Thursday, February 24, 2011

The Oprah Show Features SPD

From the SPD Foundation's website. Please read, share, and act!

Dear Friends of the Foundation,

On Friday February 18, the Oprah Show had an exclusive story titled, “The 7-Year-Old Who Tried to Kill His Mother,” a frightening, yet true story of young Zach and his mother, Laurie.

“Sensory integration disorder was Zach’s first diagnosis and that has to do with how Zach perceived his world," Laurie stated on the show. "So he was incredibly sensitive to everything. He would do things like throw himself on the ground, thrash his body, where a normal kid, it would hurt, and he would get pleasure. He would laugh. Sound bothered him. Light, clothing, that sort of thing, and everything was accentuated 10 or 15 times of what a normal person would experience. That's what sensory is.”

Zach has a variety of mental health disorders. The initial diagnosis mentioned by Oprah was “sensory integration disorder.” The majority of the show focused on the tough challenges of his mental illness and the family’s journey. Zach is currently in a residential therapeutic school in New Hampshire that specializes in alternative approaches to helping children like Zach.

Sensory Integration Disorder (also called Sensory Processing Disorder) was not explained in depth, nor was Zach’s mental health diagnoses, leaving the impression that children with a diagnosis of SPD may be inclined to rage attacks that could lead to attempts to kill others. We have received a plethora of letters from parents and others who are frustrated and puzzled by the Oprah show.

Although clearly there is a misunderstanding about what Sensory Processing Disorder/Sensory Integration Disorder is, this constitutes a great opportunity for all of us who care abut the disorder to finally bring it to the attention of the Oprah Show. We have been trying to reach Oprah for over 10 years and this may just be our ticket into the consciousness of their producers.

We are rallying a grassroots letter writing campaign. Our goal is to get 10,000 letters to Oprah by next Friday, March 4. Go to www.spdfoundation.net/oprah for our suggestions, instructions for submission, and ideas about what could be included in your letter. Please also send a copy of your letter to us at oprahresponse@spdfoundation.net so we can tally the letters submitted.

Stay positive. Start your letters with what was right, e.g., "SPD is a devastating and unrecognized disorder," and add other facts as you wish (see specific facts posted at www.spdfoundation.net/oprah) rather than focusing on what you felt was innacurate.

If you wish to read a summary of the show, go to:
http://www.oprah.com/oprahshow/Children-Dealing-with-Violent-Rage

Sincerely believing in the power of grassroots response campaigns, and in parents,


Lucy Jane Miller, Ph.D., OTR
Founder and Executive Director

Sunday, February 20, 2011

It's Official

The Society for Healthy Sensory Processing Development was incorporated under the society act on January 13, 2011.

What's next? We have to start doing stuff.....Here are the main purposes of the society (and things to look forward to in the future).


a. To raise awareness within the general public of sensory processing and its related disorder (sensory processing disorder);
b. Promote the importance of fostering and supporting healthy sensory integration/processing;
c. To educate caregivers, parents/guardians, government and agencies about sensory integration and sensory processing (or sensory processing disorder);
d. To provide support for parents/guardians of children with sensory processing issues;
e. Enhancing the quality of life for children with SPD and their families;
f. To raise, use, invest and reinvest funds to enable the society to carry out its stated purposes;
g. To affiliate with and support any societies, associations, companies or institutions having objects similar to those of this society

Where do we start? Help me out by filling out the survey below and stay tuned for more info.

THANKS!

Wednesday, February 16, 2011

A New Year


Photo of John at around age 2. He is now 7 years old and still struggling with utensils!


I had plans to start this new year by writing lots of helpful, informative posts about living with a child with SPD....but honestly, I'm usually so tired that when I do get to visit with my computer, I don't want to dwell on issues past....issues dealt with. I don't want to think about my life and how I'm coasting through.....however, I must admit I am quite pleased with myself on how well I'm coping with everything. So, really, I just want to give myself a pat on the back and climb into bed and sleep.

But honestly, things really are running very well. I've let go of my wish for silence and order and actually, I've let go of living my life the way I want. The kids get to jump and scream when they please, eat what they want (with the occasional veggies sneaked in)....they can even eat the way they want...yes, we've settled (the kids and I) into a pretty crazy routine with trampolines in the living room and pillows flying all over the place, and the african savanna blocking our way to the dinning table and dirty children eating spaghetti by shovelling it in their mouths with uncoordinated fingers...okay, only John does this. Kate just never eats supper. This is my family...and yes, I want it too change, but....maybe next year?

Maybe not....change is happening....now! My boyfriend (Richard) and his son moved in. We were waiting for my divorce to go through before moving on with our relationship, but that's not going to happen any time soon....so we decided to move on, or move in together. Richard finds the broom and sweeps the african savanna to a corner...we all stare in amazement....I guess it can be moved....the pillows are always picked up and placed back in place...the trampoline....he wonders if we could move it downstairs....like out of the way....I have to put my foot down....that thing is a life saver....it's staying! But the kids are always jumping on it.....that's the point! Imagine what they would do if there wasn't a trampoline to jump on! And can't John eat his spaghetti with a fork? He's trying, I say....but Richard and Cage (his son) are disgusted! "So don't look!" yells John....Ah, I've trained my children well! And does it always need to be so loud?

And really my instinct is to support Richard....because really, I want everything he wants....I want "normal" but here's the thing, we expect children (like my son) to change into what we want, but they are the ones diagnosed with the disorder. John has regulation disorder (among other things)....he can't just change and do what "we want". We, on the other hand, don't have disorders that define our capacity for adapting to the world. So yes, we need to learn to "adapt", because we can easily "adapt"....(although most of the times it doesn't feel easy and, knowing this, I applaud Richard and Cage's ability to adapt to our situation).

I wish I could make everything just perfect for everyone, but this is how perfect it can be right now. John spends his day at school, forcing himself to "adapt" to their philosophies, doing things that are so hard for him....all day long. When he comes home, I want him to relax. I want to give him the place to just be and to sometimes fall knowing that we are there to catch him and no matter what, we love him just the way he is.

Sensory Processing Disorder (SPD)

Sensory processing disorder (SPD) is a neurodevelopmental disorder that affects at least one in twenty children. Children with SPD don't process or experience sensory information the way other typical children do; therfore, they don't behave the way other children do. They struggle to perform tasks that come easier for other children. Consequently they suffer a loss of quality in their social, personal, emotional and academic life.

The Sensory Processing Disorder Foundation is dedicated to continue their research into the knowledge and treatment of SPD, so that, as Lucy Jane Miller writes in her book "Sensations Kids", "the millions of sensational children currently "muddling through" daily life will enjoy the same hope and help that research and recognition already have bestowed on coutless other conditions that once baffled science and disrupted lives."