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Posts Tagged ‘Autism’

by Shannon Penrod

Well the verdict is in and I don’t agree.  James Durbin won’t be the winner of American Idol 2011 but there are some contests that are even more important than Idol and as a proud Autism Mom I know that James Durbin has already won them. 

James Durbin

Not to take anything away from the other contestants, I’m sure they have all overcome some adversity to get where they are, but I know first hand that it can’t compare to what James has surmounted.  He is a true champion.

He stood in tears at the end and proudly said that he had done what he had come to do.  I think that’s true, James, but I don’t think it was to give metal a chance.  Okay, maybe that was part of it, but you also gave a lot of us hope.  To watch you sing every week, to watch you own that stage lifted my heart and reminded me that all things are possible.  You helped me and thousands of other mothers remember that dreams don’t have to be deferred by Autism.  You were brilliant, and the “Autism thing” was incidental, a foot note…irrelevent…what a lovely gift. I thank you from the bottom of my heart.

James Durbin, you are my American Idol.  I will buy your records and I will go to your concerts and I will listen to metal.  Rock on my friend!

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By Shannon Penrod

There are some lessons I have to learn over and over again.  The biggest one is the power of now.  Last night, I was putting my precious seven year old who is recovering from Autism to bed.  He had been sick the majority of this last week and had run a low fever for several days.  I slathered him with Vicks Baby Rub, gave him a methyl B12 shot and tucked him into bed.  And then we had an amazing conversation.  It was the kind of conversation every Autism Mom dreams of.

He laid in the bed and made amazing sustained eye contact and then he lovingly touched my face.  He told me that I needed a haircut, that my hair was starting to look like I was always in a wind storm.  Then he smoothed my hair down and told me that I looked beautiful.  As if it couldn’t get better he asked me a question about my new job and what it was like.  We talked.  Back and forth, effortlessly for probably ten minutes.  He kept up the killer eye contact and I was putty in his hands.  It was easy, he didn’t keep changing the subject back to video games, or start  about a subject that I would have to decifer.  He asked me questions, listened to the answers and responded to them.  We laughed and chattered like magpies.  It was heaven.

Eventually, I stupidly broke it up.  It was past bed time, I wanted to take a shower, yadda yadda poop.  As I went to leave he said to me, “May I hug you?”   May I?  May I?  I laughed and praised him and I hugged the daylights out of him.  He explained to me that may I is the correct way to ask and even offered the example that workers in stores are supposed to say, “May I help you?”  We’ve been working on getting him to ask before giving hugs.  He’s getting big and his sudden hugs have been known to nearly topple friends, teachers and therapists.  We haven’t focused on grammar, just asking, which frankly hasn’t been going well. 

Somehow the combination of the methyl B12 shot and the low fever, which in all likelihood burned some of his excessive yeast, left me with a perfect pocket of a moment when my child wasn’t having to fight through his Autism symptoms to talk to me.  It was lovely, it was beyond divine.  And then I tucked him in and took a shower.

In the shower I couldn’t help but think about my Dad after he had his stroke.  He was different, communicating was hard.  He struggled and we all struggled to get to know this new person who looked like my Dad, but wasn’t.  And then every once in a while, the mist would clear and for a short period of time my father would be my father.  On those rare moments you could talk  to them man he had been before, only that’s not entirely true.  He was the old him mixed with the new him in a wonderful, unpredictable way that could simply take your breath away.  We quickly learned that those moments would come and go in the blink of an eyelash.  If you wanted to participate in them you had stop everything and enjoy the moment.

I thought about that and realized the same is true with my son.  There are some moments that transcend bedtime, that transcend the desire or need to take a shower.  I turned off the water got into my pajamas and crawled into my son’s bed to read Captain Underpants with him.  He was tired by that point, but I managed to squeeze a little it more joy out of the moment. 

I kissed him goodnight again and told him what a remarkable wonderful boy he is.  I crawled into my own bed a mass of feelings.  I was grateful, a little sad and painfully aware of the passage of time.  Moments continue to fly by.  Sometimes I catch them, sometimes I don’t.   I’m learning…again.

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By Shannon Penrod

I’m not a country music fan, so I don’t even know what Keith Urban sings, but he was on Oprah a couple of weeks ago so I had the opportunity to hear him speak.  They were talking about addiction and what had happened to change his life.  He mentioned that he had asked Nicole Kidman, now his wife, how here heart was and the her reply was, “My heart is open.”  The audience oooohed but I loved what he said.  He said it made him think about his own heart, was it truly open?  I was sitting there thinking the same thing.  If someone asked me how my heart was, the last thing I would have said was that it was open.  I would have talked about my last trip to the cardiologist, that I have these occasional wonky heart beats and that I need to be exercising more.   It wouldn’t even have occurred to me to say my heart is open.  Huh.

Then Oprah, who truly is my fairy godmother because she always manages to show up and say EXACTLY what I need to hear, said something along the lines of  having an open heart is the true definition of spirituality, that what ever your heart is truly open to you will come to you in abundance and whatever your heart is not truly open to will evade you no matter how hard you try to attain it.  Oh, my, my did that statement lead to some personal soul searching at my house!  You know how sometimes you hear something and it’s as if the world has gone into slow motion?  You find yourself leaning forward because the idea is so big that your heart and your head have to get closer to it?  My head became like a mini computer, fact checking the statement for veracity.  I started making a list of all the things my heart is truly open to:  My heart is truly open to loving and being loved by my husband and my son.  Do I have that in abundance?  Yes, I do.   My heart is truly open to helping other families who have children with Autism.  Do I have that in abundance?  Yes, I have that in such abundance that it could be overwhelming, but it isn’t, because….my heart is open to it.  Hmmmmm.  What isn’t my heart completely open to?  Ouch!  A lot! 

If I’m honest there are a lot of things that I say I want, that my heart is at least 90 percent to, but there is a ten percent negativity hold out.  I say I want to be physically fit and I am working out more, but I can’t claim a totally open heart.  I can tell you that I would like to have a million dollars, but as unbelievable as it sounds within five minutes of contemplating winning the lottery I can conjure up stories of people who’ve won the lottery and wish they hadn’t, so is my heart truly open?  The list goes on:  Am I truly open to being thin? Am I truly open to being happy?  Am I truly open to my son recovery from Autism?  You’d think the resounding answer would be “YES!”  But I kept finding little asterisks and tiny hidden pockets of negativity as well as  debilitating shadow beliefs.  Somewhere along the way some one had comforted me about the Autism diagnosis by telling me that you can’t be drafted if you have Autism.  Odd comfort, but any port in a storm, right?

So for that past month I have decided to play with the new toy that my fairy god mother Oprah gave me.  I try to notice when and where my heart is open and acknowledge the abundance.  But I am also noticing when and where my heart is closed and testing its power to remain open.  There are too many ahhhh-hahhh moments to share, but one fun one.  I went to my regularly scheduled cardiology appointment, to monitor my wonky heart beat.  The Dr. was thrilled with my overall progress, but disappointed in my continued reluctance to workout regularly.  In passing he suggested a personal trainer.  Imagine a thousand doors slamming shut simultaneously.  My negative reaction was so instantaneous it shocked even me.  Before I could stop myself I was spewing negativity so quickly I was practically frothing at the mouth, “I can’t afford that!”, “I have no time for that!”  “I’m not in good enough shape to work out with a personal trainer!”  That was just the beginning – but I caught myself – and stopped.  I regrouped.  What would it cost me to be open to the idea of a personal trainer?  Just the idea…could I just be open to the idea?  I looked at the cardiologist and said I would think about it.  I laughed to myself, because the treadmill of negativity was still going 90 miles an hour, but I was open to the idea…Whatever!!

I came home and saw that I had a message on my phone, a message on my cell and an email message all from some one I didn’t recognize.  I listened to the messages, it was a prospective new client who needed an editing job done.  I called him and when we finally spoke I thought it was a practical joke.  He’s a personal trainer.  Not just any personal trainer, a top personal trainer who has trained top people in the white house.  Top people.  He wanted me to edit a promotional piece, but would like to send me his personal work out tapes in hopes that I would work out with them, for the purpose of knowing what we does.  No, I’m not kidding.    My fairy god mother says that whatever your heart is open to comes to you in abundance.  I believe her, maybe you should too.  Maybe be could all try being truly open to world peace.  It couldn’t hurt.

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By Shannon Penrod

It snowed yesterday.  That may not seem like a very big deal to most of the world, but I live in Southern California, in the Northern suburbs of Los Angeles.  Snow here is the equivalent of frogs raining from the sky in Alabama; we’ve all heard that it’s happened before but seeing it in your life time…well, it’s nothing short of miraculous.  We’re not talking flurries, it snowed, as in I needed a shovel to get down my stairs last night.  I didn’t have one.  No one in Southern California owns a shovel, they don’t even sell them here.

The thing that was truly amazing was the way my neighbors reacted.  My family recently moved to an apartment complex that can only be described as the United Nations meets economic downturn.  This is the apartment complex that no one aspires to live in.  It’s not horrible, don’t get me wrong, but it is transient.  This is the place you rent when you have no where else to go on short notice, the leases are 10 month because no one plans on staying.  At one time I think it was meant for people who were waiting for their newly built houses to be completed, now it is the stop off for those of us affected by foreclosure. 

I remember house shopping with my husband six years ago.  The market was insane, homes were so expensive that even a small shack in the suburbs of Los Angeles was a cool half a million dollars.  We had a new baby. Neither of us saw how it could work so we continued to rent. Shortly after that our son was diagnosed with Autism and all thought of buying a home was gone.  In a weird way it was a blessing, we would have bought on the bubble and been in huge trouble; instead we rented.  No foreclosure issues for us, right?  I can hear God laughing in the background.  We have had to move twice in the last year because we have had two landlords  lose their homes to foreclosure.  That is how we have come to live in the land of international foreclosure.

As I walk through our apartment complex I am treated to multicultural sounds and smells of families trying to recover from this economic disaster.  I hear Spanish, French, Russian, Cantonese and even a little English as people enter and exit their apartments and I catch wafts of exotic spices and aromatic sauces cooking at meal times but that is the extent of the interaction here at the U.N. No one talks to anyone else, and they certainly don’t talk to me or my family.  It is an unspoken rule that I didn’t pick up on when we moved in.  I said, “Hello!” to everyone I passed.  They put their heads down and kept walking.  I took my son to the nearby doors where we had seen children playing.  We knocked and introduced ourselves.  We were not greeted with smiles. There was a language barrier certainly, but we were treated to shaking heads while doors were politely closed.

I haven’t given up, I continue to say “Hi!” when we pass neighbors, occasionally I get a smile or a head nod.  No words. Never any words.

And then yesterday it snowed.  My son and I threw on sweatshirts and jackets and flew outside to see the wonderous event…only to find that it had created another wonderous event, the entire U.N. had come out to play!  My neighbors were laughing and throwing snow, and smiling….and yes talking.  I won’t lie and say that there was full on conversation, it was too much like the tower of Babble for that…but there was communication.  People were making eye contact and shaking their heads in wonder.  It was as if we were allowed to commune over this miraculous experience.

The snow was amazing, so very out of context amongst the palm trees and the open swimming pool, but what it brought was so much more powerful.  It reminded us all for a few moments that we are all human, that cultures and skin colors and languages and even economic failure can’t separate us.  It was a miraculous snow.

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By Shannon Penrod

I claim to be a smart woman, and yet sometimes I can be incredibly stupid.  I was struck by this earlier in the week.  We were getting ready to go to Disneyland.  We are annual pass holders.  It is our one extravagance.  We don’t go to the Bahamas, or vacation in Cozumel.  Once a month we do to Disneyland.  It’s the vacation that works for us while we’re recovering our son from Autism.  We always have a great time and I always say that I never love my husband more than I do while we are at Disneyland.  Unfortunately, the hearts, flowers and warm fuzzy feelings do not extend to the getting ready phase of the Disneyland experience.

Everytime we get ready to go to Disneyland it is a minefield or frustration, resentment and miscommunication.  You know the definition of insanity?  Doing the same thing over and over and expecting a different result.  Color me crazy, because for years I have been running the same minefield and wondering why I’m so miserable. 

Here is our typical scenario, try and figure out where I go wrong every time.  First, when I get up I go out to the kitchen in my fuzzy slippers and I start simultaneously packing lunches and fixing breakfast.  While I am doing this I am either loading or unloading the dishwasher in hopes of coming home to a house that is not a total disaster.  Then I start to pack the bags.  There is a bag for the car ride there, and a bag for the car ride home, there is a bag for the actual amusement park and a bag of warm clothes in case it gets cold.  While I am getting the bags ready I am also getting my son up and laying out his clothes.  My husband is taking a shower and getting himself dressed.  It looks like everything is going so smoothly and I begin to pat myself on the back and tell myself that this time will be different.  That is the moment that it all slides in the toilet.

My freshly showered and perfectly dressed husband sits down to eat breakfast and innocently asks me when I think we can hit the road.  I look down and realize that everything and everyone is ready, except for me.  I am still in the fuzzy slippers and my nightgown with my hair looking like I’ve stuck my finger in a light socket.  Now I get defensive.  I start talking about how much work I’ve done getting us ready.  My husband is patient.  He asks if there is anything he can do.  There isn’t.  I’ve already done it all!  I look at his perfectly coiffed hair and fantasize about hitting him in the head with a frying pan.  We’re off to a great start.

This is made exponentially worse by the fact that it takes me a half hour to get ready, during which time my husband sits on the couch, taps his foot on the floor and checks the time every 30 seconds and sighs disapprovingly.  He denies this, like any intelligent male would.  But it’s true.  Eventually I abandon my preparations and run harried out the door, feeling discombobulated and unprepared despite the fact the car is packed as if we are going to war in a foreign country and could be gone for weeks.  The entire experience is not complete until 10 miles down the road my husband asks me if I’ve remembered to bring the passes.  I give him the look of death and the dance is done.  We can enjoy the rest of the day.

This was exactly what happened the other day. Only I finally found myself asking, “What’s wrong with this picture?”  I want to be mad at my husband for getting himself ready.  But it really isn’t a crime.  It’s just something I don’t do for myself, which breeds resentment.  Then came a huge epiphany that if I got myself ready first,  there might be something left for my husband to do when he was ready.  I could actually give myself permission to get myself ready and then he could help me to pack the lunches and the bags! I know, it’s so simple it’s stupid.  But it honestly never occurred to me that I was doing things in the wrong order. 

When I was single and childless I always got myself ready first, because there was no one else to get ready.  I remember when things changed.  Jem was probably 10 weeks old and I had to go to a baby shower.  I got myself ready and then started dressing him and then he earped all over me.  My hair, my dress…all decorated in lovely baby puke.  I looked like something out of a horror movie and I smelled like a cheese factory gone awry.  I had to get in the shower and start over.  After that I always got him ready first.  And I have kept doing that even though it has ceased working, he dresses himself and only rarely throws up anymore.  Time to change the habit.

Tonight we are going to a Clippers game, and I am not going to pack a single thing until I am completely ready.  I am talking full hair and make-up.  And if the snack bag for the car ride home doesn’t get packed, at least I’ll look good, and maybe the resentment police can have a night off from my marriage!

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By Shannon Penrod

If you saw last week’s Emmy awards then you know who Temple Grandin is.  She was the big winner of the evening, the grey haired woman wearing a cowboy shirt, waving to the audience as the camera came to her time and time again.  She didn’t make the worst dressed list, nobody would have dared.  Temple Grandin is a hero and Sunday’s Emmy telecast was just one of a long line of victories for this amazing woman.

Temple Grandin refers to herself as an “Autistic”.  She is arguably the world’s most famous person with Autism.  A published author, she is a mouth piece for Autism that can not be understated.  Personally, she has given me insight into my son and how he thinks.

Temple thinks in pictures, so do I, but not to the degree that Temple does.  Still, I think and communicate in terms of pictures.  If you ask me how to get to the grocery store, I describe how to get there, I’ll tell you what the store looks like and the gas station you will pass on the way.  This makes sense to me because it is how my brain works.  It wasn’t until I saw a lecture of Temple Grandin’s that I realized that is NOT how everyone’s brain works.

Temple described a brilliant friend of hers that has Autism who thinks in terms of concept, not pictures.  What?  How can you think in terms of concept?  As she described it I realized that she was talking about how my son thinks.  It was as though someone turned on the lights.  For so long I had felt like I needed a translator to enable me to speak to my son.  Temple Grandin handed me the Rosetta Stone – I was talking in pictures, he was hearing in concept.  We weren’t getting anywhere.  Now I remind myself to give him the concept first, then he can make sense of my visual pictures. It was a huge, exciting revelation that led to the greatest thing a parent of a child with Autism can hope for: endless, effortless communication.  Ahhhhhhh.  Thank you, Temple.

There are many other things I’ve learned from Temple Grandin, too many things to mention here.  But I loved that she had her night on Sunday, that her mother was with her, that she was dressed in a cowboy shirt…it gave me sooooo much hope, for the future, for my son and for the world that he will inherit.  Thank you, thank you Temple!

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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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