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The SPD Companion, Issue #002 -- SPDParentSHARE.com; Helping YOU Find Hope And Support
April 06, 2006
Welcome to the Second Edition of "The SPD Companion". Thank you for taking time out of your busy day to spend a few spare moments with me. (well, actually more than "a few" moments... so go get a nice cup of coffee or tea and put your feet up)
Looking FOR Support? Ready To BE A Support? Join Us, And Together We
WILL Make A Difference!
Whether we are professionals who interact with children, caretakers of
your family or neighbor's children, or are the parent of a child with SPD,
that ONE MOMENT, that ONE DAY when we heard this diagnosis first
explained, is a day most of us have permanently etched in our mind.
My First ExperienceI remember the actual day I first heard those words...this "thing" they called Sensory Integration Dysfunction. I honestly remember it like it was yesterday; but it was 9 YEARS AGO!!
I was sitting in my Child Development class as a sophomore in college pursuing my degree in Occupational Therapy. I was also a "new" mom. My daughter was two at the time and the only child I had (or ever would have). My professor, Charlene Pehoski, an incredibly knowledgeable and inspiring woman, spent the hour or two of class talking about this "thing" we now call Sensory Processing Disorder.
Oh, I was so tired that day. The night before, my daughter took her usual 1-2 hours to fall asleep while I sat in her room rubbing her back. And I, almost "resentfully", sat there in "disgust" wishing I could escape so I could go get my homework done! (Just to be clear, I KNOW I should have, I KNOW I made "mistakes" like that as a parent, but after trying EVERYTHING to get her to go to sleep over the months and years, this was the ONLY thing that worked, eventually *sigh*.) Needless to say, it was 11 PM before I even attempted to try to do some schoolwork... yawning the whole time. A typical night, really...to bed by midnight or so...up at 5 or 6, going, going, going.
Anyway, my professor starts talking about "Sensory Integration" and how it is not effectively developed in some "chickadees" (as she liked to refer to kids). She explained the "symptoms", briefly explained what goes "wrong", and what we, as Occupational Therapists, can do to "treat it". The end.
The end?? No, it can't be the end!!You just described my daughter in a nutshell! You just described EVERYTHING that I have been going through with her! The distress she exhibits with sounds, touch and movement, the inability to soothe herself, the picky eating, the apprehension on the playground, the distress she shows with being tipped upside down, brushing her teeth, wearing certain clothes, never sleeping as an infant without listening to an ocean wave tape ALL night long, the "colic", the...
What is this thing you speak of?? You mean there is a NAME for it?? It's not my fault?? Other kids have these issues too? There is something we can do the HELP her?? To help ME?
From here, I just couldn't get enough. I desperately sought out and took in every single piece of information I could about this "disorder". I would not be satisfied until I soaked it ALL in like a sponge; like a dehydrated lonely woman in a desert searching for just one little drink to keep me going. I couldn't get enough... give me more... help me help my daughter!
Ah, the rest, they say,is history! And, honestly, I am STILL learning
new things every day from all of YOU!
So It All Started To Make SenseIt is not unusual for us as parents, family, caregivers, or professionals to remember that moment we first heard of SPD because it was THE moment that we FINALLY started to understand.
We finally began to peel off the layers of guilt that were piling on top of us.
It was THE moment when everything started to make sense.
THE moment when we saw hope for the first time, in who even knows HOW LONG!
We were validated. We were not "crazy". We were not at fault. We were just a parent (professional, caretaker, etc.) of a child who needed some help... a parent of a child with special needs.
We were poised and ready. We needed information. We needed support. And we started to actually find it!
NOW, we finally KNEW, in our hearts, we were going in the right direction! We could actually find the support and education we needed, because we had a "name", a "real" diagnosis!
(*big deep breath*)... FINALLY!!
Help Us Pay It ForwardCan YOU relate? Have YOU been there? Do you want to help just ONE other parent know they are OK? They WILL be OK?
Do YOU want to help people at your child's school, in your child's environment, in your family, in your community understand YOUR child?
Do YOU want to prevent the torturous battles YOU went through, before you knew what was "wrong", from happening to another parent?
Do YOU wish everyone understood your child's "disability"?
Do YOU want to be an advocate for your child or other children with SPD?
Well, NOW YOU CAN!!
For my faithful followers who read my blog, my RSS feed, and keep up with any updates I make to my site, you may have noticed I have mysteriously "disappeared" the past few weeks, apparently with nothing new to say.
But, truth be told... I have a LOT of new things to say, you just didn't know it until now!
You see, my absence was because me, and a good friend of mine, Michelle Morris
(a published author, mom of an SPD kiddo herself, owner of
SID-DSI_AllAboutKids Yahoo Group
, author of many of my
, and the most wonderful
woman I have ever had the pleasure of knowing), have been working
on something spectacular!
What IS SPD Parent SHARE, you ask? Well, to sum it up, it is a group of dedicated, loving parents who have chosen to humbly accept a volunteer position and become an SPD Parent Host. They are "regular" parents who want to support and educate other parents, professionals, and members of their local community about SPD. Helping ONE person at a time ; our SPD Parent Hosts...dedicated, loving, giving, teaching and making a difference for SPD children and families nationwide. I applaud and commend them for their passion and their dedication to this "cause"!
THEY are helping give our children a voice. Afterall, people will
never understand something they know nothing about.
How Support And Hope Can EvolveMichelle Morris on the evolution of this group...SPD Parent S.H.A.R.E.
In my small American town, just five years ago, when someone mentioned Sensory Processing Disorder, no one here knew what it was. I know this, because I was that someone who asked my friends and neighbors. My family, pediatricians, and staff at our Health Department. I asked everyone I knew and many people I didn’t know. Nope, not a clue.
But I had to find someone, anyone who knew about SPD, because I needed to know. My son had just been diagnosed, and I didn’t understand at all. I had a mountain of questions and no answers.
I knew I would have to find answers to help my child, and so I began. Searching for books on the subject I found Carol Kranowitz’s “The Out of Sync Child”. I looked for research about SPD and found Dr. Lucy Miller, the leading researcher in the world devoted full time to studying SPD. I learned as much as I could, and wanted to know more.
I found a few online support groups and joined them, to ask, listen and learn. As I began to understand the answers, one question at a time, I realized that too many knew too little about SPD in my town, and set about to remedy that.
I made up flyers announcing my intention to share my answers with other families, and very slowly, one by one these families found their way to meetings with me. In time these meetings were full of families, and I felt the need to look further than my own neighborhood, to make sure families everywhere learned about this invisible disorder. I created my own online support group, and parents started coming in, from all over America, Canada, England and elsewhere asking the same questions I once had.
And everywhere a resounding need to know, what is Sensory Processing Disorder? How can a parent help their child? I became a Host for SPD Parent Connections, under the sponsorship of Dr. Lucy Miller, and with her wise guidance and support was able to broaden my reach to families that included my entire state. Was this enough? You’d think so, wouldn’t you? But no, I was contacted by families far and wide who needed more. More than I alone could give them.
My desire to provide more help, support and information continued to grow. As my own child improved this need to share the wonderful hope and possibilities grew with him. In my resolve to reach more families, I knew I had to create another group, that could reach more than a town, more than a state, maybe even more than a country. I needed parents who would help me share. Parents sharing their hope and answers with other parents.
And with the help of a few wonderful, caring parents by my side, we created SPD Parent S.H.A.R.E. Parents helping parents everywhere we can, any way we can.
Is this now enough? You’d think so, wouldn’t you? But no. It won’t be enough for me, until every family, in every town, every state and every country knows what Sensory Processing Disorder is, and what they can do to help their own child. Because your child, could have been MY child, and all of us are one big SPD family.
Spreading The News, One Parent At A TimeThe bottom line? The news is already spreading across the nation. NOW, with the NEW WEBSITE, our voices will be heard internationally. Our parents who are just beginning their SPD journey will have the support they need. Our parents who want to give back and support other parents now have an opportunity to "pay it forward". It is an evolutionary time, and one I truly hope some of YOU will decide to be a part of!
Day one of the new website... one parent signed up to become a new HOST...that makes 20 so far! Now imagine every day, every other day, once a week... a new Host is brought on board. And they have a meeting in their community with 3,6, or 8 other parents..."and they tell two friends, and they tell two friends..."
THIS is what is happening!! We are finally being heard!
Thank you, each and every one of you who is already helping spread
the word in your community, whether as an official host or as a hard
working parent or professional who makes that choice to educate and
support others! You ARE appreciated.
A Call For Help
Thank you for sharing a part of your day with me. Until next time, my friends... bear hugs for everyone!
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