Parenting a child with a disability has been the most incredible journey I could ever imagine. Tears, joy, frustration, triumph, good days, bad days; I’ve been there. My life changed through the most extraordinary human I’ve ever known, my daughter Chelsea. Parents usually shape their children but in our case, Chelsea has shaped me. She has been my teacher and my inspiration. It is because of her I joined the disability movement, it is for her I remain an active voice for equality for all.
KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
An unexpected disability can turn the world as you know it into life on another planet for all rights and purposes. Plans go out the window, personal circumstances change, the order of life no longer makes sense. Somewhere in there you find yourself wondering what the hell went wrong, how did I wind up here? This was not on my agenda! This does not happen to me, this happens to other people, not me! Who dreamed up this cosmic joke? It’s not pretty, but it is a reality within the disabled community.
I’m sure you know a family member with special needs impacts the entire family. Everyone is affected one way or another, there’s no escaping that reality.
You can’t really deny or side step the fact there is also a shift among friends when a serious or life changing disability is introduced into relationship dynamics. I don’t think anyone ever sets out to be intentionally uncaring or insensitive, but it happens. I know that’s harsh, but it’s how I feel. I never wanted anyone’s pity, I just wanted acceptance for Chelsea.
My boys have grown up with their sister’s disability and don’t think much about it. There have been hard times financially and times when I know the boys resented how much of their parents' time Chelsea required but we found ways to work through the tough places and move on. It was hard on my marriage in the beginning because I didn’t trust anyone to take care of Chelsea, just me. That changed when I found a program that provided professional respite care, which meant my husband and I could get away for date night or the occasional weekend. That made a huge difference. I guess in some ways Chelsea’s situation is so normal for us, we think like she does—it’s always been there, it is what it is and it’s not a big deal.
But the "not a big deal" part wasn’t always so.
When Chelsea was a baby it wasn’t all that difficult to manage our home, hold a job and be an uber soccer mom. She was tiny so no one really noticed she was older than most kids her size, nothing seemed out of the ordinary. Typical family, typical everyday family activities—We went to school and church, we participated in all of our town’s community events, we did the zoo, museums, theme parks—nothing out of the norm, all very innocuous.
We knew she had serious challenges, we were getting all kinds of early intervention help from various agencies, we were on several programs through support groups—we knew she had a serious disability, but honestly our lives didn’t seem so out of step. Oh, our world was different and there were bad days from time to time, but I more or less created a happy bubble and that’s where we lived. When Chelsea was three the first wheelchair entered our lives.
And the world changed!
Talk about a rude awakening. No one ever treated Chelsea any differently until she was in her first wheel chair. I guess, for our friends it was the first real sign she was different. And somehow that made the rest of us different. I didn’t really pay too much attention when invitations that were normally for the whole family changed to just the boys, or just us as a couple. I didn’t notice right away that we were somehow different because we were moved to the back pew of the church as to not have Chelsea’s wheelchair block the aisle—I didn’t figure any of that out until I found out a close friend had planned a dress-up princess birthday party for her daughter and invited all the little girls in Chelsea’s Sunday school class—but not Chelsea.
I can’t say Chelsea understood what had happened, but I did. And I was angry and hurt and humiliated and completely unforgiving. I wasn’t supposed to find out, but another friend asked what kind of princess dress I had made for Chelsea and then was embarrassed to learn we hadn’t been invited.
The friend giving the birthday party called later that week to apologize and to extend an invitation to Chelsea. I still wasn’t in a forgiving mood. I let the machine pick up and I stewed some more.
So sure was I in my indignant rage, I called my mentor, the lady who had been my first contact with another parent of a child with disabilities. I ranted and raged—How dare they treat my child like a second class citizen, how dare they act like she doesn’t count—It was really ugly. And Emma, being the wise sage she is, let me rage. I waited, counting on her complete agreement, and instead she told me it wasn’t really their fault. If it was anyone’s fault, it was mine. I thought that woman had lost her mind. But she gently explained as unfair as it is, it falls on me to be the leader, to show other people that it’s okay to include Chelsea. It’s okay that she won’t be able to do all the same things the other kids do—but with some modifications she can participate in her own way. It was my responsibility to make acceptance easy for them. Not the other way around.
Chelsea went to that party, she was a pretty little princess in a costume I made for her. Wings on her back, wand in hand, balloons with butterflies and streamers tied to her wheelchair, we went and we had a blast.
That was my introduction into creating circles of friends. It was a new concept then, a way to ensure children with disabilities experience friendship in the mainstream. Through working with our friends, with the school and other community groups we set up kids who became Chelsea’s partners. They pushed her from class to class, they read to her, they learned sign language with her...They became her social group and remain so to this day. She knows she can always count on support from her brothers. But they are, of course, her brothers. (Which she says with her eyes rolling....She has one friend with a huge crush on our middle son, she so doesn't get that after all he's just Brian for pete's sake!)
That was our beginning. Chelsea is 20 now, almost 21! She's beautiful, funny and has a wicked sense of humor. She lives in a group home in Austin, goes to school and holds down a part time job. She has profound cerebral palsy, a seizure disorder, she's non verbal, and she's hard of hearing. She uses sign language as her primary means of communication, though she will use a communication board if the people around her don't sign. Chels is on her fifth wheelchair. This one is bright purple and electric; you can't miss her even if you try. She's addicted to her iPod, so you do have to watch out for her if she's digging the tunes when she's driving!
My happy go lucky girl works in a office doing simple data entry with specialized software. I'm not at all sure what the techie part of that means, but I know she enjoys it. The people she works with took a sign language course through their local adult continuing education program so that they would be able to communicate with her easily. That they would take the time to learn how to sign in order to help our daughter succeed, means more than I have words to express. Just when I think disabilism will never go away, someone, something comes along and reminds me narrow minded negative thinking is counter productive.
She doesn’t need me to help her like she did when she was younger. Now Miss Chelsea pretty well does her own thing and that's all her dad and I have ever asked for. She hangs out with her friends, she goes shopping, she does everything any young lady of 20 does. And she has a boyfriend. They're so cute together. He smiles, she blushes, I cry and her dad gets a big dopey grin!
Sure, we have to make certain the support is there for her to succeed, but that’s our job as her parents. She’s quick to tell people what she can do and even quicker to figure out how to remove obstacles when they pop up. She resents it when someone shows her pity but we’ve told her the same thing Emma told me...It’s your job to show them the way. If they want to know you, you have to help them grow into being your friend.
I shared this diary adventure with Chelsea and she surprised me with her own version of Emma’s advice—Never let the disability define you, never let it become who you are. Wise words from someone who lives her life on her terms regardless of the challenges. That's my Chels...You go baby
girl!