How to be an autism mom.

There is no manual given to parents after their child receives an autism diagnosis. There should be. There should be something printed in black in white that tells you how to breathe again. Something that gives you step by step instructions to survive. To be what you need to be. To be what your child needs you to be.

When we walked out of the hospital with an autism diagnosis, it was as is everything and nothing all changed at the same time. Grayson was still Grayson. I was still Grayson’s mom. And at the same time everything felt different. New. Changed. Unknown. I felt like a stranger in my own life. Words that I had only read in textbooks were now in my life in a way that I was not prepared for. But, how do you prepare for that?

And so I did the only thing that I could do, I put one foot in front of the other. I took deep breaths, in and out. I started my way along this journey. And slowly day by day, I became something so much more than I was before. I was still Grayson’s mom. I was still fighting like hell for him every single day. But I was different. Different in a really important way. I saw all of the ways, big and small, that autism began to infiltrate our lives. I saw it changing us. Our schedules, our plans, our family dynamics. I felt powerless against it.

I know that there are people out there who feel as if they do not have the strength to push forward. People who feel weak and defeated. People who feel beaten down. People questioning everything. People hoping to pinch themselves and wake up from a bad dream. I know this because I was that person. I was that person for a long time. Frozen in something unknown. Running from something that I could not outrun. And after a while I could not run anymore. So I had to actively learn to be someone different.  I had to teach myself to be an autism mom.

I did not figure it all out a one time. It came slowly. Naturally. Each time I went up against something bigger than me, it forced me to become more and more of who I am today. This is how I became an autism mom.

    1. I stopped living in fear of autism. I needed to feel as if I had even the tiniest bit of control over the autism. And I found that control by relinquishing fear. I made certain that I was informed. I read books, I googled, I listened to the members of our team and I asked a lot of questions. I became the “Autism Manager” in our life. Certainly not a title that I ever imagined I would hold. I decided that there was no such thing as a stupid question. So I asked questions until I felt satisfied with the answers. I asked questions until I felt less fearful. And as I became more informed and more engaged, autism became less scary. Do not get me wrong, there are still things that scare the crap out of me! When I see a new symptom developing or when I talk to another parent dealing with a difficult challenge; I am fearful. And, I have to imagine I am not alone in that feeling. But the fear is different. It is a fear that I know I can harness. Control. Overcome.
    2. I got it wrong, learned from it and then kept going. For every strategy that works there are several that fail. This is just a part of the diagnosis that you have to come to terms with. You will not always get it right. In fact, most of the time you will get it wrong. But give yourself time to stop and take a deep breath. Then learn from the experience and move forward until you get it right.
    3. I came out. I stopped seeing autism as something to be embarrassed of. Something to cover up. I learned to see the wonderful gift that Grayson’s autism was to the people in our life. To me. I saw it as something that could teach all of us to be more resilient. I saw the ways he helped myself and others to be patient and kind. I found a voice for our struggles. I shared my voice and our experiences. I freed myself from the loneliness that came with hiding the autism away.
    4. I surrounded myself with a network that “got it”. I was selective about the people we brought into the inner circle. I gave people in my life permission to talk to me in a real way about our real struggles. I forgave them for saying the wrong thing. And I forgave them for not knowing what to say. And they forgave me for stumbling through the diagnosis. They still forgive me today when I stumble. Stumbling is just part of the diagnosis. So I surrounded myself with people who could pick me up.
    5. I give myself permission to be imperfect. This is the key to survival. Accept less than perfect! Forgive yourself. Tell yourself that you are doing the best you can. Know that you will always be enough for yourself and for your family.
    6. I remember what I am fighting for.Look, the stakes are high. After all, we are talking about our kids. And whenever we talk about our kids we are filled with a crazy passion. My first thought after Grayson’s diagnosis was “How in the hell are we going to do this?” And sometimes today that thought still creeps into my head. And I have come to learn that the answer is quite simple; we just do it. Every single day. We find the strength to be what we need to be. Because we feel crazy love for our children. A love that is more powerful than anything that tries to stand in our way. And because we love them, and because they are the best part of us; we fight for them.

 

 

The truth is that if I was given the choice, I would certainly choose an easier path for my child and for myself. I have learned to embrace this journey, but that never fully replaces the feeling of longing for a life free of autism.

I am an autism mom. I am strong and brave. I am also weak. I am filled with fight. And I am filled with questions. I am confident in my mission, but tentative in my journey. I have moments when I get it right. And I have moments when it all seems wrong. At times I feel like a warrior forging ahead with strength and conviction. And other times I feel lost, retreating from the frontline. I am here. I am doing my best. I am perfectly imperfect. I am bruised but not broken. I am more than I thought I would be. And, often less than I need to be. I am fighting. I will fight. I am surviving. I will survive. I am fueled by an enormous amount of love for my children. I am a mom. And, I am an autism mom.

JS

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