The 10th birthday is a milestone for any child. Double digits. Officially a tween. Not a little kid, but certainly not a teenager.
It’s also a momentous occasion for their parents. A time to reflect and rejoice. For most parents 10 means that more time has passed with your child under your roof than you have left. In 8 short years, your child will be an adult. They’ll be off to college or trade school or looking for work. They’ll be spreading their wings.
Of course, that’s an ideal that doesn’t exist for many of us. That “typical” dream that was shattered when our child was born or diagnosed. When you discover your child has a disability, the wisdom passed down from generations and shared in parenting books doesn’t apply. We must pave our own way.
My first born turned 10 this month. We celebrated for 3 days. It was joyous. All Arlo asked for was a Spiderman cake. He got that and more. He’s proudly boasting to anyone who will listen that he is 10-years-old.
Now it’s my turn to celebrate. Arlo’s birth was a sort of rebirth for me. My son has transformed my existence on this planet in almost every way. I am not the same person I was a decade ago.
One could argue that this is true of any parent. It’s not. Not to this extent. My son has fundamentally changed me in every way; from the parent I thought I would be, to who I am as a daughter and friend, to my role in the community, to my career.
My connection with Arlo started before he was born. He and I were one from day one. When his movements slowed before his due date, I knew something was wrong. Had I not recognized this, had my husband not insisted we see the doctor immediately, Arlo would have died before he even entered the world.
We found out he had Down syndrome in the hours after that crisis, while he was in the care of doctors. We were blindsided. All testing indicated our baby was “normal and healthy,” whatever that means. I was separated from him in those first weeks while he was in the NICU. I didn’t feel whole unless I was next to him.
One moment I was an expectant mother, the next I was a “special needs” mom. I was flung into a new world with its own lexicon of jargon and acronyms I had never heard of before. I rarely went to the doctor pre-Arlo. Now I had to find an entire team of specialists for my son and visit them often.
I was confused and in excruciating pain. The emotional trauma hurt more than the emergency C-section I was recovering from. Mourning this beautiful child because I understood nothing about disability. Arlo was the first person I had ever met with Down syndrome in my entire life. At the time, I was fixated on the revelation that I could very well outlive my child, a possibility that still haunts me.
It is not natural to feel devastated when you’re holding your beautiful newborn with an entire life ahead of him. This is particular misery is one that parents like us know too well.
Of course, a decade later – I know that the grief I felt was natural. Almost every parent of a child with a disability experiences it not just at the time of diagnosis, but throughout their life. Society’s treatment of people with disabilities feeds into it. Segregating children with disabilities into self-contained classrooms. The lack of accommodations like ramps, accessible bathrooms, adult-size changing tables. Making employment difficult and in some cases impossible if you have a disability or care for a child with one. Community based services are still in their infancy, after all.
It’s 2020 and we’re still putting children in therapy so they conform to our abled-bodied norms instead of letting them stim or fidget or make noises that bring them comfort. Instead of accepting people for who they are, venturing out of our own comfort zones, we are forcing them to fit into our narrow-minded, outdated views of public decorum.
Of course, it’s taken me 10 years to learn all of this; it will be a lifelong study. I spent the first 5 or so years of Arlo’s life skipping the playground for speech therapy, prioritizing occupational therapy over playdates, and putting his physical therapy ahead of my own self-care.
This time has taught me that person first language and disability pride language are equally important. It has taught me that as repulsive as the r-word is, there will always be a word that inflects pain. It has taught me that ableism is everywhere, even in myself, and we must gently encourage each other to change. It has taught me that Arlo doesn’t need to be fixed, he needs to be a kid just like everyone else.
This decade has toughened me up. Early on I would be left speechless by the daily hurtful comments and stares we’d get. Now I stare back and speak up. I have found my voice and I am helping my children use theirs.
It’s more than lessons though. In the ten years since Arlo was born, I transformed my career, using my journalism background to write about disability and help families like ours. I have immersed myself in the disability rights movement, becoming an advocate. I participate in local, state, and federal government. I serve on my school district’s school board, honored to share the special education knowledge and perspective I’ve acquired.
Most importantly, Arlo has made me a better parent and a better person. I don’t sweat the small things because I truly know the difference. Having a child with a disability gives us an in-depth understanding of the human condition not just through caring for them but because of who we meet through them – their peers, their therapists, their doctors, their nurses, their teachers, their friends, their employees. All of the individuals who have touched Arlo’s life have their own unique background, something that has put them on this path that led us to each other. We are all richer because of disability. We have developed greater empathy, compassion, and patience along the way. There’s also the warrior that comes out when needed, most often on the phone with insurance companies or in IEP meetings.
Having a child with a disability forces you to grow up, it prematurely ages you, and it makes you wise beyond your years. The life experiences of my husband, my children, and I are so different from what our siblings, peers, and even our own parents have gone through that sometimes it feels like we’re living in different worlds.
Here’s the secret that only families like ours know: it’s worth it; the good, the bad, the silly, the sad. I wouldn’t change Arlo for anything. But I will continue to make the world more welcoming and understanding, it’s his world too after all.
A decade with Arlo has been the greatest gift. How lucky am I to have many more with this amazing, not-so-little dude.