One year ago today, Bug was officially diagnosed with autism.
We weren't surprised. I remember clearly a Sunday months earlier when, instead of participating in church services, we were watching Bug walk laps around the church gym. We were reviewing the few words he had in his vocabulary in preparation to see his pediatrician and talk about the (little) progress he'd made in his development. It was then we both realized that separately, we thought that he might be on the autism spectrum. But that didn't make the day of diagnosis any easier.
I think I didn't anticipate how hard that day would be. I expected I would cry, but I didn't expect to hardly be able to talk about it out loud for a few days. Though we were somewhat prepared for what was coming, you can't ever prepare for the emotions that follow an official, life-changing diagnosis. We resolved to do whatever it took to make sure Bug got the best care we could provide. We spent weeks looking for houses and jobs in states with mandated insurance coverage for autism treatment. We researched everything we could about autism and potential treatments and potential challenges. All of the unknowns threatened to become overwhelming. In one day, our lives turned upside-down.
The first thing I learned after diagnosis was about love. No matter who I chose to share the news with, I just felt love from everyone. There was no judgement, no disbelief, no tension. I remember clearly everyone we told said some variation of, "We love Bug and all of you. We want to support you and help however we can." If you were one of these people, thank you. Everyone's support meant (means) the world to us.
We also quickly learned that although the diagnosis was difficult, it was absolutely worth it. Fear and stigma can surround any diagnosis, especially an "invisible" or psychological one. Believe me, we were plenty fearful about what life would be like for Bug with a diagnosis forever being attached to him. That diagnosis, and sharing it, has been nothing but helpful. We have been guaranteed help and protections under the law. Caregivers have an idea of what to expect and what treatment may work, all because of the diagnosis.
As silly as it may sound, a diagnosis has been like a call number for a library book. Remember the Dewey Decimal System? The first three numbers always indicate a broad topic. Like language or history or philosophy. Within that topic, the books vary between more specific subject matter, length, and reading level, but they are all related. Bug's call number starts with "autism", and although that doesn't tell you everything about him, it helps give a general understanding of what to expect with him.
We still face plenty of challenges and unknowns. But I can't help thinking about the difference a year has made. Bug tells us about what's going on around him, he shows interest in his peers, his diet has improved dramatically, and we can do things as a family we never imagined we'd be able to do again - everything from going to specific stores and eating out at a restaurant to trying completely new experiences. Discouragement is no stranger, but looking at the bigger picture and every little bit of progress gives us renewed hope. The past year has been a rollercoaster, but rollercoasters are still fun, aren't they?
Hi, I'm Elisa and I'm a friend of Amie Murray's. She told me about your blog. My son Eli was just diagnosed with Autism in July of this year. It's certainly very difficult hearing the diagnosis, even if you do already know, as we assumed too. I'm glad to hear from you that a year has made a big difference with your son. I hope it will for mine also. It's nice to know other people that can relate to what you're going through.
ReplyDeleteHi Elisa! I'm so glad you have found your way over here and have found some hope through us. That's why we have this blog! Please don't hesitate to reach out if you need anything, or just want to talk to someone who understands. Amie can get you connected with us on Facebook or Instagram if you'd like.
DeleteI have been amazed at the progress that we have seen in our little Bug. He is such a joy to be with and each time I am with him I learn so much more from him. As I read your blog on seeing things through his eyes it has helped me to reason with him more easily. He has such an unconditional love even when I don't understand, he is patient with me and helps me understand him better. His knowledge of what he wants grows each day and as his Grammy with the blessing of being able to watch him and his brother from time to time, it is wonderful to know that he can communicate those wants to me and understand from me what I need him to do. He is a wonderful little boy that has blessed the life of not only me but our whole family! We are all much more tolerable of others now that we have Bug!
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