Hope is the thing with feathers that perches in the soul
And sings the tune without the words, and never stops at all
And sweetest is the gale is heard; and sore must be the storm
That could abash the little bird
That kept so many warm...
~Emily Dickinson

Wednesday, July 13, 2011

A day on the job.

It is my "job" to take care of Kannon.

The thing, is that with most other jobs you get to end your day at a certain time.
Not with this one.
I get no paid vacations, in fact I get no vacations at all.
It is literally non stop...sometimes into the wee hours of the morning if Kannon doesn't sleep.
There is no office banter or water cooler talk...no adult conversations...hell I'm lucky to get any conversation most days.

Then there is the parent aspect to all of this...and not just a parent, a mother.
Not that mothers are better than fathers or vice versa, we are just different...
I don't get to send Kannon off to summer or soccer camp.
I also don't have the luxury of being able to drop him off at a friends house for the afternoon to play.
If we do any activities it requires a lot of time, sometimes tantrums, crying, screaming or negotiating of some sort.
I don't get to ask Kannon what he wants for dinner, he only can have so many things...due to diet and picky eater syndrome.
I usually end up making 2 or sometimes 3 different dinners every night...
I have to spend 3 times the amount of what normal groceries cost due to Kannon's specific needs.
I can only go grocery shopping with the assistance of one of his therapists or another adult.
I rarely meet other parents because due to Kannon's special needs we are often isolated in our environments.
To be honest, I have never had a parent of a neurotypical child approach me ever...even if Kannon attempted to talk or play with their child...so play dates are non existent.

I sat on the park bench this afternoon while Kannon was playing with one of his therapists and I watched all the other kids and parents around us.
Most of the kids were laughing and playing without a worry in the world.
Other's were being naughty...some were in their own world playing.

Then there's Kannon.
A therapist always at his side...with their notebooks and clipboards taking notes on his actions.
His hands flapping out of control, making strange noises, and wandering all over the place.
He doesn't want to play on the playground, today he wants to wander around in the bushes and look for rocks...his pockets full, his therapist behind him noting the random 3-4 word sentences that may creep out of his mouth...
Yeah, he gets a lot of looks.
Most just curious, some judging, All of them notice that something is "different" about this kid.

Then there's me.
Off in the near distance watching it all.
Wishing so much with all my heart that he could be normal for just a day...
Just one day...without all of this business.
Having a week of quiet in our home without people constantly coming in and out for therapy appointments.
No more therapists on his heels all the time, no more having to "earn" play time,  no more having to be told to have quiet hands or quiet body, no more daunting stares from everyone he walks by...
Just one normal day for him.
He deserves that.

Selfishly I say a wish up to the sky for a day that I can be normal too.
Just feel it if anything.
Feel normal.
Feel that I can turn my back on my child for one second and things will not fall apart.
Know that he will be alright walking on his own.
To not have little kids run away from Kannon laughing at him and calling him cruel names, all while I watch in silence.
Know that I am not to blame for all of this...
That his condition is not my fault.
To really feel all of this is my wish.

If this really was a "job" I would have been fired by now.
I have broken all boundaries, protocol and rules.
I have had to feel so much every day without thought.
It just happens.
I have no choice to call in sick.
I have no choice in the passion I feel towards my job, it just is.

I am absolutely doing the most important job out there.
I believe that.
I wish for the future parents out there who get the same job that I do that other people can find the beauty in what we do too.
That we are respected in our work.
Because right now, unfortunately until Autism is better understood we are looked upon a lot of the time as "bad parents"..."unable to control our children"...

The patience, the love, and the passion we feel is because of these little people given to us.
And we do this job because it is necessary.
Not because we have to.
Because, we really have to.

Just needed to vent a bit.
In hopes of creating a better understanding...

Also, if you ever see someone sitting on a park bench alone, smile at them...
And if you see a little person who seems "different" walking to the beat of their own drummer...smile at them too.



  1. feel free to vent :)

    So...you sound like there are therapists following a step behind Kannon watching his every action and not engaging with him at all! I'm sure there's some engaging with his therapists and doing play in his natural learning environment...right? I'm hoping?? If they're not, why in the world do they need to document everything and not engage with him, unless it's a very very long eval? And tell 'em to give the dang notebooks/clipboards a rest! sheesh! :)

    The other thing is - It's easy to assume we know what goes on in other people's heads at the park or in public, but we don't. :) You never know who's watching compassionately/neutrally because their best friend has a kid on the spectrum, or their sister's daughter is on the spectrum. I, as a mother of a kid on the spectrum, may just be sitting around minding my own business at a park, letting the kids be. There's all kinds of people out there.

    And he'll have playdates on his own terms. When Noah was 3 or 4, I got tired of being looked at myself at the park and I contacted the local listserv and said, "Hey, any ASD moms want to bring their kids and meet us at a fenced park?" The response was HUGE. EVERYONE is feeling isolated just like you. Try, and keep trying, until you find your tribe - you'll have a built-in set of playdates for Kannon, and you will feel loved and you will feel so much better. I promise you, you'll find them - speaking from experience as someone a little further down the road from you. XO R

  2. You know, I may have been having a bit of a pity party on this one...yes, yes I was :)
    I think the past month affected me more than I realized. Grumpy woman gone wild!!!
    SO, yes for the most part the therapists are engaging him and interacting with him in a playful and appropriate manner. However, they are always a step behind redirecting him... I will say that most of the therapists we have come across are amazing...but yes the clipboards must go, and the constant demands being placed on Kannon are obviously for his best interest. I must remind myself of this too...

    More importantly, you are so right about not knowing what people are thinking.
    I would or should never generalize people just because I have had a handful of negative experiences...
    It does not mean I should move forward with a grudge or misconception due to my own insecurities.
    Thanks for the reminder to be the change that I want to see in this world.
    It takes another mother walking a similiar path to set things back in perspective when sometimes my emotions get the best of me...

    Thank you :)

  3. so welcome. I totally forgot if I told you this previously, but I'm more active on fb if you want to be fb friends - just email me at redheadmomma at msn dot com & lemme know how to search for you :) also let me know if you want into my password-protected site that talks about school etc. :)