How appropriate..Autism Awareness month, the real deal.....

So let's make some people AWARE.  Really what needs to happen is two things in my opinion.  1.  People in general just need to be more compassionate and empathetic to special needs people/families and 2.  We need ANSWERS.  The statistics are alarming.....to those of us who care and actually know about it.  Hello....1 in 50 now!

Unfortunately for most people, Autism is a far off disorder for them.  They may know a family with a kid that has Autism, or they might have seen Rain Man or something like that.  That not only gives people a false impression about what it's really like to live with an individual with Autism, but creates those stupid stereotypes that all people on the Autism spectrum have these "super brain powers" that can help others win money or something.  Let me tell you, if SE and C were giving up the lotto numbers, we'd have won that 550 million Mega Millions jackpot a couple months back. :)


So let me tell you what it's really like and why (before people jump to judgement that my children are misbehaved and spoiled) my kiddos act the way they do.

Every kid on the spectrum is different, even my two are complete opposites almost.  SE is a people pleaser and looks for approval upon completion of a task and C couldn't care less if you thought he did well or not.  C is much more advanced verbally than SE.  SE follows directions quite well.  C....doesn't.  Both have, in essence, hit their terrible twos a little late and everything that has been coming out of their mouths is....NO! 

SE also is very opinionated and likes things to go his way (like most 4 year olds), the only problem is his coping mechanisms for not getting his way are: shrieking at the top of his lungs, laying down on the ground, crying and requesting hugs, and not completing the task.  The screaming is the WORST.  It is blood curdling.  I think he could wake the dead with those screams.  In addition, every time he pulls out one of these banshee like yells, C screams and covers his ears because it's too much for him to handle.  Lovely.

Friday was just a crap day ALL DAY LONG. 

It started out with SE screaming his way through therapy.  I know he doesn't want to work at home, I feel like I'm torturing him everyday.  I've come to the conclusion he's just not a home based therapy kid.  While it's convenient for me, it's not working for him.  So, I have an appointment next week to check out a new center that's about 20 min away from our house.  Only caveat....they don't accept our insurance.  The good news is that they are going to start the process to be able to bill our insurance.  Bad news is that we have Tricare, which involves the government, which means it will take 2x as long as it should.  BLAH!

After the whole therapy ordeal, SE went to school and I took C with me to the bank and Lowe's.  He helped me pick out a bird feeder and I got the necessary parts to fix our leaky kitchen faucet (since I can't seem to be able to remove the existing one to replace it...a whole other story).  Then we went to Sam's where I needed to buy diapers for the boys....and they didn't have the size I needed. Sidenote:  yes, SE still wears diapers.  He's actually afraid to even go into public restrooms and forcing him to do so will cause a meltdown of epic proportions.  So the potty training process will go slowly for him, but I'm convinced he won't walk across the stage of his high school graduation wearing one. :)

Decided to get a haircut for C...nightmare.  We went into one salon here in town (the one by the grocery store, for those that live where I live) and SE screamed.  Even when I tried to bribe him with candy.  Everyone stared at us, but no one said ANYTHING.  A girl walked in a couple minutes after us and they immediately helped her.  Needless to say...I was pissed.  So I took both boys out, buckled them back into their carseats and went 1000ft over to Cost Cutters.  So much for supporting the small local businesses in my town.  And yes, I did write a horrible review on Yelp for the first place. 
 
SE screamed again as we went in, but the candy did help.  C, on the other hand was like...."uh, what's up with this?!?!"  I gave him a sucker, but that wasn't helping.  I sat him on my lap and he screamed, squirmed, cried and wiggled though the whole thing.  The stylist was very understanding though, which was good, but didn't make me feel any better.  SE kept asking me for hugs because he was hearing C cry so much.  Couldn't help him out there, which made him upset.  Finally finished the haircut and the total was $11.50 with tax.  I tipped her $10 because I felt so bad.

Then we went to the grocery store because I needed some last minute stuff for dinner.  Told SE about 5 times before we parked, but as soon as we did, he started kicking the seat.  UGH.  So while holding C, I dragged SE to the door, because you can't leave your kids in the car anymore like our parents used to do to us.  I promised SE a donut as a bribe to keep him moving and happy.  What does he do right after we walk in??  Lays down and screams.  Awesome.  So after 5 min or so of working with him to get up we make it to the bakery.  He's all hunky dory because he got half a donut.  C is also a happy camper, eating his half and riding in the cart.  So...I'm searching for natural cheetos, SE's fav.  No, he will not eat regular cheetos, crunchy or puffy, he will also not eat baked cheetos.  As I'm looking, SE is getting anxious.  I tell him we will be done soon and that sets him into a meltdown, right in the middle of the aisle.  Sigh.  People stare.  Usually I can brush off the dirty looks, but today....I'd just had enough.  I try to hold back the tears.  We get to the checkout and SE is still acting cranky and there is an aisle open.  But the girl working there won't meet my gaze.  So I go into the next lane.  After I finish loading my groceries onto the belt of the next lane, the girl who wouldn't look at me asks the person that came up behind me if he was ready to check out.  WHAT?!?!?!?!  Hello....... last straw.  The guy that ignoring checker (that's her new name) called over decides he's forgotten something, so he turns back into the store.  I look at the girl and say, "Oh, you're open now"?  She says, "Oh yeah, I'm open, I can help you right here".  So what do you think I say?

"Oh, you can help me now?  Funny how you were unavailable when I was loading all these freaking groceries onto the belt over here.  But NOW you can help.......whatever".

Now I know that was wrong.  But in my defense, I was frazzled.  I had reached my breaking point.  I checked out, took the boys to the car and here's what happened:

 

Yeah, I know my hair looks crazy and everything but.....that was me in the moment.  A honest moment.  Something most people never see from me or other special needs parents because we're so good at hiding it.

 

 

Now, these days don't happen all the time.  Maybe once every 4 months or so.  But they DO happen. 

 

And here's what I want.  I don't want sympathy.  I'm not throwing a pity party.  I want people to have EMPATHY.

 

 --the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner

 

                                                                                                            --courtesy of merriam-webster

 

I want people to NOT JUDGE parents when their kids are having some issues in public.  And that goes for special needs AND typical kids.  Yes, we have to discipline our children, but they're still just children.

 

And most of all......I want the medical world to accept that Autism is an EPIDEMIC and we need to find out why now 1 out of 50 children in America are diagnosed with it.  I want the government, big Ag and big Pharma to put our health first and money second.  Crazy, I know.  Like that will ever happen, but it's a hope! 

 

So that's all I have for right now.  Saturday and today were AWESOME days for both boys.  We got some park time in and had a lot of fun! 

 

 

 

 

 

I absolutely adore my children.  They have strengthened my faith, increased my patience and most of all expanded my heart.  They are my world.  I thank God everyday for my family.

 

 

 

 

love,

 

Supermama rosie