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The SPD Companion, Issue #009-- Recognizing SPD As A Medical Diagnosis; Time Sensitive Proposal!
November 02, 2006
Today's topic? A plea for help in supporting the proposal for inclusion of SPD as an OFFICIAL diagnosis in the next edition of the DSM (Diagnostic and Statistical Manual).
However, before I go into this, I want to shout out a GREAT BIG THANK YOU to each and every one of you who took part in Sensory Awareness Week (Oct. 25-31)!! We ARE making a difference. If for some reason you missed this, do not worry, because we truly make EVERY DAY Sensory Awareness Day. It didn't "really" end on October 31st...in a way, it is just beginning!!!
I have the rewarding opportunity to work closely (in the virtual world) with hundreds of parents and families affected by SPD. I was so thrilled to "hear" the excitement in their voices, in the work they planned, and did, to help us spread awareness! We, along with SI Focus Magazine, made up packets that gave our eager and willing parents the tools they needed to run throughout their communities spreading the word! With these tools, parents went to doctor's offices, schools, other parents, restaurants, politicians, therapists, etc. and shouted as loud as they could about SPD!!
They wrote articles for their local newspapers and directed families and professionals to the resources they needed. They started parent support groups in their own communities and found other parents who are struggling just like them! They found things in common with people they never would have thought they had anything in common with. They bought T-Shirts with the awareness message on them and ordered them for their WHOLE families!
They took the leap from "just" being a parent of an SPD child to being a parent, an advocate, and a community resource person; giving support and understanding, spreading knowledge, and making a commitment to spread awareness all year long by taking on a more active role and/or by becoming an SPD Parent SHARE Host!
(To find out more about becoming a host in YOUR community, go to:
My favorite story from Awareness Week?
One of our SPD Parent SHARE Hosts, Jennifer Benton, decided to make her own SPD awareness ribbons. The color orange was chosen to represent it.
This is how it evolved:
I took my 6 year old son, John, to Michael's to buy ribbon for making Sensory Awareness Week ribbons.
At the checkout, he told the cashier, we were making "Awareness Ribbons".
She asked, "Awareness of what?"
He looked her right in the eyes and said... "Awareness of ME!"
With that, I would say, awareness week was a success! Does it get any cuter than that?
A natural next step in the spreading of SPD awareness is the second, and MAIN, topic I want to address today... Helping to get Sensory Processing Disorder into the next edition of the DSM!
The DSM has gone through five revisions (II, III, III-R, IV, IV-TR) since it was first published. The next version will be the DSM V, due for publication in approximately 2011. However, the proposals for inclusion are DUE BY January 2007!!
So...What IS the DSM? What disorders does it address? Why is it so important to get SPD into it?
As categorized by psyweb.com, the DSM addresses the following:
For a more in depth explanation about the DSM, go to:
Unless you are very familiar with the diagnoses included in the DSM, I urge you to take a look at the current DSM IV diagnostic codes. To view them go to: http://en.wikipedia.org/wiki/DSM-IV_Codes (and then come back for more information!)
As you can see by many of these codes, our children would "fit" into some of the current categories due to the SYMPTOMS AND BEHAVIORAL EFFECTS of SPD, but to have the actual diagnosis and list of criteria clearly defined would bring the hope and help we have all been waiting for. We can't wait any longer while so many are suffering EVERY DAY!
And, even though it is not slotted to be released until 2011, NOW is the time to get the proposals in!! Please don't wait...if we missed this opportunity, then we will wait 25 more years! This would be a tragedy for our children, truly!
The DSM is THE BOOK for diagnosing and treating emotional and developmental disorders that affect individuals of all ages. It is THE book our physicians, therapists, psychologists, insurance companies, etc. look to for ensuring ANY condition/disorder is REAL/PROVEN, DIAGNOSABLE, AND REIMBURSABLE!
Sadly, without the validity of inclusion in the DSM V, we will continue to be turned away from services in MANY cases, miss out on funding for services, and receive ineffective therapies, if any at all. Neither our children, our wallets, our feelings of competence as parents and professionals can tolerate this any more.
It is a research issue, it is a financial issue. It is time to change! The integral initial research is in!! Let's finally lift the financial burden of obtaining a proper diagnosis and treatment. The diagnosis will evolve over time, but certainly, in my opinion, we have enough research to justify inclusion NOW!
SPD has not YET made it into this healthcare "BIBLE", and IT IS THIS VERY REASON why so many of us are frustrated that schools won't believe us, doctors won't believe us, insurance companies won't pay for services, and skeptics abound! THIS HAS TO STOP!! Our children are suffering, and we KNOW how to help them... we NEED to help them!!
Are you wondering how YOU, one small person, can help make this possible?? It is simple and NECESSARY...WE ARE PLEADING FOR EACH AND EVERY ONE OF YOU TO HELP US. The research is in (the MOST we have EVER had and it is only just "beginning").
Even though Dr. Lucy Miller and MANY other professionals from MULTIPLE disciplines continue their diligent research on SPD, we need to act now, to ensure funding for this continued research and to ensure the diagnosis will evolve and become more refined. Without proper diagnosis and treatment so many of our children will become "disabled" by this disorder and treated with improper therapy... or worse, no therapy!
While the researchers do their work...we can do ours! Can we count on an endorsement of each of YOU? From everyone you know? This will back the researchers up and give them the access they NEED to continue the funding necessary to find out more!
How? Simple. Dr. Lucy Jane Miller and The Kid Foundation have come up with online forms which you can download, print, fill out and mail with YOUR signature on it.
Are you a parent? YOU can help!
Are you a professional? YOU can help!
Are you an organization? YOU can help!
Are you a friend or family member of a child with SPD? YOU can help!
We NEED YOU!
PLEASE take the 5 minutes it will take to do this...YOU can make such a huge difference in the lives of every suffering child and their families. SPD is real, it is proven, researched, and it affects a minimum of 15 million children in the US...that is 1 in every 5 kindergartners entering school! (This is not even counting the millions around the globe!! Nor, all of the adults who have never been diagnosed!!) It IS a significant problem that needs to be addressed.
We cannot lose any more children, teens, adults, or families to this disorder!! It can potentially rob them of every one of their functional daily skills and self-esteem. It can lead to suicide and substance abuse...we have SEEN it!! It can destroy families!
PLEASE, I beg of you...take the time to help our children.
As pled by The Kid Foundation... "Please support the DSM effort by letting the DSM-V task force know that you support the application and the need for further research to determine if SPD should be included in the DSM-V. The KID Foundation has been asked to submit a position paper to the DSM-V Task Force by January 2007."
Go to: http://sinetwork.org/advocacy.html for the letters you will need to sign regarding the DSM Petition And Endorsement.
Although research is ongoing, it is felt that there IS enough evidence at this point to prove both it's existence as well as it's known behavioral consequences.
Do you need this PROOF that it DOES exist??
Need studies/research that HAVE been done?
Want to know the studies proposed that need additional funding?
Want to share the research with professionals and family members who doubt us?
Want to know the "scientific" reasons and underpinnings of SPD?
Here is an EXTENSIVE list (JUST updated with 50+ research links!!):
Until next time my friends...get those signatures!! You CAN make a difference!
Take good care.
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