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, October 19, 2011

And you learn...

Goodbyes are never easy.
Whether it's after dropping a friend off at the airport after a visit, loosing your best friend, ending a relationship, or even saying goodbye to a loved one after they have passed away...or some of the above combined.

I have learned really well over the past years how to say goodbye.
I feel as if I have said goodbye to some of the most important people in my life.
The power of goodbye is life changing.
You are never ready for it and when the time comes, there is instant pain...your heart just knows...it knows what is going on.

I do believe that saying goodbye is a gift.
Nothing is ever guaranteed in life...no one is ever guaranteed to always be in our lives.
Tomorrow could fall apart right in front of your eyes...that is why today is so important.
Saying goodbye is the souls right in letting go.
Letting go of your physical attachment to someone/thing.
But the emotional attachment tends to linger...that is what makes us human.

Just because I say goodbye doesn't mean I will forget.
It doesn't mean things will magically go away...memories...feelings...voids.
That is my job.
After saying goodbye I must learn to accept it all.
I must know that in life there are no guarantees...and that I was lucky to ever have whatever it was, or whoever it was in my life at all.

I must learn from my goodbyes.
With my head up, and my heart ready to heal.
It is the only way to move forward.

The fine line of physical control and emotional control is one that humans have a very hard time with.

"Love doesn't mean leaning, and company doesn't always mean security"

"After awhile you learn the subtle difference between holding a hand and chaining a soul"

I must learn to let go of my children...let them be.
Allow them to experience their lives through their own eyes.
Say goodbye to my hold on them as a mother...let them grow...let them find out in their way.

I must continue to allow the positive grace of life to flow through me without resistance.
I must know that because I allow things in my life I must experience them to fully understand them.

I will continue to feel blessed for those who are in my life today, for tomorrow may be a different story...
and when the time comes to say goodbye, I will do so with dignity, love, and the knowledge that our experience together is done...for now.

I see the beauty in saying goodbye.
Even through the pain, I can emotionally let go of things out of my control.

"And you learn that you really can endure, you really are strong, and you really do have worth..."

With every goodbye, you learn.

For anyone who has had to say goodbye, I wish you peace in your new journey.

peace :)

Friday, October 14, 2011

Just to clarify my "fluffy" ness...

Without beating around the bush I was sent an email in regards to my blog that was, well not the nicest feedback one could hope for :)

I wanted to share my insight to the person(s) e mail mostly because I think it is worth responding to in some manner.

Without disclosing any specifics, to sum up their thoughts on me and my blog, they accused me of being "too excited" and "fluffy" in my ways of dealing with having a son with Autism.
They felt I was "unrealistic" in my views and of how I choose to see the positive in all of this, because according to them there is "nothing fun" or "pretty" about Autism.
So, they basically felt I should stop feeding people a bunch of bull**** and be more honest with myself and with my writings...

I will say with complete honesty that if I had read this e mail 4 years ago I probably would have let it somehow affect me and my thoughts.
I will say with complete assurance that today it had NO affect on me what so ever.
I can appreciate every one's view on Autism, especially if they have personal experience with it.
I can respect that we all have our opinions and the right to express them.
What I cannot do is let any of these things change my course and affect my outlook on life.

I understand that I may not appeal to everyone...I understand that people choose different ways of dealing with Autism.
Some may find my writings too "dreamy" or silly because of the little things I focus on.
We all do the best we can.
We all make our own choices.
BUT...just maybe it isn't a bad thing to read the insight of other people, especially when you can't see their perspective...

Different perspectives are wonderful...they are what make us all delicately human.

And you know the simple fact is that I do have terrible days with Autism.
I still have nights that go without sleep...that go into days...
I still have to deal with the tantrums, biting, hitting, SCREAMING, etc...
I even have days that I never leave the house out of complete exhaustion.

So, I understand why someone would say Autism is not fun or pretty or anything worth writing "happy" things about...
I can understand it.
But I will not live it.

That is why I choose to write about the moments or experiences I have that I am more than Autism.
Moments that quite frankly are nothing short of magical.
I still choose to learn from my life.
I know that at the end of the day all I have is my thoughts...actions...myself.

I must hold myself accountable for my actions and thoughts...because what other people think, or might think they know about me doesn't matter.
Self pity is never beneficial.
Neither is projecting your insecurities upon others.

In the end, all that matters is what you do.
How you choose to live out the moments of your life.
And I feel that any action or word spoken out of love can never be wrong...maybe misunderstood, but never wrong if it comes from love.

I choose to be more than Autism on most days...not all of them...
So do a lot of people.

Autism is not what defines me, but what has made me stronger.
I live and speak from the love of my son, not out of defense.
How can I not see the beauty in that?


Friday, October 7, 2011

the inevitability of it all

I was at a HOA meeting a few weeks ago and at the meeting was my neighbor, a man of about 45 who has Autism.
I have stopped and spoke with his mother before as she recognized the all too familiarity of ticks she saw in Kannon.
As I mentioned in an earlier blog note that conversation was mind bending for me...

Anyways, as I sat in the HOA meeting all I could do was watch my neighbor.
He had brought along a clipboard and on it were pages of crossword puzzles ripped out that he was feverishly working on throughout the 1 hour meeting.
If you didn't know any better you would not even know something was "different" about him.
That is until he lets out one of his loud grunts and gets up out of his chair for no reason, walks across the room and finds a new chair...I watched as most people in the room raised their eyebrows in confusion.
Then there was me...just smiling at him the whole time.
I also got a glimpse of his crosswords...no words, just beautiful patterns he had formed on the papers by coloring in the boxes...

Obviously I have a soft place in my heart for people with special needs or disabilities because of Kannon and my father.
But what I don't yet have a grasp on is how to handle the months/years I have ahead of me.

I looked at my neighbors father who in my best guess would say is around 70, and he still had that look of concern and wear that I see on many faces of parents with special needs kids.
He still watched his son's every move, still went to the bathroom with him, and still held his hand as they walked out of the meeting...
He even had a bag full of "stuff" that we all know too well. The one that has any and everything in it just in case our child has a meltdown or looses their focus all of a sudden.
I saw him pull out pens, a calculator and some sort of juice for him during the meeting.
Still after all these years...he was still doing all these things for his grown son.

The love of a parent never fades.
The concern of a parent who has a child with special needs never fades either...
In fact as the years pass I find myself panicking at times when I think about what will happen with Kannon when I pass on.

This is the one thing that I have yet to find true peace with in my life.
How can I know that he will be alright when I die.
Who is going to love him...will he ever find love on his own?
Who will laugh with him when no one else does?
Who will protect him from the people who don't understand his ways?
Who is going to carry his bag full of "stuff"...

I find this part of my life to be the most chaotic.
Whenever I try to think about it rationally I find no solution.
If I try to make a plan, there is not a one that my heart feels good about...

I can only hope that someday, wherever Kannon's path in life takes him it will find good people.
People who can smile with him.
People who will laugh with him.
People who although may not understand why he does certain things, will still see him as a person.

Although I know it is impossible for someone to feel the love and compassion that I do for Kannon,
I know it is possible for Kannon to continue to live on just as happy and safe as he does now.
I know he will always find things to laugh at and explore even if I'm not there with him...

So I will try not perceive it as "inevitable"...
The uneasy thoughts I have about leaving Kannon behind.
I will continue to hope for a better tomorrow for him and all the other kids who have special needs.
Because they do grow up, they become part of society...they become adults.

I will consider myself lucky that I may already have found that one person I will truly grow older with every single day, and that I have a lifetime to continue to show him what real love is about.
So that when I do have to leave him his heart will just know...it will be full...it will get him through...

I will continue to share our stories in hopes of a better understanding towards Autism and the families affected by it.

I will...because life is Inevitable, so is the love we give every day.
The one thing I have learned so far in all of this is that even though there are times I feel like I am not getting through to Kannon, like I am talking to a wall...like I am loving someone who can't love me back...
I have learned that no human soul is capable of denying love...no matter what reaction or lack thereof we may receive.
Love gets through every single time.
Every word we mutter to them as they lay in our arms crying, every hug we try to give them as they pull away, every tear we wipe away from their face as they cry and cry out of pain...frustration...exhaustion...
They feel our love, our actions, even if they can't react to us.

I have to believe that Autism was "given" to certain people for a reason.
It has to be one of life's most challenging tests of patience and pure, raw love.
The thought of being trapped in my own body without a way out is overwhelming, and yet Kannon lives this truth every day.
He was given a challenge so huge that no doctor or scientist can yet figure out.
It is very real, very big, and for some reason it was given to our family to figure out...
And we may never.
But we will always have our love, and it has been strengthened to something beyond this world because we have been trying so hard to "figure it all out"...

I think I got lucky.
A lot of us did.

peace :)

Tuesday, October 4, 2011


I have always spoke of patience being one of the necessary elements in dealing with Autism.
But what I have yet to touch base on is the patience of those outside of our immediate circle(s) in everyday life.
I am speaking of family...friends...strangers...people who have lent an ear, hand or kind word in times of need.

I live away from my biological family, whom as the years pass by is getting smaller and smaller.
The past 5 years of my life have been painful and emotional, but they have been full of life lessons and change.

Such is life, always changing...evolving...whether we are ready for it emotionally or not.

This is where other people can really make a difference.
At least, this is where they have for me in my journey.

After I lost my father I received support from my immediate group of friends.
Those who have been there always, my childhood peers.
Their love, support, and guidance through the fog of grief helped me get back on my feet again.
I am forever grateful.

After I went through my divorce and received the dreaded "diagnosis" of my son, well this is where my world opened up to a whole new world of people.

I have met some of the most courageous, kind, patient, and emotionally honest people through my journey with Autism.
I am continually inspired and humbled by their stories and acts of strength and integrity.
If you have ever found yourself feeling alone and overwhelmed you should search online through the hundreds of blogs written by people affected by Autism.
These are the stories and words that got me through many dark times...this is also why I started my own blog.
If only I could reach out to one person...just one.
Because sometimes those who are closest to us just don't have the words for us.
Sometimes they don't know what to say after a day filled with tantrums, screaming, biting, echolalia, paperwork....etc....etc...
Not because they don't love us, or want to take away some of the pain...but because unless you know Autism you can't understand it...and that's o.k. It's not any one's fault.

There are many types of families out there.
Many definitions of what a family is.

I have found common threads and experiences with complete strangers through them sharing their life journey, and they have brought me peace.
I have also found support and love through people who have been in my life for years, decades, that I never knew possible...
I have also seen my biological family evolve with me and Kannon through our experience with Autism.

Out of love...out of hope...out of the kindness of their hearts.
I know I am lucky to have them.
I know that if it weren't for Autism I may have never seen this side of them.

I also know that Autism brings out the best, and worst in all of us.
I feel lucky enough to be surrounded by people who choose the higher ground, at least most of the time...
Perfection is not in my vocabulary, never will be...
I am lucky to be among those who chose to walk a path unknown, yet one that continues to strengthen all of our spirits and perspectives.

I suppose Autism allowed me these gifts.
It allowed these wonderful people to come into my life.
And for that I will always be grateful...

People are what make us better, even if we only watch from the sidelines we can still learn.
We can learn from one another if we allow it.
We can also be weak enough to let people help us.
We are all just human.
We all are here to live this experience together...
To create new families and to strengthen our existing ones.

I have come so far in my life because of people.
Because of my family.
Whether they walk into my front door every day or never will, they are still family.
And this is why I have survived.
This is why I will continue to survive.

peace :)

Monday, October 3, 2011

There's no place like home.

Kannon continues to be my teacher in life.
His insight and few words that he does speak are sometimes mind bending.

He has been home sick since last Thursday and has been spending a lot of time silent on the couch watching his movies and going in and out of sleep...
He is a great "sick" kid. Honestly he just lays there. No echolalia, no movie talk, no crying...just silence.
Every once and awhile he will muster up the energy to ask for "juice please"...then silence yet again.
The one thing he does like for me to do is sit with him and rub his back and play with his hair, I welcome it since usually this is overstimulating for his senses and he will push me away at times when I try to do this when he's not sick.

So I sat down next to him, rubbing his back and told him how happy I was he was here at home with me enjoying the peaceful day...it was our day together.
I told him over and over again, there's no place like home when you feel sick...

Then today he decided it was time to bless me with his beautiful insight that I have come to enjoy, welcome, and truly listen to.

We had just visited his doctor, we walked out to the car hand in hand and got in.
Once we got in the car he simply said to me,

"No looking back mamma...I am home"

My head jerked back a bit in amazement at such a statement.
I didn't say anything the car ride home, neither did he.
Just silence.

After we got home, he settled back on the couch with his pad of paper and drawing tools...

About 30 minutes later he came into my office, put the picture down in front of me and said again,

"No looking back mamma...I am home"

This time he hugged me, grabbed my face looked me in the eyes then walked away.

I guess I should never wonder how he feels about me.
About his path.
About where his hearts intentions lay.

He told me this today :)