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

Thursday, February 18, 2010


This past week Kannon has been "absent".
He is physically right here, going through the motions of his day, but when I look into his eyes he is somewhere else.
His verbal is through the roof, meaning he just babbles all day long going between sounds and a word will squeeze in there every now and then. Overall it makes no sense, or they are lines from SpongeBob or Scooby Doo movies.

It makes me so sad.
My heart hurts sitting next to him while he doesn't want to be touched and when he doesn't respond to my voice at all.
It is like I am a complete stranger to him.
A complete stranger who for the past 6 years has been caring for him and about him.

I hate watching him search desperately for something to engage him for longer than 2 minutes.
He has been searching all week for something....anything that will make him happy.
He still has not found it.

I put him down for bed tonight at 8.
It is now 10 and he has been talking non stop to himself and fidgeting in bed.
I can hear him.
Hear him searching his mind.

I walk up and down the stairs to his room.
I pause at his door and just put my head up and listen.
Listen to him sing...rattle movie lines...and even cry.
It breaks my heart.
Why is he crying? Why can't he settle his own mind and go to sleep?
Is he unhappy?
Am I not doing something right for him?

I may never know, because he can't tell me.
He can't even stop moving for a minute to slow his body or mind down.
He sweats like crazy because he can't stop moving.
His eyes haven't focused on anyone or anything.
His brain is jumping from object to object, subject to subject....god he must be so tired.
This is when Kannon scares me the most.
His safety awareness goes completely out the window.
He will bolt out the front door without warning...run down the street.
If we go to the store he will run away, up and down the aisles, grabbing things, breaking things...
I've learned to stay indoors for the most part during these times.

The usual things that calm his mind and body aren't working either.
He doesn't want me to rub his back this week.
He doesn't want kisses or hugs.
He usually always want kisses.
Again, he is not here with me...Kannon's brain is misfiring so badly that he cannot break through for a second.

I have gone through many ups and downs with Kannon.
He will go months making progress...growing both physically and emotionally.
Then out of nowhere he just stops. Sometimes even goes backwards.
I have learned to be cautiously optimistic with him...only to protect my own heart, not because I don't believe in him.
In my humble opinion Kannon is brilliant....he is my angel.
It is so sad when he goes into himself like this.
Where does he go in his mind?
I worry that he may never come back to me...and if that ever happened where did my beautiful, intelligent, happy boy go?

Tomorrow he may be back....or he may be a little more responsive....I hope.
Bouncing off the walls, kissing my hand, hugging me, asking to draw his pictures...
I already miss him and it has only been a week of this behavior.
I guess I am lucky in the fact that I never really take Kannon for granted, because he is frequently "taken" away from me. I am just blessed that he does eventually come back to me.
I said earlier in one of my blogs that you sometimes mourn your child even though they are right there with you. At this moment that is my truth.

This is Autism.
This is how it affects these kids.
This is the reality of it.
Sometimes for whatever reason they just have to go away for awhile, hopefully just to find their way...


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