We're in the park. The kids are running around, screaming, yelling, yowling. Being kids. We huddle under the gentle shade of a tree, sweat dripping, for a refreshing sip of water. That's when we noticed the little boy, playing on the swings. One of his legs dangled at an awkward angle. The children started quizzing me. I smiled at his mother. A shy smile. I want to talk to her, I want to ask her about her child's disability (doctor's are the nosiest people) but mostly I just want to talk to her.
The words stick in my throat. I don't know what to say.
Here is another mother's story about life with her daughter who has a disability.
I am a special needs mom. Our 18-year-old daughter, Brielle, has moderate cerebral palsy. She walks with a limp, has a severely impaired right arm and hand, cannot speak (although she has normal hearing), uses fairly fluent sign language to communicate, and functions academically at an eight-year-old level.
I cannot speak for all special needs moms everywhere. However, I have been surrounded by other special needs families enough to be able to represent them in a general way.
So, let me tell you about the lives of special needs families.
The Good Things About Being a Special Needs Family
1. We get to take life a little slower. Everything we do takes a little longer with our children. Therefore, life in general is naturally at a slower pace and that’s not such a bad thing.
2. We appreciate differences in others. We see children of all abilities regularly, so differences it just don’t faze us. It’s not that we don’t notice. It simply takes a lot of “differentness” to garner our attention.
3. We will not have to deal with certain bad things. Car insurance premiums. Texting while driving. Teen pregnancy. Underage or binge drinking. Drug use. Rebellion. Our kids are highly unlikely to go through those things and it’s kind of reassuring.
4. We can be part of a supportive community. Although being the parent of a disabled child does not automatically connect us to other parents of disabled children, it does give us a starting point to find connections. When we do connect, it’s nice to have others who “just get it” and know how we might need support.
5. Our children touch other people’s lives. Children and adults interact with our disabled children and those interactions help shape who those people become. Maybe they realize their problems might not seem so big compared to our disabled children. Maybe the next time they interact with a disabled child or adult, they will do it with more confidence. Certainly, our children’s influence on others is much greater than ours could ever be.
The Bad Things About Being a Special Needs Family
1. It’s not what we planned. Life hands everyone some curve balls, things they didn’t expect. When our special needs children were born, we had to modify and completely abandon some of our previous plans. We are probably saddened and frustrated by losing the life we worked so hard for, the life we will never have. Our new journey is one no one is ever likely to choose.
2. It’s exhausting. Taking care of a special needs child takes a lot more effort. When a special needs child is young, there are likely endless physical therapy and doctor appointments, often three or more appointments each week. Some parents may need to continue to provide care for their child’s personal needs such as bathing, dressing, toileting, and eating well beyond the typical toddler years. Some parents must lift, transfer, and carry their children because their children cannot walk. The additional worries for our children’s safety, health, and future take their toll.
3. It’s uncomfortable. People stare, whisper, and ignore. We don’t know how to react. Get angry? Cry? Try to explain? Leave? Ignore it? It’s tough every time and we have to face it nearly every day.
4. It’s lonely. When parents congregate, they often exchange accomplishments of their kids and chatter about sports activities our kids can’t participate in. Special needs parents often feel out-of-place. Even if we have other typical children, it still feels isolating.
5. It’s complicated. Like every parent, we’re constantly juggling life. The additional needs of our special needs child bring on an added layer of complex feelings. Guilt. Shame. Sadness. Frustration. Anger. Bitterness. Worry. We might put on a brave face, but there is probably a concoction of negative feelings behind our pleasant façade.
What You Can Do to Help a Special Needs Family
1. Talk to us. We feel isolated just by the very nature of having kids that are different. Forgive us if we don’t jump into conversations, ask you out to lunch, or invite you to play tennis. Just reach out to us. We’re worth knowing and probably need to feel truly welcomed.
2. Talk to our kids. So often, our kids get stares or ignored. We just want others to interact with them the way others would any other child the same age. Be open. Be respectful. Make an effort, even if it’s just a smile and a greeting.
3. Talk to your kids about disabilities. We understand kids have questions about people with disabilities. Do your best to answer them. Discourage them from staring, whispering, pointing, ignoring, or bullying our kids. Instead, talk to them about how alike people are with disabilities to them and encourage your child to interact with our kids.
4. Don’t use the R-word. Ever. Not all disabled children are mentally retarded. However, when people say something is “retarded,” it hurts us as if it is a bad word personally directed at our children. Surely, another adjective can be used. Just think before you speak. Your words matter.
5. Know that we’re more alike than different. Just like any other parent, we start our day with coffee and a shower, get our kids ready for school, go to work, help our kids with homework, cook dinner, wash the dishes, throw in a load of laundry, read books to our kids, pay bills, watch television, kiss our spouse goodnight, and do it all the next day. We worry about our kids, money, health, marriage, and aging parents. We laugh, nag, yell, cheer, complain, and cry. There’s plenty of real estate to find common ground with us and we hope you understand that.
I pluck up my courage. I smile and ask how old her son is, what he is called and where he goes to nursery.
Just the same way I would with any other mother in the park.
Kerith Stull earned a Master’s Degree in communication and worked in marketing before becoming a stay-at-home mother when her two daughters were little. She has been married to her high school sweetheart for the last 24 years and is a recent semi-empty-nester since her 20-year-old daughter moved out to go to college. Kerith blogs about special needs parenting issues at brielleandme.net with her uniquely positive perspective. She recently published a book, Brielle and Me: Our Journey with Cytomegalovirus and Cerebral Palsy, about her experiences with their 18-year-old special needs daughter and their family’s journey of hope, determination, love, and faith. (UK kindle version link is here.)