Fabulous Miss S.

Toe Nail Clipping

Tonight I was putting Noah through a purposeful painful ritual that i'll call TOE NAIL CLIPPING, I know, right?  Send that mother to time out right now!

It's a sensory issue for him, overly sensitive toes, feet, something like that.  I just tell myself it must feel like intense pins and needles. 

He thrashes and screams and fights me and pushes me away.  But, before his toenails grow down and back into his foot, I have to clip them. 

Picture, if you will, a blacksmith holding a horses hoof between his legs facing backward.  I do the same with Noah, basically. 

After one good clipping he screamed, "GET OFF!"

And I looked at Marc and he looked back at me and he asked if that was what I thought it was and I said that it was.

So I looked at Noah, directly in the eyes and told him that I would stop because he asked me to. 

** This is his first "request" and "demand" and it was appropriate and spontaneous. 

Woo Hoo!  Success. 

Not success: the other 9 toenails still in need of attention. 

 

Pieces

Shall we start on a light note?  I'm really bummed that I have too much going on this week; something every day that is keeping me from enjoying a $50 Spa Week facial. 

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I'm really excited that the thing keeping me from a cheap and glorious facial tomorrow is that I get to see some of my favorite writers and ladies at a great event at the Capital Area Food Bank to learn about the Child Hunger Ends Here program.  I'm sure I'll have a lot more to say about this tomorrow night.  I have no idea what I'm going to see or hear and I'm excited for this opportunity to learn.

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Mallory has a weird foot issue that is bothering me.  When she started standing many months ago I pointed it out to the doctor that her left foot seemed to be turned out in an exaggerated sort of way, more so than the right foot.  At the time, the doctor said it was normal for feet to face outward at that age and it was all part of learning to balance and I listened and nodded and waved my hand, Phew! ... next issue, more snot!  But, I was laying on the floor watching her walk the other day and while she still does the just-learned-to-walk lurch thing, it looks like she is reliably using her left foot in a strange way.  She walks sort of on the arch of her left foot, and when she is in her harder soled shoes, the left foot makes a Thub-Thub sound as it smacks on the floor, more so than the other one. 

After a horrifyingly hand-wringy few minutes while I Googled Baby-Foot-Deformity I realized she DOES NOT have a club foot by any stretch of the mind but most likely has a very mild deformity probably corrected with a shoe or even just massage/therapy/manipulation, etc. 

Last time I had that nagging concern feeling in my gut about my child possibly have a tiny bit of a delay I stuffed it down with some Hydrogenated Fat and High Fructose Corn Syrup and then allowed a doctor to talk me out of my concerns.  And Boy! Was he wrong!  (I don't recall writing it at the time but an old pediatrician consistently blew off my concerns about Noah's lack of words, butt rashes, picky eating ... need I go on?)  Do I wait until her 15 month appointment in two and a half weeks, or do I call and go in TOMORROW?  I just want to address this immediately and since I suspect we'll need to see a specialist, why wait?  I'm thinking, proceed with urgency but pass go first and collect that $200 because you are going to need it for that Out-Of-Network specialist, dammit.

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I'm running again. 

I'm running a 5K on Saturday for Autism Speaks.  Of course I have a personal interest in the organization but the run is really for me.  I needed something to train for, something to do all on my own, goals, blah blah blah. 

After a few weeks of NOT running and doing mostly weight training, I got back on a treadmill last week and did a few three mile runs.  Day One I ran 3 miles in 30:22.  Impressive, for me.

Two days later I got back on the treadmill and set out to do it again.  Without setting out to reach this goal or even thinking about it really, I ran 3 miles in 29:53.  I achieved the ever-elusive SUB-30 minute 5K.  I was pretty damn impressed with myself.

I'm really really *really* thinking about doing a brief little 10K on Sunday morning too.  It's only 6 miles, I know I can DO it.   It's mostly downhill.  It is in a dense urban area with lots of stores so there will be plenty of distracting scenery, I mean, why not, right? 

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In between running and weight training to maintain my sanity I am trying to spend quality time with Mallory.  I still feel so much guilt because her life has been impacted so much by Autism. When I mention this piece to other people I usually get a roll of the eyes-nodding of the head Psshaw! because she is SO LOVED! and SO HAPPY! and Don't worry she's going to be the most resilient and most considerate person ever! comment and it's missing the mark, or maybe I'm just not good at explaining what I really feel.  Her reality of not having enough time to eat breakfast, EVER, crawling after me crying in the mornings because she just wants a cuddle or a hug or a few minutes of her mother not rushing around begging Noah to make pee-pees and put his damn shoes on already and "OK! Fine! Here's Super Why but SHOES FIRST THEN SUPER WHY." 

To assuage my own guilt I enrolled her in a class at Romp & Roll and she absolutely loves it.  She acts happy there.  She leaves my side.  She sits in her teacher's lap during story time.  She doesn't get upset when it is time to put the scarves away and get out the shakey eggs.  Who knew that that was a problem!?  Watching her imitate other kids, engage and enjoy these normal activities is like a breath of fresh air on a ten degree day, it feels refreshing at first, until the sting of the cold air reaches your chest and you cringe shut. 

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My little couch potatoes eating in front of the TV.  WHAT?!

 

Day 04 → Something you have to forgive someone for

It seems that I may have stirred up some controversy yesterday when I wrote about myself, unveiling my innermost emotions and revealing my unending pain about Noah having Autism and how it has deeply affected my family, my marriage and my relationships. 

I fear that some people took it personally.  It wasn't meant so. 

I was actually responding to the prompt of DAY 4 Something you have to forgive someone for as part of the 30 Days of Truth blog thingy.  I started writing and what I had to say took on a life of its own and I wanted my words to stand alone.  Then, this morning, I went back and read my words ( I hate rereading my own writing. *shudder* ) and I while I still felt the same feelings I realized my motivation was not clear.  My motivation for writing what I said yesterday was this: Something you have to forgive someone for.  I need to forgive people for not getting it, not understanding Autism, and for not knowing what to do.  People only know if I tell them and sometimes even I don't know what I need.  But I want to go further, I want to educate others about hot to help a friend in a crisis because even I am guilty of walking away when something feels uncomfortable, it's easier, and we've all been there.  

My message to those who may have been upset at yesterday's words, it wasn't about you and I didn't finish my thought.   

Lessons

I look at people differently than I used to.

I've spent a lot of time wondering what, if anything, Noah's autism is supposed to teach me?  In some karmic-cosmic way, was I choosen for this over, say, someone else. 

I'm a fairly empathic person, I'm kind and patient, so what else could the world be trying to teach me?

On a recent trip to the local library a class of metally disabled young adults was sitting in the kids section of the library. Mallory and I were leaving from a playdate and as I walked past them, rather than averting my eyes out my own discomfort, I looked them in the eye and smiled warmly because, each of those people has a mother who was at one point, in my shoes, wondering what sort of future her child might live, and truly only hoping for happiness, safety, friendship-- the important parts of life. And each of those people represented one mother's dreams and hopes and sadness and worry.

Each of those people were beautiful individuals.

They are all as unique as you and me. 

And Noah. 

 

Twas The Night Before Christmas - Autism

I saw this on a local parenting forum and it is just too on-point to pass up. 

Autism Night Before Christmas by Cindy Waeltermann


Twas the Night before Christmas and all through the house
The creatures were stirring,
Yes, even the mouse
We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally All nestled in bed
When nightmares of terror
Ran through my OWN head
Did I get the right gift The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.
“He needs discipline,” they say “Just a well-needed smack,
You must learn to parent…”
And on goes the attack
We smile and nod Because we know deep inside
The argument is moot
Let them all take a side
We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…


But what they don’t know And what they don’t see
Is the joy that we feel
Over simplicity
He said “hello” He ate something green!
He told his first lie!
He did not cause a scene!
He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!
Others don’t realize Just how we can cope
How we bravely hang on
At the end of our rope
But what they don’t see Is the joy we can’t hide
When our children with autism
Make the tiniest stride
We may look at others Without the problems we face
With jealousy, hatred
Or even distaste,
But what they don’t know Nor sometimes do we
Is that children with autism
Bring simplicity.
We don’t get excited Over expensive things
We jump for joy
With the progress work brings


Children with autism Try hard every day
That they make us proud
More than words can say.
They work even harder Than you or I
To achieve something small
To reach a star in the sky
So to those who don’t get it Or can’t get a clue
Take a walk in my shoes
And I’ll assure you
That even 10 minutes Into the walk
You’ll look at me
With respect, even shock.
You will realize What it is I go through
And the next time you judge
I can assure you
That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned….