“You are wasting my time.” These are the exact words that my son, Eli, said to my husband and I last week when we formally told him that he has autism. I had played this moment in my head for years and his response was not what I was expecting. However, this journey that we have been on for the last 11 years is not what I was prepared for either.
To give you some background, I did not have a typical pregnancy. At 29 weeks I started going into labor. Luckily a great team of doctors and nurses were able to stop my labor. I remained in the hospital on strict bed rest for 3 weeks. I ended up having my son at 32 weeks. He was very small but generally pretty healthy, all things considered. He remained in the NICU for about a month so he could grow. We were thrilled when we were able to take Eli home. We thought the stress was behind us. However, little did we know that the stress and worry of a parent is never ending. Eli began to miss most of his milestones after he was 1 year old so we enrolled him into Early Intervention through Hanover County where he had an amazing team of therapists. However, all of my fears became reality when we received the formal diagnosis of autism before he was 3 years old. After our shock and grief subsided, we realized that autism was not a death sentence. We began to throw Eli and ourselves into any and all speech and occupational therapies, support groups, athletic teams for kids with special needs, etc.
Eli has been in speech and occupational therapy since he was 18 months and in special education classes before his 3rd birthday. My husband and I often speak the word “autism” around Eli but had not had the “formal” conversation of telling him that he has autism and what that meant. Mainly because we were waiting for the day for Eli to asked “why am I different” or “why do I have to have buddies when I play sports?” I was waiting because I had a great response planned. I was looking forward to next month because I was sure that Eli would ask “Mom, why do we participate in the Autism Walk?” My inspiring response would have gone something like this:
“We walk because you are brave without knowing it. You encounter noises and textures on a daily basis that make your body uncomfortable yet you continue on. We walk because you make me proud! We walk because you teach me how to be a better person. You have made me a better mother and a more compassionate person. We walk because you are a gift! We walk because you are smart. You see things in such a different way. You see the small joys in a spinning washing machine, an opening door or the smell of bubble gum. We walk because you give me insight! We walk because other families do not have support that we are blessed with. We walk for more information and research! We walk because one day a person will tell you that you are different and not typical and they won’t do it nicely and your feelings will be hurt. We walk for understanding! We walk because you are my son, a grandchild, a nephew, a cousin and a friend to many. We walk because autism has affected and changed ALL who love you for the better!”
However, I had to change my response when I registered our family to attend an “I’m Determined” class last week. They encouraged you to bring your child to the meeting and begin teaching him advocacy skills. My husband and I thought it would be helpful if we sat Eli down and gave his challenges formal name- “autism.” So I told Eli that we were going to attend a meeting that would help him be able to explain to people why his body gets elevated and why he becomes very anxious when his schedule changes and why looking people in the eye is difficult for him. Then I explained to him that he has autism and it simply meant that he learns differently and before I could explain more his immediate response was “you are wasting my time.” I was so caught off guard by his response I decided to end the conversation shortly thereafter thinking he wasn’t understanding me.
I didn’t know whether to laugh or cry. I had played this exact moment in my head and had imagined that explaining autism to him would give him some understanding or peace regarding his challenges. I envisioned that he might have even cried but I would have helped him make sense of why he has challenges and why he processes the world differently but none of this happened. It wasn’t until I talked to my very insightful 23 year old niece and I was telling her about our conversation that she made sense of it for me. She said “Jen, don’t worry about it. It’s like you telling him he has brown hair. Autism is something that doesn’t define or restrict him. I know it’s been much more of a journey for you than him so I can understand your emotions. But his disability is essentially a non issue to him. That in itself is something to celebrate!”
And so there you have it. I am a mom that had dreamed of having a child (without autism) and teaching him so many things about life and yet I have a child with autism who has taught me more than I will ever teach him. He has taught me that every little success/milestone in life is a big success. He has taught me that the little things in life matter- like noticing that a road has been paved or a door has been painted. He has taught me that it feels good to just flap your arms every once in awhile. He has taught me to see people’s abilities and not their disabilities. He has taught me that seeing the world differently is a gift. He has taught me what pure joy & happiness look like. And he has taught me not to waste his time on trivial things… like the word autism.
Jennifer Barnum is a wife and mother to an awesome son named, Eli! She is an autism warrior and advocate. She serves on Hanover County Special Education Advisory Board, serves on Cool Spring Baptist Church Special Needs Ministry and enjoys coaching special needs basketball. She has worked at Royall & Company for the last 12 year and is a Client Services Operational Coordinator. In her spare time she enjoys spending time with her family and friends, shopping and taking her son to hotels- he has never seen a hotel pool he didn’t love!