What I learned a year after my son's autism diagnosis

What I learned a year after my son's autism diagnosis

“We are one of the families on this journey that is lucky enough to see progress in the first year.”

This post is by Kate Cortelyou who resides in Nashville, Tenn. with her husband and two young children. She is a retired giraffe keeper turned stay-at-home mom. 

In February 2017 during my sons 3 year well visit, his pediatrician advised me to have him tested for autism. 7 weeks later on April 5th he was diagnosed. Any parent remembers odd details of that day vividly. What the room looked like. What chair they were sitting in. Exactly how long it took for tears to well up in your eyes. What their child was doing when the doctor said, “There is no doubt in my mind that your child falls on the autism spectrum disorder.” James was playing on the floor with trains. Innocent. Barely 3. Unaware of what lifelong label he had just been given. We left the office and drove to Krispee Kreme to get donuts. He was so happy. I was thankful he was sitting behind me so he wouldn’t see me crumble into a million pieces. 

I silently sobbed the entire drive home, thankful the ride was 20 minutes so I would have time to compose myself before looking him in the face. Showing him I was {momentarily} broken was not an option. There was so much of that this last year. Breaking down behind closed doors, unsure of how to move forward. Unsure how we could possibly fight with the school to get his services. Unsure if the therapy we were signing him up for was right. Unsure about everything but finding the strength to dry my eyes, put on a confident face and fight for my son. 

A lot changes in the year following a diagnosis. Changes in routine. Changes in relationships. Changes in expectations. Changes in emotional strength. We are one of the families on this journey that is lucky enough to see progress in the first year. Our son is meeting his therapy and IEP goals, experimenting with emotions and social play and taking control of his meltdowns. He is starting to come up with his own things to say and not relying solely on delayed echolalia. He is excited to go to school-something that took a full two years. I realize we are fortunate. Not all autism parents see such good results in only a year. Not all parents get to hear their child speak. If you are one of those parents you are stronger than me and stronger than you realize. 

If your family just received a diagnosis, I feel for you. Take one day at a time. Find your strength and fight for your child, even if you are sure that everyone around you knows you are scared. I remember the morning after my son was diagnosed, I woke up with eyes puffy from the night before and immediately started crying. I just could not imagine how we would figure this life out. I was so sad. And so mad. Why did this happen to us? Know that eventually the shock and resentment will wear off. But don’t rush this important stage of grief. Don’t let others try to rush you out of it either. Allow yourself to feel that sadness until you are ready to step into this world and be the warrior parent your child needs you to be. There is a quote from Alice in Wonderland that I think is so powerful: “When you can’t look on the bright side I will sit with you in the dark.” Find that person who will sit with you until you are ready. But don’t take too long, your child is waiting and you have an important job to do.

An autism diagnosis will force to you change your expectations. It just will. I still have the same hopes and dreams for my son, but it is not fair to him or anyone in my family to force my expectations of what I had hoped being a mother would be onto him. I hope with my whole heart that my son will find a friend that he wants to invite over to play and not just disappear into a different room to play alone. If I allowed myself to get hung up on the fact that this hasn’t happened yet, I would miss the incredible fact that at school he found a friend whom he enjoys playing with and even talks about at home. When I ask if he wants to invite her over to play he simply answers, “No.” Don’t allow yourself to get caught up in the “They can’t do this yet” game because it will drive you mad. Pay attention to the progress and build off that progress. 

I look back a year later and see all that my family has been through. I can remember printing off the Autism Speaks 100 Day Checklist and willing myself to make it one day at a time. Then one week at a time. Now, here we are almost a year later. We took our time to sit in the darkness and when we were ready, we stepped into the light and began our transformation into the parents we were meant to be. Have faith, the same will happen for you.

Source: Autism Speaks, What I learned a year after my son's autism diagnosis


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