Friday, April 20, 2012

One Year Later

Looking at my calendar, I realize that it was one year ago tomorrow that my baby boy was diagnosed with an autism spectrum disorder.

One year – I cannot get past it.  Has it been one year that we have been at this?  One year that this has been our reality?  In actuality, it has been my son's whole life that we've been dealing with his various developmental issues, but it has only been within the last year that we had a name for it all.  Autism has been a part of our lives since…well…forever, making us rather reluctant veterans to this fight, but on the other hand it seems like we have so far to go still and so much to learn.

As I look back at the past year at where I am now, where our family is at this moment, and most importantly, the progress that my boy has made, I cannot help but feel tremendous accomplishment, pride, and gratitude.

I began with many questions about our son, his abilities, and his future, and we had so few answers.  

We left our son’s Early Intervention evaluations with reports highlighting delays that were more severe than we had ever imagined.  I blamed myself (I was a stay-at-home mom, how could I not see it?), I blamed our pediatrician (how could she not see it?), and I felt so overwhelmed with what was the new path for our lives (how will I ever manage this?).  How could I make decisions and care for a child who needed far more care than I ever anticipated?

That was the low point.  I’ve had moments since where I felt overwhelmed, but never again did I visit that dark place of such paralyzing fear and unknowing.

I picked myself up off of the ground and stepped forward determined to dismiss the ones who saw only deficits and surround myself with the souls who saw the possibilities.  As I reflect on the past year, I really have to credit an entire team of doctors, therapists, and newfound friends for walking this path and showing us the way.  In a way, it seemed as though the right people - the optimists - were placed in  my path at the exact moment I needed them.

We found a developmental pediatrician who got down on our level and told us, “I know what this is and I know what to do about it.”  He helped us to our feet.  He comforted my fears and assured me that there was progress to be had.  He gave us a road map – nothing more than a slip of paper with a therapist’s name and a couple of prescriptions – and told us that he would be there to guide us when we needed him.  So he has.

That road map led us to a therapy clinic and an occupational therapist who goes out of her way to not only help my boy get his body – a body with a sensory system that betrays him and motor problems that thwart him – under control, but who also has been willing to go above and beyond to help me with insurance, school, and anything in between.  She never sees an impassible barrier - only the many options we have to scale it.

That led to a speech-language pathologist who believed in the potential – and goodness is there potential! – of my boy.  She saw that his mind was full of ideas and believed that we just needed to find the key to unlock it.  To give him the tools give rise to his thoughts.  To give him the voice to show the world exactly who he was and what he could do.

We then added a second speech-language pathologist just a month ago who just gets my boy and helps me brainstorm new ways to connect with him.  Her ideas for Floortime interactions and her creativity always astound me.

We then discovered the aquatic physical therapist who, over time, has remained persistent with our boy.  When he screams, she pauses and tries to find out what he needs.  She is patient and kind despite the slow progress.  She reassures me and reminds me to approach every day with a sense of humor.

Most importantly, each and every one of the above, people who came into our path at a time of despair and unrest, have helped guide me towards a place where I feel confidence in myself as a parent and an advocate for my son.  This year has been a team effort, as will the years to come.

This year has also seen me transformed from a person who wanted to huddle up in a corner and wish the world away to a person who feels like she can take on anything for the sake of her boy.  The personal growth I've experienced is something of which I can take great pride.

Then there is my sweet baby boy himself.  Oh, the difference a year makes!  This time last year my little boy could not speak a word.  Now, he’s saying 2-word phrases.  Last year, his sensory system was so out of control that he would throw up at the littlest things.  He was eating baby food consistencies and purees.  Now, the throwing up has subsided, much to my delight (and my washing machine’s relief).  Last year, he would not look me in the eye.  Now, I get some eye contact, brief as it may be.

We have a long way to go, but we are well on our way.  We are on the path and we have some great guides.  My boy has already surpassed some of the expectations we had for his first year.  Some areas have been slow progress, but we have seen progress in every area.  I expect nothing but continued progress and great things from him.  Certainly we are in a better place now than last year. 

I also have learned that autism is not a sprint.  It is a marathon.  We will be running for a long time, but it has made the milestones all the more rewarding.

We are have made the move from Early Intervention into the special needs preschool setting.  We’re transitioning into the additional services that the school system will provide along with preschool.  We are continuing with private therapies and will continue to do so.  We will not throw our hands up in the air just yet, not with the promise of so much to come.

The future seems bright.  I hope my optimism carries me for a while and continues to fuel my energy to fight for my angel.  Regardless of where the future takes my son, I am confident that we will figure it out, as we have up to this point.  No matter what happens, the sun will continue to rise.  Years will come and go.  Life will go on.  We will move forward, too.  We will see progress.  We will continue to fight.  I know there will be periods where we will hit a wall or slip backwards, but we’re doing okay and will continue to do so.

I can say that with a smile and more than a touch of optimism, which is the greatest achievement of this year.  No matter what, we will be okay.  I will innovate and collaborate and turn to the people we trust as I walk along side my little boy.  Most importantly, I will fight, because he has shown me that I have the strength to fight for him.

There is reason to believe that the sky's the limit.

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Jeanie is a former engineer turned stay-at-home wife and mom to an amazing 3-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.  To follow more of her ramblings, like her on Facebook!


  1. I think that it's especially hard to see the issue when they are exaggerations of things that you are used to seeing as 'normal' because it's how one of the parents are.

    God bless you and Jack. Keep flying for the sky.

  2. Such a great article!

  3. There is something in you that I admire, and that I do not find in myself. You have been fiercely tenacious as a warrior-advocate, while at the same time being tirelessly loving as a gentle mother to Jack. Prayers for all of you as you continue this journey. Thanks for the articulate way you have of teaching us what life on the spectrum is about. Peace!!!