Feeds:
Posts
Comments

Posts Tagged ‘Everyday Autism Miracles’

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.

Read Full Post »

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!

Read Full Post »

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.

Read Full Post »

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.

Read Full Post »

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.

Read Full Post »

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.

Read Full Post »

By Shannon Penrod

Everyday Autism Miracles

Mondays at 4pm PST of http://www.toginet.com

If you know me or follow my story at all, you know that my son is in the process of recovering from Autism.  Jem was diagnosed with Autism 5 years, 25 days, and approximately 4 hour and 15 minutes ago.  But who’s counting?  On that very first day when he was diagnosed I felt so many emotions.  I was relieved because I figured that now we had a name for it we could help him.  I was overwhelmed because I didn’t know what that help was and I was terrified to the core of my being that I was going to let my little guy down somehow.  I promised myself that I would do everything that I could for him and that somehow, someday I would try to help other parents who faced this devastating diagnosis.  A lot of water has meandered under the bridge in the last five years but all in all everything has turned out great.  My child is a walking, talking miracle thanks to the intensive ABA therapy he has received from The Center for Autism and Related Disorders

As for me, for the last year I have been busy hosting a radio show about Autism called Everyday Autism Miracles.  The show is focused on the positive things that are happening in the world of Autism.  This week Everyday Autism Miracles is moving to its new time slot:  Mondays at 7pm EST, 6pm Central, 5pm Mountain time, and 4pm Pacific time.  The move was necessary to make room for my new gig as the host of Skills Live.  

Back in September I was invited to see the unveiling of a new tool in the fight against Autism.  It was an amazing program called SKILLS developed by The Center for Autism and Related Disorders, the same people who gave me back my child.  I saw SKILLS and fell in love.  When I tell you that it was a life changing moment, I’m not kidding.  I saw clearly, for the first time, the answer to a problem that had been dogging me for years: “How on earth are we ever going to get the help my child has received to all of the children with Autism?”  SKILLS answered that question for me.  It gave me hope.  It made me shake for hours, I was so excited.  I had to pull the car over and call my husband, I was that inspired.

To now get to work on this project, well it’s beyond my wildest dreams.  Early this Spring I will begin hosting a live webcast every weekday morning; helping parents, teachers and caregivers to get the very most out of this revolutionary new tool.  I’m pretty sure that makes me the luckiest person on the planet.  For now, while we are in the pre-production phase, I continue to be in awe of the amazing minds that are working tirelessly to recover our kids from Autism.  It is beyond humbling to work with these brilliant people.

Everyday Autism Miracles will continue on in its new time slot.  Right now we are finishing up a series on what to do when your child is first diagnosed.  Free podcasts of all of the shows are available on the show page and on iTunes.  If you or someone you know loves a child with an Autism Spectrum Disorder I hope you’ll encourage them to tune in.  There’s more hope than ever.  I also hope you’ll check out SKILLS to see exactly why I’m so excited.  You can even take advantage of a free trial opportunity to do a wonderful ELearning program that effectively teaches you everything you need to know about ABA therapy in order to be a knowledgeable member of your child’s team on the road to recovery.  The free trial is almost up so check it out today.

This is the beginning of a new chapter for me.  I am excited and grateful.  It has not escaped me that as this journey begins as another is winding to a close.  The truth is I couldn’t even consider doing this job if Jem weren’t doing so well.  It has been an amazing five year journey.  There is a moment at the end of  To Kill a Mockingbird where Harper Lee narrates about getting ready to go to the Halloween Program at her school.  She is speaking of her brother Jem, whom my son is named after and she says, “Thus began our longest journey together.”  I have thought of that line so often over these five years.   I can honestly say that it has been a privilege and an honor to have shared this path with my son and husband.  Now with light at the end of the tunnel so clearly in sight there is nothing to do but look forward.   And I do.

Read Full Post »

Older Posts »