Celebrating 30 Years: 30 Stories in 30 Days!

I submitted an essay to this content/fundraiser for SPD.  My entry is scheduled for publication on 10/24 at 6 pm.  Posted below are the details regarding how you can support my entry.

Courtesy of Hartley’s Life With 3 Boys...

Hartley’s Life With 3 Boys is holding a one of a kind event showcasing the stories of 30 Families parenting a child with SPD in 30 days and is designed to not only help spread awareness of Sensory Processing Disorder, but to raise money for the SPD Foundation’s 30th Anniversary.

With a new ‘sensational story’ posted every day through the month of October, including a never-before-published story from Dr. Lucy Jane Miller that will move you to tears, as well as the inspiring stories of other SPD advocates and authors such as Chynna Laird and Terri Mauro, and an emotional story told through the poetry of Jennie Linthorst, among the many other families just like me and you, these stories showcase what it is really like to raise a child with SPD and how increased support and funding is so desperately needed. This event will spotlight the struggles and successes every SPD family faces on their SPD journey; from ‘ah ha’ moments, to finding help through Occupational Therapy, these families are on the front lines of this disorder every day.


And helping them is easy.

Visit Hartley’s Life With 3 Boys blog and click on the “Chip In” widget on the right navigation bar. It will take you to PayPal, where you can make a donation in any amount you choose.

In an effort to encourage everyone to donate generously, prizes will be awarded to the person raising the most money each week and there will be a HUGE PRIZE PACKAGE for the person who raises the most money during the month. Also, if you raise $250 you will automatically win a prize!  So rally your friends and family, and have them donate under your name – all you have to do is ask them to leave your family’s name and email address in the comments of their donation – and you are entered to win!

The prizes are fantastic! Here are some of the things you can win:

- Autographed copy of "My Brother Charlie" by Holly Robinson-Pete and her daughter Ryan Elizabeth

- Autographed copy of “Not My Son” by Rodney Peete

- 2 Year Subscription to S.I. Focus Magazine, valued at $49

- $50 Gift Card to Build A Bear Workshop

- 1 Custom weighted blanket of the winner’s choice -- up to a $267 value – from Dream Catcher Weighted Blankets

- Movie tickets and concession coupons for 4, donated by AMC Theaters
(check out their sensory friendly films!)

- Collection of books from Carol Kranowtiz (valued at $150)

- Autographed copy of Sensational Kids by Dr. Lucy Jane Miller

- DVD Sensory Processing Master Class By Drs. Brock and Fernette Eide and Lindsey Biel MA OTRL

- Autographed copy of Raising a Sensory Smart Child by Lindsey Biel MA OTRL and Nancy Peske

- Autographed copy of The Mislabeled Child by Drs. Brock and Fernette Eide

- Sensitive Sam, by Marla Roth-Fisch

- Autistic Like DVD from Erik Linthorst

- Copy of The Everything Parent's Guide to Sensory Integration Disorder and 50 Ways to Support Your Child's Special Education
Donated and written by Terri Mauro

- $100 gift card to Borders from Liz Chapdelaine, SLP

- $75 gift card to Teres Kids (Sensory Friendly Clothing) from Alex Merlino

- 2 Soft Clothing prizes packs:
*two shirts and pants for a boy
*a skirt, top and dress for a girl

- Model Me Time For School DVD from Model Me Kids

- Kid Companions wearable, chewable, fidgets from Lorna d'Entremont
*2 Kid Companions with clips
*2 Kid Companions on organic lanyards
*2 Kid Companions on colorful rayon/cotton lanyards

- Therapy tools from Your Therapy Source
* Large Bilibo
*Mini Bilibo
*Fine Motor Activities CD-ROM collection

- Therapy tool from Fun and Function
*Large Peanut Ball

And MUCH MORE. To see a complete listing of prizes, view HLW3B’s prize page.

Now is the time to join in on the fun and help spread AWARENESS of Sensory Processing Disorder far and wide and provide them hope for tomorrow.

Hartley Steiner

Meme Spirited

Getting passed this "award" from a fellow SPD Blogger was a pleasant surprise, and I'll do my best to go with it in spite of the grumbly sore throat kleenex haze I find myself in today.


Here's the seven things to share about myself...

1.  I grew up in relatively rural, smallish Midwestern town and moved to Chicagoland after college to look for a job.   I have been known to use the word "y'all" and if I have a drink or two my carefully redacted redneck accent comes roaring back.

2.  I can haz a BA in Engineering Communications from U of I Chambana, and a BS in Biological Sciences from U of I at Chicago.  Which means I am qualified to do little more than write about geeky stuff.

3.  Cooking is how I show my people I love them. 

4. My husband and I met in music theory class when we were both engineering majors. 

5.  I played the clarinet from 6th grade through college, including a 3 year run with the Marching Illini. The MI was the hardest favorite thing I've ever done, until...

6.  To manage the fallout from my chronic health condition, I took up triathlon.  At 150 pounds overweight.  I've lost 50 pounds and have finished 5 races.  Someday I want to finish an Ironman. (When I have time, I blog about this over at hitmystride.blogspot.com)

7.  It took us nearly 7 years to have Bear.  SPD be damned, he was worth every moment of the wait. 


And.... it's past my bedtime and I'm really rather sick.  I'll have to revisit passing the baton when I'm not feeling so rotten.

Wishful Thinking

Every time I buy a box of these, I wonder if it will be the last time.

Then I spend 20 minutes trying to calmy cheerfully playfully firmly desperately request suggest insist instruct beg him to sit on the potty.

And then... I go back to clipping diaper coupons.

Dichotomy

This morning I took Bear to a bike shop to size him for the Big! Boy! Bike! that he's getting for his 3rd birthday.  It went well (i.e. he passed as an NT for that 15 minutes in public), and we even got a wistful 'awww, it's his first bike' from one of the bike shop dudes.

It was lovely little 'my baby's turning 3' moment.  Just me and my Bear, geeking out over all the shiny bikes and generally having fun.

Cut to tonight.  I'm hunched over the computer reading screens full of 40 page PDF documents and workbooks with names like "When I'm 3, Where Will I Be" and watching bad videos made by the state to help with the transition out of Early Intervention.  And I can't stop crying. 

This is one of those times it hits me how different things are for us, and that other families don't have to do this extra stuff.  The average parent will never have to do a workbook with a cheesy name masking a terrifying question.

It makes me really, really wish I didn't have that meeting tomorrow so I could, just for today, pretend that we're one of those workbookless families who just gets to enjoy the shiny new bike side of things.

New Favorite Treat

Someone in the organic co-op I participate in was splitting a case of frozen bars I'd never heard of.  It was high summer and frozen chocolate goodness sounded like a nice idea, so I went in for a couple boxes.

It was one of the best impulse buys EVER.

Luna & Larry's Organic Coconut Bliss is my new go-to sweet treat. I get the dark chocolate 'frozen dessert bars.'

Which is to say, I get the ones that taste like a fudgesicle sans the guilt.

They're soy, dairy and gluten free. And vegan. Made from organic coconut milk and fair trade cocoa. Very reasonable calorie count.  The coconut flavor is subtle and pleasant - which is great, because I was worried Bear wouldn't go for an unfamiliar taste.

I am in no way getting compensated for talking about these.  (But if anyone over at Luna & Larry's wants to send me some stuff I'm not gonna say no!)  It was just such a pleasant surprise to find them so incredibly good - and acceptable in so many restricted diets! - that I couldn't help wanting to share my find.  Pretty much every mom I've met from Bear's OT group struggles with dietary restrictions for their kids on top of the SPD.

And if you don't believe me, just look at this face...

Looking for Concrete Suggestions, Fast

Bear's EI transition meeting with the school district evaluators is on Wednesday.

My EI coordinator told me there's no need to prep and that she'd give me a book at the meeting.  Clearly, she has no idea what kind of OCD pre planning mommy warrior she is dealing with.

(And possibly... a vapid nitwit who needs to be beat with a clue stick?! I mean... telling parents not to prep for one of the most important meetings of their child's entire life?!)

Anyway.  I found the ISBE site full of documents and worksheets and even a little video.  So, that's what I'll be immersed in between now and Wednesday morning.

Here's the situation:

- Bear's gonna be discharged from speech.  He's caught up, there's no way he's going to qualify for school district services (requires 30% delay).
- OT is only considered a "support service," and if he's not in ST then he won't be granted OT through school
- at this time, none of his additional diagnoses support a request for OT
- all of our wonderful EI therapists have been telling me to ask for what he needs, but prepare for the high probability that he will not be granted services

Here's my question:

Assuming the stars are in alignment and the dog doesn't eat their homework, SPD will be validated for bureaucratic purposes with the next edition of the DSM.  Which is due out BEFORE Bear starts kindergarten.  Which changes things.

How should I handle that conversation with the evaluators?  Since I already know to expect nothing from them, I refuse to tap dance around his SPD.  I've read things that suggest not to mention it since it's not "official" and to stick to only discussing whatever other diagnosis can get what your kid needs.  I feel like I'm free of that particular semantic burden.

I know I can't play the bitchy bully, but I also want them to know I'm a well informed parent who doesn't intend to back down.

So... should I play dumb and ask them how they would like to manage things when the situation for SPD changes, or should I simply inform them I'll be knocking on their door while the ink on the DSM-V is still wet?

And I do go ahead now and start talking about the classroom concessions his OT is already suggesting he will probably need?  Or do I wait another 3 years, when he's actually going to be in a classroom?

Another Reason I Love My Husband

We wanted to take Bear for a walk around the (3/4 mile) block (or something comparably active) this morning, before strapping the poor unsuspecting child into a car seat for 400 miles.

While we were packing he found the wheelie backpack his Mawgie got for him and was happily dragging it around the house.  Wonderful Husband decided to get Bear out of the way while I finished packing, so volunteered for walk (wander, look at ants, listen to cars, talk about doggies...) duty.

Bear insisted the backpack come along for the walk, and even in my half sleepy cranky frantic vacation packing state I managed to have a brilliant insight before they made it out the door.

Me: Honey! Put some weight in the backpack.  Some canned food or something.

WH: (grabbing first thing he sees) How about a stack of books about SPD?  For the irony!

Learning Curve

We have a history of planning fun activities for Bear we're *sure* he'll love, and invariably he freaks out and refuses to participate.

Like the time we said to ourselves "Bear loves his dried bean bin and goes crazy for sandboxes... let's take him to play in the giant dried corn sandbox at the fall festival!" He freaked out and clung to me.

And the (several) times we said to ourselves "Bear loves to jump on the couch and trampoline and... well, anything really. Let's take him to [insert any recent community activity], they have a bounce house." Cue the meltdown.

I thought I had it figured out: he doesn't do well in public situations. This is not news. So I thought something new and fun at home would be a slam dunk.

But I should have known my little bathtub addicted sensory seeking mess maker would not, in fact, react the way I'd hoped when I sucked it up and dealt with the smell finally introduced shaving cream as a sensory play activity.

There was screaming. And crying. And refusing to participate. And a complete freakout when a tiny dot got on his hand, ending only when I let him turn on the water to wash it off.

It took a while. And a lot of being silly. And a lot of letting him smack it around on me, my clothes, my face and, ya know, my dignity. But he finally came around. A little bit.

Especially when he discovered he can hold my hands and skate around the tub. And realized I'd let him push the button to get more.

But mostly... predictably... he just tolerates the shaving cream until I give in and let him turn on the water.