Posts Tagged ‘ABA therapy’

by Shannon Penrod

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

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

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

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

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

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

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

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

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By Shannon Penrod

Today was the fourth anniversary of my child officially being diagnosed with Autism.  People frequently ask me why I compulsively capitalize the word “autism”; I don’t believe in underestimating the enemy, trust me – Autism deserves a capital A.  Four years,  it doesn’t seem possible.  In some ways it seems like yesterday, in other ways that grey day in January 2006 seems at least 100 years ago.  It was a watershed day, a day when things came into sharp focus and I knew without a shadow of a doubt that I had a new mission.  I would rather have a mission than be in limbo any day of the week.

I remember driving away from the Drs. office.  A lovely elderly developemental pediatrician had spent hours with my child, testing him and taking lenghty notes, then she abruptly stood up and announced she was done.  She started to leave the room, I stopped her and asked her if there was a diagnosis. ” Autism.” she said.  Trust me on the capital letter. Then in an effort to soften the blow she told me to be grateful, 50 years earlier she assured me that my beautiful baby boy would be institutionalized for life.  She assured me there was hope, but made me promise that I would not do ABA therapy with my son.  She promised me it would turn him into a robot.  I was horrified.  I promised (A promise I broke, thankfully) and I went out to the car with my husband and my happy little boy who no longer talked or answered when you called his name.  I told my husband it was time to go public and tell our freinds and family.  We had suspected Autism for a while, but we said nothing.  Now I needed to circle the wagons.  We were in for the fight of our lives and I knew it.

I called my mother first.  When I told her she burst into tears saying, “No, not our baby!  Not Jem!”  It was the perfect thing to say because it was exactly what I wanted to say and couldn’t.  Because she was saying it I was free to feel the real answer. I calmly told her that Jem was the exact same child he had been the day before, but now we knew what to do to help him.  I said it and then I realized it was the truth. 

In four years we have come a long way.  Thank GOD for ABA therapy!  Thank GOD that Peter and Crystal Sheppard came into our lives and showed us the miracle of ABA in their home. (By the way they are also FABULOUS Realtors here in Santa Clarita. If you need a Realtor I personally HIGHLY reccommend them!)  Thank GOD for CARD (The Center for Autism and Related Disorders) and for Peter Farag (our personal Autism Whisperer) and thank GOD for the never ending army of therapists who have helped to bring our child back to us.

Jem is excelling in a typical lst grade class.  He is a social butterfly and has more friends than I can keep track of.  He demonstrates empathy, asks meaningful questions and plans to be a rocket scientist!  He lies to keep out of trouble, thinks Spongebob is hilarious and asks me even a year later if Jett Travolta’s sister is okay after his untimely death.  Does that sound like a robot to you?  Not me!

In the last four years we have met a wide variety of Doctors, Teachers, Social Workers and friends whose expectations for our son didn’t jive with ours.  We politely ignored them and chose repeatedly to surround ourselves with people and professionals who were willing to see what was possible.  Four years later, I’m really grateful we did.

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by Shannon Penrod

Have you ever just been moving along in a direction, happy go lucky when out of the blue something so devastating comes along that it has the ability to completely decimate all your hard work and progress. This was my day yesterday. It started with a phone call suggesting I check my email. I have a son who is recovering from Autism. He receivesABA therapy in our home from a group of super talented therapists, our service provider is CARD (Center for Autism and Related Disorders). The therapy is paid for by our local regional center. Here in California we are truly fortunate that children with Autism can receive these services for free. There is a lengthy application process, a long waiting period, tons of restrictions and mountains of paperwork before you can receive the therapy. It doesn’t matter – it’s worth it.

When my son was almost two we noticed that he gradually started speaking less and less, and he became harder and harder to reach – It was a nightmare that ended in a diagnosis of Autism. It took us six months to be able to receive ABA, we tried other therapies in the meantime, with little or no progress. Then CARD came to our home and everything changed. Everything!

Long story short – Miracles happen in my living room on a daily basis. All because of this therapy.

And yesterday we found out that The California State Board of Education has decided to change the criteria for ABA therapists with no warning and no transition period. The result if allowed will be devastating. Not a single member of my son’s talented team of therapists meets the new requirements. It is estimated that over 70% of the ABA therapists in the State of California do not meet the requirements. They could with some time but that is not current allowed for. As of October 1st if nothing changes my son and thousand of other children in California will not receive therapy. Devastating. Unthinkable. Unacceptable.

If you have a child on the Autism Spectrum, if you know a child on the spectrum, if you are just a person with a voice who believes what DR. Suess said, “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.” Please pick up your pen today and write to:

Deb Strain, Rulemaking Coordinator
California Department of Education
1430 N Street
Sacramento, CA 95814
Fax: (916) 319-0155

mark you comment
URGENT: Comment to proposed rulemaking: Regarding Non-Public Schools and Agencies; proposed changes to Title 5 CCR Section 3065; Board of Education meeting September 2008, Agenda Item No. 13

Your comments will only be received until September 30th. Let them know that you are a concerned citizen and a tax payer and you won’t stand for this!

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