Autism Parenting. This Struggle is Real.

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Dear Anyone who’s not an autism parent but trying to understand autism parents,

You know those moments in life when you’re hurt that a mean kid was not so nice to your child?  Or how horribly difficult the “terrible twos” were?  How much you struggled to keep your shit together as you tried to control your possessed kid in public.  How cruel people in public can be for giving you the bad parent/bad child glare?  What about having to de-code wth your life insurance or retirement plans mean?  Or worse, a store, party venue, restaurant or insurance company denying coverage, denying return of a bad item, dismissing bad customer service.  Having to escalate it to management?  Remember that bad year when your child that horrible terrible no good, very bad teacher?!  Phew thank goodness that was just one school year.  How sad you were when your youngest was delayed compared to all their friends when it came to sports?  But now ecstatic you were when he finally got that ribbon from swimming to the next level, even though it took him longer than every other 5 year old?

Autism families go through similar pains everyday, every hour, every week throughout their lives.  Not occasionally but everyday.  The struggle is so very real.  It’s exhausting, depressing, disappointing.

 

I’m not being sarcastic nor belittling the issues, hardships, obstacles we all face as parents and human beings.  Special needs kids or not.  I’m simply trying to help non autism parents understand the intensity of the other side.

(Pic above I took the other day when we finally got some rain and thunder in Northern California.  I love the rain, the comfort it brings, the beauty, the calmness the sound of rain drops.  The road ahead is a long, dark, bright with many bumps and detours for many autism families.)

I’m an Autism Mom. Hear me ROAR!!

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February 10, 2015 Image
I’m an Autism Mom. Hear me ROAR!!

I’m gonna be down right honest. I am sad and my heart feels so heavy since last night after reading this article on autistic kids’ futures. What struck me most is reading other parents’ comments on how worried they are about their child’s future after they’re gone. This same exact worry along with fear of middle and high school days terrify me to no end! Today was my son’s last speech therapy with a wonderful therapist he’s had for 6 years. I’m feeling overwhelmed trying to find group social skills group and looking for another regulating activity for him as well. Plus I have work, party planning and ambitious valentine projects (which I enjoy because it’s a hobby) to complete in the next day or two. My husband lost his job and will work again in two weeks. My father in law’s cancer is slowly crawling back and fearful of the responsibility of aging sick parents. I’m on overload again after a long break and it sucks!!!!!!!!!

Glimpse of A DAY

What do I really really mean when I tell you that some days are just unbearably horribly bad?  BTW, most days I would say 5 out of 7 are pretty bad.  I don’t mean to be negative but that’s the darn raw truth, at least with this level of autism our family deals with.  Of course the intensity varies per child, per family, etc.  If you asked my husband how many days per week would be considered bad to him, he’d probably say 3.  Different parent, different person, or in other cases like ours different amounts of hours spent with our kids.  I work part time and spend 2.5 days more with the kids than my husband.  Yes some days I would rather be at work but I would never trade in my days with spent with them.  You can never get back the baby, toddler days EVER and I feel blessed to have had the chance to be part time career woman and half the week with my boys.

Andrew is on meds to control anxiety and ADHD.  Nevertheless, the tantrums, whining, meltdowns, high anxiety, paranoia, OCD are still very much present.

I know for a fact there are people in our lives who THINK they know my son and me.  They JUDGE beyond belief to no end thinking just because they’ve spent 1 hour to half a day plus you know, my never ending stories that they TOTALLY GET IT and TOTALLY KNOW OUR LIFE.  That I am such a horrible mother for having a short fuse and Andrew is just a bad kid who gets what he wants OR ELSE.  For people looking in, the criticisms, judgements, gossip is probably the easiest way to deal or handle having a family like ours in their lives.  I get it, just as well as you get me, right?  So we’re even.  The truth is no one unless they’ve literally lived our life will ever comprehend one inch of the challenges and obstacles we face daily.  Lucky for me I do have family and friends who are really really GOOD People, who I know would never or think the worst of us.

If I can literally illustrate what our days look like I would but too bad for us I’m not much of an artist like my kids and husband.  So here’s the best I can do for now…

Example of one weekend day.  Andrew wakes up easily frustrated over not being able to find a toy car.  Starts off as cries, followed by ransacking through baskets of toys, followed by tantrums, blames everyone in the house for stealing or donating his toy car.  Quiet for 2 minutes.  Between my two boys I say STOP IT at least 20 times a day.  No exaggerations.  On a short outing like Target run or a day at an amusement park, Andrew will do ALL the following: script an entire video at least 10x. The other thing I say at least 10x a day is PLEASE LOWER YOUR VOICE. IT’S TOO LOUD.  At times, he’ll walk up to someone and be in their face and script something really out of this world.  He is always doing something that unfortunately catches negative attention in public.  He’ll touch things.  He’ll pace back and forth.  He loves to explore.  Wherever he goes, no matter how quiet or loud he talks loudly.  Andrew is obsessed with media so he will fight to to no end over having it at least 5x a day, everyday no fail.  He’s a master of persistency mixed with tantruming and whining.  His sensory issues cause him to constanly snack and eat throughout the day.  He craves carbs but is good about eating fruit as well.  Andrew will ask or make trips to the pantry and fridge at least 4-5x a day between lunch and dinner.  It’s work to remind him to eat something else or stop eating so much because he resists.