the good, the bad, and the best

April is autism awareness month.  I am aware of autism every month.  For those who aren’t, there is April, they see pieces on the tv about it, or things to follow on facebook, but then it’s on to the next month.  I don’t blame them for moving on.  Some days I truly envy those people.  There are those days when I would like to hide from it, but then there are those days, like today when I would like it to come out in the open.  Then I could see it and know it and embrace it and maybe even tell it how I feel about it.

Like most things, autism was one of those things I knew little about until it showed up in my world.  cj was diagnosed when he was 3.  I was torn between feeling glad that finally someone agreed that something was going on and heart-broken that my fears had been validated.  No one wants to hear their child has something that makes them different from the standard.  He’s nine now. We have been through exams by neurologists, psychologists, and audiologists.  He has made gains through occupational therapies and speech therapies, and survived MRIs and blood tests.  We have come so far, and after all these years I can tell you this, I know everything and nothing about autism.

I know it as stolen my patience.  I know it’s why I have cried myself to sleep so many nights.  I know it’s why not a minute passes when I don’t worry about him – will he make it through school, will he be able to drive, hold a job, live independently?  I know it has pushed its way into every relationship I have, be it with a friend, the spouse, or family.

I don’t know who would cj be without autism?  Conversations are a challenge for him.  There is rarely more than a sentence or two before he moves on, but he speaks to people with such honesty and matter of factness.  Would he be the same boy who recently told one of his associates that she has “beautiful golden hair that is soft as a pillow”?  When a teacher, passing in the hall, saw him struggling with the zipper on his jacket, she asked if he needed help, without autism, would he still have responded “no, but I’ll take a hug”?  Who knows?  I don’t.

I don’t know what it’s effects are on lulu.  She is a second to mother to him, but she is only 5.  She has never known me when I wasn’t stressed to my limits.  I don’t know how big of a role it plays in my need to create.  I bake, knit, and sew the stress away.  If autism wasn’t in my house would there be a freshly made quilt tossed in my chair right now?

I know autism brought me to my little town.  I felt cj needed a small school community, not an oversized school that ran itself like a business.  He loves going to school and he finds a piece of success there everyday.  I know autism has taught me that we all turn inward at points in our lives, we all have autism.  I know it has introduced me to amazing people.  The people who love him for who he is.  The people who don’t judge.

I know it has taught me to value everything a child has to say, whether it’s with words or actions.

I know it has taken a long time, but I accept autism’s presence in my house.  I sometimes even celebrate it a bit.  The other night cj gave me a bedtime hug and told me “Mom, you fill my heart with greater joy”.

Moments like that require celebration.

5 thoughts on “the good, the bad, and the best

  1. Claudine Giovannoni says:

    But, truly, you don’t have to envy them…
    Well, not really. Facebook isn’t reality but only a mere way to keep in touch with “nothing”.
    I heard about autism… many years ago…
    I good friend of mine she was diving to hell with this word.
    A mere word, yes, but when you are concerned… when you realize that your kid is autistic… well, this is a big difference.
    I was totally stroked by the movie “Rain Man” with a beautiful Al Pacino…
    I didn’t know what was hidden behind…
    But this is a lon story…
    And I’m here only by fortune… You don’t know me, as well I don’t know you…
    I think there is more hidden to us.
    Did you ever hear about “indigo Childs” or “crystal Childs”…
    I do believe… there is a lot to discover.
    Both my kids (8 and 11) and indigo… and they teach me (every day) how to act, the reason of my presence into this body…
    Again is a long story… please forgive me.
    I’m a dreamer, convinced that there isn’t causality… if I’m here, right know, maybe is a profound reason with neither you or me can explain.
    Serenity
    :-)Claudine

    http://claudine2007.splinder.com

  2. Amanda says:

    This was both an informative, and a beautiful post to read. What a wonderful mother you are; and I say that because you have the strength to be honest and admit when you’re scared or confused. Your son is lucky to have you, and you are obviously blessed to have him. 🙂 Thank you for sharing.

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