A few weeks ago, I put out the request for stories of raising special needs children and Kathleen, bless her heart, agreed. I got to know her almost a year ago through the Quick Takes meme on ConversionDiary.Com and she has been an absolute blessing to me as I’ve navigated these waters with my son Daniel. She cheers for us when we hit a milestone and has given me feedback when I’ve needed it. These are her thoughts on parenting her daughter Julianna who has Down Syndrome.
Out of all the jumbled memories of the time around my daughter’s birth, one stands out most clearly. A doctor only distantly connected to us, who knew a lot about disability issues, stood at the foot of my hospital bed and issued this warning: “You have to be prepared to be an advocate for your daughter–because no one else is going to do it.”
Instantly I threw up my defenses. I didn’t have the emotional stamina that day to face such a bald truth. But of all the deluge of verbiage lobbed my direction in those first days, those are the words that have stayed with me longest.
I think the hardest thing about parenting a child with special needs is that for everyone else, disability is so far off the radar. Both sides of the political spectrum have their pet issues, and disability isn’t one of them. The general population pays lip service to disability support, but when push comes to shove, they don’t pay us much attention. There aren’t enough of us, and by and large, we aren’t movers and shakers.
To be frank, it’s frustrating as hell, and a real pain in the you know what.
But I have to admit it’s taught me and my husband skills we wouldn’t have developed otherwise. We no longer tolerate BS. We’ve learned the art of standing up for Julianna, and by extension, for ourselves, without making enemies and burning bridges (an important distinction). We’ve come to value solutions over complaints–although sometimes it takes complaints to get to solutions.
These are incredibly valuable life skills, and they’re not the easiest to master. That is one of the many gifts Julianna has given us.
The other thing I think is important to note is that parenting a child with special needs is probably not as all-encompassing and overwhelming as it looks on the surface. When my doctor uttered the words “chromosomal abnormality,” I thought life as I knew it was over. I thought the rest of my life would be spent in an unending focus on disability. And that just isn’t the case.
Problem-solving Julianna’s delays does, of course, occupy my attention a major part of every day–but no more than problem-solving Alex’s moodiness, Nicholas’ stubborn disobedience, or Michael’s spotty nursing schedule. It’s simply a part of the fabric of life.
Early-on, I thought Julianna’s delays meant we’d never be able to get away by ourselves again–how could anyone communicate with her? But we have high-school-aged babysitters and grandparents who don’t know sign language and get along swimmingly with Julianna. We are constrained from the kind of couples-only trips many others take, not by our daughter’s delays, but by our choice to give her two younger siblings.
There certainly are children with disabilities more severe than Julianna’s–some of them even have Down syndrome. But a diagnosis of special needs is not an automatic death knell to all your dreams. Life with most children with a disability is, in almost all fundamental ways, just like life with typically-developing children.
Maybe you’re skeptical. Perhaps another illustration told to me in the early days will help, even if it is specific to Down syndrome. Every human being has 23 sets of chromosomes. #1 contains the largest amount of genetic material, #2 somewhat less, #3 even less, and so on down the line until #23 does nothing but determine gender. Since DS is an extra 21st chromosome, you can perhaps understand why the National Down Syndrome Congress uses as its motto, “We’re more alike than different.”
You will still start solid food, you will still toilet train, you will still fight the obedience fight, you will still send them to school. Yes, being a mother of a child with special needs is one of a handful of defining characteristics of my life, but it didn’t change me into someone else. I’m still me, and I always will be.
Kathleen Basi is the mother of three rambunctious boys and one chromosomally-gifted daughter. She blogs about life at the intersection of faith, family and the written word at http://www.kathleenbasi.com/blog.