Why I Put Autism in the Middle of our Lives

Autism is a part of our life every single day. So many of the ways we recognize and adapt to autism have become second nature for us. But, as natural as our life with autism feels to us today, I would not say that we “forget” about the autism. It is actually kind of the opposite of that.

This may not make sense to you. Most days it still does not make sense to me. I cannot forget about autism. I will never forget about autism. It is impossible. Why you ask? The answer is simple, although also painstakingly complex. I will not forget about autism, because I put autism in the middle of our lives.

That might shock you. The idea that I would knowingly decide to put autism in the center of our lives. But, I did.

Autism came into our lives without warning. We were not prepared to be the parents of a child on the spectrum. Like most first time parents, we were not even fully convinced that we were prepared to be parents to a typical child.

Autism was not in our lives until it was. And then in an instant it was everywhere.  It touched every single piece of our life. Our family, our friendships, our home, our finances, our possessions. Nothing was off limits.

Autism took things. Big things. And even though now we can recognize that it gave us other things in return; there is no way to find comfort in that at the beginning of diagnosis.

One day at a time we learned to live with the autism in our lives. We stumbled around a bit to find our footing. We approached some days feeling tentative and unsure. On those days we were careful to sidestep through life; strategically avoiding well disguised autism landmines. Other days we charged through life feeling bold and brave; sure that we could outrun autism.

But neither of those angles worked for us. We could not side step through our life. And we could not outrun autism. Both efforts left us feeling exhausted. Defeated. We were empty and depleted and in no shape to face the next day. Autism was winning in a big way.

So we changed up our strategy a bit. We put autism in the middle of our life. Why? Because now we know exactly where it is. We put it where we could see it. Where we could learn from it. Where we could always have an eye on it.

I know that autism impacts everything that we do. Some days there are small impacts; things that you may not see or recognize unless you know where to look. Other days the impact is large; you might as well put a flashing light and divert traffic. Uncertain of what each day will bring; we plan for anything.

We understand that autism is a lifetime diagnosis. So we choose to spend our lifetime learning how to make the intersection of “autism” and “life” as smooth as possible. For us that means acknowledging autism. Planning for autism.  For us that means not being afraid to say “our son has autism.” It is not an excuse. You will never hear me use my son’s diagnosis as an excuse.

Autism is an explanation. It is verbal confirmation that there is something real in our lives. Something that we are working through. Something that we struggle with from time to time. Something that makes us different from other families. A constant balance in a million different directions. A journey that has no end.

At first I put autism in the middle of our lives because I could not find a box large enough. I wanted to tuck it away and put it on a shelf. I wanted to give it an on and off switch. I wanted to be in control of the autism in our lives. But I quickly learned that there is no box large enough. There is no switch. And there is no controlling autism.

Today I put autism in the middle of our lives because I am not ashamed of my son’s diagnosis. I am thankful that his diagnosis provided a map for our journey. I am thankful that with each passing day we learn a little more. Each day we feel a little more comfortable along this uncertain path.  I am thankful that we, autism and our family, have learned to live in almost-harmony.

It is not perfect, but is is so good!


Hard Work, Hope, and a lot of Love

One of the most amazing gifts of parenthood is the hope we feel when we look at our children. We hope that they will be kind. That they will reach all of the potential that we see inside of them. We hope that they will learn from their mistakes. We hope that they will blaze their own trails. March to their own drums. Dance when no one is watching. We hope that their journey through life will be free of pain and hardship. And we hope that we have given them the tools they will need to survive whatever comes their way.  We hope beyond hope that our children will be happy. That our children will be loved. That our children will have as much hope in themselves as we have in them.

Our hope for them becomes a part of us. And one day at a time the hope we feel for our children entwines with the hope we feel for our own lives. The hope we have for our children grows as they grow. And, while parenting is an uncertain journey, there is always certainty in the hope.

One year ago in April I sat in front of our IEP team. Over the course of my son’s 4K year this became a very familiar scene. It had been a tough year. The end of the year lingered in the not-so-distant future. Frustrations were high. Patience was dwindling. Fresh ideas were running dry.  And there at that table surrounded by familiar strangers something significant happened to my hope.

“We do not believe that your son can be successful in a traditional Kindergarten classroom.”

Those words cut like a thousand stabbing knives. They cut deep inside of my heart. Of my hope. And as the words cut through me I tried to understand the profoundness of their meaning. For my son. For me. For my family. For my hope.

I love my son. I love him through every single bump of our journey. I loved him from the second I first heard his heart beat; long before I ever held him in my arms. I loved him through every milestone; even the ones he passed much later than expected. I loved him through the scary unknown months. I loved him through diagnosis and every day since. Because the love I feel for my son is never-ending. Unconditional. Loving my son is the only thing that I am truly certain of.

And my hope for him should be no different. But there on that day someone else tried to take control of the hope I have for my son.

I left that IEP meeting feeling sadness and disappointment and frustration. I left that meeting feeling angry. And as I sat in my anger I realized something important. I was not angry because of what they said; I was angry because they were wrong. And just like that my hope for son multiplied. It filled up every available space inside of me.

We worked harder last summer than we have ever worked. While other children were at the beach; he was in speech therapy. While other children were on camping trips; he was in outpatient occupational therapy. While other children were playing with friends; he was playing with behavioral therapy technicians. For thirty hours a week all summer long he showed up and worked hard. And it was not always easy. It was rarely without a fight. But we knew that had to forge ahead. We let our hope for our son guide us through it.

Today was his last day of Kindergarten. He completed a full year of traditional kindergarten. And do you want to know something else? HE KILLED IT!

In April he was released from his Speech IEP. Due to his tremendous progress he no longer qualifies for speech services. My son. The same boy who communicated through grunts, gestures, and 20 words until he turned 3. That boy no longer qualifies for speech services.

In 4K he had one-on-one aid coverage for 90% of his day. In Kindergarten he had one-on-one aide coverage for less than 40% of his day. This year he was making choices about sensory breaks. He learned to ask for breaks when he needed them. But more importantly he learned how to communicate when he did not want a break. When he wanted to stay in the class with his peers.

This year around the IEP table there were a lot of smiles. We have always written IEP goals around duration of tasks and behaviors. “Participate in an activity for 2 minutes.” or “Participate at the table for 3 minutes.” This year his IEP says that he will complete tasks “to the extent and duration of his typical peers.”

“TO THE EXTENT AND DURATION OF HIS TYPICAL PEERS.” I still cannot say that out loud without tears welling up in my eyes. Because we did that. All of us. We all made sacrifices. We said “no” to things that sounded fun because of our commitment to our son and his treatment. And don’t get me wrong, there is a lot of fun in our life! But there is a lot of hard work too.

Today I am beyond proud of my son. I am filled with so much pride for him and his tremendous accomplishments. I am so thankful for the incredible team of teachers and technicians and family and friends that surround us every day; good, bad, and just plain awful.

I have never been more certain that his life is going to amazing. I have never had so much hope for him and his life. And no one will ever take that away from me. No one will ever take that away from him!