The Truth About Relationships Along the Spectrum…

postI have been reminded time and time again just how significantly my son’s autism diagnosis impacts the relationships in my life.

I feel the weight of the diagnosis in our life in a lot of ways. But somehow, the impact on the relationships feels the heaviest. It is heavy in a way that is exhausting. Heavy in a way that is sad. Heavy in a way that sometimes is just too much.

In moments of uncertainty I have been overwhelmed by the outpouring of love and support; often in the most unexpected places. In a kind and knowing nod from a fellow mother trudging through her own parenting journey. In a subtle “you got this” text. In an act of kindness by a stranger we encounter out in the world.

And for every moment of love and support, there have been moments of distance and pain.  No one tells you to expect the diagnosis to tear down the relationships in your life. Someone should tell you that. Someone should prepare you for that sadness. For that disappointment. For the loneliness.

In the beginning I believed that our life was just too much for some people to bear.  And, I let that be okay because, quite honestly, a lot of days our life was too much for me to bear. And, if I could not gracefully navigate the ups and downs and curves, then how could I expect the people in my life to do so?

So I made excuses for people. I told myself that it was not personal. I told myself that it was okay for them to be distant. I told myself that I should understand their position. And, so I did. I tried to make it not-personal. I let them be distant.  I searched to understand our life through their eyes. And then one day I realized something important; it was personal, the distance was hurtful, and it was not my job to help them through our diagnosis. It was all I could do each and every day to help myself through it.

When tragedy strikes there is no manual to explain the new rules of engagement. People do the best they can every single day to pick up the pieces of their life and move forward. They look in the face of the obstacles in their way, and the pretend to be strong enough to survive. Because sometimes pretending is a way to survive.

And day by day, surrounded by love and support, we find the strength to stop pretending and to truly face life, in all of the messy imperfect glory, head on. We look around us and we see that our support system has shifted and changed in so many ways over the course of the diagnosis. Of course it did. How could it not?

Our whole life turned upside down. In an instant everything was different, yet somehow exactly the same. People who have gone through something significant will understand what I mean. It feels impossible for the world to keep spinning the same way it always did before. And as impossible as it felt, the world kept spinning. People kept moving forward.

And as I stood still, frozen in the aftermath of the diagnosis, I felt the space between myself and other people grow more distant each day. And because I could not bear the thought of being left behind, frozen and alone, I figured out how to move forward. Slowly at first. Unsure. And then more sure and more steady with each passing day.

There are a lot of days that I am still barely surviving. You look at me from the outside and you may not see that. You do not see that because I do not let you. I need you to see me as strong. As steady. As a person and a mother who is unwavering.  It is something I need so deeply. It gives me faith that one day I will be this person. One day I will be strong and steady and unwavering. But today, today I still waver.

Today, I am held up by the people who remind me in big and small ways that my life will never be too much for them. They give me permission to be weak. They give me allowances when I waver. They love me and embrace my journey. It has become their journey too.

Being in my life means acknowledging the presence of autism. There is just no way around it. It has changed me in ways that I cannot explain. I will not make apologies for it. I will not edit myself and my emotions to make our diagnosis, our life, easier for other people. Loving me means loving all of me. It means embracing us in a way that is real and authentic.

I understand that I am asking a lot of you. Please know that autism has asked a lot of me. More than I thought I could give. More than I thought I could be. But, my son was diagnosed with autism. And loving him means loving  all of him. So I figured out a way to give more. To be more.

I still feel like our life it too much sometimes. I feel the impact of the “too much” on the relationships in my life.  It feels heavy and it feels sad. But,  I am reminded by people all around us that we are not alone. They quiet my fears. They build me up. They show me love. They are my people, and I am so thankful for them.

JS

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