My Anthem

It's funny how a song can hold a memory, transporting you back to a moment in your life the instant you here the instruments and the lyrics start.  Just like when I hear Alabama's 'Mountain Music', I am immediately transported back to being a little girl bundled up in my Dad's pickup truck driving around Upstate NY plowing snowy driveways in the long cold winter. 

3 years ago, we entered the world of Autism.  On June 22, 2010 our son, Bradley, was diagnosed with Autism at 28 months old.  That was the first time we heard the words that our child has Autism, little did we know how many more times we were going to hear them.  After we left the final evaluation, we got in the car and talked for a while, then the radio was turned on and Tom Petty's 'I Won't Back Down' rocked through the speakers.  Every time I hear this song, I am transported back to that car ride where the emotions were raw...the fear, the grief, the confusion, how I felt physically ill...all is we knew was that our son had Autism and he needed help. 

Well I won't back down, no I won't back down
You could stand me up at the gates of hell
But I won't back down

We've stood at the gates of hell many days since then.  We've worked hard, we've had broken hearts and cried many tears.  We've picked up the pieces, started again and had so much success.  We will stand at those gates everyday and hold our children's hands and do anything to help them.  They will never stand alone.  We will always stand together.

Gonna stand my ground, won't be turned around
And I'll keep this world from draggin' me down
Gonna stand my ground and I won't back down

I will continue to spread Autism Awareness so the world is a more accepting place for them.  And, helping others because the fear I felt in that car ride was real, it was powerful and it permeated me.  Our lives may be different and hard but nobody is gonna drag us down. 

 

Hey baby, there ain't no easy way out
Hey I will stand my ground
And I won't back down

 

The biggest truth is that there is no easy way.  Autism is a challenge.  Every.  Single.  Day.  Since that day, this song has become my anthem. This song was a sign that came when I needed it the most with lyrics that could inspire me for years.  When we are having a bad day or I need a pick me up, I listen to this.  I'm regenerated because I can remember how I felt that day and how far we've come.   Because, we won't back down. 

A Brave Attempt

Some days I get brave or stupid or delusional.   A long time has gone by since I've braved a store with the kids alone.  Months.  They are currently 6,5,4 and 3 in July.  The 6,5, and almost 3 all diagnosed with ASD, the 4 year old going through evaluations now.

I hate having to do all the shopping when my husband is home because then I don't see him.  So, I decided to take them all to WalMart with a short list of stuff we needed.  One of which was laundry soap and since I had 3 pee soaked beds this morning, buying that was a necessity. 

I parked strategically and used the handicap pass that I have for Bradley, my 5 year old.  This has made going out much less of a safety risk.  I parked near the cart drop-off where I spotted the BIG cart, the one with 2 seats and the baby area in the front of the cart so I have the youngest 3 strapped in and the oldest on foot.  

We started out good.  Picked out some fruit and ice cream and started opening snacks.  To note- we left with an empty box of cereal, an empty bag of goldfish and an open box of Strawberry Teddy Grahams (new flavor, big deal).  I know that if I keep people eating than I can usually keep people happy, but I must move quickly.  Bradley is quickly doing his current verbal stim, I know he is trying to deal with being there.  We must also stop, pick up and fix misplaced items along the way because disorganization is unacceptable.   If my kids ran that store, it would look much different.

We were almost done, doing the usual, counting the aisles as we see the signs with their numbers. Until the unthinkable happened... the number 8 was missing.  What the hell, how you could you do that to me!?!?   I'm working hard re-directing, offering other food options knowing my time is about out.  We proceed to the front of the store and go by the seasonal stuff where all hell brakes loose.  Bradley spots the American Flags and starts screaming about wanting one.  No, we don't need a flag.  They are the huge ones to hang on your house.  I say no and keep going and he totally loses it in a level 10 meltdown.  I've been through this before and I'll do it again, so I just keep moving towards the front of the store as it gets worse and worse, he is hitting me so much I can barely drive this massive cart and is kicking and hitting the younger kids because they are strapped in unfortunately close to him. 

There are only a few lanes open, everyone is staring at us, he is going nuts, banging his head, thrashing in the cart and jumping as far as the seatbelt will allow which is shaking the whole cart and screaming American Flag over and over.  I'm sure the people in the back in the electronics section heard it. People got in line behind us and moved away.  Everyone was staring at him, all the way across the front end of the store and all the people in Customer Service, glaring at me with those eyes...'control your kid, he's a bad kid, you're a bad mom'  Autism parents, you know what I mean.  When I could actually hear something other than the screaming, I heard mumblings of others saying to each other, loud enough so they knew I could hear, that they couldn't hear each other talk.

We finished checking out, I didn't say anything to those people.  I have before but the other kids were too upset and I was so worried about Bradley hurting himself and the other kids.  The girls were crying because he kept hurting them. I have scratch marks from his nails all over my arms and neck.  He was kicking and hitting me and he bit me. 

He still hasn't stopped screaming American Flag when we leave.  I get him in the car, carefully because I know he'll run off into the busy parking lot if given an opportunity.  He is still upset about that flag when we get home, the meltdown continued for another hour.  I must admit, I appreciate his patriotism and loyalty to the American Flag but would prefer him to channel it another way.

I got them in the car, drove home and made dinner.  I just keep going but I'm sad.  I was so hopeful that I could take them out and have fun and it isn't possible.  He can not handle it.  I'm sure there are people that will read this and think that he is a brat and was just crying because of the flag.  That's fine, then they don't get it, just like all those people staring at us at the store. 

This isn't new, just another trip out but the worst public meltdown in a while.  I'm disappointed.  I was hoping it would be better.  Different.  Better.  Successful.  I'd waited months to try again.  It will be months before I make another attempt.  I lost a battle today but not the war.  I'll keep fighting the war because I know someday we'll have a successful trip. 

It's about the war, not the battles in the life of Autism.  As parents, we may lose daily battles but our commitment and love for our kids keeps us fighting.  I won't quit, I'll get brave and try again but not for a while.  I know he can't handle it, yet.  Yet. 

Important things I've learned as an Autism Mom

-People are ignorant. Most people really don't know much or anything about Autism.  Most of what they think they know is inaccurate. 

-I have learned who my true family and friends are.  There is a lot of fake support and people who have fallen out of my life.  I don't need them anyway and don't want fakeness around my family.

-Sense of humor is imperative. If I stop laughing then I'll drown. 

-Knowledge is key. One must know Autism to be able to help and advocate for their child.

-I can live without much sleep.  I barely sleep and am still alive and moving forward. 

-No one understands what it's like to be an Autism parent except another Autism parent.  More importantly, they are the only other people who know what it's like to live with Autism.  Living with Autism is different than knowing it.

-Small successes are priceless. The smallest things have made me jump up and down and cry tears of joy.  Our kiddos accomplish things at their own pace, we work long and hard, and then we celebrate!
 
-Clean house is optional.  The house will still stand if it is dirty.  We will all survive even if there is clutter or the house isn't cleaned constantly.  There are more important things to do. 

-True heartbreak sucks. Watching my children struggle is the most painful thing ever.

-I've learned to pick my battles with the kids and how things must be for them.  Safety and health first then who knows. 

-Stress relief and an occasional Ugly Cry are necessary. Finding an outlet of emotions, frustration, loneliness, anger, grief etc are necessary.  I'll burn out if I don't have something.

-It's important to not pass judgement on others. This happens to us on a regular basis.

-It's ok to hate Autism. I try to be positive all the time.  However, Autism has made life tough for my kids, given them challenges they shouldn't have and made it hard to enjoy things that should be easy for kids to.  A lot of days I hate Autism.  It doesn't mean I hate my kids or love them an less, just that things were easier for them and that they were able to do things they can't.

-Facebook has provided a way to talk to other Autism parents that has been more helpful than I could have ever imagined. I have been able to get real advice from people living it too and just knowing that there are others out there dealing with the same things has made a huge difference for me.

-I've learned to tune out a lot of noise.  There is always so much crying, screaming, verbal stims and electronic devices making noise at the same time.  The noise alone could drive someone nuts.  I swear they hear our house in space.

-NO ONE knows my child better than I do, not any Doctor or specialist or know-it-all family member. 

-Patience is at times the most challenging thing to have on the planet and that's ok. Some days I gotta dig deep within myself for patience.

-Loneliness is a fact of life.  Being a Special Needs Mom is a lonely path.  The only people that truly understand my life now are other Special Needs Moms.

-I am stronger and can handle more than I thought. 

The Cure Debate

I was listening to the news and they were discussing how a cure needs to be found for Autism.  I posted a question on my Facebook page and several opinions were posted one way or the other and I got to thinkin.

I feel that the opinion of the parent is often correlated with the level of functioning their loved one has or doesn't have.  Parents with non-verbal low functioning children are desperate to hear their kids voice and seem to often have a very different opinion than a parent whose child is verbal high-functioning and maybe even in a mainstream classroom.  Picturing how any of these parents feel and their opinions on a cure seem easy for me to understand, I can totally see both sides.

I have 3 kids diagnosed with Autism and our 4th being evaluated in June.  They are all different and have their own sensory issues, challenges and strengths.  So, obviously I have many feelings about Autism that are both positive and negative.

In discussing curing, people quickly say that if a parent loves their kiddo unconditionally than why would they want to change them. 

Let's be honest...we all love our kids unconditionally and we are all walking on a road that we didn't expect.

Yes, Autism has made me a better person.  It has made me see the world and life in a totally different way.  This is NOT about ME.  At all.  Being a mother and a parent has also done these things for me.  How I feel about Autism and the cure debate is NOT about ME.

I don't want to change my children for who they are.  But, if the Autism was taken away then they would be able to do more kid stuff without the issues they have. 

Ask me, their Mommy, if I would take hurdles away so they could be a happier kids and I would say YES...but I don't want to change THEM. 

My one son is lower functioning than the others.  There is a smart and funny kid in there that we don't see as much as we should because everything is so clouded over by Autism.  It's frustrating for him and us.  I even feel differently about his Autism than I do the Autism that my other kids have.

Would I take away sensory, anxiety and social issues or anything else to help them?
All day long the answer is YES.

Go ahead, hate me, unlike my page and think I'm a horrible person.  You won't be the first or the last.

I try to always be positive about Autism. It can be amazing.  But, I can't sugarcoat it. 

My family is Autism.  We are not sports games and dance lessons. 
We are Speech Therapy and OT.  We are doctor appointments and IEP meetings.

I love my kids.  Our family isn't the typical family next door and that's fine with me.  But, as a parents I want what is best for my kids and want them to be happy.  Autism prevents them from being happy a lot.

Do I think there will be a cure?  No, I don't.  And truthfully, if something was to come out, I wouldn't do it because I would be too scared to hurt, change or somehow lose them.  I do think someday there may be a way to prevent others from having Autism. 

Our kids are our kids.  We will keep doing all the therapy we can to help them.  We will keep advocating for them.  We will keep working to spread Autism Awareness. 

Most importantly, we will continue to love our Autism Family Circus.