ASWS Article

A dear friend (Annie you are a blessing to me!) of mine referred me to Autism Support of West Shore because they give out scholarship money to children in our community on the Autism Spectrum.  Last year with the scholarship money we were able to buy Brecken a brand new play-set for outside and a new Ipad.  To fulfill my volunteer hours for being a recipient myself, Courtney and Jill volunteered at the ASWS golf outing (while Josh and Marie golfed). It was a blast! PS, I love you all!

This year, I chose to write an article.

 Our son Brecken is an 8 year old high functioning Autistic child.  Brecken was born in February of 2008 and welcomed into our family by myself, my husband and his not yet one year old brother.  He was, and continues to be the cutest baby boy I've ever laid eyes on.  He has gorgeous greenish brown eyes and a smile that can turn anyone into mush.  He is unforgettable.  He is humble.  He is kind.  He is Autistic.
    Brecken was just shy of three years old when he was diagnosed with Autism.  He was developing normally in most areas but lacked language and social skills.  He would rarely make eye contact and he had the worst meltdowns I had ever seen.  Of course, why wouldn't he?  He was 2 and couldn't verbalize his wants and needs.  And unbeknownst to me he was having sensory processing issues to the extreme. I consider our family very fortunate that Brecken was diagnosed at such a young age.  It brought us knowledge and it brought us acceptance. Knowledge and acceptance are key when it comes to understanding Autism.   
    Within the last five years, our son has gone from not speaking to demanding.  From having temper tantrums to self soothing.  From sensory overload to coping.  It has been the most joyous and trying times of our lives.  He attends school full time in a general education classroom.  He has a 1:1 parapro and with her help; he is reading, writing, telling stories and participating with his class.
    When he was first diagnosed I, like many parents, assumed the worst.  I assumed that everything would remain the same and that the label of Autism meant that he was incapable of moving forward and meeting goals like a "normal functioning child".  I was happy there was an explanation for his underdeveloped skills, but terrified of what was to come.
    Yet, here we are 5 years later and this past weekend he did something incredible.  Something that I never thought could happen.  I never let the scenario even enter my mind.  Because, it just may never happen.
    My mother picked Brecken up from our home and he was going to spend the night with her.  She is his favorite.  By far, no one measures up to the pedastal that Brecken puts his "Grandma Gertie" on.  No one.  He was there about 30 minutes when Grandma called me.  She was upset "I don't know what to do, he's never done this - he's asking to go home".  Brecken kept saying "I want to go home, get in the car, momma".  This is extremely unusual.  He was also saying what my mom thought was "police Luigi".  My mom decided to bring Brecken home, as he was adamant about coming home.  She was so excited that he was staying the night that she bought him 4 Mario and Luigi's!  Upon Brecken's return home, he went straight to his room and grabbed his FREEZE power Luigi.  He didn't even take his coat or flip flops off.  He RAN to his room.  Once he had the "match" to the FREEZE Mario that grandma had bought him, he was ready to leave again.  Saying "Grandma's house, get in gramma's car, bye Mom".
    Brecken orchestrated the entire event.  He knew that he needed the freeze power Luigi.  His mind could not handle the thought of having only the freeze power Mario, when he had the macth at home.  He was able to communicate to us what he needed.  That he needed to go home and get his Luigi to be able to function at Grandma's house.  I was in tears, I was overjoyed. I am so proud!
    NEVER, ever let the label of Autistic cloud your view.  It is just that - a label.  Nothing more. Autism does not define our children, they define themselves.
  


  

We'll eat where we want

"Supposedly the child was autistic which I didn't  know nor does it matter"

Hi, my name is Karrie. I am the mother of a child with Autism and IT DOES matter.  It always matters.  

Let's take ourselves on a stroll back to grade school.  Does anyone remember how many senses we as human beings have?  Wait for it ... YES!  We have 5.  

*Sight

*Touch

*Taste

*Smell 

*Hearing

I'm going to go out on a leap here and guess that most people can figure out pretty quickly how many of these senses are "abnormal" in a person with Autism.  YES!  All of them!!  All 5 senses affect someone with Autism differently than they do you or I.  Smells can be null or heightened to the point of avoidance.  Same for taste, touch, sight and sounds. Some Autistic individuals are loud.  Some are quiet.  Some love touch and some can not be touched.  Some speak.  Some do not.  Ever.  Take a minute.  Some babies never say mommy.  Some children never say I love you.  Some adults have never been able to vocally express themselves.  Ever.

Fast forward back to the restaurant.  A child - A CHILD was "shrieking" (perfect word choice by the way, let's make this a little more insulting).  This child "supposedly" had Autism.  Not that I care.  Unlike some people, I don't feel like the world should revolve around myself and how peacefully I am enjoying my breakfast.  HOWEVER, let's just say this child DID in fact have Autism.  I can bet you with my life that he/she was experiencing some sensory overload.  Sensory - the 5 senses.  I can only imagine the mother trying to figure out how to calm her child ... how to help relieve some of the pain that this overload was causing.  This child could have been having a meltdown - sure! Did the restaurant have dishes banging, people making small talk, white plate vs black, a 4 prong fork instead of 3 prong fork, a different hostess than last time, did they catch wind of someones perfume that was too strong?  If the child can't tell you ... you have no idea. 

For one mother to ever judge another mother is terrible.  For them to judge one that has a special needs child and is doing their best from day to day to make this world accepting of their child ... well wow, that is a whole other level.  

I feel sorry for you.  I feel so very sorry for you.  

I'm also sorry that ONE of your senses was disrupted at breakfast.  Sure, it could have been annoying to you.  But do you know what?  That child that you are continuously posting about trying to receive some form of validation for being annoyed with was having a much harder time than you.  To be honest, your awkward glares could have been the problem.  You could have had perfume on that he/she couldn't handle.  Your well behaved children could have dropped a utensil on the floor and the sound could have felt like it punctured their ear drum.  Maybe you had on clothes that weren't color coded perfectly.  Maybe you didn't smile at them. The list goes on ...

So before you judge someone for being the problem and saying that "it doesn't matter" if the child has Autism - think again.  YOU could have very well been the problem.  Do some research.  Lose the ignorance. Or stay home and stop eating out.  There are a lot of us that won't be leaving the restaurants for you.  1 in 68.

April is Autism Awareness Month.  It does matter.  It always matters.   

Defining

~ The ability to understand and share the feelings of another ~

This is me.  To a fault. I'm the definition of the word.

Worrying. Stressing.  Overthinking.  Over-analyzing. Genuine Concern.

I've been told many times that I am an extremely sensitive person.  That I need to let things go.  That I need to relax.  That sometimes ... things just are they way they are.  

I still don't believe it and I never will.  Sometimes ... I think the message just hasn't sunk in for certain people personally. 

The way that it hadn't sunk in for me.  That is, until our son was diagnosed with Autism and was no longer a "normal functioning child".

From that moment, my heart softened.  My entire being became protective of my little boy.  More-so than it had been already.  My emotions grew stronger and I became more sensitive.  I was becoming the exact woman that God created me to be.  The mother to this very special boy and his 3 siblings.  I am exactly who Brecken needs as a mother.  I was chosen for him and I am thankful for that in each moment of my life. 

Before I had children I like to think that I was a pretty good person.  Great person? No.  Perfect? By no means.  I was courteous and pleasant.  I was kind and I thought I was pretty genuine.  I can remember when I was in the 11th grade and we had our annual Christmas Dance.  It was a pretty decent time (Andy and I fought because he hated dances and I thought he was lame). So when I say decent, I mean an 11th grade girls nightmare.  The night was winding down and somehow the next thing I know I was on the dance floor, slow dancing with Teddy.  Teddy was in the special education class in our high school.  He had a brain aneurysm and was not a typical developing teen.  It is one of my favorite memories of high school.  I hold onto hope that Teddy remembers it as well.

All of this being said, I was still an ignorant and immature person.  I would use the word retarded to talk about my phone ... my hair ... the cashier that couldn't count my change back correctly ... it was a word that was typical in my vocabulary. 

It wasn't until I had a child of my own that is

 ~  less advanced in mental, physical, or social development than is usual for one's age ~ 

that I realized how insensitive and ignorant I had been in the past.  My child is by definition a term that I had used to call and refer to everything as stupid.  And I will tell you now, MY CHILD is far from being stupid.  I could go on for days about the traits he possesses and I can assure you that not one of them would be stupid.

Many times it takes a personal experience to ground you.  To make you think twice.  To help you become a better version of yourself.  I am eternally grateful that I am a changed person.  I don't judge people.  I let people be themselves.  I stand up for what I feel strongly about. I am more open.  More honest.  More loving.  More accepting.  More empathetic than I have ever been.  

So when you use the word retarded.  Think twice.  It's verbal garbage.  It's offensive.  It's by definition ... my son.    

I mean, it's only been three years ..

Has it really been three years since I have blogged about my not so little boy?! It can't be true can it?  I can't even believe it's been THREE years!!!!

Oh yes ... yes I can.  Life takes over and before you know it three years have flown by and you have not sat in front of a computer screen for more than five whole minutes.  I take that back - unless it was to search a YouTube video for your son, or Google a Minecraft picture for your daughter.  We all as parents know - that doesn't count.

In Three years our boy has gone from barely speaking to demanding and I for one couldn't be prouder.  Brecken is reading, writing, beginning to tell stories (with much help, but he's doing it!!!!!), and verbalizing more.  Every. Single. Day.

Two minutes into this and a small child is beckoning me.  See ... 5 minutes.  I can't have 5 minutes.

Whew!  Just an irritated eye out of nowhere.  Luckily, a wet washcloth solves all of a 4 year old's problems.

Back to Brecken.  In the last three years he has overcome so many challenges and has far exceeded any expectations I could have had ... if I had any.  See, unlike a lot of other people I like to encourage, but not expect.  Expectations set people up to feel disappointed or discouraged and I refuse to EVER feel that way about my son and his goals. Ever.  If he's rude - sure.  If he talks back - maybe (but was he right?!).  But to be disappointed that through all of his sensory overloaded self he can't tell me a story or pick up a pen?  NEVER.

Brecken is now 8 years old.  EIGHT YEARS OLD!  The first two of those years were full of baby giggles, cuddles and rote first words.  Along with those amazing and irreplaceable feelings came frustration, misunderstanding, guilt and the dreaded word - disappointment.  After the diagnosis when that little boy was just two years old, I vowed to Brecken and myself that I wouldn't ever go back to that place of disappointment.  I learned more than my fair share about Autism from Google, books, forums ... blah blah and more blah.  However, I learned the most form the source of the superpower himself - Brecken Andrew.  That boy is the best teacher around.  Screw a fancy certificate, that kid has his Masters Degree in himself.  I mean, don't we all?

Things that have not changed for Brecken:

*Love of Toy Story

*Love of Mario and Luigi

*Love of all things cheesy

*Love of McDonalds!  Theesa way!! (insert pointing) All roads lead to McDonalds

*He will find a pop-can or a fountain pop cup anywhere! Don't even try to hide it

*Love for any form of figurines

*He's non-judgemental

*He works damn hard at life  

*He accepts everyone

*He loves everyone 

*He is always happy doing his own thing

*He never - EVER - fights with his siblings

*He is the absolute light of anyone's life that knows him

*He is still and will always be my baby boy

*Grandma Gertie will always be his favorite and I'm OK with that :)

Brecken's gains have not come without hard work.  I am not just saying or blogging this ... but I could not do what that boy does.  An 8 year old boy works harder at life than I will ever have to ... on one hand I am so extremely proud of him.  On the other, my eyes fill with tears as I imagine the day to day struggles of my child.  

*Brecken get up, no Ipad, get dressed, pick up your toys, put the Ipad down, clean up your blankets, BRECKEN! NO IPAD, time for breakfast, its cold you need socks, OMG BRECKEN PUT THE IPAD AWAY, let's do your hair, brush your teeth, get your backpack, Mario and Luigi need to go back in your room they are not going to school, I SWEAR BRECKEN - PUT THE IPAD DOWN!*

This is a typical morning conversation.  By typical, I mean every single day.  I assume Brecken hears about 1/4 of this conversation.  And by 1/4 I mean he hears the word Ipad. 

So for him to even be able to do all of these "normal" morning steps with 765 prompts ... I feel like he is a Rockstar.  My Rockstar.

This is just a tiny three year update on our little big man.  More to come ... when I have another 5 minutes to sit in front of a computer.  Be on the lookout in the year 2019. 

   

 


  

*Loved this Blog Post and had to remember it*

**Love this**

http://www.autisable.com/759227676/what-autism-has-taught-me/Monday, 20 February 2012

What Autism Has Taught Me

Autism is strange in its ability to teach. Sometimes it seems like autism came into my life (through my wonderful daughter) just to make me grow in the areas I most needed to. To name a few things I suffer from: envy, self-pity, a short-temper, mood swings, impatience and fatigue. They are all put to the test on a daily basis. I could (and probably will) write a blog about each one. But today I want to write about one way autism is forcing me to change- caring about what other people think.

I have always been sensitive to how others judge me. Still, this hasn't necessarily forced me to conform. In fact, in many ways it caused me to rebel. I felt angry in my teen years about how misunderstood and judged I felt. As a response I did whatever I could to not fall by the wayside of the status qou (be it purple hair and black eyeliner or speaking out in class). But that doesn't mean it didn't hurt me that I felt so misunderstood by my peers. Since high school I have grown and realized that fighting back doesn't really help my cause and that the hurt I feel from others' judgement doesn't sting any less. I have to admit, it has helped me to move from Orange County to San Francisco, where people tend to be more accepting.

That said, I have always been somewhat of an outcast. Having people bully me in school should have prepared me to be thicker skinned in my adult life. Instead, I think it made me more sensitive. As I got older, I adapted and learned how to be accepted by my peers in order to avoid such rejection again.

But now with autism, I cannot rebel. I cannot conform. I have to find a way to just say F them.

This isn't easy for me. It doesn't help that I am 22 and my husband is 21. As it is, people are staring, thinking "How old are they?!" I always figured that my parenting abilities would speak for themselves and that my daughter would clearly be well-behaved enough to have people think twice about judging us.

WRONG. Life wasn't going to let me get out of this one very easily. It decided I needed to actually deal with this. It gave me an autistic daughter.

So here's where my story starts: We were at the zoo this weekend and D (I'll call my daughter that) wasn't having it. We should have known better than to take her during her nap time, but she usually does fine skipping her nap if we take her somewhere she likes. I assumed (wrongly) that because she loves animals so much, the zoo would be a place she liked. Needless to say, the entire day was a disaster. From the get go she was hair-pulling at every turn. I waited with her at the entrance while my husband went to use the bathroom. She wanted to climb on top of the tables and I wouldn't let her. BAM, a hair-pulling tantrum started. We just recently started dealing with this by completely ignoring it. That means no blocking from us unless she is right next to us and we can pretend the blocking is an accident. We've learned by now it is strongly reinforced by any form of attention. The behavior nearly disappeared completely until one day her smart little brain realized if she did it from across the room I would come over and block her. Now she does it to get me to come to her and try to meet her needs. Meaning, I must act like I don't even see it if I have any hope of it diminishing. I should have put it together that trying this new method in a new situation during nap time would be a catastrophe, but no way, I missed the jump on that one.

So here we had little D ripping her hair out a couple feet away from me (22 year old too-young-to-properly-raise-a-kid mommy according to bystanders) and me pretending to check my cell phone. One man point-blank stared me down with disgust. It killed me. I wanted to break down and just bawl at that moment. I wanted to scream at him, "Do you have any idea how hard I work?! Do you have any idea how difficult it is to do this?! This is the last thing I want to have happening! I want to stop her from doing what she is doing right now, but I can't, it will only make things worse in the long run!" I wanted to explain myself. Instead I calmly said, "she has autism, please do not stare."

The worst thing is, even telling him that was an explanation he didn't deserve. I don't think D wants me telling every gawker that decides to stop and rubberneck her personal struggles. It isn't any of his business, and I should know well enough that it doesn't matter what he thinks. I can't help this urge to want so desperately to be understood. To have people know my story and realize I am a good mommy. That I give everything I've got to my little girl and more.

Life for some reason is teaching me that I don't need the validation of strangers, as desperately as I may want it. That I know the truth and that is enough. That those people who are staring and judging and hating, just aren't playing with all the facts. That I should just let it go.

I don't know how long it will take for these moments to stop hurting me. I do know that I will have plenty of opportunities to learn to let it roll off my back. I hope it happens sooner rather than later. It is so hard to not feel so incredibly pained by these people and their lack of understanding. I can only looked towards the future and pray for thicker skin to show up soon.

Luckily I have a husband who is the yin to my yang. He doesn't struggle in the areas I struggle and vice versa. It helps a lot to have him there saying "so what?!" and laughing it off. I know I help him too in my own ways, but I admire him especially in this regard and can only hope to achieve this ability.

Until then, if there are people out there who judge parents like me, please do your part and think for one second, "maybe I don't have the whole picture here" instead of passing such hateful energy onto to our already overloaded pile of stress. I'll be working on learning to not care what you think anyway.

I'll end with this quote: "Is it so bad, then, to be misunderstood? Pythagoras was misunderstood, and Socrates, and Jesus, and Luther, and Copernicus, and Galileo, and Newton, and every pure and wise spirit that ever took flesh. To be great is to be misunderstood.” -Ralph Waldo Emerson

Re-Direct, Re-Direct, Re-Direct ... Compromise ... SUCCESS!!

Andy and I couldn't be more proud that our 3 year-old knows how to spell his own name!!  And we didn't give him an easy one to memorize either :) SO PROUD of you Brecken Andrew!!

Sometimes school is so exhausting!

"Now I lay me down to sleep, I pray the Lord my soul to keep. If I die before I wake, I pray the Lord my soul to take"