By Amy Saffell
|mobileWOMEN.org Contributor, Amy Saffell|
Looking at the community of people with disabilities, you find a disproportionate number of parents compared to the community at large. Some people assume that people with disabilities aren’t fit to be parents because they don’t think that people with disabilities can carry out all of the duties naturally associated with being a parent. That thinking unfortunately goes for people with and without disabilities. Some people with disabilities have a hard time fathoming how they could care for a child and end up missing out on something that deep down they’d really like to experience in life. I asked three women with disabilities to talk about their journey through parenthood. The names have been changed, but their stories are real. Parenthood isn’t for everyone, but I hope that their stories will encourage others to honestly consider in new ways whether parenting might truly be feasible in their own lives.
What are the ages of your children?
Jessica: I have a son who is 20 and a daughter who is 8.
Melissa: I have 2 girls, 11 and 8, and one boy, age 5.
Christina: My son is 5.
If you had a child, by birth or adoption, while you had a disability and are comfortable sharing, please describe how you came to the decision to become a parent and any opposition that you faced from those around you as you told others.
Jessica: With my son, his father had left me, and doctors said I would never get pregnant, so it was a real shock. I was scared more of being a single mom than being a mom with a disability. I had babysat an infant and 2 year old until they started school, so I knew I would do ok. I always wanted to be a mom but thought it would never happen because of what doctors told me. I had decided I was going to adopt. However, no one wanted to adopt to a single mom who had a disability. Then, I got pregnant with my son, and I couldn’t have been happier, except for the part of his dad leaving while I was pregnant.
Melissa: My first was a surprise. I had been paralyzed 2 years when I found out I was pregnant. Living in a small town, we knew very little about paralysis. After she was 2, we began trying for another. My mom was worried I couldn't handle 2 kids, but I'm very strong and a control freak, so I knew I'd be ok. I have a baclofen pump. It helps control my spasms in my legs due to being an incomplete injury. While pregnant with my first child, I had it done. During the first years of paralysis, I'd been on oral meds which had severe side effects especially on a fetus. My mom began researching, and we began the painful journey of trials to see if the pump would even work on me. About month 5 during my pregnancy, I had surgery to install the pump. It was a bumpy road but at the end my daughter was born perfectly.
Christina: Growing up with a spinal cord injury I never really doubted that I’d be a mother one day. I knew it was possible for women with SCI. When I decided to get pregnant though I first posted inquiries on boards such as mobileWOMEN.org and carecure.org to see if other women with SCI from around the world would share their experiences with me so that I’d have a more realistic idea of what pregnancy might be like for me. I was lucky that my obstetrician in Miami is amazing and had delivered about 40 babies from women with SCI. He was always one step ahead of me in terms of questions and ways to solve any dilemma. Even with my good fortune of having Dr. Yasin on my team, I still sought out information from women. In the end I received about 13-14 emails from women willing to share their stories. To them I submitted about 15 questions, and they answered them all. I was amazed and enlightened by their stories and experiences. I discovered that women with SCI have a variety of experiences, some good, some very challenging, in pregnancy. I wrote my own “chapter” throughout my experience, and was lucky to have an “easy” pregnancy, which I kept note of, in detail, in my pregnancy journal.
Have you used any adaptive equipment in parenting, either an established product or something you created yourself? Please describe.
Jessica: I took a belt and wrapped it around my waist and then attached it to the arm of the car seat to carry my children. With my daughter, students at a university made me a device to attach to my chair to use a stroller. The back wheels of the stroller sat in it, and then when I pushed the stroller would go forward. It was pretty hard, though, and maybe even as a result, she learned how to walk early.
Melissa: When my children were babies, I would place a thin pillow on my lap. I would lay them on the pillow closets to my tummy. When in my manual chair, I would travel from place to place in the house this way.
Christina: I used a crib that we adapted by cutting the middle of the side so that it came out like a gate. This way it was so much easier to take my son out from the crib. In addition, we made a detachable footplate piece that connected the stroller to my chair so that when I pushed my chair, the stroller automatically moved, too!
Please describe different ways/methods of caring for your child that you adapted because of your disability.
Jessica: The car seat and stroller were the only things I adapted. As far as equipment goes, everything else I just had normal and figured out my own ways of doing things as I went along. It wasn’t easy, but I managed. My mom’s favorite words that I lived by were…”Where there is a will, there is a way”.
Christina: I didn’t do too much differently other than the crib and stroller mentioned above. Picking my son up off the floor was difficult, although I found a way using his clothing on occasion and just being creative!
Have you not been able to do certain things with regards to parenting, whether it be some aspect of an infant's care, getting to the soccer fields for your child's game, or anything in between? Describe that frustration and/or acceptance.
Jessica: I attended all events for both of my children. Sometimes it wasn’t always easy with grass and things, but I always managed. I remember when my son was little he was in a lot of pageants, and I couldn’t go on stage with him because it wasn’t accessible. At first I relied on someone else to take him on stage, but by the time he was 3, he wanted to go all by himself. He did so well that an agent was in the audience one day who signed him to be a model in NYC.
Melissa: My husband has a job where his schedule is flexible. My husband has always helped me to my kids’ games. At the beginning of parenting, I had to go to every game even if I went through mud. Now since I've got 3, I let my husband go alone on those wet muddy days. I go to 8 out of 10 games. I coached along with my husband for my oldest’s first soccer season. She was 3, it was a lot of fun even if we didn't really know what we were doing. Now my husband and a dear friend of mine coach together.
Christina: When my son was a toddler, I didn’t take him in and out of the bath because I felt that doing so by myself was unsafe. With soap, water, a child who might sometimes resist getting out of a fun bath, I knew that this was an instance where asking for help was in the best interest of my child. Pride comes second to being the best parent you can be.
Have you had to rely on another person, either a spouse or someone else, for aspects of parenting? Describe that situation, the frustration and/or acceptance.
Jessica: I only relied on people to babysit because I worked full time or when I needed to have a little “me time.”
Melissa: My mom and husband are a big help. My sister and I trade out on babysitting. At 6 months old, I would keep her baby, and I was familiar with that age because my daughter was the same age at the time. I would also keep her 2 year old along with my 3 year old. Looking back, I don't know how I did it.
Christina: In the bath situation, I did rely on my live-in help. I didn’t feel frustrated though because I did 99% of all other care, so I just accepted safety limitations.
Some people believe that a person with a disability would have trouble ensuring the safety of a child, whether it be keeping the child from running into the street or reaching a hurt child in an area not easily accessible from a wheelchair. How have you handled safety precautions with your child?
Jessica: I used an arm wrist holder to keep a hold of my kids when we were at big places. People would say it looked like a dog on a chain. I didn’t care because my kids were safe and never got hurt. When we were at smaller places, I would put them on my lap, and they would sit back on me. I also taught them how to hold on to my chair and walk. They knew better then to let go.
Melissa: I'm a just as good if not better than a walking person with the safety of my kids. I purchased a power chair for this reason. My kids are well behaved children because I will not have it any other way. The main reason for a child to be obedient is for their safety. My kids have always known where their spot is when we are out alone. My oldest gets in my right side and my other daughter my left while I hold my son. Now that my son is a little more independent at age 5 and my oldest daughter is 11 and can walk near me without holding on to me, my son gets my left side because that hand is free to hold his hand. When my husband is gone on an overnight trip, all the kids sleep with me. I realize that if the house caught on fire, I would never make it to the other side of the house to save them. Therefore, I have a camp out in my bedroom. My bedroom has French doors that lead to outside. We have a pool. My oldest two swim very well, but the 5 year old can't. He has been trained to never leave the deck without a life jacket. It’s all about discipline. If I say it, I mean it, and there's no way around it. There are children who die simply because they disobeyed & these parents aren't in chairs. I've never chased my kids. They come to me.
Christina: Most moms in a chair that I know would keep their rambunctious or curious toddler on her lap when crossing a street or when in a dangerous situation to prevent the child from getting into trouble. If my child wanted to go somewhere inaccessible to me, if I was alone, then he couldn’t go, or I’d have help. And for the most part, people are nice; if your child is hurt anywhere, regardless if you’re disabled or not, a good Samaritan will usually help get you where you need to be! I remember once at a Fire Fighter event for families and kids, a bunch of kids—including my son—were on a bounce house that started to deflate. We all started to panic, and my son was in there but towards the front. I was with help, who wasn’t in a chair, but she was trying to hold up the house and as I screamed and got all the way up to the bounce house, another mom grabbed my son out for me. Believe me, I’d have crawled in there if need be, but in this instance, most of us parents were in the same boat because for anyone it was tough to get in!
Have you faced any discrimination based on your disability while parenting your child? Please describe the situation and how you handled it.
Jessica: The only discrimination I had was from my older sister until she saw how well I did, and then she apologized.
Melissa: When shopping for groceries, my kids help put items on the checkout counter. One time a rude checkout lady began to complain that my children shouldn't have to do that. She did it so that everyone could hear her. I loudly said, "I'm teaching my child work ethic.” Then I called the manger to the front service desk because I wanted her to apologize. I believe we need to teach our children responsibility so they can be prepared for adulthood. I've had people say things like “how will your kids learn to walk since you’re in a chair?”. My educated friends don't say things like that because they think outside the box. My kids learned to pull up on my chair, and they would walk holding on to the front of my chair. It was the most precious thing to see them take their first steps.
Christina: Thankfully, no.
Describe what you feel is the greatest joy or most rewarding aspect of being a parent.
Jessica: The greatest joy for me is watching them grow and how my son has grown into a very good man. My children learned very young they could ask question about people with disabilities but they weren’t to laugh or point. My daughter is my little safety girl. When I cross the street, she will hold out her hand out and make sure traffic stops. Another joy was when I walked into my son’s school cafeteria when he turned 17 years old.
Christina: The greatest joy is seeing my son grow and achieve goals, take new steps toward independence….the smiles and laughter melt my heart every time!
What is the most difficult aspect of being a parent either related to having a disability or just in general?
Jessica: The hardest thing about being a parent is to let go and let God. Your children will make mistakes just as you did. But just remind them you love them and that you are there for them.
Christina: Patience, for me. I’m one of the most patient people in the world, but in parenting you need more than even the extraordinary amount.
Please describe any self-doubt that you experienced in your ability to be a good parent, either before you became a parent or while you were a parent.
Jessica: I really didn’t have much doubt. I only had it for a minute when people would say I couldn’t do it, but then I had to show them different!
Christina: Being a divorced parent brings some self-doubt into play because you want your child to have everything. But once you realize that your child is loved from everyone, regardless of what home those people are in, the the self-doubt fades.
What are your favorite things to do with your child/children?
Jessica: My favorite thing to do with my son is to watch him play hockey. I also love to sit and talk to him about when I was growing up. The favorite thing to do with my daughter is to attend Girl Scouts with her and to help her reach her goals.
Melissa: I love having my kids’ play dates. We have a gingerbread house making party every year. I have around 20 kids here. I have a best friend who helps me with the parties. She knows exactly where I need help and knows when not to help. This relationship developed over the past 13 years when I first got paralyzed. She was the girl who pushed me to go shopping and bake Christmas goodies with her. She truly is a sweet best friend. Our daughters are the same age. I'm truly blessed beyond measure.
Christina: We love to play outside, play any fun game, play with our dog, play with friends at the park, travel and stay at hotels, go to movies, play mini-golf, I love watching him play on his sports teams, swim…everything we do we have a blast!
Has your child asked you about your disability, & how did you handle it?
Jessica: Both my children have asked why I can’t walk. My answer was because God sent me this was to show people I could make it in this world, even if I used a wheelchair. My daughter repeats that answer to her friends all the time.
Christina: I’m sure at some point he asked me. Now, if any child asks me, whether it’s a friend of his or a random kid at the playground, my son answers for me: “She broke her spine when she was a baby.”
What advice would you give to other people with disabilities who are contemplating being a parent?
Jessica: I would tell other parents to follow their heart and to know not everyone is alike. It’s all about trial and error. They should also remember that no one is perfect, and just because one person does things a certain way doesn’t mean it will work the same way for everyone.
Melissa: In parenting, the most important thing is to pick the daddy wisely. I found a man who was committed to me, is kind, unselfish, and loves me for who I am. Then we had our family. I never wanted my children to be a statistic. Through God's mercy, I found the perfect daddy for my kids. So many of life’s struggles, I never have thanks to a good man.
Christina: Being a parent takes love, patience, creativity, support and belief that everything will work out. Disability or not, it’s the most difficult but most rewarding ‘job’ in the world, and I don’t see why anyone with any disability should pass up on being a parent.