It is not uncommon that I have my 3 children out in public with me while I run errands or go to a birthday party or some other adventure. While we are out and about sometimes people lovingly stare and sometimes their eyes meet his and they quickly glance away. Every once in awhile someone will say, "Oh, I hear they are so happy." or "My son has a kid in his class with Down syndrome and he's so sweet or joyful."
Can I just say, I hate this language, and let me tell you why...
We live in an extremely unaccepting world when it comes to children and adults with disabilities. From the stares that suggest we should leave because a child is having a fit or being too loud, to the requests to leave because of those things. From the inaccessible playgrounds, restaurants, sidewalks, and homes that don't allow everyone to join to the cultural expectations that we act a certain way in certain places. These things make it extremely challenging for many of us to venture out.
Recently we had a pool party to celebrate a pregnant mom and her husband in our church and during the party my 9 year old son proceeded to get completely naked and run around. I don't know why he decided to be naked. We have talked about how nudity is allowed in bathrooms and bedrooms. We have worked with him specifically on this issue for over 2 years, and alas our first house party with a variety of children he decides to run around naked. I looked over- saw him naked- of course it didn't surprise me and I ushered him into the house and he got dressed in his bedroom and I apologized to our guests, but I also said, "If you come to our home you're gonna get some nudity." There was laughter. I chose not to make eye contact with anyone because I had zero desire to meet appalling eyes. At this point the people in our home are familiar with our family craziness... But friends this is the reality. Bentley might get naked after he swims even if we have talked about it for years at 10 or 15 or even 50. He's a little bit unpredictable and completely capable of making such choices. So don't be surprised. And please, have compassion.
This morning I lost track of Bentley for about 10 minutes and I found him watering the pavement (we live in the desert and water is a scarcity and we already probably use too much) and he was watering down all the windows. Yesterday he got mad at me and kicked my seat repeatedly because he wanted the front seat, not for me to have it. The other day he poured out a whole bottle of vanilla because he wanted to make cupcakes. When I am asked if he can use the bathroom alone I always hesitate. 90% of the time the answer is yes, but there is always a chance he'll unload an entire load of toilet paper and clog the toilet. He's also extremely stubborn. While my other 2 children are by no means perfect and give me my own set of headaches they cannot touch the level of chaos that Bentley is capable of.
I fear that as I write this I will be judged for being a bad mom- that if I controlled my child these things wouldn't happen. However, I know without a doubt that I am not alone. There is a reason that there is a Down syndrome support group in every state in the country and there is a reason many of us are exhausted. It is because raising a child with an intellectual disability is really really hard. I have heard it said that God gives special kids to special people. This is bull shit. I was not a special person. I was a broken person who really wanted a baby. And that baby has challenged me and formed me and made me a thousands times over a better person than before him. I firmly believe that those in my community stand up to the task because we quickly learn that failing is not an option- and so we fight. We fight every urge to quit- and we fight our way into society so that our new normal isn't just ours- it's for everyone.
It is said that between 67% and 92% of children in the United States are terminated with the diagnosis. I know that around 95% of my friends given a prenatal diagnosis were encouraged to look at termination. It is extremely hard to measure termination rates because not everyone will share why they terminated a pregnancy. Many of us in the disability world cringe at these numbers. And I've had very vulnerable conversations with pro choice friends who articulate the painful difference of terminating because of a diagnosis vs. terminating for another reason. Before I go on I want to say this blog is not meant to debate the ethics of abortion. However, I think many of us are afraid that if we shared the true struggles and pain of raising children with disabilities the abortion rates might go up. If people really knew how hard it is they might run for the hills.
It is my personal belief that we shouldn't run away from things because they are hard. I really do believe that what doesn't kill us makes us stronger. I am proud of how strong I am. I am proud of the work I do to help advocate for children with disabilities. I am proud of my son and I am thankful that he pushes me. When I was training for the marathon I hated most of my runs, but I did them anyway. After the race was over I was in a lot of pain for a week and not really able to get back into running for about a month without pain. However, when I look back I see glory. I see hard work, dedication, and commitment. I am proud of that. When I am in a personal battle with Bentley I feel angry and helpless and I wonder if I can go on... but then I am out of it and I have fresh eyes and I have had some sleep I look at the same situation completely differently.
I mostly write about how amazing my child is, and it's true, he really is amazing. He's thoughtful and kind and witty and loving. But he's also stubborn, and curious, attention seeking, demanding, and frustrating. But those characteristics are the things that make him strong. They allow him to advocate for himself and demand some more independence from a world that thinks he will always live at home. I want more than anything for him to have the things he wants- just like his brother and sister. I want him to make small financial mistakes. I want him to have the independence to explore- to get lost on the bus route or stay out too late or wake up with a headache because maybe he drank too much. I want him to have a life- his own life. I refuse to protect him from the world- he has to find it. And he might do things while he explores that are not "normal". He might take french fries off someone's plate while he walks out of a restaurant and beg someone to give him their coat because he really likes it or yell when he should be quiet.
The belief that kids are always happy perpetuates a myth so that when my son is misbehaving or having problems it seems like it's "not normal." However, this is my normal- it's his normal. And it's ok. We will all be OK.
So today I beg you all to change the way you look at people with Down syndrome. I want you to look at him as a person. He's a person that laughs a lot, runs to give giant hugs, isn't embarrassed to dance like crazy, and loves to be the center of attention. But he's also really hard to raise. So please don't comment about how "happy they all are." And if you see an individual causing chaos or grabbing food, or begging for more, take a deep breath and let the mom or dad or caregiver know they are doing a great job- or that they've got this- or simply offer to help. Because behind every mom's smile or look of frustration is a whole variety of other things- most likely a woman who is holding back tears with all the strength she has just to let them pour out in the privacy of her car.
If by chance you are reading this blog and you have a new little one in your arms or one in your belly. Please don't run for the hills. Buckle up. You're in a for a hell of an amazing ride. You've got this. And we've got you. Welcome to the best club on earth.
Sincerely,
A mom.
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