  There was never ever a moment when I thought for even a second you weren’t going to stick it out with me.  I’ve said it before and I’ll say it again.  I can go anywhere and do anything because I know at the end of the night I get to go home with you.  That’s my ace in the hole, right there.

I think back to all of the promises we made nine years ago.  We’ve been able to keep almost all of them.  Yes, a few of our dreams got differed because of a little thing called Autism.  We haven’t been able to do all of the “couple” things we would have loved to.  Even this morning, you’re off to take Jem to Harry Potter Camp, while I’m staying home to tackle the garage in preparation for yet another move next week.  It’s not the big romantic anniversary we would have planned nine years ago.  It may not be what others would choose, but I don’t care.  I want you to know that I still choose you, I still choose us.  I love our life, our love our little family and I love being on this adventure with you.  I love you and I love the way you love me.  I never, ever thought I would have that.  Thank you for making our story a love story.

Happy Anniversary Love!

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by Shannon Penrod

I’m not terribly good and beginnings and endings.  I like middles.  Beginnings are bumpy and fraught with unexpected muck.  Endings are messy and emotional.  Today is an ending and I am definitely feeling messy and emotional.  While I am writing this my son is in the next room having his last session with one of his ABA therapists.  5 1/2 years ago I remember hearing the word Autism in connection with my son and feeling like I was stepping off a cliff into a hole that had no bottom.  It was a messy beginning to say the least. But, that was then and this is now.  I’m sitting on the sofa crying because I can’t believe we actually did it. Somehow we managed to rearrange our lives to accommodate an army of trained therapists parading  through our home, coaxing our child out inch by inch, hour by hour, year by year until we  finally arrived here.  Here is unbelievably good.

I remember the first time I ever drove to California. I couldn’t help but wonder at the tenacity of the first settlers who reached the Rocky Mountains and decided to scale them to get to the other side.  For the first time I understood why places like Denver became cities.  A whole lot of people looked at those mountains and decided it just wasn’t worth it.  I always thought I would have been one of those people.  Now, on the other side of the mountain I can’t help but look back and think, “Holy CRAP!!! Did we really just scale that?”  We did.  We really did.

For the last few weeks I’ve been watching this really amazing docu-series on the web, called “The A-Word”.  It follows a family through their early days of diagnosis and getting ABA therapy.  It’s amazing.  I can’t stop talking about it.  For me it’s like getting to relieve those early days without all the fear, without all the uncertainty.  I’m watching the family adjust to the fact that their entire life has been picked up and shaken like a box of Legos, and I find myself crying – because I know how lucky they are.  I don’t know if they know it yet, but I do.  But they are at the beginning and we are at the end.  The Alpha and the Omega of ABA therapy for Autism. Everyone should be so lucky.

I don’t know what the future holds, but I know that this journey has been life defining for me and my family.  Can’t isn’t in our vocabulary anymore.  Hope is something that has legs.  Fear is just false evidence appearing real.  Courage is a small child who doesn’t give up.  Love is never giving up.  Hard is meaningless and everything is possible.

So, what do you do to mark such a moment occasion?  We already had the party, we already went to Disneyland so today we’re just going to be normal and go see the premiere of CARS 2.  That’s what 8-year-old boys want to do on a Friday night; and starting today that’s who my son is, an 8-year-old boy, just like everyone else.  It is our new Alpha.

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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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by Shannon Penrod

I am an admitted control freak.  The worst part of being a control freak for me is my unshakeable belief that I can solve all of your problems if you would just let me.  I have no desire to work on my problems.  Why would I?  My problems are old, boring and insurmountable, not to mention complicated and convoluted.  On the other hand, your problems are crystal clear – to me, and infinitely solvable if you would just do what I say.  Of course it’s exhausting knowing how to fix your life and watching you resist my plan for you.  Not to mention that quite honestly there are a few things that I need to take care of in my own life that I can’t seem to get to because I’m so entrenched in what you should be doing.  There’s the rub.  You know what they say, when the student is ready, the teacher appears….I must be ready, because my teacher has appeared.

I am reading Bryon Katie’s book, Loving What Is, and I am seeing myself in a way that I haven’t ever before.  Even in the first few pages of the book she has challenged me to consider that there are only 3 types of business – My business, everybody else’s business, and God’s business.  Katie simply asks her reader to examine when ever they are sad, lonely, angry, uncomfortable, cranky or just our of sorts, whose business they are in when feeling that way.  Her supposition is that when you are out of whack it is because you are in business that is not your own.  Ugghhh.  This is a little too close to home.  I live in other people’s business!  Still, I thought I would give it a try.  Oh my!  In the past 24 hours I have discovered that, oddly enough, I am rarely in my own business  AND when I make a conscious choice to let go of other’s business and be in my own business…I am really happy and peaceful.  Who knew?

I can’t wait to read the rest of the book and see what else can happen if I stay in my own business.  Is it really possible that I could turn into one of those really happy, present people who oozes peace like a Buddha on a Benadryl.  I think I would like that.  So here’s the really exciting news, I’m not only reading Byron Katie’s book, I’m interviewing her on my radio show this Monday at 4 pm PST – 7pm EST.  You can tune in and listen to my chat with Katie by visiting www.toginet.com.  Better yet if you want to work on getting your inner Buddha on give us a call during the live show and you can chat with Katie too!  Simply call 877.864.4869 during the live show.  For more information on Bryon Katie and “The Work” that she does visit  www.thework.com. You can find her book, Loving What Is, by visiting here.

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