15 Things I Don't Want to Hear as a Parent of Kids With Disabilities
In the last nine years parenting two children with disabilities, I’ve heard my fair share of unsolicited parenting advice and, although well-meaning, ignorant comments. Some comments I can brush off easily; for others, I have come up with answers. Some make me practice my self-control and being kind even when I feel like screaming, “Are you serious?”
Some comments come from strangers and I like to take their initiative as an opportunity to educate. I am a parent who does not mind questions and I am glad to help people understand disability. But that is my choice as a parent. One of my daughters has recently asked me to either ignore those people and walk away, or tell them their questions are rude. She is 11 years old and has cerebral palsy, and we are getting to the age where I need to let her lead the way.
For example, when people ask me in front of her, “What’s wrong with her?” She no longer wants me to say, “There is nothing wrong with her, she has cerebral palsy,” followed by an explanation of what cerebral palsy is. We have reached an agreement, and when people ask this, I turn to her in alarm and say, “What’s wrong? Sweetheart, are you OK? Are you OK? What is happening?” Then I turn to the person who asked and say, “What’s wrong with her, what do you see?” Invariably, the person who asked either recognizes their question was inappropriate and apologizes, or they fumble with their words trying to explain they meant, “Why is she in a wheelchair?” To which my daughter has asked me to say, “You are asking for private medical information.”
The most hurtful comments, for me, usually come from family or close friends. Those comments often feel like criticism on my parenting or they invalidate our experiences, like “You let her spend too much time on the iPad, that’s probably part of the problem,” or “All kids do that, stop worrying.”
And although I do believe most people are not trying to be mean (some might be trying to be supportive) when you hear these comments over and over, it begins to feel demoralizing.
We reached out to our Mighty parents and asked, “What are things you don’t want to hear as a parent of a child with a disability?” Their responses reflected the fact that many of us are recipients of the same attitudes toward disability, and perhaps we are a little tired of hearing these things.
1. “God gives special children to special parents.”
We know we are not special; we are ordinary people. Taking care of your child and doing whatever is necessary to help them is not what “special” people do, it is what parents do.
Although opposite of this sentiment, one parent shared the other side of “spiritualizing” disability when she was told, “You are cursed by the sins of your ancestors.”
2. “But she looks normal!”
Some disabilities are invisible. This comment suggests doctors who diagnose the child are incompetent and the parents are misinformed. Just because you cannot see a disability doesn’t mean it is not there.
One mom said she was asked, “Are you sure about his diagnosis? You should ask for a second opinion.”
3. “That child just needs discipline!”
This is perhaps one of the most hurtful comments, as it implies behavior is a result of poor parenting. It’s saying, “You are a bad parent,” when in reality most parents of children with behaviors are spending hours and hours in therapy and interventions trying to help their children cope with their surroundings and sensory input.
Parents in our community have been told, “I would spank it out of them, my kids would never do that.” “That’s your karma.” “You have not stepped up enough as a parent, that’s why your son has so many issues.” “Can’t you control that child?” “If I had your kids for a week they wouldn’t behave like that anymore.”
4. “I’m sorry.”
Said with good intentions, but it suggests disability is bad. It also suggests we got the “short end of the stick,” or a “less than” child. Our children with disabilities are children first. They are loved, cherished and invaluable. This comment shows pity, which reflects a disability attitude that unfortunately is the most common in our society. We are not sorry. We love our kids. Instead, help us celebrate them!
5. “He is taking too many medications, that is why he has problems.”
Here is the thing: if a child is taking medications, it is because they need them. That’s all there is to know and all that matters. Personal opinions can be kept private as they are not constructive. A parent should not have to justify why their child is taking medications. It was most likely a long process and something they took time to process and understand. The decision was not made lightly and it was made with the child’s best interest in mind.
One parent shared, “[Someone suggested] I should stop giving her insulin and read about natural things that could help her. There is no replacement for insulin but insulin! Your body needs it or you die. Cucumber water and Chinese herbs aren’t going to help her. Or, maybe she should watch what she eats, what did she eat when she was first diagnosed with diabetes and how much did she weigh? Type one diabetes is not type two diabetes. Research, research, research!”
6. “She’ll grow out of it.”
When my daughter was born with Down syndrome, we even heard this one. Really? Her condition is genetic, as are several other disabilities. People don’t “grow out” of their disability, regardless of what it is. Disability is not a cold to get over with chicken noodle soup and rest. Children with autism become adults with autism.
A mom shared, “Home nursing agency [said] she’s an insurance liability, but gladly call back if she snaps out of it.”
7. “I could never do it.”
Do you love your children? Then yes, yes you could. It’s really that simple. Some of us hear it so often that it starts to sound as if our children were unlovable. Our children are as lovable as any other child. It also suggests only “special people” can love them, and we already covered that one: ordinary people love their kids.
8. “Have you considered sending him to a group home?”
Just a generation ago, people with disabilities were sent to institutions and were shut out from the world. This comment is a remnant of those attitudes towards people with disabilities. While there might be situations where this is necessary, assuming parents don’t want to keep their children shows how little our society values people with disabilities. We love our kids, we want them home, we just need support so we can help them.
A parent shared, “[A] behavior specialist told us to consider sending her away [and it would be a] vacation for myself and our family.”
9. “Have you tried giving _______?”
Many of us have heard that, “my friend’s cousin’s neighbor had a child with the same condition and they tried this herb and now they are ‘cured.’” Trust me, if it is a possibility, we have probably heard about it and might have even tried it. We spend hours and hours doing research online — if we need advice, we will ask for it.
10. “Didn’t you know before birth?”
First, this is a personal question. Second, it suggests had we known about our child’s condition we would have chosen to terminate the pregnancy. Worse, it suggests the person asking would never love or want a child like ours. It is offensive. And if we didn’t know, does it mean we had “bad luck” and are now “stuck” with our kids? My children are a gift and a joy. I love them more than life and disability doesn’t change that one bit. My children are wanted.
11. “It could be worse, at least she can walk.”
This diminishes our struggles. Just because someone has more challenges doesn’t mean ours are not valid.
12. “He’ll eat when he is hungry.”
Sure, this works for some kids, but not for all! Kids who have sensory issues may not eat when they are hungry, so we do what we have to do to keep them healthy and alive.
A parent shared this comment made to her: “Just give her some ice cream, she will eat or she will eat if she gets hungry.” This regarding her 100 percent tube-fed daughter. Mom said, “You seriously think I haven’t tried ice cream? Oh, and no, she will starve to death. She doesn’t feel hunger.”
13. “My kid does it, too.”
Another comment diminishing our experiences and invalidating our fears. Even if your kid does it, too, it is not the same.
14. “God only gives us what we can handle.”
If we are going to dish out “spiritual advice,” we should at least make sure it is accurate. Without getting into theology here, this is not true — the sentiment has been taken out of context from a verse in the Bible talking about temptation. As one mom shared, “Sometimes I feel like I just can’t handle it.” I’ve been there, too.
15. “Stop using the ‘autism’ card for sympathy.”
Our child’s disability is not a “card” we play. It means we have to consider our children — disability included — in our planning, outings, gatherings and all aspects of our everyday lives. We do not want sympathy, we want compassion and understanding.
Do you parent kids with disabilities? What comments have you heard? Share with us in the comment section.
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