Thank You (x4)

I am sure you have all seen my reminders for voting at the About.com page, and if you are on Twitter with me, you are probably sick and tired of them. So, let me say, I am SORRY. Ok, not sorry enough to stop posting and tweeting, but sorry if you are annoyed. Sort of anyway.

Through the About.com award race, I have learned some amazing things.

Most importantly, I have learned how truly remarkable it is to be a part of four distinct special needs communities.

The Adoption Community.  This community was my choice.  And after 7 years as a Foster Parent, and adopting my oldest son, this community has give me support and guidance with incredible compassion.. These parents have nurtured my ability to parent through incredibly difficult times.  This is the community that said, "Let me teach you."  To all of you adoptive moms and dads (or adoptees and/or first-moms and first-dads) out there voting for me, I thank you.

The SPD Community. This is where my heart is. My first love, my passion, my son’s first diagnosis. This is the step that brought me here. It is that first stone that I turned over successfully, and it is the first group of people both online and in person who embraced me – figuratively and physically – and said, “You are not alone.” To all of you SPD moms and dads out there voting for me, I thank you.

The Autism Community. This is where I landed, with my questions and concerns. I brought my son’s social problems, his lack of friends, his language issues and his literal thinking all to his doctor – and sure enough – he confirmed my suspicions: High Functioning Autism. And the autism community that is as diverse as the people who make it up, that is the community that reached out and said, “Let me help you.” To all of you ASD moms and dads out there voting for me, I thank you.

The Bipolar Community. This is where I was scared to go. But when my child was falling apart, raging out of control, and I needed someone to hold onto the pieces and keep my son, our family, and ME together, this is the community that said, “We’ve got you.” To all of you Bipolar moms and dads out there voting for me, I thank you.

As I work to be the Joe Montana of blogging awards, and engineer the greatest come-from-behind-victory of all times, I am overwhelmed by the fact that we – all four of these communities together – have rallied Hartley’s Life With 3 Boys from 600+ votes behind, to closing in at 140+ votes to the first place spot. That is amazing and a true testament to the value of support!

This blog and these communities are my connection to those people who understand my life. You all make it easier to parent a challenging child, who is as complex as he is wonderful.

Thank you for being my neighbors here in Holland.

If you want to share your thoughts on this blog, you can click here to comment. Please continue to vote for HLW3B by clicking here - you can vote every day from now until March 8th (and please do!).

I want to bring home the win for every SPD - ASD - Bipolar family out there - because afterall, we are in this together!

And since we are talking about supporting all of our communities, while you are there, vote for Brandon and the Bipolar Bear (my book is TOO far behind to win) by Tracy Anglada, and CABF or Fun and Function for the Online Community Award. Great people and organizations doing great things for special needs families!

XOXO
Hartley

The Poop on Interoception


Guest post by Patty Porch of Pancakes Gone Awry

*****

Mention the topic of potty training and I am liable to break out in a cold sweat. Nausea has been known to strike, and I sometimes feel panic gripping me. The issue of potty training has been known to reduce me to tears dozens of times.

In all my 7 and a half years of parenting, I can think of few other topics that make me feel quite as inadequate and helpless.

Neither of my oldest two children were particularly easy to potty train, and neither of them were trained at a very young age. But Danny, Danny was a spectacularly challenging case, one which we are still working on, even now as he nears his 8th birthday.

When Danny was a toddler, I decided to wait a while before training him. His speech was quite delayed and I didn’t know how I could train a kid who couldn’t express his need to go. So, I waited. After all, I had plenty of other things to keep me occupied, what with his speech and occupational therapy, working out a sensory diet and trying to minimize his sensory meltdowns.

I had my hands full.

When we did finally begin the potty training process, I tried many different tactics: rewards, sticker charts, picture schedules, begging and pleading and lots of prayers. One day, I even promised Danny to buy him a car if he went on the toilet. And when I say “car,” I wasn’t talking about a Hot Wheels toy. At that moment, if my son had used the toilet, I would have gone out and bought him a real car. That was how desperate I had gotten.

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

Planning a Simple Sensory Garden by Caitlin

Guest post by Caitlin Wray of Welcome to Normal.

While many of us may still be shovelling snow, you may also have noticed your local department store has already stocked the patio furniture in their seasonal area, and greenhouses are already sending out their seed catalogues in the mail. These are sure signs that spring is just around the snow bank, so what better time to take an hour by yourself, a cup of tea (or a glass of wine, depending on how your day is going), and plan a simple sensory garden for your children.

You don't need to be a gardener, or even have a garden, to make this a fun spring project. You can easily do a raised bed garden by making a simple wooden frame, or even just use containers for your patio or balcony. Keep it simple and stress-free.

There are lots of resources out there for sensory gardens, but mine is a little different because it includes all 8 of the senses, rather than just the traditional 5.

Sight
My favourite choice for the sight sense in a garden, is the classic and majestic Giant Sunflower. Not only does it fill your visual sense with its bold colour and tall stature, it also has its own sense of 'sight' when it watches the sun cross the sky. A sunflower moves with the sun throughout the day in its early growth stages, and this provides many great opportunities to extend the value of this flower in the garden. Help your child research why the sunflower does this, take a photo every hour (not necessarily all in one day, but over the course of a few days) and assemble your photos in Microsoft's free stop action movie maker to make a movie that shows the sunflower following the sun. These plants also have the benefit of growing at a very rapid pace, which is great for kids who hate to wait!


Smell
Help introduce your children to exotic smells like curry, with the Curry plant Helichrysum italicum. You can also give them the decadent scent of chocolate with Chocolate Cosmos. Lavender is another popular scent, but be careful if your kids have allergies. Oregano is an easy and excellent choice - little fingers can rub it to release the essential fragrant oils, and then take it straight from a garden herb pot to a homemade pizza.


Sound
There is something timeless and peaceful in the sound of leaves rustling in the wind. Tall grasses are easy to grow and when planted in bunches, can add an almost musical element to a sensory garden. Choose a variety from your local store to ensure it is hardy for your growing zone.

Letter to Oprah

As I am sure many of you have heard, Oprah Winfrey did a show last Friday about mental illness in children, and unfortunately led audiences to believe that Sensory Processing Disorder was a mental illness.

Here is the link to the article:
http://www.oprah.com/oprahshow/Children-Dealing-with-Violent-Rage/1

Many people are very upset, me included, as spreading acurate information about SPD in an effort raise awarness and offer support to parents and families is something I am VERY passionate about. Because of that, I felt compelled to write to Oprah and I wanted you all to know what I said.

Below is the letter:

Dear Oprah,

Your recent show about the 7 year old boy with mental illness struck a chord with me.

I have a 9 year old with Bipolar Disorder, Autism and Sensory Processing Disorder, who just like the boy on your show, has demonstrated physically and verbally violent behaviors since he was a toddler. For that reason, I was happy to see the stigma and challenge of pediatric mental illness being discussed in such a high profile forum.

However, what is described in this episode was not given a diagnostic label other than Sensory Processing Disorder (SPD or Sensory Integration), and inferred that sensory issues were the only challenge this child has.

I have multiple problems with this. I am sure the intention of the episode was to bring awareness to mental illness, but instead you spread misinformation about Sensory Processing Disorder and undoubtedly confused a significant amount of people who now think SPD is a violent mental illness.

For clarification, SPD is a neurological disorder, NOT a mental illness. It affects all 8 senses and causes children to respond inappropriately to their environment. It is treated most successfully by occupational therapy with an at home sensory diet. SPD does not cause rages.

On the other hand, Bipolar Disorder is a mental illness characterized by a chemical and physical difference in the brain, and is treated with medication and often Cognitive Behavior Therapy. Bipolar Disorder does cause rages.

I write about Sensory Processing Disorder, Autism and Bipolar Disorder and am passionate about spreading awareness and offering support to parents.

I am asking you to revisit this subject before you are off the air. Please give a forum to parents and professionals that can help clarify what Sensory Processing Disorder and Bipolar Disorder are. If I can help you locate parents or professionals, I am positive I can arrange it any time.

Thank you for all you have done for parents over the years, your show will be missed!

A true Oprah fan,
Hartley Steiner


Mother's Intuition by Alysia

Guest post by Alysia Butler of Try Defying Gravity

******

I’m so glad you’re here.

I understand that you’ve been struggling.  Please, sit down.  It’s a lot to ask, I know, when things are out of control around you, but you’ll feel better if you sit for a moment.

Take a deep breath.

Again, I’m happy you’re here.  It doesn’t matter how you got here.  Maybe you Googled “my son has meltdowns not tantrums” and that’s how you found us.  Or maybe your friend suggested a web search for “sensory processing disorder” because she saw something in your daughter’s behaviors that looked familiar, like her own son’s.  Or maybe…

Maybe you’re here because you just know something is different about your child.  And you feel so alone.

That was me three years ago.  I knew in my heart that my son wasn’t like the other kids.  He was not like his older brother at all. I actually knew it from birth, but it wasn’t until he was almost two years old that I really grasped that something about him was just…different. 

Everyone told me not to compare my two boys.  “Your oldest was SO advanced”, they’d say, “and so easy going.”  “My second boy was much wilder than my first.”  “You wouldn’t want your kids to be exactly alike, would you?”

Prescription for a Spa Day

Guest post by Michelle from ShesAlwaysWrite

**********

It's no secret that I'm a geek.  In our down time, we're Mythbusting or catching a Doctor Who marathon or YouTubing the latest Neil deGrasse Tyson appearance or debating if Greedo really shot first or kvetching about the travesty of a Buffy movie sans Joss.

But on the rare occasions I'm left to my own devices (and have cleared the DVR of cooking shows), I go straight for the scientific documentaries.  Can't get enough of them. The more graphic surgical footage, the better.  But really, I'll take anything medical flavored.

When I found myself with a little time last week to browse Netflix instant watch options, I went right for the 2008 National Geographic special Stress: The Portrait of a Killer.  Because, ya know, looking in the mirror to learn the same lesson would have required getting off the couch.

It's worth noting the whole darn thing is fascinating and well worth a watch. But there's one segment in particular that jumped out and grabbed me around the throat.

First, a little context.  In case you aren't a giant dork like me and don't have the definition of telomeres in your back pocket. In a nutshell:
  • Telomeres are special bits at the tips of our chromosomes
  • Shortening telomeres are associated with aging
  • Stress has been proven to shorten telomeres prematurely

Three guesses where I'm going with this.

The show included a segment about a group of special needs moms, and how scientists had a blinding flash of the obvious in noticing that they were a demographic under a particularly high level of stress.

(Another recent study looked only at parents of Autistic children and came to the same conclusion regarding elevated stress.)

So, in the particular study the show discussed... sure 'nuff.  Prematurely shortened telomeres.

In fact, a study conducted by a Nobel laureate in medicine found not only shorter telomeres, but a shorter life span by 9 to 12 years.  Yet another found stress levels in autism parents comparable to those of combat soldiers.

BUT.  Back to the show... wherein they found the parents who participated in a special needs  support group demonstrated quantifiably lower stress levels

Practically speaking, this means that in helping each other we are helping ourselves.  It means that we should be taking resources like Sensory Planet and the SPD Blogger Network to heart.  It means we should probably opt to spend our precious spare minutes sharing strength with our peers rather than herding sheep in Farmville.

It also means we should be thinking about our own needs, because nobody else is going to.   Hartley's First Things First series speaks directly to our habit of neglecting to nurture ourselves.  A little self support is going to help slow down those telmores, too.


The science is in, and the odds aren't on our side.  But it also means that what we're doing here is making a difference.  A few minutes here and there - whether it's to squeeze in a quick walk around the block or virtual hugs left in a blog comment to a fellow mom having a bad day - make a difference.

YOU. Make a difference. For all of us.  Just by being here to share the journey. Maybe not all the difference of an all-inclusive spa day, but who are we kidding? With our schedules, we couldn't squeeze that in if we wanted to.

Which is to say, thank you all for welcoming this newbie.  I can feel my telomeres getting better already.

ShesAlwaysWrite

I'm Nominated for an About.com Reader's Choice Award!

I cannot believe it.  Hartley's Life With 3 Boys and This is Gabriel Making Sense of School are BOTH nominated for an About.com Reader's Choice Award.  Wow!!

HLW3B is up for "Favorite Special Needs Parenting Blog" and This is Gabriel is up for "Favorite Special Needs Children's Book".  Yay!

A big FAT thank you to whomever nominated me, and a even bigger FATTER thank you to all of you who have been along this journey with me - reading, commenting, sharing and supporting!  I think you're awesome!

SHAMELESS PLEA FOR VOTES:  Please vote for HLW3B and This is Gabriel every day (yes, I know that is a lot to ask, but I would REALLY appreciate it.) from now until March 8th!  If you want a daily reminder to vote, email me.  Otherwise, click these links right here:

To vote for This is Gabriel click HERE.
To vote for Hartley's Life With 3 Boys click HERE.

If I have written something that helped you, inspired you, made you laugh, or ANY OTHER REASON, please share the voting links and help spread the word!!

Yay About.com!  Yay Reader's Choice!  Yay awards!

Yay YOU!

H

Intuition

There is much said about a mother’s intuition, and perhaps even more said about it in the special needs community.

You know what I am referring to – everyone who says “Follow your gut” or “I just had a feeling”. Right?

Absolutely.

There is something innate about being a mom, about having a child you are connected to in a way that allows you to know when something isn’t right or when your child needs you. It is why I would leak breast milk every time Nick cried. Even when I wasn’t there. I just knew.

Or how I could feel from the time Matt was just months old that there was something...different...about him.  And LONG before I ever breathed the word "Autism" to anyone - even about Gabriel - I knew Matt had Aspergers.  I just knew it.

And I hear the same thing from moms and dads everywhere I go.  Perhaps they are told to ignore their intuition - because the doctor thinks they are just 'new mothers' or their child is 'just spirited', but we as parents know. We just know.

But what about for our kids? Do we encourage them to trust their intuition? Their ‘little voice’ inside telling them what is a good idea and what isn’t?

Name the Octopus Contest (@SPDBN)

Hey everyone - we need your help!

We are holding a

Name the Octopus Contest

 at the SPD Blogger Network today.

Head over there and check it out.

www.spdbloggernetwork.com

HINT:  There are great prizes from Soft Clothing and Stress Free Kids

Nanny Jo and the Underwear Solution by Caitlin

Guest post by Caitlin Wray of Welcome to Normal

*******

If you’ve ever watched The Nanny, with Jo Frost - and even if you haven’t – you’re surely familiar with the recommended practice of putting your child back to bed in silence over and over and over (and over and over and over) until they give up and sob themselves to sleep.
I have watched Nanny Jo do this consistently on her show (which I watch occasionally to make me feel better about the chaos in my house, since mine almost never comes close to the chaos she encounters in her travels). Apparently this approach works every time. It’s foolproof.
But is it SPD-proof?
My little SPD Aspie, Simon, was still waking up over a dozen times each night when he was two or three years old. “Tired” doesn’t really do justice to the extent of my exhaustion during those years, before we had a diagnosis that made so many of Simon’s challenges more clear.
Even without a diagnosis, I didn’t have the heart to let Simon sob himself to sleep as a toddler. He co-slept, we slept beside his bed, we held his hand, rubbed his back, got him water, sang lullabyes. None of which really addressed the silent sensory problems he was, unbeknownst to us, stuggling with each and every night. I remember he used to squeeze my pinky finger obsessively, to help him drift off to sleep. It baffled me, but now of course, I understand.
The issue with Nanny Jo’s techniques (which are of course not just hers, but are widespread) is that I’m not sure it’s wise to leave ALL parents universally with the assumption that their child’s sleeping problems are merely excess neediness, and that they should be quashed with a firm and inflexible routine. A routine that includes ignoring what they are saying to you, in favour of a silent and swift return to their bed.

Sensory Fun in the Snow - Guest post by Martianne

Guest post by Martianne Stanger, full time mom and learner, part time teacher, tutor, blogger at Training Happy Hearts and Sensational Homeschooling Editor at Our Journey THRU Autism.
What an honor it is to have been asked back by Hartley to share ideas as a Winter Edition compliment to our summertime Sensory Fun in the Sun (and Shade) post.

Even though we rarely don our literal shades during the cold northeastern United States winters we face, we still find ourselves looking through our SPD lenses all the time in order to ensure frugal fun while feeding our son’s sensory diet. Indeed, whether we are rolling about in the snow in our own front yard, trekking through the nearby woods or freeing ice-bound creatures inside, we always do so with an eye for winter exploration and a good portion of sensory input!

Perhaps your children will enjoy one of our favorite Winter Sensory Fun Ideas:

In the Yard: Painted Snow Angels (for Motor Planning and Coordination, Proprioceptive Input, Tactile Input and Visual Fun)

Rinse a spray bottle out, add five to six generous drops of a favorite food coloring, fill the rest of the way with water and, then, don your snow suits (or whatever layers of warmth and water-proof coverings your SPD child will agree to).

Head out to the nearest patch of freshly fallen snow. Lie down on the ground and move your arms in and out from your body jumping-jack style to make a traditional snow angel. Then, step back and start spraying. Add a face. Color the wings. Spray on pants, shoes, a top and jewelry. Change the colors of these by spraying a second color over the first one. Then, if your kids are anything like mine, go ahead and decorate the entire yard! Shrubs laden with snow become all that more beautiful when a bit of color is added, don’t you think? And, the more of your yard you paint, the better work out those trigger-fingers get!

Looking through your SPD Lenses:

This activity feeds the tactile sense for three reasons. (1) The change in temperature when you go from inside to outside. (2) The feel of the cold and snow as you make snow angels. And (3), the pressure on your finger as you pull the trigger of the spray bottle.