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Harpers Beginning Part 3

Waiting for this diagnosis just didn’t seem reasonable anymore. We were seeing a spike in behaviors like meltdowns, elopement, self harm, constant movement, not sleeping. I started looking into private companies that did autism evaluations. I found one and they only had a wait time of 3 months. I was so excited, I felt like that seemed more reasonable for our family. What’s crazy is this appointment fell through. They had a dr leave the office and couldn’t reschedule us at the time. I was devastated but now I know why this happened. God has big plans for us and just know that when things change and you’re upset something even better is probably coming. 

The next place I found was Hopebridge Autism Therapy Center. I called and the wait was 3 months. I immediately said schedule us. We waited and on July 12 2022 we received Harper’s diagnosis. The doctor that gave us Harper's diagnosis was very honest about Harper, her behaviors, and her diagnosis. At the time it hurt but now I appreciate his honesty. I needed it. I asked him to explain what Autism was like for Harper. I wanted to know what she was seeing. 

This is what he said. “Imagine living in a world with only animals and you’re the only human. You don’t know how to communicate with them and they can’t communicate with you. You have no understanding of why they do things or what they are trying to show or tell you. That is autism. Autistic children benefit from ABA because they need to learn the social skills before they can learn the educational skills.” I also asked is this because of me? I wanted to know did my surgery during pregnancy cause this. He said “No, autism is caused by a genetic mutation, you did nothing wrong” I needed that as well. I was in tears thinking that my body hurt or let down my daughter during pregnancy it killed my soul. Our kid as are supposed to be safe in their mothers womb. Thinking that my body’s failure caused harm to Harper had ate at me for so long. We did learn about Harper and Dallas’ genetic deformity after diagnosis and I'll share that in another blog.

At the end of our appointment he highly recommended ABA for Harper and felt like she would be a great candidate. We got the ball rolling for ABA and it just took off from there. Harper started Part time ABA 5 days a week on Aug 16th and switched to Full time ABA 5 days a week in October. She flourished. She grew in ways I could have never imagined. She started saying some words. Mostly scripting and echolalia but it was better than the complete silence we had been having for so long. Hopebridge I say was my saving grace. They supported me as a mom of a special needs child and supported Harper. They were able to teach her great life and communication skills that make her life easier everyday. When we stopped going to ABA in order to switch to kindergarten I sobbed for days prior to that last day. They were my security blanket through this new diagnosis and I was very sad to see them go. 

Now we are fresh into kindergarten. It has come with its own challenges just like anything else that’s new. But I’m excited for Harper and this new journey. Harper is smart, funny, loving, energetic, sassy, naughty, and a shining light.

Autism is a forever diagnosis. It doesn't go away or disappear after a certain age. I'm not someone that can stand in front of people and speak but what i do know is i have 2 children that are level 3 autistic and non speaking. This part of autism, the severe side, is not shared a lot. I know one day I will have 2 autistic adults and I can’t sit around and not speak about this world of autism that we live in everyday. I truly believe that the more people know about autism or see someone that’s autistic is the only way they can learn to embrace them in the community. 

Our world is a scary place. I can't change the fact that my children have autism but I hope that speaking about our lives and sharing about autism can change even just a little piece of the world for my kids. I’ll never stop fighting for them.



This piece was written by Shelby Shivener. Autism On the Farm & Advocating for Autism on Facebook. 

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