Reflections on Acceptance, Understanding, and Making Space for Difference

Last night I laid in a full-size bed, inside a tent, under a train blanket, with my 8 year old son.

He had just fallen asleep. Beforehand, we talked, sang, and laughed. He asked me to hug him tight, and I did as he fell asleep. Slowly releasing him before he completely drifted off. Tight hugs are one of the few things that help him calm his body.

Sleep doesn’t come easy for my boy. You can judge and give suggestions, but we’ve tried it all.

My son is autistic and for that reason, his body and mind do not function like most.

I think about that a lot. In many ways, but mostly from my heart.

I want to make his life easier. I want to know how he ticks so I know I can make it easier.

I’ve come to know my son better than anyone else knows him, through the last 8 years, but at the same time, so much is a mystery to me.

As he slept, I ran my hands through his hair and thought about our beginning. I thought about how I have wondered what was going inside his mind since day one.

He was a very alert newborn. Eyes always wide open. Almost as if he were shocked by the world.

I remember watching him for hours at five months old, as he’d roll on his play mat and stare at the toys that hung over his head.

At one year old, I remember specifically trying to explain things to others. Like how he interacted with some people but not others. Or why you really had to play with him to get him to laugh and smile.

At eighteen months, when he got really quiet, I began to yearn for communication. I never knew what he wanted. Everything was a guess.

Two and three were battles with the world. Comments from other people. The meltdowns that led to stares and whispers, even from loved ones.

He rarely slept. I feel like he was often over tired and dysregulated. I read all the books. I tried everything.

Evaluations began, and the idea of autism became a speck that floated around in the air.
Not yet confirmed, just a maybe.

My heart ached just to know. To have an answer.

At four years old, the answer became clearer, and just before five autism was confirmed.

Like I had been doing all the years before, I continued to blame myself.

I thought about every choice I made during pregnancy; did I stress too much, exercise too little, work too often, eat the wrong food, take the wrong medicines?

That analysis continued onto my labor and delivery all those years before. I maybe shouldn’t have eaten all those dates someone told me would start up labor and walked around for miles in an attempt to quicken the process. Was it the decision to have an epidural?

Worst of all, I thought of the prenatal depression I had. Did my distanced state to the baby in my belly cause this?

Every single bonk and little fall he had as a baby even crossed my mind. Then the problems we had with his sleep in those baby and toddlers years. If he got one bit overtired, it was all over. Meltdowns and night terrors came often.

I criticized and analyzed every choice I made as a mother and even before.

Was it in my DNA? Was it from me? I have reading and writing disabilities. Was it connected?

It all ate away at me.

Over the last few years, I’ve realized that I can not do that. I can’t over analyze what I did wrong. That would mean something was wrong.

I know how far I have come. It still stings when I hear the terminology that some doctors and other professionals use when it comes to my son. As if he is a problem to be solved or someone who needs to be fixed.

This sweet boy, with his crazy curly hair and silly sense of humor, is everything he is supposed to be.

Do I wish I knew better how to help him cope, learn, and do all the things he wishes he could? One million percent.

Although we are still early on in our journey, I have learned that those things come with time. As long as we are always working to understand what he needs and how to help him.

The biggest key, though, is the heavy task of changing the world. To reach a point where there is no longer a need to explain him and his behavior, by teaching people about them. Teaching others to accept him and others like him.

That just because his brain works differently, he still belongs. It just means we need to make space for difference.