Tag Archives: special needs

Ride the Train Over to the SPD Blogger Network

Good morning, Friends.

Today I am honored to be a guest over at The SPD Blogger Network (SPDBN)!

Come see me –>HERE<–.

About SPDBN:

“This group blog is designed for those writing – or those who want to write –  about raising a child with Sensory Processing Disorder.  This is a  place to share stories.  All of our stories.

Potty training nightmares, sleeping challenges, Occupational Therapy success, picky picky eating (or none at all), social skills challenges, meltdowns at the grocery store, and the every day chaos (and joy) that is raising a child with SPD.  Here is a place for you to write it all down.”

It’s an amazing gathering place for all things sensory.  Come visit me over at the SPD Blogger Network today!  I am honored to have pulled up a keyboard and joined an amazing group of people riding the same train.  Did you know that both RM & The Boy experience Sensory Processing Disorder?  Grab your ticket and hop on the train for a few and see what we’re all about!  Join us at SPDBN!

Cheers,

Rachel

Advertisements

Hide and Pee

So why was I standing in my own bathroom peeing my pants? 

Simple. 

I was in the middle of the most exciting, giggly game of hide-and-seek with my autistic daughter and damned if I was going to interrupt it for a bathroom break. 

It was our fourth round.  Fourth.  

She would yell, “Run! Run! Run!” and I would chase her into the living room where she would hurl herself onto the couch face first, legs flying.  We would shriek and giggle and I would tickle her crazy and run off down the hallway laughing to hide myself again. 

She would pause.  She would wait for a moment on the couch giving me time to hide.  I could hear her slowly walking down the hall, almost tip-toeing (the good kind).  I picked a different room each time.  Her bedroom, The Boy’s bedroom, my bedroom.  And now… the bathroom. 

She was systematically searching.  Like it was plannedThoughtful.  She knew to be quiet about it. 

So there I was hiding behind my bathroom door trying as hard as I could to keep from completely wetting my pants.  There was no stopping now.  My baby girl was PLAYING

And then… 

BOO!   

More hysterical belly-laughing, hugs and kisses and big smiles.  The giggles were priceless.

Best.  Hide-and-seek.  Ever. 

Maybe next time I will use the potty first.

 


‘Appointment’ is a Four-letter Word

Someday, perhaps as I drift through the pearly gates in the EZ-pass lane, I will get the answer to one of my most burning questions: Why the hell is it that a single task requiring a single phone call to schedule a single appointment can be the most crippling and insurmountable undertaking for some of the most brilliant, capable women on the planet?  I am talking about myself herePardon me if my Snark font is broken. 

I have a ‘to-do list’ like everyone else.  It’s rather large like everyone else’s.  There is nothing too ridiculously overwhelming on that list of mine, unless you count ‘reshaping the world’ a remarkable goal.  I mean really, I would consider a federal bill to make autism therapies accessible for military families a rather cool objective to check off my list. 

I digress. 

I am pretty confident that I am not alone in my quest for an answer to the above.  I have met many incredible women who accomplish more in an hour than most do in a lifetime.  I surely wish I was so motivated.  However, there are these minor tasks on our lists that still manage to elude a great number of us – scheduling appointments.  

Maybe it’s the commitment implied by the word ‘appointment’.  Maybe it’s the going-to and hearing-about-that-too that we are avoiding. 

Lord knows RM has seen her share.  Those first two years were exhausting and we met more docs than I ever care to count again.  When you are claiming hospital parking fees on your taxes, you’ve been to ‘lots of appointments’. 

So I found out yesterday that RM hadn’t been to the eye doctor in three years.  The sheer guilt was motivation enough for me to sit down today and go through the list of specialists she is overdue to see.  Crap.  Neurology.  Cardiology.  Gastroenterology.  Plastics.  Orthopedics.  All overdue. 

Maybe when the everyday is fought so hard for just to get through it, then the rest seems like gravy.  Is it urgent that she see these docs tomorrow?  Well, not really.  Is it important?  Certainly.  

Maybe I just cannot take hearing one more time that my daughter needs something else

I made two phone calls today.  I scheduled neurology for tomorrow thanks to a last-minute cancellation and I requested an appointment with the plastics/microsurgery office about her pinkie finger.  

And then I was done.  

Two out of five ain’t so bad. 

Cheers.


Off

I don’t have much time this morning.  I have a dental cleaning for myself in less than an hour. I have four-thousand other things on my to-do-list.  Oh, and I am generally pissed off today. 

So here goes. 

RM had an ophthalmology appointment yesterday.  It had been a while.  Almost three years.  I had no idea.  I knew it had been a while but not three whole years.  RM was born with a whole number of medical issues and one of them was optic nerve hypoplasia (ONH) – small optic nerves.  This can cause blindness, crossing and other vision impairments.  But at her last appointment three years ago *ahem* the doctor had said with confidence that after following her for two years, he felt that her nerves however on the small side did not appear to be of any large concern.  “Let’s just keep on top of it by checking her yearly.”  Sure, if I remember to bring her to you every year. 

Anyways, things looked good.  RM did a phenomenal job throughout a ninety-minute appointment including a 15-minute pause in between for dilating drops.  At the end of the appointment came the shocker.  RM is slightly farsighted.  In other kids her age glasses would not be recommended.  But considering RM spends full days in an ABA program doing sets and tasks up close, we decided glasses for school would be a gamble worth taking.  Maybe she will appreciate them and wear them with ease, maybe she will have nothing to do with them.  I was also warned that sometimes, children in ABA programs who begin to wear glasses for farsightedness will show a temporary improvement in progress – not due to the vision improvement – but because of the praise and focus on the glasses to entice the child to wear them.  Interesting.  

As I handed over my debit card to the optometrist to pay $250 for the adorable purple glasses RM had just picked out, I kept thinking about how ridiculous this ride is sometimes.  And I really, really wanted off


Put Down Your Hammers

RM isn’t quite there yet.  Surely, she will always be unique.  But right now, at 5-years-old, she is safely tucked away at an outplacement ABA program that caters to exactly who she is.  There are only square pegs there.  From staff to students.  All square pegs.  It’s a safe space for her to learn how to learn.  Period. 

But someday, she will be out in the world; whether in an integrated classroom at the public school or as an adult in the workplace, she will need to fit somehow.

Stimeyland wrote an amazing post, “Not Even Wrong”.  And I want you to read it.  I want everyone to read it.  It applies to everyone.  It applies to me.  It applies to my neurotypical son who is not so typical and it applies equally to RM.

So please.  Read on.

“…It also perfectly encapsulates what I want for my kid—a place, an existence, where it is okay for him to be not even wrong. Because I love the way Jack’s brain works. I love the way autism has given him this unique perspective that lets him come up with some of the most amazing things. I adore his not even wrongness. I want him to find a way of life where starting from a fundamentally different point of view is an asset to him and where he can be valued for that.”

For the entire article, please go to Stimeyland.

Stimey is mom to Sam, born October 2001; Jack, born May 2003, and Quinn, born May 2005.  Stimey is a stay at home mom among various other part-time endeavors and jobs, including learning about parenting her autistic child (Jack).

Stimey also founded and runs AutMont, a website dedicated to autism-related events, information, and community in Montgomery County, Maryland. AutMont is also on Twitter and Facebook. Email Stimey at: stimeyland@gmail.com or follow her on twitter: http://www.twitter.com/Stimey


Lost and Found

The other day I wrote about labels and my own emotions surrounding an ID bracelet for my daughter that would label her as ‘Autistic’. 

About thirty minutes ago – in the blink of an eye – my entire perspective on labels changed dramatically.  Forever. 

RM was missing. 

She had spied her brother riding his bicycle around the block and decided to do the same.  Right under my nose.  We live in a thousand-square-foot ranch.  She was literally. under. my. nose.

She had taken the step stool from the bathroom and used it to reach the latch at the top of the front door. 

It was ten minutes or so before I realized she was gone.

I had never felt so sick to my stomach before in my life.  I couldn’t breathe. 

I raced outside screaming for her. Screaming at the very top of my lungs with every bit of air I could squeeze in so that I could expel as hard and loud as any human ever had.  I wanted the world to hear me.  Because I knew my baby girl wouldn’t respond – someone had to

I found her rather quickly.  THANK GOD. 

She was gearing up to get on her bike and take off in search of the fun her brother was having. 

She smiled when she saw me and exclaimed, “HI, MAMA!!!”  Completely unaffected by my panic and tears. 

That damned bracelet cannot get here soon enough.

I am seriously considering the GPS tracker.

And now that the episode is over, both kids are tied up and stuffed in the closet – I’m having a drink.

F’ing Cheers.

 

 


#WordlessWednesday Autism Fashion Photo Essay


%d bloggers like this: