Tuesday, June 23, 2009


After our meeting today we planned out the therapy the boys will begin tomorrow. They have both been officially diagnosed with Sensory Processing Disorder, I'll let wikipedia say it best:

Sensory Integration Dysfunction (SID, also called sensory processing disorder) is a neurological disorder causing difficulties with processing information from the five senses (vision, auditory, touch, olfaction, and taste), the sense of movement (vestibular system), and/or the positional sense (proprioception). For those with SID, sensory information is sensed, but perceived abnormally. Unlike blindness or deafness, sensory information is received by people with SID; the difference is that information is processed by the brain in an unusual way that may cause distress or confusion.

SID is its own diagnosis, but it can be linked to other neurological conditions, including autism spectrum disorders, attention deficit disorder, dyslexia, Developmental Dyspraxia, Tourette syndrome, multiple sclerosis, and speech delays, among many others. The meaning of SID falls under the DSM-IV criteria for Asperger syndrome. [1]. There is no known cure; however, there are many treatments available.

Diagnosis is increasing by developmental pediatricians, pediatric neurologists, and child psychologists. While it is not included in the American Psychiatric Association's Diagnostic and Statistical Manual as a discrete diagnosis, Regulatory-Sensory Processing Disorder is an accepted diagnosis in Stanley Greenspan’s Diagnostic Manual for Infancy and Early Childhood and the Zero to Three’s Diagnostic Classification.

Sumner is a classic avoider and Jack is a combination seeker and avoider. We begin groundbreaking research by a local practice tomorrow that will give the boys a new therapy delivery system of bursts of intensive therapy, followed by lulls. The belief is that with the intensive delivery of therapy, they won't need a "booster shot" for a long while.

I am a whirl of emotions. It breaks my heart to see Summy alone, lying on the floor playing with his truck, or scared to swing or slide, or pacing a "loop" to calm himself. I was so scared he was on the autism spectrum. While this diagnosis is like a huge light going on, it's also a scary thought: SPD is not yet "officially" recognized as a diagnosis for insurance purposes. (Go HERE to sign the petition!)

And then there's Jack. Our little Jack who has flown under the radar since we got his feeding issues "under control." I watch him fall a million times a day, get hurt over and over, and not be able to stop himself, or really even have the fear of the jeopardy he puts himself into. My heart breaks again.

I cannot wait to see my boys on the other side. We will evaluate after the therapy burst for the other issues going on which will wait to be addressed (gross and fine motor delays, and speech delays for Jack) All I can tell you is that after the week of evaluations, during our time especially spent with "Cake" as the boys lovingly call her, Summy went down the slide for the first time ever. He shook, and looped, and did all his calming behaviors, but by golly he did it.

A weight lifted, a weight added, but such is the life of a parent.

We also found a (used) swingset for the boys tonight. We hope to move it in the next week or two.


Following Him said...

Tears are flowing down my face as I know this is great news and bad. The boys will shine through their hurdles in life and will be atop of the world one day.

Just FYI...I have sensory processing disorder or issues they call it and do understand what you are going through. My issues are with smell and touch and texture. My clothes have to be super soft and loud noises and I do not get a long.

Hang in there. There is good to come from this Sensory light!

SaraBelle said...

As hard as I am sure it is to hear/learn, I am glad you have some answers and a path ahead for both of your boys. I will keep you all in my thoughts and will be eager to see how the boys progress. Take care!
- Sara

Becky @ Our Sweet Peas said...

I am sure this is, as you mentioned, bittersweet. I hope that the therapy is a huge success. You are a great Mommy who is getting them the best help. Keep us posted and I hope you continue to see improvement!

Allison said...

((HUGS)) So happy and sad at the same time that you have a diagnosis. I hope the treatments will help the boys and you see even more improvement soon! You're always in my thoughts and prayers!

Mandy said...

((HUGS)) You are a terrific mom and I know they will flourish because of your love.

A Mom in Jacksonville, FL said...

A diagnosis... Though difficult to handle, I think being able to "label" and work with the symptoms and factors around the diagnosis will in time make things much easier for you and David.

No one can doubt how much you and D love and care for your boys. They've come a long way and will continue to with the unyielding love of both of you.

Thinking of all of you!! ((HUGS))

Julie said...


You're a fabulous mom and you're doing great. I'm glad that you got answers and know what to do now.

Sarah Dee said...

I wanted to send you and your boys lots of hugs.
I'm glad you had a good eval and were able to get some answers.

Thinking about you all the time~Sarah

Carmen said...

I just found your blog, and I have to tell you, there's light on the other side. My sixth child, Riley, was diagnosed with SPD when she was 18 months. It was a horrific time, but OT was amazing for her. She still struggles and stims, but I can tell you that it does get better. I promise! I'll be back to read more!