*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"

Brecken "Michaels" :)

Brecken LOVES to work out with me ... and even asks to watch the 30 Day Shred or Biggest Loser Cardio Max when I'm not doing them :) He's picked up a couple of things. Look out personal trainers, Brecken is going to steal your job! He's way cuter anyway ;)

ABC ... 123

Brecken was showing me his writing skills on the magnet board a few days ago :) He LOVES his letters and numbers!! 

*So proud of you Brecken!!*

"Fixing" Autism

I don't want to forget this one :)

Brecken can let me know what he wants just fine ...

Yesterday I was blogging ... on this blog ... and Brecken decided that he wanted a treat.  Next thing I know, this is on my lap.  Literally as you can see on my lap.

 

Cake Please?  Cake Please?

As charming as this face is, I had to tell him no :( and that he needed to wait until after dinner.  Poor kid, I know ... :)

Thanking God for "Gramma Scheffler"

I know a wonderful woman.  A kind, compassionate, caring, genuine, giving, tell it like it is kind of lady. 

That lady is Gramma Scheffler.

Thank you God for Gramma.  And thank you Gramma for being so wonderful to us and our children.  You fascinate me with how thoughtful, pure, and selfless you are.  Thank you for being here for our family ... offering help that we don't have to ask for.  Thank you for loving our children more than most people I know love their own.  Thank you for dinners, for baby sitting, for talking with me ... and really listening because it matters to you, and thank you for folding that basket of laundry that is always clean ... but never folded. 

You will probably never know how much this all means to us.  Not only are you helping us in the literal sense, but by helping in those ways you are allowing us more time with our children, and for that we are forever grateful.  Thank you for listening ... thank you for loving ... and thank you for being you. 

And I know your looking at your outfit wondering which that baby that is Gramma... it's Brecken :)

Being Retarded (http://phoebeholmes.com/2011/12/23/being-retarded/)

This was a link sent to me from my very best friend.  She knows how much I despise this term (as she herself does too).  It's amazing how many people use this word as if it's ok.  As if its acceptable.  Well, I can tell you it's not acceptable to me and it shouldn't be to anyone who has a beating heart in their chest.  It's a rude, inconsiderate and COMPLETELY inappropriate word to use.  Thank you Autism.  Thank you for making me a better, STRONGER, and more educated human being.


Being Retarded
All around me, people use the word retarded without a second thought.  Sometimes, I’ll say “Um, dude, really?” and they’ll say “Oops, my bad!  But really!  I was being so retarded!”
Sometimes, I let it slide.  I realize that it’s a word that’s ingrained in our society’s vocabulary and people use it without a second thought to its meaning.
But what does it mean to be retarded?  Well, I know what it doesn’t mean.
It doesn’t mean not being able to choose something for lunch despite 100 choices in front of you.
It doesn’t mean not being able to find your car keys.
It doesn’t mean saying the wrong thing to a person.
It doesn’t mean forgetting your best friend’s birthday.
It’s not something to describe yourself as when you’ve spilled your coffee, or tripped on a crack in the sidewalk.
It’s not something to describe your computer, car or phone.
According to  Merriam-Webster Dictionary  the word “retarded” means -
: slow or limited in intellectual or emotional development or academic progress
For me, it’s not just any old word – it’s my daughter.  My beautiful, bright, happy, loving, amazing daughter who is slow or limited in intellectual development and academic progress.
In our household, being retarded means something different.
It means not being able to fully care for yourself.
It means not understanding what the doctor is going to do to you.
It means not being able to explain what hurts when something hurts.
It means not being able to ride a two wheeler.  Or read.  Or ever be able to live on your own.
But ever the optimist, I also know that retarded means…
…never realizing the negativity behind the word retarded.
…never knowing the insensitivity surrounded the word’s usage.
…never realizing the ignorance of people.
…never knowing how other people view you.
Being retarded also means…
…loving unconditionally.
…finding joy in the smallest of things.
…being self-confident.
…not realizing that there are limitations.
…innocence.
 This is Maura.  Her diagnosis?  Cognitively disabled.  Which means retarded.  When you call yourself retarded, you’re also calling my child stupid.  Because you use the word as just that – another form of stupid.
Let’s get something straight here.
My daughter may have cognitive issues.  She may have delays.  She may never live on her own.  Scratch that.  She will never live on her own.
But Maura is not stupid.
In her own way, Maura is very smart.  Maybe smarter than us at times.  She has more self-confidence than anyone I know who’s called themselves “retarded”.  She is the best judge of a person’s character than anyone else I’ve ever known.
Yes, she is slow to learn things.  But she is not stupid.
I know that most people don’t use the word “retarded” maliciously.  Most people I know use it in a self-depreciating way.  And when I point it out, they go “Oh wow!  I’m sorry!” and they truly feel like a heel. But the thing is, you’re still using it in the way that people who do use it maliciously use it as – to describe stupidity.
So why not just use the word “stupid” instead?  Because I know what “retarded” is.  I live with it in the form of my daughter.  And in our world “retarded” doesn’t equate to “stupid”.

Meeting a GOAL!!

I hate to admit it most of the time, but life with 4 kids can sometimes be ... um ... a whirlwind!  So sometimes little or BIG .. or should I say HUGE accomplishments become more of a familiarity than an accomplishment.  Brecken, for that I am sorry.  We have not even rejoiced in the fact that you are now VERY capable of answering YES/NO questions!!  This was a goal that was set by BRAINS and we had been told to work on with him. 

It probably still wouldn't have hit me if this were not the conversation I had on the way home with him:  Ahem. 

Brecken (just gets buckled in car seat):  "This old man please"
Me:  "This old man"? 
Brecken:  "Yessssss"
Me: "Ok, here it comes" (plays song)

**  listen to song and another or 2 kids songs)

Me:  "Brecken, did you have fun at school today"?
Brecken: "Nooooooo"
Me: "Oh, you didn't have fun"?
Brecken: "No"
Me: "Well, are you ready to go home and have fun with mommy"?
Brecken: "Yessssss"

And all of a sudden I was slapped in the face with the reality that I CAN have a yes/no conversation with Brecken and he is quite capable of holding his own in that conversation ;)  Something just a few short months ago he wasn't quite fully understanding how to do. 

Way to go Breck!!

Mommy is SO proud of you baby boy.

IEP ... and the "real meaning" of the IEP

As a few people know on January 6, 2012 Andy and I attended a meeting at Brecken's school to go over his IEP ... and most importantly to get his "educational diagnosis of Autism (ASD)".  I can't really say that the meeting went well, since I still don't have a copy of his new IEP, BUT he did get his ASD label which entitles him to more services through the school.

Good.  Great.  Ok.  Whatever.

Does anyone really want to know what an "IEP meeting" is?  Well, let me tell you.  It's a heart tugging, fighting the tears back, tell you all about how your son is DIFFERENT from everyone else meeting. I received two reports in my hand.  I'll share some of what they say about Brecken ...

~avoids eye to eye gaze
~tantrums;becomes physically aggressive when he does not get his wants
~appears to no hear others social initiation
~parallel play; does not socially interact
~temper tantrums when asked to do what he does not want to do
~does not accept items when presented to him
~does not follow directions
~does not socially interact/reciprocate
~is unable to interpret non-verbal facial cues
~requires one on one physical management to approximate what is expected
~prefers to play alone
~does not realize how his actions affect others
~does not initiate play with others
~does not pretend play
~observes play but does not join in
~develops predictable routines with toys
~lines up toys in systematic order
~develops attachment to non-essential items
~does not respond to praise
~is unable to take turns
~limited communication skills
~is unable to participate in conversation turn-taking
~says one thing but means another
~ demonstrates unusual tone of voice - screaks for no reason
~does not communicate for purpose of sharing
~does not understand others point of view
~does not ask questions when confused
~uses incorrect personal pronouns
~uses other tools for communication
~does not participate within a group - does not imitate others actions
~demonstrates repetitive patterns of behavior
~does not respond to others communication attempts
~interprets comments literally
~does not question when confused
~is unresponsive to the communication needs of others
~has difficulty communicating personal space preferences
~does not accept change in routine
~needs to be reminded to look at tasks
~stares off into space

This is PAGE ONE of REPORT ONE.  There are 15 more on page 2 and a whole other report full of these.

It sucks.  Hands down this is THE hardest part of any of this.  Being handed a questionnaire and being expected to answer questions pertaining to the "normality" of your child.  And the reward?  A report like this ...

My FAVORITE Christian song ... I hope Brecken can sing to me one day ...

~ Amazing ~

I came across this on the Autism Speaks facebook page ... it is amazing.  It's called "Welcome to the Club" and is intended for a family of a child who is newly diagnosed to read.  The link is at the bottom of the page to give "Jess" credit.  Absolutely amazing. 

My dear friend,
I am so sorry for your pain.
Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.
I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.
I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.
I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.
I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.
I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.
You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think  that you don’t even know what she needs you to be. You do. I promise. You will.
When you became a mother, you held that tiny baby girl in your arms and in an instant, she filled your heart. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all encompassing love that you think couldn’t possibly leave room for any other. But it did.
When your son was born, you looked into those big blue eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.
That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.
You are so much stronger than you think you are. Trust me. I know you. Hell, I am you.
You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.
You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful. Dude, that’s retarded. Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.
You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.
You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.
You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.
You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.
You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.
A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.
You will question your faith. Or find it. Maybe both.
You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.
You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand her strengths. They will feel like family.
You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.
You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.
You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.
You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.
You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.
You will think you can’t handle it. You will be wrong.
This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.
You will be OK.
You will  help your sweet girl be far better than OK. You will show her boundless love. She will know that she is accepted and cherished and celebrated for every last morsel of who she is. She will know that her Mama’s there at every turn. She will believe in herself as you believe in her. She will astound you. Over and over and over again. She will teach you far more than you teach her. She will fly.
You will be OK.
And I will be here for you. Every step of the way.
With love,
Jess
http://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club/

Brecken's Girls

Brecken has a few new loves in his life at the moment :) They are HIS girls!  Their names:  Barbie, Barbie, Barbie ... 

But it's not easy being one of "Breck's girls".  ALL of them are missing their fingers ... and some are even missing toes because of how much he "loves" them.  Yup.  He eats the fingers and toes off.

 

But, don't worry!  He loves them all the same.

Brecken's Blog

I chose to start a blog dedicated to my little man and our journey of living with Autism.  I see other family blogs that have children living with ASD and I very badly desired one of my own.  I need to have an online "journal" to document and save stories about his little or big accomplishments, set backs, funny stories and new silly sayings ... I am SO fearful that somehow I will forget.  Not only forgetting the good things, but the obstacles that he/we have overcome, the times we haven't been able to see the light at the end of the tunnel, and the strengths that we are learning from our "failures".  I also need a place to post the links to all of the amazing stories, songs, and miscellaneous encouragements I have found and wish to never forget.

This blog is for me ...  and for 'our' family to look back on.  It's about Brecken and our family's struggles and joys ... and everything in between.

 However, I know  some people may wonder and be curious about Brecken's life at THIS moment ~ so feel free to stop in and see what's new in the world of Brecken