The First Year of Autism

It has been one year since my youngest daughter, Joelle’s autism diagnosis.

One year of so many firsts and so much learning for our whole family! 

The first lesson I learned was that finding therapies, securing them through insurance, and maintaining these therapies is like a second full time job!

There are just not always enough hours in the day!

We chose to start ABA therapy, speech therapy, occupational therapy and feeding therapy. Basically anything I could find services for, which, due to Covid, was hard.

I also joined many online parent support groups eagerly searching for what others had to say about their child and their journey. Hoping to find out what they have learned and what they have tried. What did and did not work. What they wish they would have known and would have done.

Trying to figure out how their story can help me prepare better and do better…for Joelle.

I have learned the most from my parent peers in this last year, including no two autism journeys are alike.

This makes finding the right path for her a long road. There is no easy and quick route. Just a lot of side roads, back roads, and county roads full of potholes. The right path is never clearly labeled and you don’t know if it’s a dead end until you’re there. 

Each day has brought so many new decisions, yet somehow very few choices….  

In the midst of this past year, Joelle has been through 4 speech therapists, 2 occupational therapists, and so many behavioral technicians I have lost count.

None of these changes were by choice.

A mixture of insurance issues and staff turnover has been a nightmare we can’t seem to escape. I feel her progress has been limited by continuity of care issues and Covid. 

So many missed opportunities and so much wasted time. 

Yet, despite all that was stacked against her, we have seen so many gains!

More words, better emotional regulation and more smiles! It makes my hours spent advocating for her, fighting insurance, and completing all the therapy appointments worthwhile.

Because no one tells you, when you already have hard at home, sometimes dealing with the outside world will be harder. 

At times, my pleas for help seem to have gone unheard, unseen, and unanswered.

I just want what is best for Joelle. For her to have the brightest future possible. Why can’t accessing that just be easier? 

But through all the trials of this year, I have truly learned the meaning of resilience.

Joelle is not only my motivation, she is my inspiration. She has handled all these changes and hurdles like a champ. Always moving forward, never looking back. Greeting each new provider with a smile and ready to work.

I may not know all the right answers, but I will keep trying.

I love her so much! 

And I am so thankful for those have helped Joelle and I along the way this year. Even through the hard, there have been new friends met online and therapists who made an impact in our lives. They became part of our journey, and Joelle’s story.

I will never forget that. 

And I will never stop advocating or pushing her to learn and grow.

I have big hopes and dreams for Joelle…along with self care skills and more independence, I also hope for increased communication.

I long for a conversation with her, in whatever form that may be.

My dream is one day after picking her up from school I ask her, “Did you have a good day today?”, and she will answer me.

I feel worlds truly can’t explain all aspects of this journey, but they can help paint a picture and give others a glimpse into a world they may never fully understand.

And I vow to make year two a picture full of bright colors, smiley faces, hope, and love.

A masterpiece…even if it’s more of the Picasso type.

Written by, Laci Maynerich

Laci Maynerich is located in Central Illinois. She has been married to Mark for 12 years. They have two beautiful daughters, Molly (11) and Joelle (3). She is also a full time school nurse! Their family is still just beginning Joelle’s journey with autism. 

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