Life
My daughter is cheerful and creative, thoughtful and kind, fiercely independent, and a born leader. She’s also brilliant, and sometimes uses such an expansive vocabulary you'd think she was a tiny English professor. She’s also neurodivergent, with a long list of diagnoses that do not define her, but definitely make parenting her much different than parenting my other kids. It also makes it harder for me to relate to other parents.
As a mom of a special needs kid, I don’t often talk about what parenthood, for me, is like, out of respect for my daughter's privacy. It’s also hard to admit that I am struggling, and rarely do I assume anyone else will understand what I'm going through. Except, of course, other parents of special needs kids. And while no two children, no two parents, and no two scenarios are entirely the same, many of us are tired, made to feel ashamed, lonely, or in way over our heads, and therefore unable or unwilling to reach out for help, solidarity, or just a break.
The last thing we want, as parents, is to let our kids' disabilities define them. I love my daughter — even the parts of her that frustrate the heck out of me. I also don’t want to make her challenges about me. Like, I don't need to hear how "brave" or "strong" someone thinks I am for being her mom. At the same time, I feel so alone. It’s hard to admit that you don’t have all the answers as a parent, and even more so when your child is violent, cruel, or unable to control her emotions. It's hard to worry, rather consistently, if you're somehow to blame. It's hard to admit that, sometimes, I wish she were different, and I’m 100 times more embarrassed to have those thoughts than I ever have been about her public meltdowns or calls from school. I love my daughter fiercely, and advocate for her the best I can, but it’s so hard sometimes, especially since I have other kids with different needs and challenges of their own.
So, most the time, I don’t tell anyone about the bad days, save for the myriad of professionals that are involved in my daughter's care but who really don’t understand, either. As a result, there are so many things I, and other parents of special needs kids, want you to know. Things like the following:
Carrie, 41
"We are always in crisis/survival mode. We are always waiting for the other shoe to drop. We do not get the supports that we need (physical, financial, emotional) to get by, let alone thrive. We paste a smile on and muscle through, because we have no other option. We aren’t any better equipped to parent this kid than anyone else. We are tired, and our backs hurt."
Maureen, 33
"It's important to realize that we still want a life outside our kids, like any parent, it's just not as easy to get away. Please don't stop inviting us to things because we can't always come. I would rather be asked to 10 things and hope I can say yes to one of them than not be asked at all. Special needs parenting is isolating and while we may not be able to go to things as often, it doesn't mean we don't want to be included."
Hillary
"It's a big deal if your kid or you have a sniffly nose when we're around you. It might just be a cold, but that cold could be a ticket for my child to go to the hospital. Hospital stays are expensive and life-disrupting, as well as so stressful and scary. Will my child have to go back on oxygen? How many times will they be poked with needles? All because a parent was like, 'Oh well, no fever!'"
Melissa
"I would much rather you come to me, directly, and ask me to my face about my child, instead of making assumptions or avoiding my kid altogether."
Sarah
"I have to keep my kid out of certain situations and minimize certain kinds of activities so he does not become further traumatized. It's not really a choice. I have to. Also, what might look to you like I'm too permissive or soft is me actually taking care of my child in the safest way, because he has to have connected parenting techniques and would suffer horrible trauma from more traditional styles, such as punishment or rewards. His brain works differently and he can not process being punished. It doesn't work. It just terrifies him."
Anonymous
"Chances are, we’ve already tried whatever you’re about to suggest. Please think twice before doing so. Know your audience. I know parenting is hard no matter what, but it can be hard to commiserate with you about your 2-year-old resisting toilet training, when our 6-year-old is in diapers for the foreseeable future. Needing to vent occasionally about our rather unique problems does not make us negative people, and doesn’t mean we don’t love our kids."
Jennifer
"I live life, not the diagnosis. Find the things your family can do together that everyone has fun. Spend more time with your kids and family than you do researching, at therapies, at doctors, and being a keyboard warrior. This is one of the best ways to help your kid know they are a loved and valued person — not just a burden or a list of tasks. This is good for the whole family."
Debra
"I like to emphasize that my son's diagnosis is an explanation for his challenges and his behavior, but isn't meant to be a limitation. He's not 'less than,' he's different. Also, his 'negative' behaviors aren't things that I can discipline out of him, they are the result of triggers that I need to help him cope with. So, please don't assume that I'm ignoring them or letting him get away with anything, just because I might take another approach to his meltdowns or aggression."
Tracy
"Stop acting like my child is broken or there's something wrong with her. She's absolutely perfect, her brain is just wired differently than yours."
Michelle
"Don't assume a child in an assistive device (stroller, leash, etc.) is because I'm a lazy parent. They are needed for safety in public."
Amanda
"It’s better to ask genuine questions about my son's diagnosis than to assume you understand from what media tells you. Knowing one child with ADHD means you know one child with ADHD. My child is likely nothing like the picture in your head."
Anonymous
"Bring people with disabilities into your child's world, from an early age. Take the time to introduce your children to people within your community who have physical and developmental differences. Teach them that everyone has their own unique body, and some bodies grow differently. Some people's bodies look very different, and some people's bodies work different. Some people's bodies need special tools to help them walk, speak, eat, or even breathe. But, every body belongs to a person, and all people are deserving of kindness, respect, support, and friendship."
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