Saturday, April 20, 2013

Diagnosis Day and Two Years In


Two years.  Bizarre, isn't it?  The vernacular becomes so ingrained and the schedule so ordinary and the everyday bits of uniqueness so normal that you forget what life was like before.

Really, it's been more than two years, because my child didn't wake up autistic on his second birthday.  This departure from typical has been our "typical" since Jack was born.  It is who we are.  It's what we do.

I don't think I'll ever forget the significance of April 21st as long as I live.  It was the day I heard the words, "Jack has autism."

In many ways, that day has defined every other since.  While we had already done intake with Babies Can't Wait - Georgia's version of Early Intervention - we had yet to start therapy.  We had yet to immerse ourselves in the world of sensory diets, feeding strategies, neurological conditions, visual schedules, PECS, motor issues, and behavioral programs.  Before that day, we operated much as a typical family would, with few modifications.  It's why life wasn't working for us.  It's why our boy struggled so much.  We were expecting - waiting for - him to conform to our world.

In two years, our outlook has shifted.  No longer do I try to force my square peg into that round hole.  I've learned that his world is better when he can just be Jack, with support.

I also learned that the real work in helping my child learn and grow isn't best left to the experts.  I don't solely rely on therapists to get my child to where he needs to be.  Instead, I learn.  I absorb.  I carry over as much as I can so that the learning doesn't end.  Goals aren't just worked on in therapy, they are encouraged at home.

And yet...

I've also learned that - as a parent - my role isn't just to lead.  It is to follow.  Because regardless of whether or not a child has special needs, forcing each of them into an existence that does not fit their very nature will cause the same resistance of forcing that square peg in the round hole.

So, when Jack's interests lead to a place that I do not understand - into the unfamiliar - I learn.  I learn.  Just because I don't see the same beauty and feel the same excitement in numbers and letters that Jack does, that doesn't mean that I should ignore that he does.  In fact, if I want to be a part of his world, I better get excited about letters and numbers, too.

I also have learned that a child with special needs - in spite of what delays and disabilities they might have - can teach us so much.  Look at all I've learned from my autistic son in the past two years...

...that real beauty exists everywhere.  It exists in bubbles, sun rays on the floor, and the elegant rotation of a fan.  Beauty exists everywhere, if you only have the courage to change your perception of beauty.
...that joy takes many forms.  Flapping hands, tippy-toes, and spinning can all be happy.
...that fun is what you make of it.  You can have fun if you learn to forget what others think and let go.
...that words - in general - mean so little.  That only a few words can mean so much.
...that saying "No" is easy.  Saying "Yes" is far more difficult.
...that the lines between ability and disability are blurred.  That one can have amazing talents and gifts and still be disabled.  That one can have weaknesses and still have many strengths.
...that everyone loves.  That love doesn't always resemble what we think it should, but that it is love nonetheless.
...that love leads us through the worst of times.  That clinging to love will see you through the storm.

In the past two years, there have been storms, but we have ridden them out every time.  I do not fear the next 60 years with my son.  I know we will have our ups and downs, and that life may not look like the carefully planned adventure I once pictured so vividly in my mind, but life can - and will - be good.  It will be full.  It will be messy and complex and a constant work in progress.  We will stumble, we will make progress, and we will face each day anew with renewed hope for what may come.

Above all, we will face each day with love, acceptance, and understanding.  Because two years ago, the world didn't change.  We were simply given a name for the path that we were walking.

The reality is that we had been walking that path all along.



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Jeanie is a former engineer turned stay-at-home wife and mom to an amazing 4-year old little boy on the autism spectrum.  After her only child was diagnosed at 24 months with autism and an alphabet soup of special needs, she began to write about life parenting a very young child with special needs with honesty, optimism, and as always, a touch of humor.  

When not posting here, you can find Jeanie at her regular blog, Reinventing Mommy.  She has also been featured on The SPD Blogger Network and The Oxygen Mask Project, to name a few.  To follow more of her ramblings and get the latest on her posts, like her on Facebook or follow her on Twitter!

2 comments:

  1. Time flies by so quickly. A lovely reflection of your journey so far.

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