Many of the mothers we serve through the Live Your Dream Awards have kids with disabilities or disorders. Women like Shirlee Draper, Aziza Kibibi, Eri Isozumi and Xiu Man Hang know how that caring for a child with special presents a huge set of responsibilities and poses a challenge to pursuing one’s own dreams. We could all stand to be more understanding of these women’s unique struggles.
My daughter wouldn’t—couldn’t—stop talking. It wasn’t a “conversation” exactly. It was more a series of unconnected thoughts, punctuated by random sound effects and waving arms. With one particularly dramatic gesture, her arm connected with her glass, spilling milk across the table and onto my lap.
It was a typical meal, on an average day. My daughter has ADHD.
Our lunch guest was an older relative known for her deficit of patience and surplus of judgment. She might not have cried over that spilled milk, but she yelped, then huffed, then rolled her eyes over it.
I was annoyed, as well. She’s my child, and I’m allowed. Everyone else can step off.
“You know, she’s limited in how much she can help this,” I reminded our guest. Her response, dripping with sarcasm, was: “Well, I don’t know where all these kids with ‘ADHD’ were when we were all growing up.”
Where were they? They were always there. Without a diagnosis, they were simply labeled as “incorrigible,” or “troublemakers,” or “weirdos.” If still in doubt, ask an adult who had (or has) ADHD and remembers what their childhood was like.
In the past few decades, awareness of ADHD, autism, and other disorders has increased dramatically. Acceptance has yet to catch up.
All things considered, my daughter is fine, albeit impulsive. For some families life is a daily struggle, not just with disability, but with how to navigate a world that isn’t always kind to those with differences.
I asked several parents to share what they most wanted others to understand about raising a child with special needs. Their responses were strikingly similar.
What You Should Understand About Special Needs Parenting
1. Judgment is everywhere (and it doesn’t help)
Parents of children with special needs always feel judged, even by friends and family. I spoke to one parent whose child suffers from multiple disabilities related to a complicated, premature birth and a subsequent exacerbating illness.
“Cathy” reported a close relative’s belief that she not only coddles her child, but could actually cure him of his disabilities if only she tried hard enough. This relative once suggested that if the child were admitted to a particular top-notch facility, he would be “cured” in under a week.
It never occurred to her that if medical science had discovered such a fix, every affected person would have already availed themselves of it. It’s easier for her to assume this mother as enabling and permissive.
“Amy” explained that her daughter “Nancy” has an emotional disability that affects, among other things, her personal hygiene. This sometimes results in a noticeable body odor. In this case the child is judged, but her mother is, as well. People wonder why she doesn’t work harder to ensure her daughter is more presentable.
However, at 19, Nancy is already a young adult who must accept responsibility for her own personal care in order to live independently. Amy realizes this can never be accomplished with constant direction. A difficult balance of enforcement and passive encouragement is required, even if it sometimes results in failure.
Others simply see a disheveled daughter and imagine a lazy, apathetic mother.
“I don’t blame people for judging,” this mother said. “They just don’t know.”
2. The Domino Effect mean molehills quickly become mountains
Cathy also shared that she’s rarely able to socialize, even for just an hour or two. Her friends don’t understand why she always refuses their invitations. “Just hire a sitter,” they suggest. But in her case, a sitter isn’t a viable option.
“When you leave a neuro-typical child with a sitter,” she explained, “there’s a 99% chance everything will be just fine. But if I leave my neuro-atypical child with a sitter, there’s a 50% chance he’ll have a meltdown. That meltdown will lead to anxiety. That anxiety could lead to a particularly bad episode of OCD. His Tourette’s will ramp up, and his tics will increase, which can become painful. Violent facial tics sometimes make his eyes swell. Then he has to miss school. If he misses school, I have to miss work. This can go on for a week or more, and he can be in pain the whole time. Or sometimes, I can’t go out because he becomes hysterical and begs me not to go, and I know that all these same things will happen. It’s just not worth it for a coffee date.”
3. Worry, sadness, and “loss” are constant fixtures
Parents of some disabled children will never have “their” time. Their children will grow into adulthood, but may never be fully independent. For their parents, there will be no retirement to compensate for a job well done. Someday, they know they will die, potentially leaving their child unable to cope without assistance.
For the most part, people are able to process and sympathize with this fear as it applies to visibly disabled children. There is less understanding as concerns invisible disabilities, even if many of those children will also require a lifetime of support.
Often, when Cathy explains her son is disabled, she is often met with skepticism. “He looks fine,” people say. There are few offers of support.
“I worry all the time,” she said. “The worry never goes away.”
“I thought I’d be a soccer mom. This isn’t the life I thought I’d have.”
Never assume you understand the frustrations special needs children and their caregivers face. Even if you have some understanding of a particular disability, remember that every situation is unique, and no two individuals face identical challenges.
The parents with whom I spoke all said they wished people would just ask them questions, but they rarely seem comfortable (or interested) enough to do so. “Don’t be afraid to ask,” one mom told me. “Compassion is always welcome.”
For resources and information on special needs, check out this comprehensive list: 50 Great Websites for Parents of Children with Special Needs and see stories, opinions and advice on special needs parenting.
Robyn Frank Smith is a retired attorney and mediator who now teaches Conflict Resolution at the university level. Though originally from Nashville, Tennessee, Robyn has lived in a variety of places (some more interesting than others), including Memphis, Washington, D.C., and the Republic of Singapore. Her hobbies include weightlifting, creating upcycled furniture and décor from found objects (she is currently working on a project with an Amish buggy door), and fighting about politics with strangers on Facebook. She also enjoys pretending she’s happy being a vegan, and traveling the world with her husband and teenaged daughter. She lives in Pennsylvania.