Parenting has become a playground for unwanted advice and excessive judgment. When you are parenting a child with special needs, you often encounter more than your fair share. While many people mean well or may just not know what to say, others can be quite insensitive and, often, ignorant.
Unfortunately, many parents of children with special needs have encountered this type of thoughtlessness. In an informal survey of local parents of special-needs children in the New York City area, the same comments kept creeping up when asked about negative statements they regularly hear. Here are just a few:
• “He is just being spoiled.”
• “She is playing you. You need to discipline her.”
• “Are your other kids OK/normal?”
• “He will walk when he’s ready,”
• “Children develop at different rates, but they all catch up.”
• “Oh, there’s nothing wrong with him. He’s a kid, he’ll grow out of it.”
• “God only gives you what you can handle.”
• “You are so much stronger than I could be. I just don’t know how you deal with it.”
When a neighbor, fellow parent, or sometimes, even a family member, offer their harsh two cents, they likely have no idea what the child or parent is battling. Special needs can range from physical disability to mental or emotional disability and developmental delay, all of which often overlap.
Someone might see a bratty toddler refusing to do what his mother asks, but not the physical and emotional demands that child is dealing with internally, or the exasperated mom who is intentionally allowing the behavior because she knows her child better than anyone else. No one has to put on a show to please those around us. The only person the mother owes her allegiance to is her child.
AnnaMarie, a Brooklyn mom of a 5-year-old boy who has autism spectrum disorder, says the unwanted comments are grating.
“I can’t tell you how many people say ‘Oh, there’s nothing wrong with him. He’s a kid, he’ll grow out of it,’ ” she says. “Ugh! Drives me crazy. Another thing is ‘He made eye contact. Autistic children don’t make eye contact.’ ”
Often, the person making judgments doesn’t know the situation.
“It always amazes me how people assume my child is just being bad or is spoiled,” says Cherie, a mom of a 13-year-old son who has early onset bipolar disorder. “Then, when I explain he has a disorder, they say, ‘Oh, I didn’t know.’
“The most infuriating situation was at a doctor’s office. My son had to take one of those breathing tests where you have to breathe into the tube until your lungs are empty. He had difficulty comprehending what he was supposed to do and was very fidgety. I was in the other room with my other son, but stepping back and forth between both rooms.
“I heard the tone change in the nurse’s voice and asked her what the problem was,” recalls Cherie. “She told me my son was being difficult over this simple task. When I explained he had an emotional disorder and being the end of the day, he was actually doing very well, she said, ‘Well, how was I supposed to know?’ I told her she was not supposed to assume he was just being a brat.
“Unfortunately, it happens more often than not, especially when your child looks ‘normal.’ ”
Writer and poet Maya Angelou once said, “Words are things,” a powerful statement indeed. Words have the power to bring people down, create stress, and foster insecurity. Yet, they also have the ability to uplift, promote positivity, and nurture hope.
All parents appreciate an encouraging word and sincere compliment, but more so, all parents can use help.
Here are some of the most encouraging statements received by parents of children with special needs:
• “How did your appointment go last week?”
• “What can I do to help you?”
• “I love you.”
• “I just wanted you to know that I am thinking about you.”
• “Can I watch your children while you take a nap or get some alone time?”
• “You are doing a wonderful job.”
• “I’m proud of you.”
• “I’m here for you.”
• “Do you want to talk?”
Something as small as having a positive and encouraging attitude can brighten a person’s day.
“When people acknowledge how far my son has come, or say to me, ‘You’re a great mom,’ it always brings a tear to my eye,” says AnnaMarie. “I work hard at being a good mom, and sometimes, it’s really a struggle. To have others acknowledge it really makes a difference.”
Danielle Sullivan, a mom of three, is a writer and editor living in New York City. She is a rare species called a Brooklyn native and very proud of the fact.
