This is OUR Autism.

If you meet one child with autism, you have met one child with autism.

This is our autism.

It’s the sweet morning cuddles every single morning- be it 7 AM or on a full moon- 4AM.

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It’s not being aware of your size and thinking you can jump on your Mama and climb into her lap anywhere and every where.

It’s the way he isn’t able to hide his happiness or doesn’t try to downplay it.  It’s full out flaps, jumps, smiles, and happy shrieks- no matter where we are.

It’s the way that every time he gazes into your eyes before trying to tell you something your heart melts and you decide right then and there you WILL figure out what it is he is asking for.  Just because that eye contact means everything.

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It’s the craziness of indoor trampolines, tunnels, ball pits, crash pads, and swings to meet his sensory needs.

It’s the laughter and joy we all have when he starts play wrestling and chase and independently uses words like “Help!”, “Stuck!”, “Tickle me!”, “Tag!” all while giggling.

It’s the jumping on every piece of furniture we have until there are broken bed frames and broken springs in the couches.

It’s the pacing around the house, flicking his fingers, repeating the same phrase from Over the Hedge.

It’s him requesting “Pepperoni”, “Pizza”, “Hot dog”, and “Toast” every single day and the “Oh mans” that come when he finds out he isn’t getting that.

It’s having all these great words but still not able to answer things like “What did you do at school today?”, “What’s wrong?”, “What do you need?”, and “Who did that to you?”.

It’s the pictures all over the house: pictures on his bureau drawers so he knows where his clothes go, STOP signs on the doors and oven, picture schedules for using the potty, taking a shower, and brushing his teeth, and so on and so on.

It’s the smiles I see on my family member’s faces when Brian says their name for the first time.

It’s thousands of Brian selfies on my phone.

It’s the doors that have to be closed and the lights that need to be on or off depending on what step of his OCD routine he’s in.

It’s him brushing by you accidentally and immediately having to come back to tap the other side of your body to “even” out his body.

It’s catching him sliding down the banister with such a mischievous giggle and laugh you just marvel at how freakin’ adorable and typical he is.

It’s helping him brush his teeth, wash his face, and take a shower.

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It’s helping him with the anxiety of bowel movements and dealing with a mess daily that you never thought you’d be dealing with when your son was 10 years old.

It’s feeling happy and proud that you no longer have to help him get dressed.

It’s recognizing every little feat as a major milestone.

It’s the train tracks set up in the hallway, on his bureau, and down the stairs.

It’s an amazing memory that he puts to good use with preferential subjects like movies and animals.

It’s the shock and excitement you feel every time when you see him typing something new into YouTube: My Little Pony, Meet the Robinsons, Little Einsteins.

It’s the obsession with YouTube.

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It’s the preschool cartoons on repeat.

It’s telling people you will make it to their event “if Brian is having a good day”.

It’s changing your plans last minute because you know there is no way he’ll handle another outing.

It’s including him in as many errands as you can- sorting the recyclables at the dump, handling money with the cashier, loading the grocery bags into the car.  They’re all life skills you hope he masters someday.

It’s seeing the Kindergarten worksheets coming home in his backpack.

It’s the sadness you feel when you see other 10-year-olds at the movie theater, park, or library.

It’s balancing your time between children and always feeling guilty your other ones aren’t getting enough of your quality time.

It’s meetings, doctor appointments, conferences, therapy appointments.  It requires it’s own calendar.

It’s learning the lingo and abbreviations.

It’s becoming a strong voice even though you’ve always been shy and quiet.

It’s a lot of tears.  Crying after evaluations, crying after meetings, crying after particularly hard days, crying because you only want the best and you second-guess yourself every step of the way.

It’s thinking about legal guardianship and special needs trusts and group homes.

It’s holding on tight to his hand whenever you’re out in public, buying ID bracelets, and setting up wandering databases.

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It’s self-injurious behaviors.

It’s special diets and supplements.

It’s educating the public so he’s valued as he should be.

It gets a lot of stares in public.  It’s deciding whether to ignore or address the strangers and their lack of tact.

It’s pure, unfiltered love.  He loves without an agenda.

It’s sucking his thumb and twirling his Mama’s hair when he’s tired or sad or overwhelmed.

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It’s the hard work and perseverance.  By those who love him and most importantly, by him.

Autism is an ever-changing entity in our home.  There are ebbs and flows.  Beautiful, amazing, good days and horrible, terrible, no-good days.  The delays and deficiencies are starkly apparent but the progress and the milestones are celebrated to no end.

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This is our autism.


This post was inspired by Four Plus an Angel, who inspired everyone to write about what autism looks like (or doesn’t look like) in their homes.  Go to her site to see the links to everyone who has participated so far.

 

Heather Nelson

About Heather Nelson

Heather resides in Rockland where she is busy juggling life as a newlywed, a mom to two boys (one of which who has autism), a part time job in direct sales, and a full-time job as a pediatric occupational therapy assistant. She has a love for live music, karaoke, and cheering on the underdogs.