Pinning Down Autism

 

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I think sometimes it’s hard pinning down what Autism looks like.   I remember when Johnny was two and he had lost the few words he could say and we were beginning to panic inside,  our family doctor kept saying we will have to get him evaluated for speech delay in a few months but don’t panic.

“Sometimes boys take longer to do these things and your son is took longer to crawl and walk etc.  ( I now know these could be red flags for Autism.) Your son is a happy boy who is engaged so don’t worry.  Kids change so much at this age.”

But of course as his parents we were worried.  Well-meaning friends would also say let him be a child and it will come.  We were clinging to hope.

I would Google like crazy for answers and grab pamphlets and just search for any sort of information because I knew that something wasn’t right.   When Johnny was a baby I didn’t want to force him to learn things instead I wanted him to discovery the world.  I knew they were all different types of playgroups, skill building groups,  baby sign language etc but I kept thinking I just want him to be a baby.   I wanted to present things to him and let him discover things in his own way.   I wanted to have an organic style of raising him where it all just happened naturally and he discovered the world in his own way.   I would just expose him to all different kinds of things just to see what he would like and how he would take it in.   Imagine the panic inside when after Johnny was a-year-old and I would be in playgrounds and he was in more activities with other parents and their little ones.  Its so hard not to compare to other children as you listen to other moms getting excited because their little guy or gal is suddenly trying to walk or toddle along or is trying to engage people by saying words sounds. By two years old there was a panic rumbling deep inside of me and I admit I was starting to question my abilities as a mother.

Then there are the wait lists for speech therapy and developmental assessments and all these worries are churning inside.   The months start passing by and the panic builds because you feel like you’re losing precious time.  I would keep looking on the Internet  as I go back and forth thinking “my son he can’t be autistic it’s just something he will grow out of it it’s just speech delay with a little help he will be okay.  He will be okay? Right????”  

But as Johnny approached two and half that’s when things really started to change in a challenging way.   I was pregnant with his little sister and I thought the reason he was acting so differently was because he was seeing his Mommy change in front of his eyes and because he could not talk he was unable to express his concerns.   I kept hearing about the so-called “terrible two’s” and well meaning folks were saying he is going through a phase and  more and more meltdowns occurred and transitions were a nightmare.  Worst of all it felt like Johnny was stepping away from himself and not making eye contact as much as he used to.  He has very expressive eyes so this really started eating at me.   Johnny loves his grandparents but he was not socializing with his grandparents when they came over and effectively played in the corner or  he would turn his whole body away from everybody. He looked sad and I felt sad.   I also felt very helpless because as a new life was growing in me I wasn’t sure what was happening to my first born child.

So when I think about pinning down Autism and what it means to me and to us as a family I would say its when in your gut as a parent you feel that things seem “off.”  He was struggling while children were not.  Its like  when you are left handed and the world is constructed for right handed people and you are clumsy all the time because you cannot help that you reach with your left and most people reach with their right hand.   I can’t imagine how frustrating this time in his life must have been for him while everything looked so much easier for his peers.   My child is just different and the difference has to be acknowledged and respected.  Once I could accept the differences I could start giving him the accommodations so that he could learn in his own way and not the way that instinctively I thought kids learn.  That is when Johnny began to move forward.  Mommy and Daddy had to learn how he learned and follow through at home.  Every moment of every day IS a teaching moment.   We learned how to incorporate speech and social opportunities into the mundane every day routine parts of our day.  Our lives completely changed and I was no longer organic laid back spontaneous Mommy but his partner in learning.   My daughter was a baby when this journey began so I still don’t know how we managed but somehow we found moments because we had to.

Even if it turned out not to be Autism there were delays in social and communication that Johnny needed help with and we would not have waited until he was kindergarten.   I think one of the best things that doctors could do for parents is to STOP saying  that a  child will “grow out” of something and instead think of it as setting up a child for success by enabling them when they need a boost.  Children’s brains between 2-6 are little sponges so why wait when its an incredible opportunity for learning.   Johnny really started moving forward when as parents we realized that we were giving him the tools to ENABLE him so that he can succeed in the life that he chooses to live.

Psst….I want to tell you one more thing.  Johnny is alright even though he is Autistic.

“He is the sweetest boy with the biggest smile.  I could eat him all up he’s so precious.”

That’s what an early childhood teacher told me last night at his school.  Yes she’s right.

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3 Comments Add yours

  1. Beautiful Cyn! I recognise so much of your journey but what I most connect with is the point at which you stop being scared and start to reach past the delays and prognosis to your little boy. He is own his own journey with its own schedule. It’s amazing to be on that ride with him x

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    1. Cyn says:

      Thank you for the wonderful comment. I think that you are so right. Once as a parent we decide to accept that are child is on his own path and learn how to support him etc things begin to move forward.

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