12 Kinds of Awesome

I sang in choir from junior high through high school, in an a capella group in my sorority at U of I, and then later in the UIC choir.

I own CDs from The Other Guys and The Nylons.

Needless to say, I geeked out like you would not believe when I discovered Straight No Chaser.

Please enjoy a little bit o' hilarious holiday a capella awesomeness...

Pragmatic to a Point

A couple of weeks ago my BFF approached me with a strange request.

She is quite possibly the most pragmatic person alive, so it shouldn't have surprised me when she said admitted she was struggling handling the subject of Santa Claus with her 2 year old daughter (aka Bear's BFF "Yiyi").

She said she always wants her daughter to feel that she can trust her and that she is a reliable source of information.  Which means she can't bring herself to tell the Santa Claus myth.  But, she also doesn't want to deny her Santa altogether.

I promised to handle the Santa story for her.  Which is an easy promise to make, but tricky to execute when you've been struggling with it yourself.

After so many years of trying to conceive, I spent more than my fair share of holidays tearfully reading our tattered copy of The Night Before Christmas and wondering if there would ever be a tiny human snuggled on my lap to share it with.  I never doubted I'd go the Santa Claus route with any children I might be lucky enough to have.

Bear's first Christmas was easy enough.  He was only 5 weeks old and we were predictably schoompy about the whole thing.

But it's 3 years later, and I'm feeling a lot of uncertainty.  Now that he's this fascinating little human sponge / parrot hybrid, I feel keenly the weight of my responsibility to accurately inform him about the world.  And we're uber geeky secular humanist types, so we take scientific literacy very seriously.

Yet, I'm the same girl who - just a few weeks ago - admitted to my husband while watching Harry Potter that I wished magic was real.  I share my dear friend's pragmatism... to a point.

Since standing in a long line of heinous brats noisy kids at a blindingly bedazzled mall to sit on the lap of a stranger is hard for the average preschooler, obviously it's flat out impossible for a child with SPD.  So, I had a little leeway with the Santa conversation and decided to wait until the omnipresent seasonal imagery raised the question.

Now, the questions are here and I'm living that nightmare where you show up naked for a final exam you forgot to study for.

Grandma made Santa when I was born

There is something so wonderful in witnessing a child getting excited about Santa Claus for the very first time.  It's especially fun around here because this year it coincided with huge leaps in language skills and so quickly follows his 3rd birthday party (at which he first grasped the concept of "omg presents for ME?!?!")

So, I never thought about NOT going the Santa route, but the more I wrestle with it the less I feel like doing it old school - especially the whole emotional blackmail naughty vs. nice bit.  When your child struggles with SPD, a behavior the average outsider may perceive as "naughty" might be the very best they can do in a particular situation. There is no way I'm going to make that any harder for him with threats about Santa.

A 4th century figure for the 21st century

I've always felt strongly that generosity of spirit is something we should practice as a matter of course, and this time of year the rest of the world joins me in that sentiment.  Since the original St. Nicholas was a real man known for generosity to those in need, I figure that's a pretty good place to start.

At this age, I'm content to read classic tales about a jolly old elf with flying reindeer.  Their fascination is a joy to behold, and that's enough for me.

But next year... or maybe the one after that.  When they're older and wiser and pose precocious questions beyond their years, I think I'll be ready.  I can feel good about telling them that Santa Claus was a real man who lived such an inspiring life he helped the whole world understand that there is magic in giving.  We celebrate what he taught us through giving to others, and that will keep him alive in our hearts forever.

It's Beginning to Look a Lot Like Tacky

This first appeared in 2005 on Hitting My Stride (my triathlon blog). But the phenom has grown to epidemic proportions, so I was inspired to elaborate. 

As my nearest and dearest are aware, I have no patience for the zeal with which people display the most gawd awful Christmas decorations. When we drive past a particularly heinous display we will exclaim, with the joy of the season in our hearts, "Look, honey! Christmas puked in their yard!"

The newest trend in the annual travesty of taste are giant inflatable yard decorations. It started a few years ago with an occasional puffy Santa and devolved into an absurd collage of holiday-spirit-cum-pop-culture. (Does anyone else have a problem with 10 foot tall Santa Homer or Reindeer Scooby Doo?)

More than once we've joked about declaring open season on these earthbound Macy's parade rejects and driving around town with a pellet gun.

As new figures came on the market, some folks got the bright idea to put out little groupings of them - some of which approach what I can only imagine are LSD induced nativity hallucinations.

Now, of course, the folks who were creating makeshift nativities don't have to worry, because some enterprising d-bag took bastardization of the season to whole new levels with the creation of this monstrosity:

I'm an atheist and still find this offensive to Christian theology.

Hellbound blaspheming blowups aside, there is one local twit who still holds the record in my book for holiday WTFness. 

Oddly enough for a season in which people strive to out-garish each other, this blunder is elegant in its simplicity. These aren't folks that shingled their roof with lights or filled their yard with plastic reindeer and blinking candy canes. They have a single inflatable Santa. And at some point, these folks must have asked themselves "how can we make the most of our lonely balloon Santa?" And then they must have gotten high, because their solution was... (drumroll please)... to suspend Santa from a tree.

Yep. A tree. The topmost rope is nearly 40 feet in the air, so this took some serious effort. I'm guessing heavy equipment rental was involved. And, while I assume they were going for a benign "father Christmas looking down on us all" motif, the result falls far short.

A number of ropes going in various directions off Santa into the tree create a prisoner-on-the-rack effect, and for that special redneck touch they anchored his feet to a wheelbarrow. It's creepy in general, and is particularly disturbing when the wind blows, adding a Santa-having-a-seizure effect. When he's not inflated, it looks like a body that's been on the gallows for too long.

I desperately want to meet these people so I can ask them why they hung Santa in effigy.

Another Kind of Holiday Self Control

This time of year, most people worry about exhausting their willpower reserves to resist overindulging in holiday sweets.

Is there anything more symbolic of holiday overindulgence?

I'm not gonna deny that I have a giant sweet tooth and struggle with the sugary holiday bounty as much as the next girl.  But there's another thing that's actually quite a bit harder for me to control this time of year.

My beloved Bear is always up for whatever new and interesting thing is going on in the house.  Last year he has just turned 2 when the tree went up.  We gave him a couple of plastic ornaments, he goofed around the tree a bit, threw them at the dogs and wandered off.

This year it was a different story.  He was so into it he got upset if he caught anyone else putting up "tissus oments." 

This challenge was multiplied because we don't just put ornaments on the tree - I string garland around 3 big windows and doorways and hang ornaments there as well.

He eventually accepted that we could work together to deck the halls, and the job got done.  But it turns out the hardest thing for OCD me and the Martha Stewart that lives in my head was the wonky little clusters of ornaments that shriek "BEAR WAS HERE!!" in most endearing fashion.





The sappy mommy in me is proud to leave this off-kilter evidence that my baby is growing up and taking part in family holiday traditions.   But the OCD monster in me desperately wants to fix them when he's not looking.

I won't let my own issues ruin his proud handiwork.  I just wish it wasn't such a mental battle for me (though I'm happy to note my urge to interfere diminishes with each passing day).  I'm trying to simply enjoy this phase, because I know it'll only last one or two Christmases.

Looking Forward

The scene at my back door:

What my neighbors think it means:
I'm a poor sweet doggy left all alone out in the snow and nobody loves me. Won't you take pity on me? Pleeease? Let me in where it's warm and dry so I can shed on the couch pleeasse?

What it really means:
omg you guys there's snooooooowwww!!! And it's aaawweesoooooome!!! omgomgomg you have so totally got to get out here and check this out! Plleeeaaaaaaaaase won't you come out to play? Huh? Huh?! Comeoncomeoncomeoncomeon come out and play in the snow with meeeeeee!!!!

I adopted Kona 4 years ago because I was a triathlete who needed a running buddy and he was an under trained, overly energetic abandoned pup who needed to live with someone who needed a running buddy.  I still feel guilty for turning up pregnant 3 months after he joined our family and suddenly making him live a slower paced life he wasn't built for. 

Bear's and Kona's energy levels are a match made in heaven, and every day that passes brings us *this* much closer to a heartwarming boy and his dog scenario worthy of the smarmiest Hallmark channel movie.  Watching Bear growing up with this sweet, wonderful dog for a best friend is one of the things I'm looking forward to most of all.

2011 SPD Awareness Calendar

The new 2011 SPD Awareness Calendar is now available for purchase at Sensory Plant for only $12.50!

Proceeds will be donated to the SPD Foundation and The Children’s Institute for Learning Differences (CHILD).

Self Indulgent Mommy Nostalgia

Bear's 3rd birthday made me predictably nostalgic for his baby days. Not the awful sleepless screaming tantrum pre-diagnosis bits, but definitely the helpless snuggly tiny human bits. It's just... I woke up one day a while back and my baby was gone. This charming little boy I'm still getting to know sleeps in his bed now.

A few short months before his diagnosis...



A couple of weeks ago...

Happy Birthday Baby Bear

Happy 3rd birthday to my beloved Bear.

Thank you for taking me on the ride of my life!

Love,
Mama

Big Boy Bedroom

It took seven months of planning and saving up and finding deals here and there and doing a little bit at a time.  But I managed to meet my goal of transforming the trying to adopt OMG I'M PREGNANT neutral nursery into a big boy bedroom with the Bear Stamp of Approval just in time for his birthday.

Before...

After...

For those who are curious, the framed photos are of...
- an antique steam train we saw at the railway museum
- a tractor he got to climb in when we visited his Great Grandpa's farm this summer
- a fire truck he got to climb in a the local Touch a Truck event
- his Grandpa's semi (used at his Great Grandpa's farm to haul grain)
- the life size Thomas from the Day Out With Thomas event this summer

Also for the record... the blindingly blue paint was Bear's choice.

Talkin Bye Bye

Today, for the first time ever in public, Bear said "bye bye" loud and clear, and waved enthusiastically as we left his OT group. 

Those therapists work hard on the kids' social skills, and they always sing the Goodbye Friends song at the end of each session.  And we always try to get him to say bye when we leave.  But social graces seem to be lost on him, and he's usually much too focused on running into the busy parking lot to say a proper goodbye.  Besides, with his processing issues he rarely registers that you prompted him to say goodbye before everyone's already gone.

It's just like Bear to wait until he may never get to see them again to have a major breakthrough.  He said it twice - once inside as we were leaving and then again outside, he yelled it at their door. 

As I was putting him in the van, he said "Mommy, I like talkin bye bye my friends."

I'd already been holding back tears all morning, trying to explain to him this is the last week that he gets to see his friends who bring toys and play with him in the mornings.  It was all I could do not to totally lose it right there in the darn parking lot.

At least we might get to see his group again.  Our insurance has been (reluctantly) allowing it (so far), and he still absolutely needs OT assistance.  So after we find out what the school district has to offer (or not), we'll start figuring out if we can get him back in the group that's done such amazing things for him.

The Photo Captions Itself

Yeah, I realize it's ridiculous that the Halloween Queen is two weeks late posting about anything Bear's trick or treating adventure.  It's a little something I like to call irony.

The Least I Can Do Is Care

I was gassing up my van when I noticed a homeless man on the corner in front of Dunkin Donuts.  It's not like Chicago, where people step over the invisible homeless half a dozen times a day.  It's a rarity in my small town, and impossible to ignore.

His ratty cardboard sign said "Help a veteran?"

I had just come from running errands.  I'd spent all my money (and then some), and the last little bit in my wallet was earmarked for getting  Bear's hair cut in preparation for his 3 year portraits.

See, the kiddie hair cut place doesn't take credit cards but I never carry cash and my stupid bank is inside the Meijer and doesn't have a drive through and it's such a pain to take Bear inside any store, even for just a minute (especially for just a minute!), so it's always been kind of a hassle to scrape together the $13 in actual cash money to get his hair cut. 

Are you familiar with Dooce? Hysterically funny writer. Award winning blogger. Personal idol of mine.  Once in a while when she vents about a problem and then - to clarify that she completely and totally gets that she lives a blessed life and her problems do not register in the real, tragic, brutal world - she ends with some variation on "I KNOW. First world problem."

So I say about this: I KNOW. First world problem.

I was pulling the last dollar out of my wallet to give him even before my internal voice could finish whining.  Because that's what you do for the homeless veteran on a street corner with winter approaching.

I opened my window and smiled at him as I handed over the measly dollar, knowing I was going to a warm house with a car full of groceries and ashamed I wasn't giving him more.

He looke me in the eye and said to me "Can you forgive me for begging?"

What do you say to that?

I said the only thing I could think of: God bless.

Which is admittedly a bizarre thing for an atheist to say to anyone.  But in the brief span of that insignificant moment I desperately wanted God to exist for this man's sake.

His reply was "He just did, with you."

I cried the whole drive home.



I can't stop the war, 
Shelter homeless, feed the poor 
I can't walk on water 
I can't save your sons and daughters 
I can't change the world and make things better 
The least that I can do is care

Perpetuating a Meme

This one's for Stark. Raving. Mad. Mommy.  Because why go through life afraid of Stabbity Antique Nana Dolls when there are Zombie Stabbity Antique Nana dolls to worry about?

Diagnostic Limbo

Things have been so hectic with work in recent months that this week snuck up on me.  I've been waiting 6 long months for Friday, November 5th.  It's Bear's 6 month follow up with  his pediatric neurologist.   The day we're supposed to find out if he's autistic.

The first pediatric neurologist - the same one who pretended I was not talking when I brought up SPD and wouldn't acknowledge it as a diagnosis from the EI team - literally laughed when we asked about autism.  Our family sat huddled in the little appointment room, me clutching the autism warning signs checklist trying to make the doctor listen to me while Wonderful Husband tried to keep Bear distracted with goldfish crackers. 

The autism checklist my daycare teacher BFF brought because she was worried.  The autism checklist our pediatrician agreed applied enough that we should consult a pediatric neurologist.

Hell, the austism checklist the stranger at the park practically suggested I get my hands on when commenting on Bear's unusual behavior.

The doctor. Laughed.  At me.

He even waved his hand dismissively while saying "he's not autistic."  And that was that.  He was done with us.  I guess Bear's real problems weren't billable enough.  Which was fine, because I was certainly done with him.

Fast forward to spring 2010, the first visit after a 5 month waiting list for our shiny new, best in the area pediatric neurologist.

Who, after spending quite a long time with us asking relevant questions and validating all of our concerns, blew me away when he said it was not possible to rule out autism yet.

Which I knew. Really, I did. But to hear it out loud from the good doctor was surprisingly hard.

Is there a diagnostic code for "autism: wait and see?"

Bottom line, his SPD and his dramatic social delays made him appear to be on the spectrum, so it was impossible to rule out.  But this was after 6 months of speech therapy and occupational therapy and behavior therapy and he's made such tremendous progress it was reasonable to suspect there were other reason for his social delays... i.e.  autism was impossible to definitively rule in. 

The doctor's working theory is that the speech delay caused by the language processing disorder created the extreme social delays that made Bear behave an awful lot like a child on the spectrum.  He had no capacity to communicate, so it was reasonable to assume he could not develop socially.

We were told to go forth into the world, keep up with everything the EI folks told us to do and come back in 6 months.  If he starts to catch up socially, he would likely rule out autism at this visit.  (If not, he already told me we will continue with wait and see.)

So... six months in is he or isn't he limbo have passed.  Not a day went by that I didn't obsess over the implications of any given behavior. 

On good days, it was OMG, he shared his snuggle blankie with the therapist's baby doll!

On bad days, it was OMG, he's rolling that truck nonstop and won't respond to his name!

The school district made it clear I should let them know right away if he gets an autism diagnosis. Because of the timing they could get the additional services into the evals before his IEP meeting later in November.  But I feel like my bowl of alphabet soup is full... sensory processing disorder and language processing disorder and non-epileptic seizure disorder and potentially ADHD and signs of oppositional defiance disorder.   Even if it gets him more school services, I'd almost rather not have more if it means another straw.  Because this camel already needs a chiropractor.

I can't even say what I want the answer to be.  I honestly don't know.  The only thing I do know is that my Bear is my Bear and I love him as is, no matter what the paperwork says.

I Could Die Happy

Bear popped into my room this morning, climbed in bed with his babbit and blankie in tow, and asked in the sweetest little voice "Momma, ngungle wit me?"

Maybe It Makes Me a Bitch, But I'm OK With That

Last week I attended a seminar called Tackling Transition put on by my local Early Intervention office.  After the mini dwama surrounding my poorly coordinated transition meeting, I figured it couldn't hurt to attend the presentation to make sure my service coordinator hadn't left out anything else important. And they brought in reps from all the local school districts to allow for one on one Q&A sessions - bonus.

Recap
- Illinois state regulation is to provide parents with transition info a minimum of 6 months prior to aging out, including a transition workbook
- the workbook outlines the 6 step transition process (essentially, a serious of 6 meetings and decision points)
- my coordinator was nearly 2 months late scheduling the transition meeting
- even after I requested she provide me with any pertinent reading materials ahead of said late meeting, she said I didn't need to read anything  and she'd bring the transition book to the meeting
- the meeting, it turns out, was step 3 of the 6 step transition process, and halfway through the 50 page transition workbook

The only thing that was keeping me sane was A) having gone online, found the book and read it the night before and B) the knowledge that no real decisions are supposed to be made at the transition meeting.

Except that at my transition meeting, they essentially did the Domain Review (step 4 of 6 in the book) and decided to move forward with granting him evaluations!  A genuine reason to be upset about not being provided with ANY information ahead of time.  A HA. YUGE. decision about his future was made in the "meeting where nothing would be decided" and that my coordinator claimed I did not need to be prepared for.  Thankfully it was a decision in his favor, and the best one I could have hoped for.

So. It's the Q&A at the end of the transition seminar and I'm waiting in line to check in with my school district contact. And I notice the presenter - who happens to be the head of the entire EI program - had no one to talk to.

I'm not afraid to talk to anyone for a friendly chat, but I will chew off my arm to avoid any kind of confrontation.  I stood there in the meeting room for several minutes - most likely looking like a crazy person - while the voices in my head debated telling her about my experience.

I opted for telling her.

I told her I didn't want to get anyone in trouble, just that I felt it was important they understand what a traumatic experience it had been for our family.  I explained how it went down, and that I happen to be a detail oriented, by the book person who sought out the information on my own because I am nuts that way.  I explained that the average parent was not going to be digging into obscure department of education websites at midnight trying to get the information we'd been deprived of.  The average family is going to trust the coordinator, walk into that meeting blind and feel like they were hit by a truck.

I let her know how the meeting went, that decisions were made I should have been prepared for by my coordinator (not to mention the reading material I'd been denied) and that I was very concerned other families might be having the same experience.

She was genuinely surprised that I didn't get the book - she said their goal really is to get it to us a minimum of 6 months in advance.  She apologized profusely and said she hoped it was an isolated incident.  (Which I can guarantee it's not, because it was obvious my coordinator's MO is to present families with that book at that meeting.  The fact that she declined to provide it earlier upon direct request was evidence of that.)

I also told her that my coordinator has never returned a call for anything, and that after no fewer than 4 messages from me and a calling campaign from our therapists on my behalf, she still failed to remove our son's former neurologist from his EI records, and it was my vigilance at the latest meeting that prevented her from sending the records to the wrong doctor yet again.

The boss asked "do you mind if I ask who your coordinator is?" 

I hemmed and hawed and finally, reluctantly, gave up the name of my coordinator to her boss.

And as bad as I thought I'd feel about it... I drove home with a clear conscience.  This bleach blonde bubble headed fake 'n baked fresh out woman holds the futures of countless toddlers in her hands.  If she's going to suck at her job this badly, I guess someone needed to call her out to keep her from continuing to be a huge source of stress to the families she's supposed to be helping.

Maybe it makes me a bitch to have ratted her out, and I might feel a twinge if she loses her job.  But she's supposed to be looking out for the kids, and she's not.  So. Game over.

Sensory Activity - Fun With Spinners

One of the perks of living in Chicagoland is stumbling across things like tent sales where educational product companies are unloading warehouse stuff at ridiculous prices.

One of the things I scored recently was a six pack of game spinners for 50 cents and a Dinosaur Bingo game (with dinosaur spinner!) for 99 cents. I didn't really know what I would do with them, but I knew they were worth picking up.

It occurred to me that the colors on one of the spinners mostly matched the colors of the giant bin o' pit balls Bear got for his 2nd birthday.  And I recalled that his OT often has the kids go up and down the hall to perform some activity at either end.

Thus was born the ball game.

1) Spin the colored spinner at one end of the room/hall
2) Run down to the bin to retrieve a matching ball
3) Run back to other end and deposit ball (another bin, box, etc)

Bear thought it was great. He also thought it was the height of comedy to bring back the wrong color on purpose (while insisting orange was blue), or to bring back two balls instead of one, so he was in a good mood and easier to direct.  He got a kick out of spinning the spinner, and when we were done his reward for following directions was to sit in the big bin while I poured balls over his head.

Next goal is to play the game with multiple kids and work on his turn taking.  And I hope to incorporate a scooter like his OT does as soon as I get around to ordering it.

I'm definitely looking for ideas for other spinner based activities.  I already realized I can use the three color one to play Red Light/Green Light (though he's not ready for it yet).  I was also happy to notice we can swap the 6 number spinner out for die in some games (he can handle things like Cooties and Candyland, but isn't really clear on counting dots yet.  Plus, he tends to throw dice around the room).

Any suggestions?

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.

Will I Ever Learn?

10:56 am: Roll section of test paint color on small section of Bear's bedroom wall, well above his munchkin reach.

10:58 am: Commence rinsing paintbrush in sink.

10:58:23 am: Bewildered Bear presents paint covered hand.

In Between

We got Bear's weighted vest in the mail today.  I'd changed the order from extra small to small because he's had a really big growth spurt since the order was initially placed.  The OT's loaner vest went from looking perfectly reasonable to looking like a bad 80s crop top on him.

But I guess this company's sizes run big, because even though the measurements seemed appropriate the small is HUUUGE on him.  Not sure what to do.  He'll grow into it soon enough, I guess.  It's just right now I've got one on loan that's too small and one I own that's too big -  neither of which is going to do him much good in the short term.

The Things We Do For Our Kids

Bear got his first ever non-family birthday party invitation.  Lovely (soon to be) 3 year old little girl with a lovely mom we know through friends. Happy to participate.

But.  It's at Chuck E Cheese.

Which is against our religion.   Seeing as how this godless liberal family has but one creed, and that is: Never. EVER. Go To Chuck E Cheese.

It doesn't help that my visually defensive, auditory defensive, chronic migraine self makes such a place a personal purgatory.

But. Yeah, there's another but.  (Cause with an ass like mine, there might as well be two!)

Bear's OTs consistently assign "put him in social situations" homework.  On account of his social and language delays.

My BFF will be there (my rock, my sanity, my primary supporter who pushed as hard as I did to get Bear a diagnosis).  And her daughter, Bear's BFF (AKA YiiiiiiiiiiiiYiiiiiiiii!!! Always at full intensity and volume).  Their presence will make it bearable.

And I just found out the birthday girl is also in EI. So, there will be multiple supportive moms there who get it's harder for Bear.  That's one thing I'm sincerely dreading as this scenario repeats itself over time - the added stress of monitoring his reactions PLUS the judgment of other uninformed parents in attendance.

So we're going.  Just kind of wishing I'd gotten around to working out that migraine emergency injection pen with my doc...

Good Day

Great things about today...

1) Bear has blown away all his speech goals, and we have an appointment for next week with Early Intervention evaluator to determine if he is able to graduate from ST!

I'm nervous about giving up a service before I technically have to, but I also know that there are other little ones on the EI waiting list who need a therapist.  Our state budget situation is such that the therapists who work through the program aren't getting paid regularly, and some are starting to drop out because they can't afford to keep working with no guarantee of payment. 

So, even though I'm concerned about jumping the gun on letting ST go (if the evaluation shows he's ready), I also don't want to hold onto a time slot if another child needs it more than we do.  I couldn't bear it if I kept another family from enjoying this kind of happy success.

2) After months of paperwork and reminder calls and the OT hounding our (new, apparently a bit unreliable) EI coordinator for us, Bear's therapy equipment arrived today!  The program (with his neurologist's blessing) approved 2 kinds of swing and a weighted vest.  We had the meeting to get it requested about 3 months ago - I was starting to wonder if it would actually get processed before he aged out!

3) I suggested Bear ride his bike on the sidewalk, and he came back with "Ride Momma bike go park?"  How can you refuse that?!  So we went, even though I was dreading how close it was to naptime and the inevitable screaming scene to come.

But!  With a little creative transitioning (involving a water fountain and a sucker I'd stashed in the diaper bag) we were able to head home with absolutely no screaming.  Possibly a first - certainly a welcome relief!

A Number Approaching Infinity

Did you ever count the number of transitions a potty training SPD 2 year old perceives are required of him in order to physically get through one attempt on the potty?

Check Gross Motor Off the List for Today

Awesome Bear workout: chasing kite shadows across a huge open field.

Awesome Mommy workout: chasing free range kites liberated by distractable Bears.

Wi Fi Oasis

I got to know Bear's group OT staff well enough they granted me access to their office's wifi network.  Now, instead of wandering around Target or sipping an overpriced latte, I can bring my laptop to his sessions and squeeze in a little extra work.

I had let it slip the last few weeks, but then the not napping thing went from 'he's having an off day' to 'gawd help me, he's growing out of them.'

I feel slightly ridiculous lugging my purse, laptop bag and diaper bag into the office to be here for all of 45 minutes.  But it's rapidly becoming the most productive 45 minutes of my week.

Better Late Than Never

Once upon a time there was a writer who had a baby boy.  And it was really, really hard. And they found out it was hard because he was born with a neurological problem called Sensory Processing Disorder.  And the glorious chaos that ensued kept the writer from doing what comes naturally until the baby boy was 2 1/2.

Ya  know, WRITE about it.