I wanted to write about the stages of emotion we experience going through the diagnosis process. How its completely normal to feel like your world just shattered around you and you’re not sure how to move forward. It’s not easy but you aren’t alone (although it can certainly feel that way).
When it was first mentioned to us that our son might be on the spectrum, we didn’t think that could be the case. That was until we researched autism and realized Elijah fit the descriptions almost too well. I cried right then. I didn’t have a diagnosis, but I knew. 2 months after he was evaluated by Child Find, we were brought into a room with about 6 specialists where they told us he is “highly likely” on the spectrum. Then they proceeded to talk about the many things that led to their decision. 10 minutes in to doing his IEP, I started crying. My husband was handling it okay, but I think seeing me cry broke his heart a little bit. I was supposed to be strong and get through it, right? I composed myself pretty quickly but the thoughts almost consumed me. I couldn’t stop thinking about how difficult his life will be, I wondered if there was anything I could have done to prevent this, I cried thinking about how perfect he is to me, and yet I’m sitting here listening to these specialists go on about his delays and challenges. When we got the official diagnosis from a neurologist, we weren’t surprised. We had already grieved and accepted it.
In my Intro to Special Education class, we learned that getting a diagnosis for your child is similar to the grieving process of losing someone. You can experience denial, anger, guilt, depression, and acceptance. I went through it all, and came out of it with a better understanding of my son. Our lives haven’t changed much, now we just have an explanation for our previous concerns, and our son gets the schooling and therapy he needs.
Guilt was what I struggled with the most. Elijah had started trying to talk around a year old, then around 18 months he just stopped. He wouldn’t say new words and he stopped saying words he had previously been able to say. I thought it was my fault- had I not worked with him enough on speaking? Maybe I should have read to him more. I learned from his speech therapist that it’s called regression, and he would have more than likely regressed in his speech no matter what we did. She knew I was blaming myself, and I realized my guilt was doing nothing to help my son.
Now that I have learned so much more about autism and I am in school pursuing my degree in special education, I feel like that grieving process was just what I needed to get to this point. I’m completely honored that I get to be my son’s mom, that I get to see his unique personality every day. Stay strong and remember, its not easy being a special needs parent- but we are because we can handle it!