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.)

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Autism Moms & Men in Combat have the Same Level Stress

autism moms in combat

If the creator of this icon pic sees this, please comment below for credit.  I found this on Pinterest and thought to share this.  It’s really sad and scary but a shocking reality that us autism moms face.

Below is the article on the study that the University of Wisconsin-Madison completed.  Sad to see that the stress in our lives compare to men in combat.  However, when a friend of family member just doesn’t “get it” please show them this.  I often find myself at loss for words when trying to get close friends and family to understand where I stand.  No one ever will unfortunately, except for those who stand in your shoes.  However, it would be helpful if people can take a peek into our struggles.  This explains the intensity we go through daily.  Stay strong mamas!!!

the article: http://www.examiner.com/…/autism-moms-and-combat-solders-ha…

Special Olympics: Eunice Kennedy Shriver

http://www.specialolympics.org/eunice_kennedy_shriver_biography.aspx

I’ve always been intrigued by the Kennedy family, America’s royal family blessed with fame yet cursed with tragedies.  Surrounded by her glorious siblings was  Rosemary Kennedy, who had an intellectual disability.  Her sister Eunice Kennedy Shriver was the inspiring founder of Special Olympics.  She had a huge heart and determination for the special needs population, which back in the 60s were shunned and mistreated.  They were either institutionalized or ignored and shamed.  Eunice started off inviting special needs kids to her uxurious backyard for camp.  Many years later Special Olympics is an international event.  I’m so inspired to encourage Andrew to shine in swimming or track and one day be a competitor in this event.

Even if Today, I Know that Tomorrow…

Even if Today, I Know that Tomorrow…

Even if today, it seems everyone and everything has failed us

Turned their backs on us
My surroundings are grey and cold

Everything is heavy

My body is numb

From over drive mode

My Heart is gutted

After that heavenly break was taken from underneath me

Mind is stuck in that zone

After negativity robbed it

And filled it with dread

With fear of the future

Suspicion of everyone’s intentions

The block I built towards trust

Shattered to pieces that

Will take more work, more time

To reconcile

I know that tomorrow,

Maybe the day after tomorrow

I’ll regain that strength, that power

To look future in the eyes

With conviction that you’ll live independently

Look fear at its peak

And weaken it with my

Perseverance

My love for you my son

That one element in my bone

That even if,

After being broken down

Will replenish itself

To reunite me with my unbreakable passion

To pull my will power from the root

And trust both will lead me

To unbelievable heights

To provide you with promise, tangible possibilities

And a fulfilling future

Even if today it seems that autism beat us,

I know that tomorrow life will uplift us again

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.