“This wasn’t what my life was supposed to look like… things were supposed to look ‘perfect.’ I like ‘perfect,’ I thrive on ‘perfect.’ I appreciate the pretty, curated pictures on someone’s Instagram feed. I love a clean, nicely decorated house that could be on the cover of Better Homes and Garden’s magazine. I wanted my life to look like that, I worked hard to make it look like that… then all of a sudden, it just didn’t.
My son was 2 years old when everything changed. I mean, it wasn’t a sudden change… because in the back of my mind I knew, but the denial was very VERY real. Autism. I literally couldn’t even say the word out loud for at least a year. I mean, I did ALL the things I needed to do for my baby. I got him into early intervention, we started ABA Therapy, Occupational Therapy, Speech Therapy, he started going to a preschool specifically for children with special needs. I went to meeting after meeting. There were more assessments in that first year than I ever thought humanly possible. I read stacks and stacks of paperwork from schools, insurance companies, and doctor’s offices.
I did ALL the things, and I did all of those things while I was quite literally drowning in the most overwhelming grief I had ever felt in my life. Not only was I grieving, but I was feeling bad about feeling that way. Why do I feel like I can grieve? My son is physically healthy, people have it so much worse… I should be thankful. I wasn’t thankful, I wasn’t rational in my thoughts. I was grieving the life I thought my son would have.
I had big dreams of Little League and one day, being the quarterback of the high school football team like his Daddy was. Dancing with him at his wedding and making sure his future wife would love him like he deserves. All those hopes and dreams suddenly didn’t matter anymore and all I began to wish for him was, ‘Please find your words, please be able to talk to me one day.’
It’s been 4 1/2 years since our ‘perfect’ was flipped outside down. 4 1/2 years since everything in our lives has changed. After a very, very long grief period, I slowly began to catch my breath. I decided I would do absolutely everything in my power to give my baby boy the life he deserves. I exhausted every resource available. I did everything I knew to do… but in doing that, I knew this special needs world that was now my reality had so many ins and outs I knew nothing about.
I remember vividly, sitting in an IEP for Easton. There were at least 10 people there other than me. Teachers, coordinators, administration, therapists, psychologists… I listened to them for what felt like hours. They sat there, straight-faced, and talked at me, not to me. They talked about my son like he was a statistic and not a person. They went on and on about his ‘present levels’ and told me over and over and over again how far behind he was his ‘typically developing’ peers. It was HEARTBREAKING.
I sat there and remember thinking how absolutely terrible it was, how I just wanted one of those people to understand just for a second how I felt, how hard this was, and to just be a little bit more compassionate and a little bit less ‘professional.’
4 years after that first IEP that made me feel weak, things are a whole lot different. I decided if I wanted things to change, I needed to not talk about it but be about it. I am currently in my third year of teaching and am very proud to say I am now a Special Education teacher. I get to be on the other side of the table at those IEP meetings now. I get to look at those parents who are grieving, who are uncertain of their child’s future, and I get to tell them I understand how they feel… and mean it. I get to point out to them all the things that make their child amazing and unique and worthy, and I don’t ever say anything that would make them feel like their child is less than because there isn’t one thing that makes them less than.
Things are different now. I’m no longer grieving, I’m no longer hiding. I can say the word ‘autism’ openly and talk about my son without tears welling up in my eyes. Are there still hard days? Hell yes…. a lot of them. The system is flawed, I have to fight constantly with schools and doctors and insurance companies. The only difference now is when I decided to fight for my son, I decided to fight hard. I dove in with both feet. I educated myself, I got my Master’s degree in Special Education so I knew all the laws, and all of his rights so now I know exactly what my son legally deserves. I no longer get to be unknowably pushed around.
My son is 6 now. He is still mostly nonverbal and is considered (on paper) severely autistic. However, all of that stuff that’s ‘on paper’ doesn’t mean anything. My son is the sweetest child I have ever met. He is loving, he is happy, he is worthy. He is a light and he has changed my entire world for the better. I will forever be thankful God’s plan was so much bigger than my own. I will forever be thankful for Easton, for being exactly who is. I will be thankful he is truly perfect.
I did get my picture-perfect life, I didn’t know it back then… but this is our story, this is our life. It’s messy and it’s raw and it’s flawed, and all of that is okay. We’re okay. To me, it’s perfect: my son, my life… our journey. It’s all perfect, for me.”
This story was submitted to Love What Matters by Laurie Morris. You can follow their journey on Instagram and Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more powerful perspectives from special needs moms:
‘They whispered to each other. ‘How can that be?’ My heart sank. ‘He doesn’t seem THAT different. It must be a mistake.’: Mom surprised by son’s autism diagnosis, ‘We just chalked it up to ‘every kid is different and learns at their own pace.’
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