A Whole New World
Wyatt,
My sweet Blue April Boy. I will never forget the day that changed our lives forever. It was November 11, 2019. You were just 2 years old, and your life sentence was handed down. Severe, level 3 Autism. Your dad and I weren’t shocked at the news. In fact, we saw it coming. Just days before we spent hours with a Developmental Pediatrician, she asked me so many questions about you, she watched you and she reviewed our mountain of paperwork sent over by your many therapists and your primary care doctor. You climbed all over me the whole appointment, never sitting still. You were entertained by the cabinets in the room, although there were many toys available to you. Additionally, at 2 1/2 , you had zero words. You had never uttered a peep. You had never called me Mama. Your silence was heartbreaking. The car rides with you were hard, the silence eerily loud. Your doctor seemed so surprised when your dad and I didn’t react in a super surprised way. I think at first, I was relieved. Relieved that I wasn’t crazy, that there was a reason for all the worry that was heavy on my heart. That there was a reason you were not hitting milestones, loved spinning car wheels, banged your head on the floor, and cried a lot. Unexpected and sudden large bursts of tears, over seemingly nothing at all. Now I knew that you were struggling with the sensory overload of the world. Most of all, I was relieved that I wasn’t a bad mom. I had honestly starting to believe that I just wasn’t cut out for this mom stuff whatsoever.
Within a few days’ time, the news really set in. I am sad to say that I fell apart. I couldn’t stop crying. I wasn’t sleeping, I could barely eat. You see, baby, I thought autism meant that I would never hear your voice, that you would never have a meaningful relationship, and would be at the mercy of the bullies you would encounter in your life. I couldn’t stop there; I let my mind wander to all of the ‘nevers’. You may never drive, and never fall in love, never graduate high school and by far the worst one, never find happiness. I was mad and bitter at the families who escaped this. I was lonely and isolated.
Slowly, I put myself back together (enough to function) and I knew we had a lot of work to do. We had a hard road ahead. With an autism diagnosis in hand, we applied for state funded insurance, we interviewed ABA (Applied Behavior Analysis) companies, we got every therapy set up; including occupational therapy, physical therapy and speech therapy too. Even though we had every tool to move forward, there was a bit of heartbreak in the realization that this was a new normal. You and your brother would be toted around to every therapy center in the areas surrounding us for years to come.
I want you to know that although I still grieve sometimes, it is because I wish the world understood there are invisible disabilities. As you are getting older and bigger, I see the people watching. I fear that I won’t be able to shield you from that forever. I promise you, my son, that I will do my best to advocate for you and everyone like you, because if they could see you the way I do, they would understand. If only they could see your amazing sense of humor and your mischievousness. The fact that you find joy in things that others cant seem to make sense of. And your laugh! Your laugh is so infectious. So, I am going to share our story with the world honey, so that they can try to have a better understanding. Oh do we have some stories too! Stories of amazing therapists who basically became family, stories of discrimination, stories of celebration. Navigating special needs, is a whole new world but we’re doing it.
That being said, I want to tell you, Wyatt, that I will never give up. Mommy will never stop fighting for all the things you want, need, and love. Although I still have many days where the unknown defeats me, I am in love with getting to know you. My love for you is endless, and unconditional and I can’t wait for whats to come.
Love,
Mommy
