Hope is the thing with feathers that perches in the soul
And sings the tune without the words, and never stops at all
And sweetest is the gale is heard; and sore must be the storm
That could abash the little bird
That kept so many warm...
~Emily Dickinson

Wednesday, April 27, 2011

This song had to be written for us.

If you have yet to hear the song "Fix you" by the band COLDPLAY, well then you just must.
Even if for one time, please look it up and listen to it...please.

Anyways, I was sitting here at my computer looking at e mails, checking schedules, blah blah blah...
When I hear this faint noise outside the window blowing through the wind...among the birds, the leaves, the Spongebob movie in the background, I hear music...I hear soft music.
My neighbor across the street had this song playing, and it is one of my favorite songs.
I don't listen to it too often because every time I do I end up in tears over it...
The words are just to close to my heart strings and I get lost in them every single time.

I honestly don't know what the song is truly about, but the words are absolutely beautiful, honest, and strike right to your heart.
Every time I listen to it I can't help but believe Coldplay was in my home watching my life like a fly on the wall and came up with this song :)
Watching me in my most vulnerable of times, when it is just Kannon and I talking on the couch together.
When we sit down after a long day and one of us ends up crying out of frustration, exhaustion, or both.
Or, even when we are laughing, crying from joy because we had a breakthrough...
Just life.
Frozen moments that we as parents hold so close to our hearts, and sometimes just can't get out of our heads.
Moments we wonder mean anything, or if they ever will...I have to believe they will.
If all of this is going somewhere...if the years ahead will provide the proof we are looking for in our hearts.

Well, I pulled a few verses from the song that I thought were pertinent to my life, and I know others can relate to them on many different levels as well.

Just some food for thought, and thank you to Coldplay for such words when sometimes we don't have them...

When you try your best but you don't succeed

When you get what you want but not what you need

When you feel so tired but you can't sleep

Stuck in reverse

And the tears come streaming down your face
When you loose something you can't replace

When you're too in love to let it go

But if you never try you'll never know
Just what you're worth

I promise you I will learn from my mistakes

And I will try to fix you

peace :)

Saturday, April 23, 2011

why we do what we do.

I was asked a great, insightful question today...

"Why did you start writing about Autism...more specifically why would you share your personal life with complete strangers?"

Well...my first reaction was:
Because if there was only ONE person out there who happened to stumble across my blog in the middle of the night, after having a catastrophically bad day, and feeling alone in all of the crap Autism can throw at you...well, then I would hope they could read my "crap" and know they were not alone in it all.

I started writing because I would find myself many times searching for something...for anything that would help me understand all of this.
Something...more importantly someone that could cry with me...without having to talk about it.
Someone who really got all of this.
Someone who knew all the dirty secrets I kept to myself out of shame...out of fear...out of not understanding why this beautiful little person I created is creating so much pain in my everyday life.

I wanted a friend that I could just look at after the day I had and they would know....
They would know exactly what my look meant.
They would just know.

Obviously Autism can be very isolating.
Hence, why late at night after the storm settled I would sit down at my computer and just read.
Read the words of other parents who were going through what I was...in some form at least.

We all know what we have is very different.
No one has the same story or experiences.
All we can do is share...out of hope...out of frustration.

All we really want is validation that we are doing a good thing, hell that we are doing anything really.
I know so many times I felt that my days were melting into one another without any differences...without any feeling of accomplishment....just pure survival mode.
But that is something.
Surviving the really hard times make the good ones that much sweeter.

I am not an expert, nor do I ever want to be.
What I do know is that I brought my son into this world and he has Autism.
So why shouldn't I/we share our stories about them...the good, the bad, the everything.
You never know who you can touch or help with your story...you just never know what someone might be searching for at the end of their day.

Talk about the biomedical, causes, triggers, environmental factors...we all have our opinions on all of this.
I am open to all of it, I appreciate all of it.
I read articles, studies, peer reviews every week.
I find them all very interesting and pertinent to my situation at times, so that's always helpful and somewhat eases the practical side of me.

Practical however is not the side of me that sits down and writes any of these blog entries.

Practical goes and passes out right after I put the kids to bed and it is just me...alone, left with my heart and my thoughts of the day.

Practical is not what I would read about years ago when I needed someone to reach out to after I had a bad day.

So back to my original thought...why did I start writing?

I did it out of love for my son.
Out of necessity for my soul.
I did it because I don't care what anyone thinks of my personal life.

I did it in hopes that if I helped one person who felt as alone and helpless as I did at times, then I am doing something wonderful.
Because even though in my heart of hearts I know what I am doing every day for my son is wonderful, I would love for someone else to validate my actions through truly understanding it all.

Because sometimes we can't reach out to those closest to us...
And that is o.k.

Sometimes we have to reach out in hopes of finding truth...acceptance...peace...validation.

Sometimes we have a friend out there who gets us better than those we hold dear to our heart.

And that is a beautiful thing.
That is humanity at it's best.

And that is why I share...I know Kannon would do the same if he could.

peace :)

Monday, April 18, 2011

Bad day? No...just a grumpy princess who needed a life slap.

When you live with Autism, or any other difficult life situation I know there are some very dark times.
I know I have considered myself in dark situations, trying to escape this current reality...but I always come back to a good place inside my heart. I never let myself go too far in the direction of hopelessness.

I try every single day to do the best I can.
I love myself, my son, my daughter, my friends and family.
I remind myself how blessed I am to be able to live this life and experience all it has to offer me...ALL of it.
I know I chose this journey in life for whatever reason, and I accept the lessons that come my way no matter how hard some of them may be.

I have learned to forgive myself for times I wasn't as strong as I could have been.
I let go of guilt, judgement, and worry...because honestly none of them will serve any positive purpose in my life ever.
I try to fill my heart with as much joy and hope as possible every day, because you just never know when powers out of your control or conscious will point at you and say, "You, it's your turn now"...

Then...there are days that I get slapped in the face and some of that familiar pain I work so hard to dissolve every day comes right back.

We were at the store a few days ago and Kannon, Kalena and I all went in to the Ladies restroom.
Kannon went into the handicapped stall and Kalena and I shared a smaller one next to him.
Kannon finished first, I heard him flush and come out and start to wash his hands.
Within a second I saw someone walk into the bathroom and go to the handicapped stall, then turn around and right in Kannon's face yelled...

"Next time use the regular bathroom...and the boys bathroom...AND put the toilet seat down..."
Then she slammed the bathroom door shut and muttered something under her breath...I'm pretty sure I heard the words "stupid kid"...

My face immediately became a frustrated shade of red.
I calmly came out of the stall, where Kannon was cowering in the corner scared of this stranger who had just yelled at him...and I am not exaggerating...YELLED at this 7 year old who has no words for her in return.

He immediately grabbed onto my shirt and hid behind me just staring at the stall where the lady went into.
I continued to wash my hands and Kalena's hands, then we walked out and stood waiting outside the bathrooms...Oh I was not going to let this one go...

I had maybe 4 minutes to compose myself, figure out what I was going to say and try to remain calm...because at this point I truly wanted to explode...and cry.
I haven't felt emotions like this in a long time...I have learned to not default to anger or frustration because I know it will not do me any good to allow others to affect my emotions.

So, out came the lady.
She was in her 50's and she was using a cane, so she clearly was handicapped and thought that since my son didn't have any visible faults he was "fine" and abusing the use of the handicapped stall...

She walked right up to me before I could even think about approaching her and said "You need to teach your son to put the seat down and respect the use of the handicapped stall...what kind of mother are you?"

What kind of mother am I?
If this grumpy old woman only knew.

So, I said in response to her...

"First of all, I apologize if you felt my son was being rude by not putting the toilet seat down, we have been working with him on putting the seat down and we will continue to work with him on such things..."
"Secondly mam, HE IS HANDICAPPED...(I did raise my voice on this one)....in fact in the eyes of the state he considered Severely handicapped..."
"He has Autism...I don't know if you know what that is, but if you'd like I would be more than happy to educate you on the disorder so that you may understand why my son who looks perfectly normal to you used the handicapped stall and left the toilet seat up... ALSO he used the Women's bathroom because he cannot be left on his own EVER, so I needed him to be with me in the bathroom..."
"SO the fact that he left the toilet seat up is something that he has yet to understand why it is wrong...and the fact that he used the handicapped stall, well I think you can figure that one out for yourself now that I had to explain this to you after you, an adult, yelled at an innocent 7 year old..."

She was silent and looking at Kannon while he peered around my back at her.

One last wave of thoughts came to me and I finished with them...
"You scared my son because of a toilet seat...did it ever cross your mind that maybe he IS handicapped and that's WHY he was using the handicapped stall, and maybe even WHY he left the seat up?"

Her face dropped, and my heart did too...
I have been faced with this so many times in public.
People either act out of ignorance or impulse and then once they are faced with the reality of it all...the fact that they acted like an a** to a little person who has NO control over any of this...well it is written all over their faces...they feel like crap, they feel embarrassed...as they should.
And once again, I am the one who feels terrible that I just raised my voice at a complete stranger...doing the very thing that she did to Kannon.

She obviously felt terrible, lowered her head and was speechless.
She managed to say that "I just need to continue working with him on the toilet seat, because it's just gross..."
And she walked away.

Kannon was still very sad and confused as to why he was being yelled at by this woman,
As she walked away he looked at me and said "EEEEWWW...mad mad princess"
I don't know about princess....
He then gave me a big hug and kissed my arm.
I knew right then I did the right thing by talking to her the way I did, Kannon knew it too.

I hope this lady learned something from all of this.
I hope she will think twice before judging or acting again.

Most of all, I wish she could know that even after all she did to Kannon he still called her a Princess.
After all, he only knows good.
Bless his heart.

And those who live every day with a difficult situation, I hope we try to be better people to the ignorance  of human compassion and patience.
I hope we will not let our situations in life get the better of us, we cannot let what other people think or think they know affect our daily search for happiness.
So what if we have to be the better person sometimes...or ALL the time.
Live by example.

I'm o.k with how I reacted to this situation.
I'm just sad that it ever had to happen.
I hope it never happens again, and if it does I will continue to fight for the right thing.
I will always choose hope over anything.
I will always choose the light over the dark...only I can choose my happiness.

If we allow others to affect our lives emotionally then all the good people in this world will allow guilt, worry, and helplessness overcome them.

I say No Thank You princess.
Not today.
Not ever.


Thursday, April 7, 2011

Friendship in 2D...for now

There are moments I have experienced in my life because I live with Autism.
Moments that you could not make up...ones that don't even happen in the movies.

I see so much pain, struggle, solemnity within my child every day that sometimes I forget what I am seeing.
Part survival instincts, part denial, but overall something that Autism takes over within the little person standing in front of you.
Like it or not...it is truth.

Kannon is learning "cause and effect" concepts right now in therapy.

Scene: A picture in front of Kannon of a little boy crying because he fell down on the playground, his friends in the background looking on.
Therapist: "Kannon how does they boy feel?"
Kannon: "Sad"
Therapist: "Why does the boy feel sad?"
Kannon: "Because he fall"
Therapist: "What can he do to not feel sad anymore?"
Kannon: "Take a deep breath"
Therapist: "That's right, he can take a deep breath, now what can his friends do to help him?"
Kannon: "Say Sorry"

You get the point.
It is an exercise in understanding why? how? what?

This afternoon Kannon and I were sitting coloring at the table and we came across a picture of a boy in a magazine he found.
The boy was sitting alone on a playground with his hands on his face while all the kids in the background were playing, laughing...it was very similar to the one he saw earlier on.

Kannon comes over to my side of the table sits next to me and says "He's sad"
I say, "Oh, yes he is sad baby...why do you think he's so sad?"
Kannon: "He has no friends...he's sad."
Before I could get anything out he says to me: "Kannon no friends...I want friends"

After that he walked over to the couch and just sat there for about 10 minutes in silence.
He fiddled around with a sponge bob doll while he just sat.
Staring off into somewhere...his mind obviously running around with his emotions in a body that can't express any of it.

I can't imagine not having friends in my life.
I think we take it all for granted sometimes.
We don't really know how lonely we would be if we couldn't pick up the phone and talk to someone...just to have someone smile with us, someone to share this world with even in the smallest of gestures or ways.
Friends keep us grounded, they care enough about us to share their energy and time on us.
For better or worse, a friend sometimes is the only one there in your corner.

After sitting for awhile, Kannon got up and sat down at the table and started to draw a picture.
After he was done he came up to me and showed me a beautiful picture he had drawn...
One of himself and another boy.
His friend.
For now.
He hung the picture up in his room right by his bed...
"My friend mamma...Kannon's friend" he says to me while I watch him tape this drawing up on his wall.

Whenever that friend comes along in Kannon's life he will be one lucky person for sure.
For Kannon has been waiting a long time for him.

And I can guarantee that he will never be taken for granted.

Another life lesson courtesy of Kannon and his beautiful ways in his own beautiful world...
Consider yourself lucky if you have friends...or even A friend.
Keep those drawings of them close to your heart...or as in Kannon's case on his wall...for now.


Monday, April 4, 2011

The "other" child

I have had this nagging feeling for the past couple of weeks that I am just not doing something "right" in regards to raising my beautiful daughter...
Yes, I have another child besides my son who I blog about all the time.
Case in point.

The other day I had put on my blue shirt, blue Autism Speaks ribbon pin and we were headed out to the door to get into the car.
My daughter looks at me with tears in her eyes and says, "What about me mommy?"
"When will I get a day for you to wear a shirt?"
And...heart drops...mouth crinkles into frown and I pick her up and give her the biggest bear hug I could.

I wanted so much to run back into the house, put on a personalized t shirt with her picture on it, with a pin that says "I LOVE MY DAUGHTER...TOO"
Ha, so sad...but sometimes I feel as if I need to yell that at the top of my lungs to the world...and obviously to her.

I am still figuring this whole deal out.
I still don't know how to balance having a son with Autism, and then this other perfectly special, intelligent little girl who has some tough questions.
She never asks too much though...she never complains when we have to leave the park after 5 minutes because her brother threw a tantrum and we had to leave...she never rolls her eyes or makes fun of him when he can't do what other kids can...she doesn't ask why he still needs help dressing himself when she can dress herself just fine...she just doesn't.

But she does want to know why he is so damn special...and sometimes she "isn't"....at least in her eyes.
She doesn't understand why there is a team of people who are at our house every single day to work with Kannon...to play with Kannon...to take notes on Kannon...to watch Kannon's every move...and why she doesn't have this "special" treatment.

Of course she doesn't feel as special.
Who would when you look at it logistically.
Kids look at things in black and white...there is very little in between for them.
That comes with age and influence.
I must start filling in her gray areas before time passes me by...as we all know it does go by fast.
Before we know it our babies aren't babies anymore...and we are left with regrets...at least some of us are.

I already have so many regrets...and I try every day to put them behind me and move forward.
I must set an example for her.
She needs to see what true acceptance is.
She needs to know that life is what you make of it...and no one can make you feel bad about yourself...only you can do that.

She needs to go beyond being the "normal" child in all of this.

I try to show her in my own way how different and special she is.
I try to take her out on mommy/daughter outings so that just the two of us can hang out and talk...go shopping...walk around holding hands laughing...just being around each other without the constant demands Autism places on our every day life.

I think she enjoys our special time together.
I also know that the minute we get home, she runs to wherever Kannon is and sits down next to him.
After all, he is her big brother...he should be someone she can run to in her life.
I can only hope someday this can manifest to truth...
For they both rely on one another in ways they don't know about or understand yet.
They only feel love.

I think once I stop over thinking this whole thing and just allow my children to figure things out in their own way, I may just learn how to deal with it all.
They both seem very comfortable in their love for one another, and nothing in this world can be a better life lesson than that.

I need to accept that I don't have the right answers sometimes...even when I think I may need them.
I need to relearn a new kind of patience that Autism previously took away from me...only because I allowed it to.
Everything in life is given to you for you to learn from...to find balance within.

Just because I have 2 kids doesn't mean they balance each other out in my life.
It should mean that I need to find the balance within each of them individually for the benefit of us all.
At least that is what I am going with for now.

Oh...I am also going to make a personalized pink and red t shirt with her favorite things all over it so I can wear it on our next girl day together...I think that's definitely in order :)