My first time meeting Clay was in the summer of 2008 while Trisha and I were still dating. We had both planned to be on vacation in Utah at the same time. Trisha had not seen the Whiffens in a long time and really wanted me to meet them. As we walked up to the front door I was really nervous about the meeting. Trisha loves this family like they are her own and she has a deep connection to them. I have never met them and at the time I am not sure how I feel about their story.
While we were visiting with Leeann and her boys, she was talking about a book that she just recently finished, documenting their family struggle and eventual victory over autism. She had just chosen the picture that would become the cover of the book. She walked us down the short hallway to this picture of Clay running out of the water with his shirt above his head and his pants soaking wet up to his knees. He has a look of pure and innocent happiness in his eyes.
Some time passed and Trisha got the notice that the book was finally completed and available for purchase. She immediately went out and bought it and read it quickly as she does with every book. When done reading she tells me, "This is really well-written, Leeann did a great job!"
Ever since then, the book has sat on our bookshelf. Several times as I have walked in and out of that room, I have seen this book and thought to myself, "I should really read that book." Trisha also urged me to read it on several occasions. Finally, I picked up the book and started reading...
Clay was diagnosed with autism at the age of 2 years. As the concerns start to arise and the diagnosis finally comes out, the family was thrown upside down. Leeann especially seems to suffer through denial and pain. As a result, she becomes very isolated socially and spends much of her time obsessively researching the disorder and the many treatments for it. She is drawn to certain treatments and decides to put it all on the line to use a treatment called Applied Behavioral Analysis, or ABA, along with some other diet changes, vitamins, medicines, etc... She needs to hire instructors that will be responsible for a lot of hours of one-on-one time with Clay teaching him skills that will change his behavior.
We had already withdrawn our ad from the paper, since we thought we had the slots filled. So we either need to run the ad longer or find another candidate among those we've already met. Then, about an hour later, a young woman by the name of Trisha calls. She's very interested in the position. A friend of hers had given her a copy of the ad, and she had held on to it for a week, wondering if the job would be right for her. We ask if she can come to interview the next day.
Trisha is a breath of fresh air. Her cheery smile and upbeat personality are contagious. She's very genuine, with no fluff or cheesiness about her- just real, down-to-earth, and very caring. Her brown short curls bounce as she laughs. She is warm, friendly, and being from North Carolina, full of Southern hospitality. We bring Clay into the room to see how well they interact. She is very patient with him, and pursues him even when he seems uninterested. She flops down on the floor in her skirt and plays with him like he is her little brother. He half-smiles while still looking at the floor, and starts responding to her persistent gestures. She hasn't even left our home when Sean and I look at each other with that look of, "Yep, it's her."
From that day she was hired as an instructor for Clay. She would work with him for the next 3 years.
There are so many things involved with this program that Leeann and Sean are trying to run in their own home. Financial burdens, feelings of personal inadequacies and family balance are constant stressers. Leeann spends hours trying to stay up to date on all the latest research and treatment options. Consultations with doctors are constant. All behavioral sessions are recorded and reviewed by Leeann and Sean. Meetings with the instructors also review the progression and regression from week to week. It is overwhelmingly exhausting, but they adopt the moto, "Never Give Up," and they stick with it with 100% dedication and commitment to healing Clay. For them there seems to be no other option, Clay will get better. It's hard to believe at first, as Clay is non-communicative and tantrums most of the day. Progress is slow and steady. Milestones are reached and hope starts to creep in with each small success. As Clay starts to learn normal behavior and how to use that behavior appropriately, burdens are lifted and life seems to creep ever closer to the life the Whiffen's had before autism.
I hear music blaring from the schoolroom. The thumping of Trisha and Clay dancing above shakes the light on the ceiling. I run up to my bedroom to watch. They are dancing to the song "Funky Town." Clay yells into the fake microphone, "Wonchoo take me to funky toowwwn?" Trisha runs and takes the microphone and sings, "Won't you take me to funky town?" on cue. She shakes her hips back and forth. Her hands shimmy in the air. Clay hops up on the table. He stomps his feet to the music, and then sticks out a leg and twists it around in the air with his hands on his hips. Then he jumps down and hops around the room.
This was one of my favorite paragraphs in the book! I read it and it made me laugh as I pictured Trisha doing her famous shimmy that she makes fit into any genre of music. After I finished laughing, I just thought to myself, "That is Trisha. That is the reason that I married Trisha. That is the Trisha that I love."
It is 3 years after the treatment started that Clay goes to see a neurospecialist and get his behavior analyzed, only to find that he no longer meets the DSM-IV criteria for autism. He has improved to the point that he will no longer be labeled as autistic. His life will be different now. All of the stress, grief and pain are gone and hope shines brightly for the Whiffen family. It is shortly after Clays 5th birthday that the program is faded out. Trisha says goodbye to them, no longer needed as an instructor but the bond that she has created with Clay and Leeann and the whole Whiffen family is as strong as ever and the relationship remains to this day.
We met up with Leeann and Clay again a few months ago. He is now an 11 year old young man. We met them at a little book store in Salt Lake City at a book signing party. He loves to read. We walked into the bookstore and found him and his mom standing in line. We greet them and embrace them. It is a little chaotic for a minute, but we find ourselves alone with Clay, his mom standing a few feet away. He says to Trisha and I, "So, how you guys been?" We look at each other and giggle a little bit because of his adult natured question and then proceed to have a conversation with him. We continue on to another part of the bookstore and Clay wants to hold Sam, who is still pretty young. He sits on an antique chair, holds out his arms and says, "Serve 'im up!" We all start laughing together. Some of the affects of autism still linger in very subtle mannerisms and behaviors. However, it is very hard to believe that this same kid was once diagnosed as autistic.
Clay is a different person. Because of some of the interactions and the many hours that Trisha spent with him, he is a differnt person. She impacted his life. I could not be more proud of her! I could not be more happy for him! It is humbling for me to read about my wife in a book. It is inspiring to know that she has changed a life for the better. I am filled with faith in her abilities. I am honored to be a part of her life. Most of all, I am proud of her!
I don't think the book changed my views on the causes of autism or it's diagnosis, but it did open my mind to the more personal effects of having a child with autism. It helped me realize that it doesn't matter what I think about what does or does not cause autism. The suspected causes are so various that it is hard to prevent it and once your child has it, there is little worry about how they got it. The only thing you can do at that point is whatever you have to do to help your child reach their full potential. If that means a second mortgage or any number of other personal or family sacrifices, it is worth it in the end to do everything you can for your child.
I recommend this book to anyone who is looking for an inspiring story of faith and hope!! It was a fantastic book!
The book is available at amazon.com and more information about the Whiffen's is availablet at
http://www.leeannwhiffen.com/
