The first time I ever met someone with Down syndrome was the day my son was born. It was love and heartbreak at first sight.
So much of my life with Arlo is shrouded in juxtaposition, one that is only magnified by his brother and sister who came into the mix in the 9 years since he was born.
Easy and hard.
Arlo is my favorite dining companion at a restaurant. He’s so chill eating his soup, taking his time while his brother and sister are climbing under the table. Yet there have been countless times where he’s refused to enter a new or crowded restaurant. Where I’ve literally sat with him in the entryway trying to coax him to come in while people stepped over us.
In the car, Arlo is content on long road trips. He rarely complains other than insisting on his favorite songs over and over and over. Then there are times where he refuses to sit in his seat. On one trip I had to buy him a new car seat that he could not unbuckle to keep him safe.
Hiking is one of our favorite things to do as a family. Arlo is always game and never complains. But he doesn’t stop. It is a struggle to get him to return. He’ll also go “hiking” whenever and wherever he pleases. Leaving our house, leaving a playground, leaving the soccer field. Elopement is a constant concern.
You know how so many parents wish their children would just be quiet for a moment? Sometimes, when Arlo is in one of his screaming phases, loving the sound of his own loudness, I wish for peace. Then there are the times when I ask him about his day and there is silence and my heart aches. Or the times where he’s run off and I call him and he’s silent and I’m terrified.
Perhaps that’s why I’m so conflicted when it comes to Down Syndrome Awareness Month. Part of me celebrates Down syndrome every day. It is part of Arlo. These extra copies of the 21stchromosome make him who he is. A strong, resilient, unique, brilliant, kind, caring, beautiful little guy. His diagnosis blew up my belief system and expanded my world. I am better because of him. I am thankful for Down syndrome and how it introduced me to the greater disability community.
But this same diagnosis means there is a very good chance I will have to bury my son one day. Down syndrome means there is a 99% chance he will have early onset Alzheimer’s. These extra chromosomes have caused hearing loss, immune system deficiencies, thyroid issues, pneumonia, sleep apnea, and a whole slew of medical issues that alone aren’t that big of a deal, but together are overwhelming for him, for me, for our entire family.
Down syndrome means asking for help. In order for Arlo to get the help he needs in school and in life I have to focus on his deficits every day. I spend hours every month talking about all the negative aspects of my son with his various service providers. Every parent in my shoes knows this is not an exaggeration. The moment you let on that you believe your child is exceptional, those doing the assessments see it as a reason to take away supports.
IEP meetings, Medicaid waiver assessments, care management. If you don’t talk about your child as if they are a burden, they will lose services.
Blessing and burden.
Arlo is a blessing. As hard as some moments can be, I am forever grateful that he is in my life. He has a killer smile. A wicked sense of humor. He works hard. He plays hard. He loves even harder.
The burden is not my son. It is society. We create the burden with how we treat people with disabilities. How families are forced to jump through hoops to get the support we need. How doctors dismiss our children as if their lives are not as worthy as “typical” children.
I was on this planet for 33 years before I met someone with Down syndrome. I’ve traveled extensively, lived in multiple cities and overseas. Yet it took me more than 3 decades to meet someone with Down syndrome. And that infant/toddler/boy has taught me more in less than a decade than anyone else in my life.
Awareness, acceptance, this month, that month. It doesn’t matter. Yet it does. Whatever it takes for us to start opening our minds and hearts and see that we’re all so very different, yet so very similar.