Learning beside him

I met the diagnosis of Josh the same way I meet everything.  Some confusion, some frustration, a whole bunch of time spent researching, and a whole host of books ordered.  We went here.  We went there.  I considered moving because I read somewhere that the best therapist live in a different part of the country.  And eventually, I rejoined the world where people get up in the morning, go to work, and come home.  Toss in a bit of autism, some anxiety, some kids and dinner and we were set.

Over the past few years I have learned one thing.  And that is that no one knows.  No matter how much they want to, or how much they do infact, know.  No one really knows everything.  I learned this long ago – when people told me there were no answers for my questions.  Eventually I found answers.  Which is when I realized – no one knows everything.  And when you toss in a kid with a checkered past, and an upheaval of a childhood – trying to “Heal” him with therapy for autism – just isn’t going to happen.  Which really, is when the words of wisdom from long ago came floating back.  And I realized that as hard as people were trying to help – they were all limited in one way or another and really?  It was up to me to piece the useful bits together.

Really isn’t that what parenting is all about?  Learning your child inside and out for the first few years and then spending the next trying to give them what you think they need from the other people you think can offer it?

Trying to plug Josh into the programs designed for kids similar to him – was not working.  He had too much going for him, and against him.  Simply put – he is a kid.  Unlike any other kid – unique in his own ways, challenging in others, but perfectly just him.

As any parent of any child will tell you there are days you just shake your head and wonder.  And as any parent of any special need child will tell you – you learn a whole lot more than you are teaching.

Learning to speak up, learning to say no.  Learning Josh, all over again.  Has never been easy.  There have been countless nights where I have just wondered if this was the best for him.  Was it doing any good?  On those days that were just flat out miserable, and disheartening, and downright HARD…I had to ask myself was it worth it?  And obviously, something has kept us going.  Because hes still here.  And we are still going at it.

I was reading something from a friend the other day.  Back from the deep dark days where I just wondered and honestly considered finding him a better place to grow up.  I asked for opinions from just about everyone I knew.  Advice.  Help.  Answers.  I needed to piece this puzzle together and figure out if we were really in it for the right reason.  And what WAS the reason?

“You have had him for a long time now and no change. You are not capable of taking care of his needs. That hurts him more and he is unable to grow. Even you said yourself you are some times lazy and don’t want to take the time to try and help him. That does not help him. He needs structure. He needs to know yes and no’s and right and wrongs.”

Reading that email the other day sent my heart racing.  Wondering.  Pondering.  And eventually realizing, while reading those words – that I might not always feel like giving him what he needs.  I might not always feel like finding answers.  I might not give him what people consider to be structure…

But I can tell you this.

There HAS been change in him, even if people cant see it.  But really?  There has been more change in me.  He needs understanding, which I didn’t have.  More than letters and words, he needs me to understand what he is saying – without those words.  He needs me to understand who he is, at his core, in order to be able to bring HIM back out.  I had been so focused on his appearance.  His words.  His structure.  His stability.  Him.

Im not saying it hasn’t been a challenge, Im just saying that I was viewing him with the glasses of “Every other kid out there” and not as Josh.  And once I stopped focusing on everyone else, and focusing on him…I really began to understand something.  I realized he is a kid, just like every other kid.  He wants run and play and have fun and eat sweets.  He likes to hide, stay up late, and avoids bath time.  His heart is bigger than life itself, but he is scared.  And holds back.  He is shy.  But caring.  Almost to a fault.  He wants to know you care about him, and once he knows that – the sky isn’t even the limit.

He has taught me to look outside the box, see things differently, and not everyone ticks to the same clock.

I wont say I regret those thoughts of finding him someone/something better.  I will ALWAYS be reaching for something better for him…even though really, the best can be found right here, inside a short little boy who has taught me more than any therapist could ever try.

Thanks for giving me a try, thanks for trusting me.  Thanks for showing me the world can be a beautiful place.  And that the rough nights only make for a better morning.

We will find our way buddy.  One way or another, but with you leading.


Dont ever loose the fire in your spirit.  It keeps me going.


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