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, December 22, 2010

defining days


Patience: good-natured tolerance of delay or incompetence
Incompetence: lack of physical or intellectual ability or qualifications

:a condition that is the inspiration for an activity or situation; "necessity is the mother of invention"

To be the best mother I can be to Kannon I must have above anything in this world, patience.

I must be patient with his behaviors.
I must be patient with his defiance.
I must be patient with the big picture here....that Kannon has little to no control over aspects of his life.

This all makes a recipe for such an opportunity.
My last post touched base on a bad day...one of many.
Today I wanted to share the outcome of such days.

Introspection: the contemplation of your own thoughts and desires and conduct

So this is where I am...today....not in a month.

I have realized the path I have chosen in this life is not an easy one.
I know that I chose Kannon, and he chose me.
I love that he trusted me enough to put his life in my hands.
I am frustrated that I cannot be on my "A" game every day.
I understand that without struggle and raw emotion I will not grow.

I like the definition I found of "mother"...:a condition that is the inspiration for an activity or situation; "necessity is the mother of invention"

I like to think of myself as a "condition", rather than something so concrete...at least in societies mind(s).
I like to know that I can affect someone...that I can be the inspiration for something of greater good.
I like to think that a true "mother" is by definition someone she has become out of inspiration...
I like to think of it all as one big constant circle of evolution...whether it be emotional or physical, we must evolve.

I think inspiration can come from almost anything...even a really bad day...when you pick yourself back up....

Out of necessity.

peace:)









Wednesday, December 8, 2010

Bad days...we all have them.

One of the great, yet unexpected perks of writing this blog is all the positive and loving feedback I get....
I have been told how inspiring I am, how great of a mother I am...just so many flattering and thoughtful comments.
I am obviously grateful and flattered by it all, and today I wanted to share a side of me that may not be so flattering.

Lately Kannon has been beyond Thunder dome so to speak....he has absolutely been behaving out of control and most of the time beyond my patience levels.
I don't have the slightest clue why his behaviors have been sky high, but I can tell you I have really had to dig deeper than usual lately.

I have to constantly remind myself of all I stand for...
I have found myself really tired, completely exhausted, and sometimes loosing my temper with him.
I really try not to raise my voice at Kannon, but sometimes (especially lately) there really is no other choice.
I hate that I feel so impatient sometimes.
I hate that I cannot get through to my son.
I HATE that even when I raise my voice at him he looks at me with no reaction and continues to do what he is doing.
I hate that sometimes I just want to shake all of this out of him...make him O.K.

I never knows if he is ever really hearing me.
I never know what he is thinking, and if he knows what is truly going on around him.
I often find myself feeling as if I am talking to myself all day...because honestly that is what it feels like at times.

The other night after hours and hours of tantrums I was sitting at the kitchen counter on my computer looking at the news, and Kannon was in his usual hyper active mode....aka, not being able to sit down for a minute, talking non stop, yelling, not listening, etc...
He had asked me about 30 times to "look please" while he was jumping on the couch throwing his buzz lightyear around in the air, and quite frankly after looking for the first 5 times I was over it.
SO, he reverted to asking our dog, Koda to "look please".

Does he know that he is talking to a sleeping dog?
Or let's be honest...that he is talking to a DOG.

At first I thought it was cute.
Kannon just wanted a friend to interact with...to talk to...that is all he really ever wants.
Then, I found myself getting sad for him.
He is talking to a dog.
As I write this it brings tears to my eyes...my baby boy talks to our dog asking her to play with him...to be his friend.
It is so sad.

I am SO tired of being sad for my child.
His disorder constantly pulls at every single heart string I have and it is exhausting.
It is so exhausting to have so much empathy and compassion for someone that it literally consumes your entire being....everything. My thoughts, my actions, my well being.
Autism has consumed me.

As I have mentioned in the past, the looks, the stares, the constant need to watch Kannon...I am tired of it right now...truly exhausted.
The public affect it has on ones soul to raise a child with Autism...it is something I can't explain in words.
It is like having a Tasmanian devil in a fine china store.
A beautiful little person always with you, always needing your attention, always in your head.
You have to be their best friend, their advocate, their parent, their punching bag, even their thought process.

I am tired of Autism right now.
It has pushed me beyond my head...beyond my abilities.

I know I will pick myself back up and continue on with grace and joy, but I will allow myself times like this too...times that are perfectly imperfect in this life.
Times that I hope are pushing me beyond my own worldly knowledge of why, what and how?
Times that I hope will push the interior of my soul and make it that much bigger for Kannon, because god knows...he needs it.

peace

Sunday, November 28, 2010

Love just is...possible.

Today was my late father's birthday.
He would've been 69.

I find the more time passes it gets easier without him physically being here.
I still miss his voice, support, and love though...that will never fade.
He is and always will be my only father, and I am thankful I had him the short time I did.
We all only have 1's on our lives....1 father, 1 mother, etc.
However, lately I was reminded you can still have people care for you just as much if not more than your 1's.

I have a small family, I cherish them and my time with them...you have to when you have only a handful of family.
I had the chance to go home for Thanksgiving, and I was shown just how others can care for you as if they were your father, mother, etc...

I was reminded how cared for I am on different levels...and it was a nice reminder of human nature.
Just because someone is not your blood, doesn't mean you can't feel deeply for them.

I was reminded of what I feel I am always trying to say...we are all just people wanting love, respect, and care.
All of these emotions can come to you through people no matter what their relation to you.

When you stop being selfish and start loving...open your heart to others...that is when you really can receive gifts in life.
If you choose to listen, love, and receive all that is out there for you you may be surprised by the results.

We are all blessed, and we are all capable of finding love in unexpected places.
I found more love in my family than I knew existed...I bet most people could do the same if you choose to.

Life, love, and compassion is always around us.
We must let down our insecurities, preconceived notions, and start allowing.

Kannon is not my peer....nor my teacher in socially accepted terms...however, in all truth he has taught me more than any human being.
When I let myself allow other life possibilities is when my life became possible.

peace :)

p.s. Happy Birthday Dad...miss you, love you, hope you are proud of where I am.

Friday, November 19, 2010

Giving thanks

I am thankful for this little girl :)

She loves deeply just like me.
One of my favorite things in life is when she and I cuddle up together and read books...she is the best cuddle bug.
She sits down and listens to Kannon when no one else will.

Thank you for my little sassy angel :)



I am thankful for this little man :)

He has been the most challenging gift life has given me.
He brings me to tears and touches my soul like no other.
His smile is all I need to have a good moment.

Thank you for my little guy :)






I am thankful for this guy... :)

He has always filled my heart with laughter and fun.
He loves and respects my kids, just as they do him...what more could I ask for?
He loves making me smile...and I love that.

Thank you for Ky.




I hope everyone takes a second to give thanks to those who touch our lives.
I have many more people I am thankful for...just didn't have their pictures on hand :)

We all need each other, we all learn from one another, we are all just human beings who deserve the same amount of love and respect.

Happy Thanksgiving everyone!!!

May you all eat lots, smile and laugh a lot, and never take your loved ones for granted...

peace :)



Tuesday, November 16, 2010

just a thought...

The world is such a huge place...I know I am a genius for stating such a fact.
I just hope all people realize how truly powerful we are.
Our thoughts, our actions, our words....they can absolutely make the world a better place.

I try for a few minutes each day to state my intentions...
I always make intentions to be a better, more patient and peaceful person.
I make an intention for the purity and health of the earth...I also make intentions to open my life up to new possibilities.

We must remind ourselves every single day why we are here....
We are all powerful creative beings that have the power to change our lives.
We can absolutely change things just by the way we think and talk to ourselves, to each other...

We should not underestimate ourselves.

I see Kannon make amazing things happen every single day.
He creates worlds, understanding, peace...he is his own creator.

He looks at "problems" as gifts instead.
He takes on everything with stride and with beauty.
We can absolutely create our own language... a new language for ourselves.
A more positive look on life...change the negative to a positive, stop inviting in bad thoughts.
Stop living life like there is constantly a deadline to meet.
Slow down a bit...reflect, enjoy, take life in...

Think good, say good, do good.
Another life lesson compliments of Kannon.

Just a thought for the day...

peace :)

Monday, November 8, 2010

Kannon has always had a great sense of humor...adventure...spontaneity.
People sometimes ask if kids with Autism can have a sense of humor...a personality...
Well here is a little story for you, maybe this will help answer that.

His recent aversion (thanks to Autism :)) is his clothing, specifically dirty clothing.
If he gets a drop of water on his shirt, pants or underwear they are coming off. God forbid spaghetti sauce or dirt gets on him...

We were in Big Lots this afternoon strolling through the Christmas aisles of boxes, wrapping paper, and lights.
I found myself so happy...I LOVE Christmas. I love the decorations, smells, colors, weather...everything.
I was drifting off into a magical wonderland of joy and tinsel when all of a sudden I realize Kannon has run into a different aisle.

I hear him jibber jabbering to himself and when I walk around the corner into a few aisles over there is my beautiful stalky boy with his shirt off and attempting to put a princess dress on over his rather large head...
He was stuck and not particularly pleased that he was stuck in the pink satin dress with white bows everywhere.

I had to stop a moment and just laugh...
Then we had to regroup, take the princess dress off and attempt to find his discarded shirt.
Now I have no idea if the "no shirt, no shoes" policy applies to children, but Big Lots apparently is fairly understanding in this case.

We had an employee helping us look for his shirt, and eventually a nice old lady pitched in too.
All the while Kannon was being tugged around by one red faced smiling mother without his shirt on.

We eventually found the shirt in the box aisle, and when I looked down to put it on him.....
Wouldn't you know it he had managed to snag 2 rolls of masking tape, a barbie doll, some green ribbon, a pack of Christmas cards, and a Santa hat....oh and we had to buy the pink princess dress since his girlish figure managed to rip the entire backside.

That's my boy :)

p.s. the very sweet elderly lady who was helping us look for Kannon's shirt did eventually ask, "does your son talk, or is he always this well behaved?"

peace :)




Monday, October 25, 2010

What Autism has taught me this year...

I would've done this for every year, but too late:)
I was inspired by my good friends blog to list the things I've learned over this year...it was a great year :)

1. You can find beauty in everything and everyone
2. Never judge someone or a situation, you really have NO clue what their life is like
3. Smiling is the best thing you can do for yourself and those you love
4. Patience is a virtue
5. I have qualities in me I never knew were there
6. The human brain is a magical, amazing thing, we may never understand it
7. I really do love being a mom
8. I am a good person
9. I love my friends more each day
10. Sweatpants are a saving grace
11. As far as life obstacles for humans, this is one of the big ones in my book
12. Most people don't know anything about Autism
13. What people think they know about Autism is for the most part incorrect, or purely scientific data they repeat from news stories
14. It is not worth loosing your temper over small things...or anything really
15. Life is how you decide to look at it
16. Every day is full of choices
17. Never assume anything
18. Don't take anything personally
19. Go into every situation open minded and ready to receive anything
20. Everyone deserves respect
21. Listen before you act
22. Love, in its purest form, is the most life changing thing that can happen to you if you let it

peace :)

Monday, October 11, 2010

I thought I would have learned this lesson a little earlier considering Kannon has great difficulty expressing himself using words.

I have found that people say so much more with their actions, than with their words.
I have found words to be very tricky actually...
Words involve a lot of factors along with them...tone...intonation....volume...etc...

Either what we are hearing is wrong, or interpreted incorrectly, but usually I find that we mis- communicate with our loved ones every single day.
We all know how this works with our spouse/boyfriend...they say one thing, we take it another way, and all along they meant something else entirely.
Yet, we argue about it until we come full circle...because of words and all that comes with them.

Or, someone says one thing, but really are hiding other truths within themselves and are either embarrassed or scared of letting the truth out. So, in essence they dig themselves a deeper emotional pit to get out of someday.
Such work we make for ourselves sometimes...

I have come to love this, and appreciate that my son has to always live in truth and cannot manipulate his situation at all due to his lack of language....at least for now :)
Never thought of it this way...
He has to always deal with the emotion that arises within him.
He can't talk it off...lie it away...he has to feel it and act upon it at that moment.

This is why he is a very intense kid to be around, but it is also never a guessing game with him.
No underlying drama...it is all out there.
And quite honestly may teach us something about human nature.
He is a happy kid 95% of the time....always smiling, always looking for fun, laughter and the beauty in any situation.
Words don't hurt his feelings either.
Except for "NO"...but not many people like that word.

I have, without consciously realizing it, had to raise my son on pure actions...NO words.
This is why raising a child with Autism is difficult.
There's no lying our way out of situations...words alone allow us of that.
Any mistakes I have made with Kannon have all been completely honest and have made me always think before I act.
I have to constantly face my actions with Kannon every minute of every day.
It is very hard, but has taught me to be a better person in so many ways.
I feel this is what has taught me patience...it really is a virtue.

I find the older I get in my relationships with people this becomes so rare.
I like living in truth...even if it isn't pretty.

Actions always speak louder than words, and those who really know and love you will see this.
They will see right through you if you are lying or hiding truth from them or yourself.

So I guess we should all try to be more honest with ourselves....even if we know the consequences. It will free you in so many ways...believe me, I know.

Kannon taught me that :)

peace

Wednesday, October 6, 2010

thank you

My heart is very heavy and sad today.

I have come to realize that there will never be enough help out there for these kiddos with Autism.
Even if a family is lucky enough to find the best therapy/therapist out there, it will only last until the money is gone, or until the therapist must move on to better themselves.
I understand that the need for help outweighs the resources available, and it is beyond frustrating.
I also understand that most of these people that offer their help, whether paid or not, are nothing short of angels. The sad, political side of it all is that they just don't make enough money for all that they do.
Just like teachers, these therapists are underpaid and I would suspect in some cases under appreciated.

It makes me so sad that most of us have to rely on faith to keep going.
There is no solid "plan" in place that would allow us to put our intellectual faith in any sort of system out there.
No matter what intentions an organization sets up for themselves, in the end it all comes down to money....duh...but I still hate it.

With a disorder like Autism families/people are forced to live off of faith....
Most of us have little to no money, and the money we do have is all put towards these kids and their recovery....or the hopes of a recovery.
I am not complaining about the money our family has invested in Kannon.
It has been worth every penny.

I just wish that there was a way I could find peace with my faith in this life journey, and know that it will all be o.k.
Not perfection, just o.k.

I just want to know that there are people out there other than myself who love these kids as much as their families do. Maybe not completely possible, but you know what I mean.
And, when we are lucky enough to have these people in our lives, how we can keep them there...
without restricting them, or forcing them.
I also wish that the therapists who help these kids everyday would know just how much they are appreciated and hope that they don't loose sight of the bigger picture when politics get involved in their job.

The best gift that can be given to a family affected by Autism is time, love and acceptance.
Period.
I know how it feels when someone genuinely tells me what a good job I am doing as a mother.
Especially as a mother to a child who has Autism.
I have become a better mother because of the help and guidance of these therapists and the therapy they practice.

I hope someday the system can catch up to this concept.
These kids are more than charts, numbers, or $
Their mere presence in a room can change your life, put a smile on our face, melt your heart.

I am thankful to those few in our life who have affected us so deeply...the showing of human compassion and willingness to grow and open your minds/hearts has not gone unnoticed.
What you do is revolutionary and beautiful.

Unfortunately these kids have no choice in the matter when it comes to having Autism, but fortunately for them there are people out there that do choose to deal with it...


peace :)

Thursday, September 9, 2010

I love perspective(s).
Whether it be from another persons mouth, or a drawing showing someones point of view.
They are learning tools...art...art of life.

I have learned that listening is an art of life too.
I love to listen.
Even when I really want to say something, I will stop and listen first.
I have learned so many wonderful, and interesting things by listening.
It has made me a better person....calmer...more insightful.

Just like physical art, there are emotional arts to be mastered as well.
Listening, watching, being open minded and clear.
There is something to be learned from everyone...from every situation.
I was always an "artistic" type of gal. Much more than analytical or logical.
I like organized chaos...I like feeling my way through things and cataloguing it all in my own mind so that when I need to come back to it later in life I can.


Kannon has been suffering from head pains the past few weeks.
We are going to the doctor tomorrow.
I hope it is just a simple headache, but he is in pain...and there is no bump there.
So, it must be inside his beautiful head where he hurts....
I have to hope his complex, artistic mind is not hurting in a real biological way.

His mind is art to me. I hope he is not in pain...I hope.
He shows me the most beautiful pictures every day with his drawings...actions...motions.
He has become like living art to me.
I have had to observe him like a sculpture of sort...watch him...admire him...question him...listen to him.
Listen to him without judgement or frustration.

I do it every day and still think he is the most beautiful creation ever.

He is my best art project.

I am an artist :)
I made Kannon.
But if you do have a moment will you say a prayer for my little man...that this is all nothing.


peace :)

Monday, August 23, 2010

the gift...

My B Day is coming up, so it makes me think of gifts :)
The older I get the fewer gifts I receive...but only the physical ones.
With age comes the ability to open oneself up to other gifts...whether it be an act of kindness, an emotional one, or a sunny day, I can find gifts in them all.

Here is what I would really want though, it has been in my heart for the past month so I wanted to share.

I want a clear sunny calm day.
Kannon, and I on a simple wooden raft, floating down a river in some secluded wooded area. Birds chirping, fish swimming by, and no sound other than the water. I would like to be alone with him and just be...and then a little down the river we would pick up Kalena to share the journey with us.

For one, I like the feeling on just being able to float, downstream, no resistance...it feels great.
I like the thought of keeping it simple, no fancy boat, just enough to keep us afloat and safe.
Most of all, I like the thought of getting the opportunity to spend quiet, alone time with my kids.
I want to get to know them away from this environment...I want to be able to just be with them...no appointments, no therapy, no expectations, no other human beings...
I feel so caught up at times with our current schedule that I feel I loose touch with the kiddos at times.
I feel so obligated to do my own therapy on Kannon even when his therapists have left for the day.
It is all out of love and hope that Kannon can pull through this thing called Autism...
but I really don't want to forget how to just be a person with my kids too...not just a mommy, or the mother of a child with Autism.

I find when I really sit down and talk/listen to Kalena she is the happiest.
I find when I just cuddle up next to Kannon and let him just be is when he is happiest.

Unrealistic, perhaps.

I just like the metaphor of the downstream river, my 2 kiddos and nothing else.
I like the way it makes my heart feel.
I also like the idea as a mother to stop making resistance in Kannon's river. I feel at times as if I am stopping his boat, or trying to resist the journey for him...and it is out of fear, not love.
Maybe I should just let him float for awhile, see how it goes....give him that peace of the journey he has chosen for this life.
Just love him and stop being scared for him, and for myself.

I have learned with experience that when you act out of fear it is the emotionally "easy" way to deal with a situation.
Fear of loosing someone, fear of the unknown, fear of loosing control, fear of looking stupid...etc.
When you act out of love though...nothing could be better or more pure.
Easier said than done...but I am going to start.
That is my gift to myself.

peace:)

Friday, July 23, 2010

Our 2 Visitors today :)

We had a visitor today...actually 2 of them (they know who they are :) )
It reminded me how wonderful Kannon is.
He is so loved.
He is Inspiring...one of our visitors said that today....it made my heart melt.
Sometimes I forget how much he inspires my heart...he is truly so special.

He fights so hard every day for the smallest of things in life.
Most people buzz around getting by, when Kannon can't even say "I love you" to me.
He struggles to find 3 words to piece together to tell me what he wants or needs.
I see my little man struggle SO hard every single day.

But not today.
Today he had true friends here with him.
Friends who let him run around and laugh...and just play...be himself.
He had someone to sit next to and watch a movie with besides me.
He had someone to put his hand on...someone who understood him without judgement.
People who truly believe in his soul...his potential...his heart.
Kannon has a few "angels" in his life...I hope someday he can thank you personally with the words YOU helped give him. After all, without people like you Kannon would be a very different kid. He would not be as happy as he is...because he knows he has friends in you.
He trusts you.

So rare are these days that I had to write about it.

Everyone has angels in their life.
You just have to be open enough to see them and to allow them in.
Even the smallest of gestures can touch the heart in the biggest of ways.

Thanks to our angels.
You truly are changing the world...small little worlds like ours.
We love u :)

peace:)

Thursday, July 22, 2010

TO judge or be judged...

It is inevitable.
I would rather be on the latter part of that statement.
Only because I don't like to judge people...not that I haven't in the past, but I find it unflattering and plain out bad karma.
I think only because I had such hard times fall upon me I learned that lesson the hard way.
I was judged very closely by some, and I didn't like how it felt...so I stopped doing it too.

I like to share my opinion on life matters, but I don't like telling people how to live their life or if they do something a certain way it makes them a terrible person.
It is not my place to do that.
It is no body's place to do that.

Whatever decision(s) one makes in life is their own.
However they react or attend to a life situation is their choice.
As I have shared in the past, I feel life is all about Choices.

You learn from these choices, you feel your way through it all...and that is beautiful.
That is life.
That is learning.

Sure, we all fall on our asses...but you find out who your real friends are when they pick you up and laugh WITH you.


I know people judge me as a mother with a child who has Autism.
I see it every single day.

Bring it.
I like the challenge.
I choose to be open minded enough to open my heart and experience to hopefully better human souls.

For better or for worse, this is my life.
I am grateful and flattered to share it with you...my friends :)

peace:)

Sunday, July 11, 2010

Inevitable truths

I just met my neighbor who lives 4 houses down yesterday.
They have a son who has Autism and is 46 years old.
She stopped me as Kannon and I were walking the new puppy and started talking...for an hour straight...I think I may have said 2 or 3 things...
she noticed that Kannon had Autism and told me her story about their journey with the disorder.
It seemed that still even after all these years and struggles it still hurt her heart to live with Autism everyday, and that she still wanted someone to talk to about it.

It gave me a possible glimpse into my future with Kannon.
I have thought on occasion about the possibility of him living with me for the rest of his, or my life.
I will forever be his hands on caregiver...
He may never have friends like I dream for him, and may never marry or have a family of his own.
All my fears looked me dead on after talking to this lady, for she has been living it her entire life...and the pain was written all over her face.

I have talked about hope in the past, and I refuse to let go of it.
It is my warm blanket when I get scared....and believe me I am scared more than I may let on.
Sometimes when I pray at night I pray directly to "hope"...I want it to hear me and work it's magic.

At least there is one thing I can be 100% of...and that is Kannon will always have me as his friend...I will too someday share his life story, and I hope that it will be filled with wonderful things, accomplishments, laughter, pain and triumph.
I will never emotionally leave Kannons side, and when the day comes that I have to leave him and this world I can only hope the love left behind will be enough for him.
I can only hope he will remember me, because god knows what his mind is capable of...one of the many frustrating effects of Autism...

This is all as a parent that we can hope for our children...that our love, guidance, and time with them was "enough".
This is why it is the most important job out there...
and it is why life can be carried on with and passed down through the soul.
At least one can hope...

peace:)

Sunday, June 20, 2010

Happy Father's Day

This day is confusing to me.
On one hand I really want to celebrate it and find peace within the thought of it all...and then on the other hand I want to climb into my bed and sleep through it.

I never loved that there was a day invented to celebrate dads...and moms.
I always thought it should be done every day on some level or another.
However, it does give some people the chance to redeem their emotional negligence due to busy lives, excuses, etc...

This day makes me miss my dad.
I miss his voice, I miss his counsel, I miss the way he could make me smile from the inside out.
I miss that he isn't here to see my babies grow up, that he will never be called grandpa...
I miss having him here to ground me...we all need people in our lives to feel grounded.
I miss that there is one less person in my life that would truly love Kannon and all his sufferings...

I wonder if Kannon will ever be a dad:)
He would be fabulous.
So much love, so much light to his soul...so much he could teach a soul through his life lessons.

I sat in the driveway this afternoon with tears in my eyes pondering all of this...
I was watching Kannon sit in his red wagon talking to himself and making a makeshift sword out of two sticks and a plastic bag...ingenious, truly it was.
Then as if my dad could hear my prayers and thoughts the wagon all of sudden slowly started to move forward...slowly...inching to the point of the top of the driveway where it starts to slope down. Kannon just sat there and looked back at me as if I was somehow doing this from 10 feet away...
I just sat there, there was no obvious danger...if Kannon did go flying down the driveway he would be fine...really he would.

All of this happened in slow motion to me like some unseen hand of faith nudging that wagon inch by inch...then there went Kannon down the driveway...he ran into the cable box. He was smiling the whole short ride down the driveway...it was beautiful to see his face light up.
Then what came out of his mouth made everything great, it made this somewhat crappy day peaceful...it made me remember how great life can be if you let it.

"OH CRAP"..."OH CRAP"
Clear as day Kannon belted those two lovely words out...he even made serious eye contact with me and repeated it to make sure I heard him.

Ahhh, my heart was smiling again...my boy never ceases to amaze me and lighten my days.

Happy Fathers Day Dad, wherever you are...
and to all you out there who are blessed with little ones that change your life every moment.

peace:)

Wednesday, June 2, 2010

Every day I notice more and more the publicity and attention that Autism is receiving.
More people are interested in the disorder and what it is all about...

I find the general consensus is that people are baffled by it.

They don't understand it and cannot wrap their heads or hearts around it all.

I have been asked many times "If I am around an Autistic child, how should I talk to them?"

Or, "should I try to talk to them at all?"

It's a great question, and I don't have the definite answer, but this my my personal advice...


I know as a parent of an Autistic child the one thing I want more than anything for Kannon is for him to be accepted. For him to have friends someday and to be liked by his peers.

That being said, I love when people extend themselves to Kannon.

They obviously know something is "off" with him due to his lack of language and physical ticks, so the fact that they have a big enough heart to overlook that and reach out to him is fabulous.

I would recommend talking to the child as if you were talking to ANY child.

No dumbing it down, no change of tone or pace...

If the child doesn't respond, which they probably won't, then just act as if it were a normal occurrence...no big deal.
Tell them how much you like their smile, their shirt...etc.
Then move on with your day.

Bottom line, talk TO them....not AT them.

Whether they make eye contact or not, they are listening.

In fact these kids are more in tune to other peoples emotions and actions MORE than most normal children.

They are very sensitive and in tune, unfortunately their bodies don't allow them to give out the normal physical cues one would expect from a child reacting to communication or attention.


Also, the parent of the Autistic child will most likely intervene on their child's behalf before you can even expect a reaction from the child.
I have seen some parents act very defensive and abrupt to people, and I get it...it is a defense mechanism developed out of the lack of public knowledge of the disorder. Don't take it personally if you get this reaction...no biggie.

Sometimes depending on the level of acceptance on the parents behalf the parent will react in a quick manner. They may remove the child and walk away, or they may just smile and brush the interaction off as it it never happened. OR they may inform you of the child's "condition" and at that point you may choose to engage the parent in small conversation or not.
Some parents enjoy educating people on their child, and you can ALWAYS use me as an "in".
Tell them you have a friend whose child has Autism, how interesting it has been to follow her adventures with the disorder, etc...etc...you can even give them the link to this blog if they ever need a good smile :)

Whatever reaction you receive, it is wonderful that you even tried to extend yourself to a family who is dealing with Autism.
It is a very isolating disease at times, and bottom line is that we are ALL human.
We all want to be accepted, loved, and to feel emotions through the kindness of others spirits and generosity.

peace:)

Tuesday, May 18, 2010

CRAZZZZY day...

It was Thursday, May 13th.
A day I will never forget.

I delivered a baby.
Yes.
With my own two hands.

Here is the story:
About 10:30 am I am standing in my kitchen starting to clean up for the day of therapists to arrive at the house.
Kyle and I are talking and all of a sudden we hear some screaming outside the house.
After about 15 seconds of this, we run outside and standing in our driveway is our neighbor with the most fearful look I have ever seen on a face.

neighbor: "I'm in labor and I'm going to have the baby NOW"
me: "NO you are not"...I grab my phone while escorting her back to her home and call 911.
kyle: "Should I drive her to the hospital?"
neighbor: "My water just broke, it's coming, please help me"
me: "Calm down, did you call 911? Just calm down we will help you"
neighbor: "Please help, the baby is coming..."
me: "Go lay down on your back, go lie down and I will be right there"

I think at this point I have run back and forth between our houses at least 3 times in sheer panic.
I got off the phone with 911, grabbed a bunch of towels and back to the neighbor whom had listened to me and laid down on her back in the entrance of the home.
I put a towel under her butt and prayed for the ambulance to somehow magically appear right then.

neighbor: "I want to push, the baby is coming I can feel it...I need to push"
me: "Please just hold tight, the paramedics are on their way"
neighbor: "It's coming...the baby's head is coming"
kyle: "Kary what do you want me to do?"
me: "Watch her kids, make sure they are o.k."

YES, she had two other kids who were in the car in the driveway screaming and crying...ages 3 and 1.5...
She was attempting to pack her car up to go to the hospital.
So, Kyle stood by the car trying to calm the kiddos and I braced myself for the next 3 minutes.

neighbor: "Please help, the baby is coming NOW"

SO, at this point there was not turning back...no time to think things out...action needed to happen...
I quickly removed her shoes and pants, and sure enough there was the baby's head sticking out...full head of hair and all.

NOW, I don't know how many of you have watched live births.
I saw one video while I was in birthing classes and that was more than enough for me.
Here I was now right in the "mix" of it all.
SO many beautiful colors of liquids and odors are everywhere...it truly is something I cannot accurately describe without making you throw up.

Anyways, as I see this baby's head sticking out I am wondering why in the hell the ambulance has not come yet.
So I am trying to calm her down, rubbing her leg telling her how great she is doing...
Then, the moment of truth came.

She looked at me with pure fear in her face and said "Why isn't the baby crying, I can't hear it"
I don't know if it was motherly instincts or pure gut reaction, but I immediately told her to "PUSH, Just push"...

2 pushes later a baby literally flew into my arms and into this world.
I stopped for a second to take it all in...just stood there with this little life in my hands...
I somehow knew to swipe its mouth of fluids and gave it a gentle pat on the back...and there was the cry...the first cry.
I turned the baby onto it's back, wiped it's tiny little head as well as I could, wrapped it in a towel and handed it over to momma.

me: "Congratulations it's a boy"...

About 1 minute later the firetruck pulled up and the paramedics.
I turned around and looked at Kyle standing in the driveway with my hands out dripping in "goo" and we just looked at each other in pure shock.
We had no words for what we just went through...

They took her away with a healthy baby boy in her arms, and that was that.

A day we will never forget.

peace:)

Tuesday, May 4, 2010

the power of creation...

It is 11pm, Kannon and Kalena have been asleep for 3 hours.
Some nights I will check on them before I go to sleep...just because I want to look at them in slumber.
They are so peaceful.
So silent.
So beautiful.

I can't help but stare at them...these beautifully perfect little people that I created.
I created.
I cared for...and they flourished.
It still amazes me at times how much life will fight for life.

Unless you have children, this might be hard to digest or fully comprehend.
Maybe not.
Maybe we can all look at someone or something and feel a sense of internal pride.
A sense of "holy shit I did that"...

It could be art.
It could be a huge mess.
It could be a child...
It could be MANY things.

In MY case, it is Kannon and Kalena.

My angels.
My flesh.
Sometimes, my mirror images.

If I did in fact bring Kannon into this world with Autism attached, then by god this is my choice.
This is my classroom of life...my homeroom.
THIS IS MY CREATION.

I created a beautiful, chaotic, frustrating, amazing, colorful creation of life.

I chose this.

I am an artist.

Kannon is here for a beautiful reason.

It is his time to be seen, heard, felt and thought about.

peace:)

Sunday, May 2, 2010

Pink Hello Kitty socks

One of the things I do love about Kannon is his flair for personal expression.
Whether Autism induced or not, he loves expressing himself.

He went through a phase of about 6 months where he would only wear princess dresses.
My son, who at the age of 3 already resembled a line backer for the Packers, loved princesses.
He had about 6 dresses that he would alternate between.
ALL of them pink, lace everywhere with tulle.
We would go out into public with them on.
Grocery shopping, Target, the mall,the park....EVERYWHERE.

Today when I picked the kids up from their dads house Kannon was wearing pink Hello Kitty socks, brown penny loafers(that he picked out earlier today), green camouflage shorts, and a shirt that was made to look like a tuxedo but is just a t shirt.
He also had his pink princess backpack stuffed full of animals, papers and barbies.

My boy....in all his beautiful misunderstood glory.
He is not confined to the social boundaries that most of us are.
He does not understand them.
He doesn't care.

He only knows what makes him happy.
He knows what lights up his soul.
He has enough courage and blissful ignorance to do what his soul feels.
He doesn't second guess anything...he dives in head first.
He chooses to make himself happy above everything else.

This is one thing I LOVE about Autism.

peace.

Saturday, May 1, 2010

My best friend reminded me the other day of something I wanted to share.

I need to allow myself to feel the bad things that come along with Autism and Kannon.
I need to let myself really feel everything.

I tend to always try to make the best of everything.
To make excuses for things/people in my life that are misunderstood.
I want people to feel peace with everything.
To accept things.

The truth is though that not everyone will accept everything.
I cannot change peoples perspectives of their own truths and beliefs.
That is not my purpose or desire.

I DO want people to better understand Autism.
I want them to feel for this disorder...to feel all the emotions involved even if they are not involved.
I want people to laugh, cry and take a step back and think.
To do this I must admit everything about Autism.
No sugar coating.

This is hard for me because I have so much pain in my soul for Kannon who is misunderstood EVERY SINGLE DAY.
Every moment of his precious life he is misunderstood.
Even by those who are trying to help him recover from all of this...I still see it in their faces.
Therefore, I try to make light of things....I try to make things more beautiful than they may be.
It is all perspective.

Autism sucks.
It really does.
It is the most complex situation one can be presented with, given or forced upon that will tear out every preconceived notion or belief you may have had about behaviors, emotions or the human soul.
It gives you so much, yet takes away twice as much.
It touches your soul in the smallest pockets that have never been opened or used.
Then, it uses them and leaves them damaged, never again to be be salvaged.

Then, at times it brings you to your knees.
It literally gets to the deepest part of your being and makes a wall that forces every single tear/cry out of you until you no longer can cry...until you are out of liquid tears.
Yet, inside you are still crying.

The hardest thing about Autism is that there is no black and white.
No clear cut boundaries or answers to ANYTHING.
This is why I can only hope people will find compassion and patience for this disorder that is and will take over a huge part of our society.
It needs love.
It needs patience.
It needs people to fight for it and with it.

I still honestly feel Kannon is my gift.
I will never regret this journey nor understand why I choose this for my life.
I hope I come out of it all smiling, yet crying.
Strong, yet weak from the battle....soft, yet hard from experience.

peace:)

Saturday, April 24, 2010

the little things...

They really are what make day to day life.
Kannon had his training wheels removed today...for the second time...whatever, he is so proud.
I am so proud.
Kalena got some sassy new shoes with rhinestones and silver straps...I've never seen her run around so much and stop to look down at her feet in pride.
I got 7 hours of sleep last night, I feel great.
Kyle has been playing with Kalena all morning and they both are acting like 3 year old girls...screaming, laughing, fighting...it's hilarious.

These little things are what get me through each day.
I can't look at the big picture all the time or I would go crazy.
I can't think about the "what ifs" or the list of worries I have etched into my heart.

I love little things.

Enjoy yours today:)

peace.

Sunday, April 11, 2010

When to surrender...

Whether I should claim submission, or just surrender to all of this is heavy on my heart today.

Everyday is a "fight" of sorts living with Autism.
Fighting with patience, society, science...
Sadly, too, I fight with Kannon.

We don't duke it out by any means, however he is constantly testing me.
I am always having to redirect him, and 9 times out of 10 he hates me for that.

Yesterday we were outside and he was riding his bike.
I counted, and in the span of one minute Kannon said "look please"..."mommy"..."look"
47 times.
That pretty much means almost every second he was repeating these phrases over and over and over and over again.
Most of the time I am already looking at him, constantly watching him....something that has become a necessary thing for me, mostly for his own protection.
His brain just could not turn itself off though, even when I would try to redirect his verbal ticks, he would go right back to them within a split second.
When I did try to redirect him he would get mad at me, like I was trying to ruin his good moment.

Sometimes I feel so bad that after 10 minutes of this my nerves are literally burning under my skin.
I want to scream sometimes...just shake it out of him.
My heart pounds so hard sometimes just to keep my calm.
I am only human.
It does get annoying.
There is NEVER silence in our home....never....if you can imagine that.
Yet, I KNOW the poor baby cannot help it...he can't differentiate human social cues.


Kannon is always testing me.
Autism is always testing me.
The egocentric nature of this disorder is the ultimate test of human will.
I feel sometimes his soul wants to fight with mine.
What the purpose of it all is, I am trying to delicately figure out.
To surrender to this all would mean it is of my OWN WILL.
Should my will be stronger than my soul, or is it all the same?

I am very submissive to Kannon and to his needs.
I want to be.
I am his mother by my own will.
I love him.
I just hope I have enough fight left in me to last this lifetime.

peace.

Saturday, April 3, 2010

KOA center of hope...

I will write these in segments, as this is a life project of mine.
I want to open a center, a place that is built from love, hope and experience.
I want to utilize my design background and my experience with Autism to build a center that people can go to and spend the day, or an hour and walk out feeling better about life.
A place for support, and a place for education and resources.

My inspiration: Kannon and my father
My concept: A wishing well
My vision: A building built around a huge "wishing well" integrating the indoors/outdoors, gardens, play areas, therapy center and library.
My goal: To educate, inspire and instill hope within the soul.


Imagine the sound of nature around you...water, wind, trees rustling, sun shining...
You are in a beautiful roof top garden surrounded by the sounds of children, laughter, and in the center of it all there is a beautiful wishing well of sorts...it may look like a pond to some, and to others maybe a large calm pool of water.
You hold on your hand a small pebble/marble that is giving to you as a gift for visiting the center of hope...it is a symbol of anything your soul wants it to become.
You use it as your wish token, you can throw it into the well as a wish for yourself, for someone else, or simply as a show of support for the greater cause.
You can wish for whatever you want...as with "wishing wells" they can be a magical symbol for the soul.
They carry so much meaning to me, to my soul. I love how simple they are in concept, and how powerful they really can be if you allow the magic in.

Then picture being inside of this building...you are looking at a large aquarium like sculpture that is floor to ceiling, and you have no idea where the top of it is...you can see the sun light shining through to the bottom though.
You see a pebble floating down through the tank...slowly placing itself wherever it falls.

THIS is my goal.
Once someone visits this place of love, hope, support they will KNOW they are not alone.
They will KNOW that someone else cares and hopes for better things like they do.

By watching this pebble fall into the well, they know someone up top in the gardens above threw it into the wishing well... hoping, wishing, for wonderful things.
I know if I was there I would just stand at the bottom of the well and watch all the pebbles fall into the well and just cry....it would mean what I wanted validation for for so many years now.


So, this is part 1 of many entries to come in regards to a future goal I have.
A place I have dreamt about for years and have built in my mind.
A place that would encompass years of tears, creativity and soul searching.
A place that all humans can relate to whether they know Autism or not.

The KOA center of hope.

peace:)

Friday, March 26, 2010

I choose love...and anger...and happiness...for they are all me.

Many of you who have been awesome enough to read my blog have sent me many messages of praise and love.
Thank you :)

I want to point out however, where I am today has been a very long time coming and a journey I am still fighting every day.
I love you all though for the support, and I really hope reading my "blah blah blahs" are helping....helping your soul:)

My mother believes that our souls are everlasting....that it is the driver of our physical lives and that we choose our life here on earth before we "arrive".
My mom is one of the kindest, strongest and beautiful souls I have ever come across.
She cries every time we talk on the phone about Kannon.
She feels so much for the little man and for his daily struggles.
She also tells me that I have chosen this life I am living.
That my soul wanted to experience all that I am going through.
She says that Kannon and I chose each other before we became physical entities....

I believe that we do choose our lives.
This is how I accept what happens to me and what is "thrown" my direction.
I CHOSE to learn about beautiful struggles and tough days by choosing my family and friends.
Life is all about choices...ones that we even may have made before we were born.
Whether this philosophy of life is true or not, it still has a beautiful lesson in it.

Beauty, raw emotion, anger, love, trust, hope....
These all come from experience.
They all drive us to become better souls.
These emotions cannot come at face value and must want to be shared or put out there by our own choice.

Sometimes people think too literally.
Sometimes emotions are hindering and can become psychological resources for corrective action(s).


Then, sometimes you fall in love with something or someone and nothing else really matters.

peace :)

Thursday, March 18, 2010

What they don't tell you about Autism

Pretty much everything!
For those of you out there who don't know Autism, or are just learning about it...
Here are things that I have learned and wanted to share.
These can be great tools to identify Autism within a child, or how to become passionate towards children with Autism.

1. Repeat, Repeat, Repeat after me.
Kannon says the same thing over and over and over again...whether you respond or not.
It is like a broken record, and it can test your patience to the max. He will ask me 100 times a day for the same thing...and usually I have to repeat my answer at least 70 times to him, or else it would be 200 times he would ask.
Or if he is fixated on a certain movie he will repeat lines from it over and over again for no reason.

2. Physical "ticks"
These are the hand flapping, head hitting, tip toeing things.
Kannon flaps his hands a lot. When he's excited, when he's anxious, when it's dark out...
It gives him sensory input that is somehow necessary to him.
Almost like an itch that has to be itched...he has to do these physical ticks to get him through the day.
It can look strange, and it does attract attention, usually strange looks...
These physical ticks are usually one of the first things that indicate to other people something is "different" about my child.

3. Tantrums
These can range from mild to OBSCENE.
They can last 1 minute to 30 minutes.
They can come out of nowhere and be triggered by the smallest of things.
When out in public Kannon will be set off by certain things, noises, light conditions, visual scenes.
Sometimes he will just stop and stare or shut his eyes, cover his ears, move on...
Other times it is almost as though it physically hurts him to have seen or heard these things.
He reacts in a physical manner, and on comes the "tantrums".
These tantrums can be very loud and very embarrassing.
I have learned that I cannot control these.
I have learned that other people are going to look at Kannon and look at me like I am a bad mother for letting my child behave that way.
I have learned to say "oh well"...
It is all part of the deal.

4. Hoarding/Perseverations
Kannon specifically has both of these issues.
He LOVES to hoard things...aka collect, stockpile, stash...
It is like he is preparing for a natural disaster. He HAS to have a stash of goods.
He has bags and bags of things that he is very attached to for no reason.
He stuffs the bags full of random toys, trash, paper, etc.
Then at night, he has to have these bags right next to him...almost like a security blanket.
He panics without his "stuff".
He looks like a bag lady...it's very quirky.
I have found leaves, sticks, rocks in my bed after our walks. He collects things and leaves them as treasures around the house.
It gets interesting for sure :)

Perseverations are the WORST.
This is when the child almost obsesses about something or a specific object.
Kannon switches his obsessions about every month or so.
His perseverations consume him.
Right now it is his bike.
He talks about it all day, asks for it every 20 minutes and will not let up about it.
It absolutely tests every fiber in my body for patience.
However, I can't help but feel so bad for him. He really has no control over this.
He can't help that he loves this certain thing so much and his brain cannot switch it off.
The worst was when he was obsessed with belly buttons.
It made going out in public impossible, he wanted to raise up every ones shirts to see their belly buttons.

5. Texture aversions
A lot of these kiddos have aversions or sensitivity to textures.
ALL kinds of textures....food, fabrics, environment, etc.
Kannon specifically has food issues.
If the texture bothers him, he will spit it out even if it's chocolate.
He prefers to wear long sleeve shirts. He likes his arms to be covered. His therapists worked with him for months on being flexible about wearing short sleeves.
He also prefers no socks...we had to work on getting him to wear socks with his shoes.
Little things like this make every day life a little more difficult at times.

6. Autism has no "look"
This is what I get asked the most....or the most looks of confusion about.
On my website I specifically put a page up where I want people to see pictures of kids with Autism...because bottom line is, they don't look any different from any other kid.
This may sound weird, but people think Autistic kids will look a certain way, like a child with Down Syndrome does.
But they don't.
This is sometimes why Autism is difficult on the parent.
To the public eye your child looks normal yet is acting "different"...."crazy"...etc.
People are confused about what they are seeing.
They expect your child to look different since they act different.
Not the case.

7. Autism is a gift
It really is.
It is challenging, overwhelming, frustrating, and confusing.
But it is also magical, humorous, fascinating and full of learning opportunities both emotional and logical.
It shows me just how powerful the human mind/brain is.
Complex and mysterious.
It is something that is given to you as a parent...without choice or knowledge, like a gift.
It is something that you must accept and open with a happy heart.

I often say to myself that "I won the Autism lottery"...
Meaning, 1 out of 70 boys are diagnosed with Autism.
I got 1 of those 70...
I was somehow chosen by fate, or genetics, or something beyond this world...

How lucky I truly am :)

peace.

Friday, March 12, 2010

I knew I became a designer for a reason...

I graduated in 2006 with my bachelor degree in Interior Architecture, AKA Interior Design.
I LOVED every second of school.
It felt right for the first time in my life to be sitting in a classroom.
Too bad 2 months into my 3 year schedule I popped up being pregnant with my first child (Kannon) :)
I never make things easy for myself, even when I don't intentionally do it.
So I went through most of my schooling pregnant.
I was 6 months pregnant with Kalena, my daughter, when I graduated...
I gave my Valedictorian speech knocked up on a stage in front of hundreds, hmmm, I can only imagine what was going through some people's heads.
Whatever...like I have said before, I never take the easy route in life, and quite frankly I find it fantastic to challenge people's perspectives on how things "should" be.

SO, yes, I did it.
I graduated at the top of my class 6 months pregnant with another child at home.
I had many long nights...many long nights.
I think I got so used to NOT sleeping that when Kalena arrived, I was fine with the no sleep schedule.
Maybe that is also why I got postpartum depression after I had Kalena too.
Bottom line, I worked my tail off for that degree, and I loved every minute of it!

That degree was the only one that made sense to me.
I am ridiculous about how my home looks.
NOW, don't think this means I have only the finest furnishings in my home because I DON'T.
In fact Target is one of my favorite places to buy things for my house.
I am just very particular about how my furniture is arranged, how many pillows are fluffed on the couch, and how many blankets I can get on one bed...color coordinated of course.
I love my home.
I love feeling cozy and safe and aesthetically balanced within my environment.
I love colors and textures and how they make me feel.
Considering I spend 90% of my life in my home damnit it's going to appeal to me.

All this being said, however, I don't mind chaos in my home.
I like laughter, ball playing, crayons on the floor, etc.
When you have kids you kind of have to get used to this decor....you don't have a choice unless you are picking up every 10 minutes.

So, I think my talents have been completely utilized to their full potential.
I think my degree was worth every late sleepless night.
I am constantly redecorating due to sharpie marks on the wall and carpet...the furniture must be arranged to hide them all.
I change pillows on my couch every season due to stains, as well as my curtains...but no one else has to know that:)
It just appears as I care enough to change the color scheme of my home every single season.
I also know how to make a room appear as it does not inhabit children....baskets, baskets, and baskets.
They hold everything, you can throw everything in them and they neatly tuck away into nice clean looking shelves.
They hide any evidence of Dora the Explorer books, plastic animals and other child paraphernalia.
Brilliant.
The fact that Kannon loves to draw pictures of everything, all of my drawing and perspective classes have come in handy. Princesses in perspective, mermaids and pirates in a room with lush surroundings....um hmm.
I also have all the markers and colored pencils a child could dream of.

Who needs clients in Manhattan Beach?
I have my own world of Interior decorating going on every single day...

Fabulous.

peace :)

Tuesday, March 9, 2010

Diseases that start with "A"

Specifically Autism and Alzheimer's.
I have dealt with both, and hopefully will never have to deal with the latter again.

The similarities between the two personally astound me sometimes. I find myself having deja vu every day with Kannon. I find that sometimes it helps me in grieving my father, and others it just makes the hurt deeper.

The blank looks.
The confusion, hurt, and emotional pain I see him go through.
The inability to communicate your feelings on a human level.
The loss of physical and emotional survival tools.
The constant judgement by others and being misunderstood daily.
Lack of friends, social interactions, and shunning of society.
Autism and Alzheimer's.

I don't believe I will ever find true peace with my fathers passing.
His suffering was unimaginable, yet I witnessed some of it firsthand, and his last years on earth were just plain pathetic.
The hardest part for me to accept through all his battles with Alzheimer's was the loss of his dignity. I could never get over that. To see my childhood hero loose it all...that pain will stay with me always.
He was such a strong man in his early years. He loved life, family, and had an energy about him that was contagious.
My house was always filled with friends or visitors...good thing my mother was a great cook, as she always was in the kitchen feeding people.
I loved the hustle and bustle of it all.
I loved hearing laughter and chatter as a constant background noise.
I loved that people seemed to want to be with our family and that they found our home a place they could put their feet up and relax.

Funny how quickly that changed after my father got sick.
People didn't come around as much.
No more pop ins or drop bys.
No more chatter and laughter filling our home.

I know it broke my dads heart.
I saw it all over his face every day while he would sit in his chair looking out our back window to the mountains. I never saw him cry, but I knew he was heartbroken.
After all his years of entertaining people and laughing....he was now silent.
Even though he was sick, he still had many moments of clarity where he knew exactly what was going on...even how sick he really was. I think that simple realization alone pulled him so far into himself that Alzheimer's took him.
And he never came back.
Our home was never the same, and he was gone...inside himself somewhere.
I always thought he was back to the good times in his head...back to when our home was filled with people and parties and food...back to the laughter.
I hope so.


Having a child with Autism can feel the same way at times.
It is never easy to just jump in the car and go do something...anything.
You can't just drop by people's homes to say hi without constant worry your child is going to trash the place or get into something they shouldn't.
People don't tend to really embrace your child either.
They don't just get in there and play with them....they don't swing by your house to chat or put their feet up and relax.
Who can blame them though?
It is hard to interact with an Autistic child if you are not used to them...and god knows no one is "used to them".
I'm a mother who deals with it everyday and I still find myself caught off guard sometimes when I am around other kids with Autism. Autism will do that to you...it never is consistent.
Point being, it is much more difficult to have an "open" home when there is a child like mine in it.
I want more than anything to have people always here...always finding comfort and laughter here. I know it is possible. We have friends who are amazing with Kannon and who genuinely enjoy his company...but it takes patience, and it is not for everybody.
I do consider myself and Kannon lucky that we do have some amazing people in our lives who love him, and find the laughter within him and themselves.

Autism I have found, just like Alzheimer's, weeds out certain people in your life.
Or perhaps it just forces you to live a certain lifestyle that may not be as social, open, or free as one would prefer.
It tends to isolate you.
I hate that.
This is one issue I will fight.
I refuse to believe laughter cannot be part of this all...it can.
I laugh every day with Kannon, and at myself.

I hope my dad is now laughing too...at Kannon and I.
Looking in on our daily adventures of life.
I hope he is proud of me and of Kannon.
I hope he knows what he went through was NOT for nothing...
It made me a better person.
A stronger person.
One who now has some of the emotional tools needed to raise Kannon.
For without my fathers suffering and journey, I would not be able to do the things I do every day for Kannon out of love...out of respect...out of hope...

Just no more "A" diseases in this lifetime please...
I'm good.

peace :)

Wednesday, March 3, 2010

Discovery of the human body...

Oh what a beautiful time in life...when body parts are fascinating.
They are just that too....not "fat" or "stretch marked" or "too small"....blah blah blah.

Kannon discovered his boy tool (aka penis ) when he was about 3ish...
I remember it vividly.
The UPS man is at our door when I see him all of a sudden smirk while looking over my shoulder.
I look back at Kannon who has his pants off and is swaggering about showing his tool off to the UPS guy. Then his tool not being used to all the fresh air decided to go Pee Pee right then and there. Good stuff, but it gets better....
Then about 10 minutes later after I had managed to wrestle some clothes on him I came out of the kitchen to find Kannon with the blinds pulled up at the front window of our house naked with ALL his glory smashed up against the window doing some very advanced hip movements...
Good thing there just happened to be some nice elderly folks walking their dog out front enjoying the show....at least they found it amusing and didn't call social services for child indecency.

Kannon has never done anything half ass...he goes ALL out in a big way.

He put his boy tool on the sidelines for a bit, but has recently realized its presence once again in a big way.
The other day while I was dressing him he looked down and realized his guy was "hiding" in it's shell so to speak...
He goes "mommy it's gone"and freaked out.
He grabbed it immediately and was desperately trying to get the turtle out of its shell...
Good thing that only took about .7 seconds. Some things just don't change for men do they?!
Anyways, he was SO relieved that his boy tool had not suddenly disappeared.
So relieved that he has to do hourly checks on it...
Full on inspections of his junk.
Pants off, pants down and pat down of the concerned area.
Mind you, in our home this is fine...but at the grocery store its not as cute.

He decided today that he needed to put some hand sanitizer on it.
After hearing a shriek from the bathroom I found him with a very surprised look of anguish on his face...but at least he was clean :)
He also wonders if putting baby powder on it will somehow enhance it...like it needs dressing or something.
He is also very skeptical about the fact that his sister does not have the same tools as he does.
He realized this the other day while they were in the bathtub together.
He wasn't sure what to do about it, so he just pointed at her, looked at me and said "why"?
I really couldn't figure out an answer to such a big question...the best I could come up with that he would understand was "because mommy made her that way".
He didn't seem convinced.
In fact I got a bit of a glare...like I was hiding something.

Maybe this is too long of a rant about this topic, but it cracks me up to see how wonderfully new this is to him...even if it is for the second time.
He is truly fascinated with it and is really concerned about "it".
I love when he shows signs of somewhat normal behavior in regards to child development...
He is showing emotion, reaction, and patience that sometimes escapes him in other situations.

Even if it is quirky, and sometimes awkward, I will continue to let Kannon figure this situation out all on his own.
I know he will come to a conclusion someday about the matter...appropriately so...hopefully...

peace:)

Saturday, February 27, 2010

I have asked myself many times if Kannon would ever grow up and have friends, a girlfriend, play sports, be able to attend a regular school...
There have been moments when I felt that I would be a success as a mother if I raised my kids into contributing members of society.
There was a time when I was at the park with Kannon and another mother and I were chatting as Kannon and her son ran around together. She seemed interested in Autism and had many questions, which I was happy to answer.
Then she asked me if it bothered me that Kannon may never become a contributing member of society....
I was speechless.

What exactly constitutes someone as a "contributing member of society"?
Where and why did this phrase take on so much meaning to people?
There are so many takes on this one...where to start...
Do we first separate by gender?
Do we separate into age groups?
I would think that a "member" would include ANY and EVERY human being....

Ultimately does a person need to physically contribute something before they can earn this title?

My opinion is that we all should strive to contribute something to society.
I don't think it matters how big your audience or receiving group may be...
Feeding the homeless or volunteering is a wonderful idea.
Picking up trash on the beach while taking a walk is also nice.
Going to work every single day to do the responsible thing for yourself or your family, this is what most folks do every single day...I think it should be counted as one of the top honors.
Work can consist of pretty much everything and anything, but it really is what holds societies together...it is what keeps people moving forward.

I would imagine it being difficult to work your entire life and forgetting why you did it to begin with.
I know a lot of people work because obviously they have to...
We should all work.
Again, I think "work" could be many different things....I don't judge in that manner.
We should also be reminded why we do it everyday, and know that we are in some way making this world go round and round with our efforts.

What about kids though?
How can they be judged or considered as contributing members of society?
Just because they don't have a job that pays money doesn't mean they aren't doing a bigger job.
Kids add joy to our lives that cannot be bought or reproduced.
They also bring tears, frustration and levels of insanity we never knew we had in us.
All that being said, they teach us more about ourselves than we ever knew possible and they don't judge us when we fail.
They let us act out and when we are done, they still want to be our biggest fan.
They love spending time with us and cuddling with us.
They laugh every day and instinctively know they are something special to this world.
They really give us the opportunity to show ourselves what we are made of.
How patient we can be...
How much love we have in us...
How creative we are...
How unselfish we can or cannot be.
ALL of it comes back to us. We are tested every single day and our kids give us opportunity and motive to make our own choices....based on what we are really made of.

If that isn't contributing to society than I don't know what is.
We are all a society that needs each other and can learn from the little things every single day if we allow it.

If we have the patience for it.
If we really feel a desire for the bigger picture...
It can teach us so much and help us not just "get by" every day, but live in every moment.

The beautiful part about kids is that they don't realize they are doing a "job".
Innocence is what makes kids fantastic teachers...the lessons they provide for us every day.
Whether good ones or challenging, these are the lessons that we learn the most about ourselves.

peace:)

Friday, February 26, 2010

Insanity?

http://www.nytimes.com/2010/02/06/nyregion/06hotel.html

This is an article I wanted to share.

I always wondered if I had more money if raising a child with Autism would be "easier".
Meaning, I would be able to pay for any therapy services, hire a part time nanny to provide respite for myself, and heck maybe even a cleaning service just for my sanity.

I know I am not the only mother out there who does everything...
Cooking, cleaning, full time child watching, etc.
And who does it on a budget.
No extra money for clothes, restaurants or fun things...just enough to survive and comfortably survive.
It is obviously 3 jobs wrapped into one without the pay scale.

After reading about this incident that happened it set in how Autism truly requires a special group of people to deal with it.
This mother who had NO financial worries found the only way to deal with her Autistic son was to murder him. Murder him.
Feeding him an overdose of prescription meds, and watching him die.
Apparently now her lawyer is trying to take the insanity route...
OF COURSE she was insane...she was a mother of a child with Autism...it can do that to you.
BUT...you DO NOT turn yourself so upside down and inside out that you rationalize MURDER.
And apparently all the money in the world makes no difference in easing the responsibilities of raising a child with Autism...at least to some people.

This is beyond me.
This is beyond sad, tragic, or explainable.
This is why we need to raise awareness, understanding and support for this disorder.

This disorder is in obvious need of funding, but it goes beyond that.
It needs to not have stigmas or labels attached to it.
It has to be understood on a human level.
We need to embrace it and know that we are not alone in this...

We need people to turn to, or internal peace to go to when we feel overwhelmed.
We need to know it is all for a reason...bigger than us, but for a reason.

And until we find a "reason" we must share, support and love what we already have.
Accept it.
Find peace with it.

KNOW Autism and that it can be beautiful...we can raise these kids into loving, contributing members of family and society.

peace

Tuesday, February 23, 2010

GUILT...and sweatpants.

If anyone out there has advice on how to deal with this issue...feedback please.

How does one with children really feel good about having alone or selfish time.
Please.
When my kids are running around causing absolute chaos I want to put them out on the front porch with a "Free to good home" sign around their necks.
YET...when I do have a day to myself I feel SO guilty I can barley manage a moment of pure relaxation.
Really?
This is what my life has come to?

Why did my mother not warn me about this new life that you enter into when you have a child.
I hear your life will never be the same...but good lord.

I can't even have an hour to go grocery shopping without having guilt overcome me while in the frozen food aisle.
I feel bad for "inconveniencing" someone else to watch my kids for an hour so I can put food on the table.
Good thing I don't really indulge in something like shopping or getting a pedicure, because i know someone would get hurt in the process....I would be a mess.

I will SADLY admit I occasionally watch the Housewives of OC on Bravo.
It makes me want to vomit.
The fact that this pool of women represent the geographic area I reside in troubles me.
They are terrible examples....of so many things.
Anyways, point being there are real people who live here that really do have genuine life stories to be told.
Sadly, for television purposes our stories would never make the cut.
We aren't glamorous enough.

Real motherhood is NOT glamorous in any way, shape, or form.
Poop...Pee...Diapers...Tantrums...No money for daycare OR nannies...No pedicures every week...
NO time for make up or hair......you get the point.
Maybe it could be glamorous?
Maybe I am the disillusioned one here....I am open for that possibility.

I wish I could have these things sometimes...but back to my original point...I would feel some guilt with it all.
Why?
I can watch others in envy and happiness.
But when my ass is in that chair, I run.
I run back home to where my kids are.
To where the poop and pee and tantrums are.
To the land of SWEATPANTS.
It is my heaven.

Maybe I need to work harder at learning to relax.
Maybe I need a sedative.
Maybe I need more wine.
Maybe I need to do my hair and makeup before I leave the house?

Maybe I just really care about my kids more than I care about myself.
I know the cliche of "you have to take of yourself to be worth anything to others"
BUT I don't think this applied to pedicures, manicures, etc.
Maybe I need to change my point of view on this one...I am open to that if logical.
Don't get me wrong.
I have had a pedicure and manicure since having kids....5 times in 6 years to be exact.
It just has not been my priority.

I don't see anything wrong with that.
I have to live with it...no one else.
Or should I take advantage of my "youth"
God knows this skin and "firmness" will only last me a few more years.
Maybe I will go out and get a mani and pedi.
AND even some new 4" heels to strut around in, even if it is only in my own home.
Kannon would snatch them off my feet though....those who know him know how much he adores women's shoes, and dresses. One of my favorite pictures of him is him mid air dancing around the living room in a pink glittered princess dress with a tiara on his head in all his glory.
It will be framed when he is grown. His friends and hopefully future girlfriend will all know this picture, and LOVE it.
God I hope he does has friends and a girlfriend someday....
Anyways...
He loves women shoes.
So, I would loose that battle too.

Maybe a nice dress?
But where would I wear it?
To the playground...or to my hourly outing to the grocery store?!
YES! They should have happy hour at the grocery store.
A mixer perhaps.

O.k.
I get it now.
Thanks for listening to my brain sort it all out.

I will go to the grocery store in my new heels(before Kannon steals them), in my new dress, and strut my butt up and down the aisles hoping to gain some sort of self fulfillment while holding back my neurosis about being away from my children while someone else watches them and hoping they have not burned the house down...oh yeah baby.
I will be one hot mess.

Some of you out there SO get this...so this ramble is for you:)

Look out grocery shoppers, here I come.
And most likely I will be in sweatpants...but cute ones.

peace:)
I have always had a worrisome personality.
One of my earliest memories as a kid is when my mom dropped me off at the neighbors house so she could go grocery shopping. I was a wreck....I thought she was never coming back and all I could do was sit by the front window looking out at my driveway waiting for her to come home.
She did come home. I don't think she ever left me at the neighbors again...what a good mom :)
I would also worry about our dogs, wondering if at any minute they were going to drop dead or get run over by a car. Turns out my childhood dog did in fact get run over by a car...so that didn't help my worrying at all.
I started to believe that all my feelings of doom and worry would eventually come true.

I never thought for a second that I would have had a child with Autism.
Never worried about it while I was pregnant.
All I thought about was what he was going to look like and if he would have all his fingers and toes...stuff like that.
So I guess I was wrong.
Things will just happen in life whether you worry about them or not.

I will say that since having Kannon my neurotic behaviors have been amplified.
I worry way more than I ever used to.
I am paranoid....I wonder what people are thinking, why they are thinking it...it's annoying.
I worry about Kannon running into the street.
I worry that when we are in the grocery store I will turn my back for a second and he will run away, out the doors into the parking lot...
I worry that while I am in the bathroom for 1 minute he is climbing on the kitchen counters and getting into trouble...
I worry.

I hate that I am paranoid.
I hate that people always stare at Kannon and I when we go out in public.
Maybe it is just in my head.
I just know I have been approached one too many times with ridiculous questions.
I have felt the glares while out in public when Kannon was acting out.
For awhile it made me feel very insecure.
I would think complete strangers were just judging me.
Like they had nothing better to do with their time than to look at me with a critical eye.
Like they knew me...who I was inside and how much I was hurting.
Maybe some of them were judging me, as a mother...
When I would lie awake at night this would keep me up. It would eat at me.

Sounds so ridiculous, I know.
This is how isolated and alone I felt for awhile though.
I can understand why some people completely go inside themselves.
It sucks.

I know better now.
I understand that my insecurities were just that.
My own issues that I had to deal with.
I was projecting my paranoia onto others....we all know it's easier to put things off on other people than to look at yourself in the mirror and find fault.
I had to really admit fault, look at things objectively...find acceptance for myself.
Know that I was honestly doing the best I could with what I had.
I still work on this every single day.
I still work on improving my insides so I have more to work with...

Ultimately we have to let what we think people are saying about us when we aren't there go.
We have to have faith in our own being that we are good people, and that the people in our life really love and accept us.
But first we have to love our own life....own it, make no excuses for ourselves.
If other people cannot understand why we do things they way we do, that's fine.
We need to own how we live our own lives...at least I have had to for myself.

We can all learn so much from watching other people live their lives.
Not by judging them either...really just embracing how they make choices and how they find grace within every day.
To trust that everyone in your life will come back to you....sometimes you have to trust more than you are comfortable with...but they will come back if they love you, even if they are only gone for a few hours, or days.

It really is wonderful when you can trust not only yourself, but everyone in your life.
To allow people to love you, and to know that they accept you.

I am working on letting go of my insecurities.
Changing a behavior is one of the hardest things to do...even watching Kannon every day try to change certain behaviors is grueling.
To change the way we are wired is a huge job.
It's a great challenge though...I have learned to embrace the way I feel when my heart feels like it is being tugged, ripped, squashed, warm, tingly...

It is great to feel alive.

peace:)