Why I choose to be thankful for autism…

Sometimes I feel really angry when I think about the autism in our lives. But if time has taught me anything it is that spending too much time in the anger of it all does not do any good. The angry is such a lonely place to live. The angry is sad and isolating. The angry cannot look forward. It is frozen in the present.

And one day we decided we just did not want to live there anymore. Sometimes the present is just too hard. Sometimes all we have is the promise of a new day. A fresh start.

It is ironic that autism exists on a spectrum. Because my acceptance of autism exists on a spectrum too. It is not yes or no. it is not love or hate. It is not up or down. It is everything. Every emotion. Every state of mind. Every state of grief. It is a little bit of everything I have ever felt to every degree and every magnitude.

It is good things and beautiful moments. It is bad things and hard moments. It is feeling isolated from the world around us. It is feeling embraced and welcomed by the people we encounter. It is learning to find hope in the smallest gains. It is learning to recover from devastating set-backs. It is overcoming obstacles, only to start again. It is celebrating wins. Preparing for loss. It is agility in a way that I never thought I would need to be agile. It is being prepared in any moment for anything autism might throw our way.

Autism acceptance exists on a spectrum; and in a way I think we all live on our own spectrum.

A spectrum of hope and fear. A spectrum of dreams and reality. A spectrum of progress and setbacks. A spectrum of who we want to be and who we are.

The time in my life since my son’s diagnosis has changed me. There are things that I see in the way I live my life every single day. And there are other things, bigger things, that I am only beginning to understand. And while there have certainly been obstacles along the way; I understand that this is all a part of my journey.

And today, I want to say words to you that I could not have said at the beginning of this journey. In some ways, I am thankful for the autism in our lives.

I am thankful every day for the gift of motherhood. I am thankful for both of my sons and their unique and untiring spirits. I am thankful for the strength I have found along this journey. Thankful that day by day I believe in myself a little more. In my ability to navigate this journey. To embrace this journey.

I am thankful for the perspective gained raising a child with a special need. I am thankful that I can see the things in my life that are truly value. That day by day we learn a little more about the things that just don’t matter. I am thankful for the understanding my son’s diagnosis has given me.  The patience. I am thankful that I have learned to see the joy in even the simplest of moments. I am thankful that I have learned to pick myself up and rise up; time and time again.

I am thankful that I have been given the opportunity to share our journey. To talk about autism in a way that is real. Real and messy and unapologetically authentic. I am thankful for the strength to put our story out there. I am thankful for the healing that comes with that kind of vulnerability. And, I am truly thankful to the people who welcome us. The people who do not pass judgment. The people who seek a deeper understanding of our life. Of this journey.

I am thankful for the people who surround us. The people who pull us out of the isolation.  I am thankful for old friends. Friends who have walked alongside us. Friends who have shown forgiveness and understanding in our least graceful moments. I am thankful for new friends. Friends who came into our life after diagnosis and have embraced us without question. I am thankful for our family. For the four of us who live inside of our home. And for the much larger family that surrounds us even when we are not together.

It feels odd to be thankful for autism. It almost feels a little untrue. But I know that autism is all around us. It is in all of the big and little things that surround me.  I know that autism has changed me. That it continues to change me a little more each day. It is a piece of me. A piece of my world. And along my spectrum of acceptance and healing I choose to be thankful. I choose to rise above the anger.

Along a journey that allows for very little choice; I choose to be thankful.

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To the People We Cannot Protect

My son has autism spectrum disorder. I accepted a long time ago that a lot of the days along this journey were going to be hard. But sometimes I still cannot believe just how hard it is. Just how much we have to endure every single day. The obstacles and barriers and accommodations are never-ending. There is not a break or a rest. It is one moment at a time; every minute of every single day.

It is hard. And it is sad. And it is so incredibly lonely some times.

There are moments you try to prepare yourself for. But at a certain point you accept that you will never be ready for some of the things this journey will ask of you. So you toughen up. You take a deep breath. You stand taller than you feel. You give more than you have. You fight harder and faster and stronger than you want to. Because losing is not an option.

Parenting a child on the autism spectrum requires a kind of tough that I did not know existed before my son was diagnosed. I used to think that there was a limit to the amount of tough inside of a person. That at a certain point everyone had limits. That there was only so much pain and strife and struggle that one person could manage. That after a while it was just too much to ask of one person. And so the person reached their limits. They waved the white flag and asked for a break.

But, there is no white flag for autism. And, there are no breaks. There is just day after day. Obstacle after obstacle. There is achieving new and deeper levels of tough every single day.

Sometimes my son is physically aggressive towards other people. Sometimes he hits because he is happy. Sometimes he pinches because he is trying to get a reaction from someone. Sometimes he pushes because a loud noise scares him or catches him off guard. Sometimes he hits because he does not understand the feelings or emotions of another person. Sometimes the reasons for his physical behaviors make sense to me, but more often they do not.

And no matter the reason or cause for his behavior; sometimes he is physically aggressive towards other people, and sometimes  other people get hurt. And seeing that aggression is one of the toughest parts of this journey.

Today someone that we care about was hurt. Someone who we invite into our home. Someone my son considers a very close friend. Today she was hurt. Today my son hurt her. And I am sad. I am sad and frustrated and confused. I am so sad for our friend. Sad that she was hurt. Sad that she may not understand why. Sad that despite my nearly 3 years along the spectrum, I still do not have the words to explain this to her. I am sad for my son. For the remorse and confusion he feels. Sad for the anxiety he feels when we talk to him about his social behaviors. I am sad for my family. For the long and lasting impact autism will have on all of our relationships. I am sad for the people in our life. Sad that I cannot protect them. Sad that they need protecting. Sad that I feel sad.

And I am just so sorry.

I am sorry every time someone else is hurt along this journey. I myself feel hurt by this journey more often than I care to admit. And I am sorry to anyone else who experiences that alongside us.  

I am sorry for the physical pain. And I am sorry for the emotional pain. I am sorry that I cannot do more.  That I cannot protect you from the behaviors. From the autism.

I see you. I know what I am asking of you. I know that standing beside us means navigating something that you do not understand. Believe me, I know that well. I know that sometimes it means enduring the worst parts of the autism. I see you. And I am so incredibly thankful for you.

And, I know I already ask so much of you.  But I need to ask something else of you…

Don’t give up on us. Don’t give up on him. 

I know you do not know him like I do. I know you do not love and cherish him the same what that I do. But he is good. He is so good and sweet and wonderful. And inside of his beautiful messy brain he is trying to make sense of things. 

I promise you that I will work with him and talk to him every single day. I will never stop teaching him about kindness and being a good friend. And, it is only because of the incredible friends and family and support that surrounds us that I can show my son what to strive for.

I see you. And you see us. I am sorry. And you never ask me to be. Don’t give up on us. And I know you never will.