As I sat in the conference room of the pediatric dental office today, I could not help but remember the last time I sat in a conference room for something pertaining to my son’s health. It was just over two years ago at the conclusion of a long day of diagnostic testing. I sat in that conference room and learned that my son had autism spectrum disorder.

I knew that today would be different. I knew that we are just there for a dental procedure. I knew that I would leave here and my life would be relatively unchanged.  But I still could not help but wonder if my last conference room visit and this one were somehow linked. Is the autism diagnosis what brought us there today?

I know that dental work is a normal part of life. I know that there are some things in life that do not give way to age or gender or ability level. I know that hygiene is a part of life. I know that part of my job as a parent is to teach my children about personal hygiene. To help them learn to care from themselves. Just some of the many tools they will need to succeed in the world.

Despite the countless reassurances from the pediatric dentist and his staff; I find myself questioning the truth behind what led us there today.

Sure, teeth brushing and dental hygiene is not the easiest or best part of our day. Most days we need to use timers and social stories and praise just to get him to brush his teeth. Most days it is a game that is 90% play and 10% actual teeth brushing. Most teeth brushing sessions end with a meltdown as my husband or I inevitably take control and brush his teeth. This leads to inconsolable crying. Which leads to hitting and slamming and yelling. And when it is all over we rinse off the tooth brush and put it back in its place to do it all again the next day.

Teeth brushing is hard for us. Harder than it needs to be. But then again, a lot of things are harder than they need to be. But, we push through it because that is our job as parents. We do all of the things that our children need, even the unpleasant ones.

And despite our efforts. Here we are. Questioning if we did enough. Questioning if we let autism and the daily challenges we face get in the way of emphasizing the importance of this personal care.

I question myself because that is what this journey is. Day in and day out we question everything we do. We wonder if we have done enough. We imagine how we could possible do more. We are in a continuous pursuit for information. For answers to the questions that fill our heads.

When our journey lead us to a pediatric dentist specializing in children with special needs, I thought I would be comforted by the new information we learned.

I learned that a large population of the world is prone to decay causing enamel. I later learned that we have a prevalence of this in both sides of our family. I learned that the dentist can tell by looking at the decay if it was caused for environmental/life choices or enamel. I felt a ping of relief to learn that our son did in fact have the decay prone enamel.

This should have been a relief. But I have learned that there is very little on this journey that brings true relief. Because I cannot help but wonder if things were different, if he was different, would we still be here today. If autism was not part of our journey, how many difficult experiences could we avoid? How much pain could we avoid? How much more could we protect our son? Ourselves?

In my heart I know that my son’s autism journey lead us here today. Autism may not have caused the enamel, but autism is not innocent here.

Autism is the reason personal hygiene care is so difficult for us. Autism is the reason we struggle to tears many night to brush his teeth. Autism is the reason it took 4 years for my son to sit in a dentist chair. Autism is the reason that after sixty minutes at the dentist they were still unable to look in his mouth. Autism is the reason that I had to restrain my son with the help of three dental hygienists so that the dentist could take a look. Autism is the reason that my son has to go under full anesthesia to take pictures of his teeth and then take corrective action. Autism is the reason he woke up from anesthesia feeling out of control and scared. Autism is reason he looks in the mirror and screams at the site of the silver caps that do not belong in his month.

No, autism is not innocent. Each and every one of these things are the autism. I know that, and still I can do nothing to change it.

So I ask questions that I know will only hurt me. Questions about what might have been.  I imagine a life and a journey with less pain. For me, but mostly for my son. I know that asking these questions is normal. I also know that no good can come from it. I cannot turn back time. I cannot change the course of our lives. Our journey. His journey.

Our journey will test us time and time again. Today my journey called on me to explain something to my son that he could not understand. Today my journey called on me to rock my little man in my arms as he drifted off to sleep. Today my journey called on me to stay calm despite my fears. To take away his control despite his intense need to be in control.  To let people touch him despite his dislike for being touched.

There will be a lot of hard days along this journey. Today was a hard day. Today I remind myself of how far we have come. And how far we will go. I am stronger and more prepared to walk our journey because of data like today.  That might sound wildly optimistic. And maybe it is. I cannot control a lot of things, but I can control the way I embrace our journey.

Today was hard. A lot of things are hard.  But I am still wildly optimistic. Every. Single. Day.

JS