IN MY EXPERIENCE having a child with autism is…

IN MY EXPERIENCE having a child with autism is frustrating.  Why doesn’t she understand me?  Why won’t he listen?  Just tie your own shoes already!  Therapy.  Testing.  IEPs.  School therapy.  School testing.  More meetings.  She threw a fit at lunch today and we don’t know why.  Was the cheese melty or the vegetables cooked?  For a long time she refused to eat anything brown.  He won’t eat a sandwich with condiments on it or anything with mayo.

IN MY EXPERIENCE having a child with autism is stressful.  She forgets she needs to be quiet right now.  He picks on her to get a reaction.  She reacts.  Violently.  He thinks he’s smarter than everyone else.  She can say “4 times 8 is 32” twenty times in a row and forget it on the 21st.  The restaurant made the food wrong and meltdown is imminent if they don’t eat soon!  I just want to scream!

IN MY EXPERIENCE having a child with autism is sad.  I didn’t get the experiences I expected to have with my little girl.  There are things that she just wasn’t/isn’t/may never be able to do.  Other experiences have filled in for what I thought I wanted.

IN MY EXPERIENCE having a child with autism is full of questions ranging from guilt-induced to unanswerable.  What did I do wrong?  Nothing.  That’s counter-productive, harmful thinking brought about by grief and guilt.  When will she (fill in the blank)?  In her own time… or not.  What will happen when she’s 18?  Will she be able to work?  Will she be able to live independently or will she always need a caretaker?  Will she ever be able to have a family of her own?  Too many questions!

IN MY EXPERIENCE having a child with autism is a major learning experience!  I have learned patience.  Now I can wait for her to finish her own sentences and tie her own shoes.  I can listen to them fight and not intervene until it’s obvious neither of them can change the course.  I can scrape a perfectly delicious meal into the garbage and make her a bowl of ramen noodles (OK, not often but as long as she’s TRIED it!).  I can sit through a public melt-down and smile and wave at anyone who stares.  I can explain to anyone who asks what set her off (usually, I know the kid pretty well now).  I can sit for hours at a time in waiting rooms with other parents and a magazine to keep me company.

IN MY EXPERIENCE having a child with autism is joyous!  It took her a year to potty train.  Her first steps were at 17 months.  She was pre-verbal until she was five.  Learned to ride her bike at 8.  Brought home a party invitation from a classmate… and actually wanted to go!  She used a full sentence to state a request instead of a single word or, worse yet, a gesture.  Those early years where other parents have a milestone seemingly every day are filled with questions and why-nots but we get many of the same milestones just spread out over a longer time frame.  Making them much more precious and joyous when they do occur.  We also count every little accomplishment as a milestone where as many parents may overlook them.

IN MY EXPERIENCE having a child with autism is full of every kind of loving imaginable.  Giggles, hugs, cuddles, cats, horses, smiles, running across a store with a big smile to a certain toy then running back screaming “MOOOMMMMMMM!” as though she hasn’t seen me in a year, storytime, throw a blanket on her head, fits, meltdowns, emotional upheaval, major mood swings, roller coaster, my worst day is your Tuesday, your worst day is my Thursday.

I want her to grow and to learn.  To have better control over certain behaviors that make her a bully target.  But never to change.  She is sweet, loving, caring.  Strange animals come up to her so she’ll pet them.  Horses, cats, even chickens.  She doesn’t like dogs much, though.  They’re too loud and bouncy.

I know other families have a much harder path than I do and I know there are parents who would change their disabled kids in a heartbeat if they could.  If I were in a harder situation, I may want to, too.  But that is not my path.  My path is a 16 year old with Asperger’s Syndrom and a 9 year old with PDD-NOS/autism.  And although some days seem as though bedtime will never come, my life is an adventure.  An adventure that my kids make well worth any frustration or stress or headaches.  And I love them for the perfectly imperfect, amazingly amazing individuals they are!