Showing posts with label SPD Foundation. Show all posts
Showing posts with label SPD Foundation. Show all posts

Letter Writing Campaign to Oprah

Breaking news 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. See our facts & guidelines page for our suggestions, instructions for submissions, 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.

Join our letter writing campaign! 
(click here to read more)

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 our facts & guidelines page.) rather than focusing on what you felt was inaccurate.

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
Sensory Processing Disorder Foundation

SPD Symposium Wrap Up (3 of 3)

Dr. Lucy Jane Miller PhD, OTR/L signing books.














If you haven't red the first two posts, I encourage you to start there -- they are below this one.

5:30am hit again.

This time, I was not so eager to get out of bed. I was plotting in my head how to sneak out of the conference to take a nap. Logistically, that was harder than getting my three kids to three different schools every day, so it didn’t happen.

But as I squished my now bruised feet back into my heels for a third day, I did have one plan: Find time to talk with Dr. Miller.

I arrived at the hotel once again and was greeted by the now highly anticipated breakfast buffet, which I supplemented with some hot tea and honey. I was tired, my throat was scratchy (from talking too much, I know, you’re shocked) and I was afraid that the lack of sleep was catching up with me by way of a cold. But, this day had some great speakers, and I wasn't going to miss them!

Standing room only for Dr. Stobbe's talk -- first
time I had heard someone talk about development
over the life span that actually applied to my son.
I listened to Dr. Gary Stobbe’s lecture on Autism and Sensory issues across the lifespan – and I have to say it was so incredibly nice to hear someone talk about life as a whole. Not just the transition times: Preschool, high school, adult hood – but to talk about my child as a whole being. It was wonderful, and he had a PACKED house. Dr. Stobbe has a charming way about him, he speaks with true heart and an obvious understanding of those he works with. He told many anecdotal stories, but my favorite was a local 16 year old with Aspergers who is interviewing colleges. This young man’s mother was talking on the phone with a representative from MIT, and she felt that she needed to be honest about her son’s diagnosis so that they knew what to expect, “My son has Aspergers, so I would need to know you can accommodate that.” To which the man at MIT laughed out loud and said, “So does half my department!”  Now I know where to send Matthew.

SPD Symposium Wrap Up (2 of 3)

Award Winners with Dr. Miller  (L to R):  Lori Frankhanel,
Lucy Miller PhD, OTR/L, Diana Henry OTR/L, and Barry Stein, PhD.
Thanks to Brian Mengini for the photo!



















If you didn't read yesterday's post, start there -- it is below this post and can be found by clicking here.

5:30am Saturday

No cooking = AWESOME.
I was up and off again! One of the coolest things about the three days away from the house was not having to cook. I know, that seems trivial or even cliché, but walking into that hotel to find a beautiful spread of fresh fruit, pastries and these adorable little yogurt/granola and fruit parfaits had me considering a permanent move. They were amazingly tasty!

The conference was at capacity: Over 350 attendees in a packed ballroom. And the coolest part of Saturday morning, was having Dr. Lucy Jane Miller speak.

If you haven’t seen her, I highly recommend you do. She is incredibly easy to listen to, a great and exceedingly rare combination of mastery of information and personable delivery. The audience laughed and related to her immediately. Someone I aim to model my talks after.

Saturday’s full house lecture favorites included Dr. Stephen Glass, Seattle based Neurologist, as well as Diana Henry, OTR/L.

Diana and Lori
Another highlight was the awards that the SPD Foundation gives out – Lori Frankhanel from SPD Canada won for the Advocate of the year! Give her a shoutout on Facebook and big congrats! And did I mention how incredibly sweet and down-to-earth Lori is? A true pleasure getting to know her!

But, by far the most incredible thing from all of Saturday was having the opportunity to speak to the group (yes, all 350+ people, and no panic attack) about my 30 SPD Stories in 30 Days Awareness Event and Fundraiser and present the check directly to Dr. Lucy Miller. WOW.

Seriously, WOW!

SPD Symposium Wrap Up (1 of 3)


Marla, Hartley (I hate this photo of me...), Katy and Carrie
Special thanks to Brian Mengini for the photo!
 

















Last weekend was an incredible whirlwind of fun, excitement, education, laughter and connection. I cannot do it justice in one blog post, so I am breaking this down into 3 parts.

-----------------------

I got up at the crack of dawn on Friday morning, close to 5:00am. For the record, this is too early for me. I am not a morning person. BUT, on this day, I was.

I was happily the first out of bed, and showered in near darkness while my husband slept. I had this strange little twinge of working-mommy confidence. The roles were reversed. And I liked it.

After dressing in clean and nice clothes (an oddity after being a SAHM for so long), and packing the last of my toiletries for the 30 minute drive to the conference (yes, I stayed in a hotel), I woke my husband.

“Jeff” I whispered, “Jeff, can you help me carry these things downstairs?” I asked. I really just wanted him to get up and say goodbye to me. Selfish, I know.

He got out of bed, and grabbed my suitcase, while I listed the other things in the house that needed to go in the trunk too: My box of books, the crate of giveaway items, the flyers for the SPD Parent Dinner and of course, a 12 pack of Diet Pepsi for the hotel-room fridge.

He obliged.

I made it downstairs, grabbed my purse, my camera, and walked to the car. It was parked in the driveway, with the trunk open so I could reach in for a cold Diet Pepsi. I took two. I stood there in the dark driveway, in heels and my coat, hands full and looked at my husband standing in his sweats on the porch.

And I had a panic attack.

Holiday Giveaway from Soft and HLW3B!

The only thing better than FREE is when you get something you absolutely love - that is FREE.

Are you ready for the most amazing, hands-down useful, sensory-friendly, OMG you didn't, Squeeeee, giveaway you have ever seen?  I thought you might be.

Grab a handful of mistletoe because you're gonna want to kiss me for this one!

Soft Clothing and Hartley's Life With 3 Boys bring you our first annual Holiday Giveaway!




2 Grand Prizes will be given (one for boys, one for girls), and will each include the following sensory friendly items, which focus on fine motor development, dramatic play skills, sensory integration, creative expression, auditory exploration, and of course, fun! Whatever holiday or season your family celebrates, there is something in this stocking for someone you love!

Quilted Train Stocking from Pottery Barn Kids (boys prize)
Quilted Angel Stocking from Pottery Barn Kids (girls prize)
This is Gabriel Making Sense of School, by Hartley Steiner (That's me!!)
SPD Awareness Calendar (for sale at http://www.sensoryplanet.com/)
Glitter bouncy ball from Pottery Barn Kids
Alex Finger Crayons
Tangle Textured Jr
AKU Sensory Ring
Melissa and Doug Jumbo Paint Brushes (set of 4)
Melissa and Doug Deluxe Fuzzy Make your Own Monster Puppet
Wonderland Eco Friendly Rainbow Sound Blocks
Mood Therapy Putty
Soft Seamless Sock 2-pack
One complete Soft dressy look for girls OR
One complete Soft dressy look for boys

ENTER HERE!

Now Available!! SPD Calendar 2011

Words can't express how incredibly proud I am to say that the
Hope & Help
Sensory Processing Disorder Awareness
Calendar 2011
is NOW AVAILABLE!























Proceeds go to support the SPD Foundation and Children's Institute for Learning Differences (CHILD), two amazing non-profits dedicated to chidlren with special needs.

Join Me at the SPD Parent Dinner


CLICK TO ENLARGE


Prize Pack Details -- What You Can Win!

With the 30/30 SPD Fundraiser starting this Friday, I have had lots of inquiries about just what the PRICE PACKS will be.  So, without further delay -- Tell 'em what they can win Bob!

GRAND PRIZE PACK:

How to Win: The grand prize pack will be awarded to the person who raises the most money in the month of October, from now until midnight PST on the 31st of October. In order to get credit for a donation that does not come directly from your PayPal account, your name and email address must be listed in the “Message to Merchant” space on the donation form.

What is in it? The Grand Prize Pack will contain a LARGE assortment of sensory-friendly items. The value of this prize pack? PRICELESS. Ok, I hate it when people say that too – the total value is over $500. Here’s the breakdown (please note I reserve the right to substitute equal prizes of equal value at my discretion).

Custom Made Weighted blanket from Dream Catchers valued at up to $267
Subscription to SI Focus Magazine
Autographed copy of Sensational Kids by Dr. Lucy Jane Miller Director of the SPD Foundation
Autographed copy of a Growing an In-Sync Child from bestselling author Carol Kranowitz and Joye Newman
Autographed copy of My Brother Charlie from Holly Robinson-Peete and her daughter Ryan Elizabeth
DVD Sensory Processing Disorder Master Class by Drs. Brock and Fernette Eide and Lindsey Biel OTR/L
Model Me Kids DVD
28 Instant Songames CD
Large Bilbo
Chewlery necklace
Fuzzy Alien key chain
Glee Gum assorted mini-packs
and maybe MORE.