Autism Is…

 

Autism Is…

a 47-pound, almost-5-year-old in diapers who thinks the toilet is a playground.

wild nights with no means to quiet, calm or comfort your child. 

locks on everything – everywhere – praying that your child isn’t the next one to disappear in the middle of the night, never to be seen again.

not knowing what your child thinks or feels.

not knowing when or where your child is in pain. 

saying, “I love you, Baby” a thousand times and never hearing it back.

feeling desperate for a hug from your child, knowing that they will push you away every time.

expensive.

isolating – few people understand what this life is like, even fewer stick around to try.

lines of Pixar Cars in front of the cable box – again – in the exact same order – blocking the remote signal and reminding me – again – that autism sucks.

repetitive – it is the same song, the same movie, the same word OVER AND OVER AND OVER AGAIN.

a never-ending fight to get the education your child deserves.

24/7 fight or flight exhaustion – there is always something else waiting to attack – diet, sickness, behavior, education, social anxiety, sensory overload, fear.

devastating to siblings.

never letting your child out of your sight, no matter how old they get.

living in a bubble of constant worry.

still washing, wiping, brushing, bathing, diapering and dressing your kid who is able to ride a tricycle and read 200 words but cannot do these simple self-help tasks.

picking plates and silverware out of the garbage.

cleaning up puke that was never going to make it into the bowl on her lap – because the bowl was in her way.

never having fresh-cut flowers or scented candles on the table.

always putting every pen, pencil, marker, pair of scissors and tape dispenser in a locked drawer because you never know who or what will be drawn on, cut into a million little pieces or taped together permanently.

never finishing a cup of coffee while it is still hot.

sign language, picture schedules and social stories just to go to the store.

always carrying a spare set of clothes, shoes and extra hand-sanitizer because poop happens – and happens again – in the most bizarre places and is somehow irresistible to explore with little hands.

feeling the glare of strangers.

being an advocate, special education expert, dietician, physical therapist, occupational therapist, speech therapist and consultant without a paycheck.

being asked the stupidest questions on earth – “Are you sure it’s autism?”

hearing the absolute worst attempts at lightening the mood – “It’s the age, she’ll outgrow it.”

many inside jokes between you and your spouse that are not all that funny.  “5 – 4 – 3 – 2 – 1…” – the seconds we count out loud when our daughter actually comes to sit on our lap and how long she will stay before she becomes physically uncomfortable being so close.

getting hit and kicked repeatedly by your child because they just cannot tell you what/why they are so mad.

never going on a ‘real’ vacation – one that isn’t prepped with exit-strategies and backup plans and is ultimately destroyed with tantrums and sensory-overload.

a revolving door of babysitters – once in a while you actually get to have one.

date night on the couch with a Top Gear rerun and Ben & Jerry’s and maybe sitting next to your spouse, too.

listening to your fellow Warrior Mamas kicking some serious autism ass – and holding them up when they feel beaten down.

praying – praying ever so sincerely that things will get better – praying every moment that scary things like seizures and self-injurious behaviors will not win – praying for progress, however small.

selling your soul and your story to legislators when all you really want is a nap.

telling your story and putting yourself out there as vulnerable and needing help – when really you just want to fix it and make others understand why.

loving your child so fiercely it hurts – it hurts so very much – and you would do anything and everything in your power to make their life just a little easier.

hard.

About Rachel Kenyon

Rachel Kenyon is an Aspie, Advocate and single mom of two beautiful babes - The Boy (11) and RM (8). The Boy is a Legomaniac and RM is a kick-ass diva with Autism and 4q Deletion Syndrome. View all posts by Rachel Kenyon

17 responses to “Autism Is…

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: