Sunday, January 28, 2007


Very shortly after our visit with Dr. Budden, I received a call at home one evening. A Behavioral and Developmental Pediatrician at Emmanual, Dr. David Willis, had been given our name by Dr. Budden. He was bringing pediatrician and child development expert, Stanley Greenspan (not Alan) to Portland, and was looking for kids to study under Dr. Greenspan's tutelage. Our kid was "perfect."

We didn't realize at the time that Dr. Willis was "the" guy in Portland, and almost impossible to get in with. We felt we were doing him a huge favor by agreeing to partake in his study.

For months we met with Dr. Willis while he videotaped us with our son. He taught us techniques called "Floor Time" and chronicaled the journey for Dr. Greenspan and his students to study. I went from not having anyone take me seriously, to receiving national attention in one week.

In the meantime, we were working with an occupational therapist, with a specialty in sensory integration therapy. Integrating his sensory information, apparently, was something this little guy could not do. Everything was either too much or too little. He was both hyposensitve and hypersensitive. Naturally, the most complicated version to treat. The therapist explained that while "typical" (we don't use the word "normal" in the special needs world) babies were soothed with gentle rocking. All this did to our guy was annoy the hell out of him. He needed vigorous jostling for his sensory system to register "movement." He needed highly seasoned food for his mouth to register "food", while his ears that we suspected of having hearing loss, were so keenly sensitive he may as well have been a German shepherd. Smells, too, highly, highly sensitive and easily disturbed by them.

We were instructed on the joys of brushing therapy coupled with joint compressions. Every two f'ing hours we stripped this boy down to nothing, brushed him vigorously with a sugical brush, only in one direction and with a specific head to toe pattern, then compressed each and every joint in his entire body. Every joint in the hands, legs, arms. Every two hours. Every day. For months. The theory being you overstimulated the sensory system so it could swich "on" and work as it was designed to work. It worked. It wasn't a miracle cure, but there was definitely some settling down of this unsettled boy. Definitely.

We'd turned a corner.

Stanley Greenspan, internationally known for his work with infants, young children, and their families, and his colleague, nationally recognized child psychologist Serena Wieder, have for the first time integrated their award-winning research and clinical experience into a definitive guide to raising children with special needs. In this essential work they lay out a complete, step-by-step approach for parents, educators, and others who work with developmental problems. Covering all kinds of disabilities—including autism, PPD, language and speech problems, Down syndrome, cerebral palsy, and ADD—the authors offer a new understanding of the nature of these challenges and also specific ways of helping children extend their intellectual and emotional potential. The authors first show how to move beyond labels to observe the unique profile—strengths and problems—of the individual child. Next, they demonstrate the techniques necessary to help the child not only reach key milestones but also develop new emotional and intellectual capacities. Greenspan’s well-known ”Floortime” approach enables parents, as well as clinicians, to use seemingly playful interactions that help children actually move up the development ladder and often master creative and abstract thinking formerly thought beyond their reach. Including vivid case histories, the book also offers deep and compassionate understanding of the stresses and rewards involved in raising a child with special needs. whose amazing work with autistic and other special needs children is nationally known, and his colleague, child psychologist Serena Wieder, have integrated a lifetime of research and clinical practice into a single, comprehensive guide for parents. Covering all kinds of disabilities—including cerebral palsy, autism, retardation, ADD, PDD, and language problems—the book offers specific ways of helping all children reach their full intellectual and emotional potential. First the authors show how to move beyond the label and observe the strengths and problems of the particular child and the key milestones that must be reached. Next, they move step by step through the techniques necessary to help the child reach these milestones and show how to tailor these to each child. Finally, with a deep and compassionate understanding they outline the marital, educational, and social stresses and rewards in raising a special needs child. 320 pages. 1998


Jerri said...

"We don't use the word 'normal' in the special needs world."

I'd like to hear more about the moments when you learned these things, about when and how you recognized that this was the world you'd awakened to find yourself in.

LOVE this writing, Carrie dear. LOVE you, too.

Suzy said...

I have met Rojo and now understand where his uncanny intuition and absolute charming personality comes from, you and your husband are amazing.
Although in the true "Carrie Style" you did make me laugh with" while his ears that we suspected of having hearing loss, were so keenly sensitive he may as well have been a German shepherd." Love you, love you, love you.

Ziji Wangmo said...

Carrie- I had no idea that you went through all of this! I have new admiration for your strength and dedication to your son's well-being. What a journey you are on! I love this writing -it is so revealing and honest.
luv u, too.

jennifer said...

There is nothing here that isn't amazing! And it makes me think that your boy, as well as you and your family, have made an important contribution to the study of these unique children. Amazing.

Michelle O'Neil said...


I had every idea you went through all this. And so much more that won't ever fit into a blog post or a 1000 page book.

With much respect my dear sister.

Love you!

JessPDX said...

I love reading this story. You tell it so well, and I get it so much more now.

Thank you.

Leslie said...

CARRIE! Why oh why on earth did you never tell some of your oldest friends, like Marty and I, all that you had been going through? Even on our super fun trip to L.A., you never mentioned anything! Now I finally see the real woman under that near perfect facade! And, I love you even more!
Keep writing! RHDT

Jenny Rough said...

I love reading this story too, and learning more about this and you and Rojo.

Many blessings.