Celebrating Endings on a Never Ending Journey

Not so long ago I can remember subscribing to the belief that our journey with autism would never end. When you find yourself face to face with a lifetime diagnosis; the feeling of permanence comes naturally.

When I picture our lives moving forward I always see the autism in the middle. I see autism firmly rooted in the middle of my family. In the middle of my home. In the middle of me. Autism is as natural in our house as air. And each and day we inhale and exhale autism. Some days it is a quiet calm breath that we feel deep down in our core. Other days our breathing is labored; finally catching our breath just to lose it again. And some days we only recognize that we are breathing at all because by some wild miracle; we are still alive.

And you go on this way day after day. Week after week. Month after month. Year after year. You go on this way because it is the only thing you know. You go on this way because there is no other choice.

So we inhale autism in; and exhale autism out.

There are so many things I never expected when we first received my son’s autism diagnosis at age 2. I never expected it to be so difficult to find affordable services. I never expected to feel so completely tired in my soul. I never expected the connections and sense of community. I never expected to slowly learn to love little pieces of the autism in our lives.

You see, a lot of days autism feels like a blade. But every so often autism becomes a warm blanket. It is our diagnosis. And sometimes we curl inside of it.

Today I still subscribe to the idea that autism will always be a part of our lives. I know that my son will continue to grow and change and evolve. I know that just when I think I have him figured out; he will pivot and become something new to me. I know that we will continue to breath autism in and out of our lives every single day. On repeat. Forever.

But today the breathing is easier. Today we learned that even on a never-ending-journey sometimes, things end.

Today, on our 5 year ABA anniversary, my son was discharged from ABA.

Maybe I should be able to type those words without crying, but I can’t. I can’t help but cry as we close this chapter that has defined nearly every moment of our lives for the past 5 years.

I estimate that my son spent 4,680 hours of his life in ABA therapy. That is equivalent to half of an entire year. 182 days.

I feel such a mix of emotions. I am overcome with pride for my son. And, I am overcome with pride for my husband, our youngest son, and myself. Those 4,680 hours were some of the best and worst of our lives. And we walked every minute of this journey together. Always looking ahead with hope and determination.

I feel so thankful to the incredible team of people who have been a part of this journey. 21 technicians. 5 case managers. 1 BCBA. 2 Speech Pathologists. 1 OT. And the most incredible clinical program director. These people were our life line in so many different moments. There were days when we just prayed for that knock at the door. We lived for the moment we could welcome relief and solace into our home. I used to feel ashamed of those feelings, but now I am not ashamed. Those feelings were real. And they were mine.

As we sat “face to face” via telehealth today I told our team that it feels a little bit like we are kicking out the beam…and praying that the roof does not collapse. We all laughed. But, I was not kidding.

I am prideful. I am thankful. And I am just the slightest bit terrified.

Inside of our four walls, while the world is literally chaos around us, we are living in peace with autism. Because somehow, when we least expected it, we made peace with our journey. We stopped looking for a way off of the ride and started to find joy along the way. We understand that sometimes on this journey things will end; to make room for new things.

What happened today is not the end of our story. Tomorrow we will wake up and turn the page. We will breathe autism in; an exhale autism out. We will continue to work hard every day. And with one foot in front of the next we will continue to walk this journey.

Today. Tomorrow. And for the rest of our lives.

*This post is dedicated to our incredible team. We will miss you deeply and we will carry you with us always.

One thought on “Celebrating Endings on a Never Ending Journey

  1. Cherie Ackman says:

    Beautiful thoughts Jessica. Your articles are always so informative . You give hope to families living through
    Autism, but with a heavy dose of reality. Kudos to you and your family for loving and never giving up.😍

    Like

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