Dear Dad on “The Voice” whose son has arthrogryposis,
Congratulations! You’ve officially been given the greatest gift a person could be bestowed. You’re a parent. Isn’t it fabulous? I’m sure the last few years of your life have been a whirlwind, and it’s only going to get more hectic as your little boy grows up. I’m a firm believer that only special people are chosen to be parents to a child with disabilities. It’s a lot of work, and most people probably wouldn’t be able to cope with the issues you have to face daily. As a person with arthrogryposis, a fellow “AMC-er,” I’m here to say welcome to our community and to give you some advice. Should you need it of course.
I’m sure the day your son Bash was born was the happiest and saddest day for you. The joy of bringing a baby into the world is like nothing that can be described. However, when the nurses said he was “abnormal” I can only imagine how suddenly all your hopes and dreams for your son came crashing down, as you saw the life you planned and realized a lot of it might not happen. That may be a bit dramatic, especially if you already knew he would be born with this disability, but back in 1986 (when I was born) it was a whole different story. The ultrasound technology was not advanced enough at the time to produce the kind of images we can see today.
When I was born, it was a shock, not just to the doctors and nurses but to my entire family. I like to joke that I looked like a little alien when I was born, and to be honest, what other way is there to describe a baby born with backward limbs? My grandmother prayed over me, my mom held me and my aunts and uncles cried for three days before they could even visit the hospital. To say those first few days of my life were dramatic would be a gross understatement, but once the initial shock wore off and reality set in, the real work began. I was 10 months old when I had my first surgery to correct my clubbed feet. At 3 years old I had another surgery to correct my feet again. Since then, every day of my life I have worn AFOs (ankle foot orthosis) on both feet.
The doctors told my parents I would never be able to walk. I’d never be able to feed myself, brush my teeth, brush my hair or dress myself. But when I was about 5 years old I pulled myself up to a standing position using the side of the couch. I walked into the kitchen and said, “Mommy, look!” I’m pretty sure I gave my mother a heart attack, but all I remember is her crying and saying, “Thank you, Jesus!” Later that year, I made my walking debut at my aunt’s wedding. It was the first time anyone in the family had seen me walk. As the years went by I learned more about how my body moved, what I could push it to do and what things were just impossible. I learned how to feed myself, brush my teeth and dress myself, defying what doctors had told my parents. I went to college and later became the first in my family to go to grad school and move thousands of miles away from home, all on my own for the first time. It was the most terrifying experience of my life, but I wouldn’t have been able to accomplish all of those things without the love and support of my family. So, with that said, here are a few things I learned along the way in my almost 30 years of living with AMC. I hope parents of children with arthrogryposis will take a look:
- Help him be independent. If there is one thing my parents and sisters did that I thank them for constantly, it’s that they made me independent. Suggest he does as much on his own as he can, and if he says he can’t, motivate him to try. I believe one of the hardest things about living with a disability is falling into the mindset of “I can’t.” Sure, there are things I won’t be able to do. I can’t climb stairs and nothing is going to change that, but I can cook when I’m hungry. I can dress myself. One time, when I was about 16 or 17 years old, I fell. I have a hard time getting up from the floor unless I can wiggle up on something. So I laid on the floor calling for my sister to come help me. She saw me and proceeded to walk over me. I said, “Wait! Help me up!” She looked at me and said, “You can get up yourself. At least try and if you really need help I’ll come get you.” That’s when I realized my family wasn’t going to let me be lazy because I didn’t want to try. I wiggled my way to the stairs and eventually pulled myself up. Then I hunted down my so-called sister and found her sitting at her desk, playing on her computer. I shouted, “Thanks for nothing!” She responded with, “Well, you got up, didn’t you?” Touché, little sister. Touché.
- Give him a sense of humor. The world can be harsh to people with disabilities. We are stared at constantly; people whisper behind our backs about what may have “happened” to us. People have no filter and, quite frankly, they suck. One of my ways of coping with disabled life is by making fun of it. When people see me and have this reaction: “Oh my God! What happened to you?!” I deadpan and say, “I was born.” That’s usually the end of that. When I’m out with friends and I see people staring at me I tell my friends “They just haven’t seen anyone as beautiful as me.” Or if we are outside I start yelling, “I can’t believe they let me escape the home!” These may not seem like appropriate responses, but trust me when I say that until you’ve seen someone open-mouthed, exorcist-style turning their heads to look at you, as if they have never seen anyone with a disability, in the end it may be better to laugh about it than to get mad or sad. I’ve learned that laughing about it gives me power over a situation that might otherwise be hurtful. As disabled people, we already have little control over our daily circumstances, but we can at least control how we react to ignorance.
- Make sure he knows other kids with disabilities. I cannot stress this enough. Not only are these kids going to provide your child with life lessons, and vice versa, but these other kids are going to help in ways you may not be able to. There may be times in his life when he might feel isolated, lonely or doubtful of his purpose, and he’ll think, “Why me? Why did this have to happen to me?” You may not be able to answer those questions, and you may not be able to provide the comfort he needs in those moments, especially if he is always surrounded by abled-bodied people. Having friends and a support system made up of people who have, in their own way, been through what he has been through may be a lifesaver if he needs it. Two of my best friends in the world have been by my side since we were 2 years old. One of them has spina bifida and the other has cerebral palsy. We went through pre-school, elementary, middle and some of high school together. We were even “mainstreamed” into regular classrooms with the “normal” kids, and it was always comforting to know they were near when I needed a fellow disabled student to vent my frustrations to.
- Don’t tell him it would take someone special to love him. You’d be surprised how many times my disabled friends and I have heard this, and it’s really hurtful. Chances are by the time your son reaches the age when you’ll need to have the “girl talk” with him, he will have figured that out. While parents’ intentions may be pure, we don’t need them to vocalize this.
- Have him get a job. This kind of belongs with number one, but it is important. One of the best things my parents did for me was making me get a summer job when I was 13. I worked for a few hours a day in the office of the neighborhood pool. I held that job for three summers before my family moved. One summer, I worked in the county Board of Elections office. When I entered college I worked several volunteer and temp jobs on campus. During grad school I worked for some e-publishers and then as a teaching assistant for an online university. Part of being independent and a member of the “real world” is being able to work. These experiences were all wonderful because I developed skills I would need to someday be independent. And, you know, Social Security is crap! But that’s a blog post for another day…
- Teach him to talk about his disability. Being disabled is not something anyone should be ashamed of, and he is going to get hit with a whole lot of ignorance during his life. By teaching him to be open about his disability and by teaching him to accept other people’s questions as a learning experience (for them) he can become a part of the next generation of disabled people to have their voices heard and help bring about more change. I prefer it when people ask me about my disability. I use it as a teaching moment and hope when they go about their days they think about life in a different way. Many of my able-bodied friends tell me their perspective on life has changed since meeting me. When my best friend goes somewhere without me, one of the first things he thinks about now is “Is this accessible for Leah? How could we make this work for her?” Your child may be at the center of many conversations like this and needs to know how to answer these types of questions.
- Finally, trust your own instincts, and his too. The early years of his life are going to be filled with doctor’s appointment. They are going to tell you things you don’t believe, don’t want to hear and sometimes things you just don’t want to do, like more surgeries. When I was young, one of my doctors suggested a surgery to lock my right arm at a permanent 90-degree angle. Fortunately, my parents thought the surgery unnecessary, and I didn’t have it. As I grew up, my right arm became my support arm. I’m left-handed but lack the muscle strength to lift and hold my left arm is certain ways. With my right arm being free, I am able to use it to support my left arm, which helps me eat, brush my teeth, wash my hair, grab things down from cupboards and much, much more. You may get flack for going against a doctor’s suggestion, but at the end of the day you should trust your instincts as a parent. And the same goes for you child. Listen to him when he says he’s in pain or when he’s uncomfortable with a certain practice or a particular doctor. He’s the one living it and going through it. Let him have a voice in what happens to his body.
I hope these few items help you in your lifelong journey with your children. You’ll go through good days and bad days, just like any other parent. There are going to be times when you might wonder how long you can keep fighting. Government programs are good about helping (to some degree), but know you have a whole community of people behind you who are living it. We are here for you both, whenever you need.
Oh, and by the way, it was amazing seeing someone with a disability featured on national television for once. I literally cried.
Follow this journey on The Candid Cripple.