Open Letter to Parents After an Autism Diagnosis.

To All of the Autism Parent Warriors Out There –

I see you. I really see you. I see you because I am you.

I know the thoughts in the deepest and darkest corners of your brain. I know your fears. Your pain. I know that you are exhausted from this long journey. A journey that is only just beginning. I know that you are questioning everything. Every behavior. Every word. Every social interaction. I know that your heart and your head are working in opposition.

I know that you are scared. I know that this is bigger and harder than you were prepared for. It was bigger and harder for me too.

The road to an autism diagnosis is not for the faint of heart. It is long and winding. It calls on you to be braver and more patient than you thought that you could be. It shakes you to your core. It forces you to look deep inside of yourself time and time again. To find the will to keep pushing forward.

And after all of the referrals and the tests and the appointments you are surrounded by words that you never imagined would be part of your parenting story; your child has autism.

These words take your breath away.

So much so that for a while after the diagnosis you cannot say the words. You actively hide from them. You use all of the strength and energy that you have left to block out the words. To block out the diagnosis.

And like a wave, more fear rushes in. You fear things that will happen right away. And, you fear things that are far in the future. You fear the finality of a lifetime diagnosis. You fear things that you do not completely understand yet.

Your instincts will tell you to run.

You ignore phone calls from the people you love. You start to communicate only in text. Because somehow typing the words is easier than saying them out loud. Or, hearing them out loud.

It is ok for you to feel scared. It is ok to meltdown and lose your mind. It is ok to cry. To ask “why is this happening?” It is ok to retreat. To protect yourself. To create a safe place to heal. To mourn. To figure out your next move.

It is ok to be angry and confused. It is ok to wonder if you have what it takes. It is ok to be jealous of your friends who are not on this journey. To question whether or not you can do this.

But I promise you this:  you will do this. The love for your child is bigger than your fear. Always.

Today autism feels big. Too big. It feels like it has taken control of you. Of your family. Of your future.  And, it will probably feel that way for a while.

You will learn that autism is ever-changing. But, you will also learn to change with it. You will learn that autism is unrelenting. But, you will also learn to be unrelenting in your response. You will learn that autism does not recognize boundaries. But, you will also learn to set and enforce boundaries of your own.

You will learn a lot of things along this journey. About autism. About yourself. About the power of love.

Standing at the beginning of this journey I was filled with questions and doubts. And, I still have a million questions. I still have moments of fear and uncertainty. But, along the way I became someone so much bigger than the person I was at diagnosis. I am stronger. So much stronger than I ever dreamed I could be.

I see you. And I know that you are strong enough to walk your journey. Just as I am strong enough to walk my journey. We are strong enough to walk this journey together. United. In our love for our children. In our fight against something big and scary. In our determination to never give up.

I know this scary. I know you are scared. But, you are not alone.

Jessica, Fellow Autism Parent Warrior

 

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