As awareness grows regarding a number of disabilities, such as autism and sensory processing disorder, people are talking. Often, they’re talking to the parents who are raising children who struggle with these issues, and they’re offering comments such as, “I don’t know how you do it.”
Although well-intentioned, those comments aren’t always well-received.
Some parents of children with special needs interpret such remarks as pitying ones, or are uncomfortable with the suggestion that their situation is a uniquely difficult one.
My view, as a parent whose two children who have received special-needs diagnoses, is somewhat different. And I’ve discovered that many other parents who are negotiating similar challenges share my perspective. It turns out that some of us really do appreciate acknowledgment of the challenges embedded in our parenting experiences.
Sometimes, we can use the extra support. Sometimes, it’s okay to extend the following sentiments our way. (Please just wait until a quiet moment to do so; for example, during a child’s supermarket meltdown, unsolicited questions or stares tend to exacerbate the situation.)
1. I’m sorry.
Sometimes, the best comment is the simplest. Lisa, mom of a girl with a genetic disorder says that when her daughter was diagnosed, others commonly responded with reassurances that the little girl would be fine, that everything would be okay. “I know they meant well,” Lisa reflects. “But I really wanted someone to say ‘I’m sorry’ so I could lean on them and cry.”
2. What is his/her diagnosis?
True, you’d be ill advised to demand, bluntly, “What’s wrong with your kid?” But I welcome discreet questions about my children’s diagnoses, particularly because I want to help educate others and eliminate stigmas. As another mom, Brittney Garner, says, “I appreciate when people ask me about her condition instead of staring at her. I love to educate about ONH (optic nerve hypoplasia).
3. Your child is lucky to have you.
Some parents immediately reverse this sentiment: “No, I’m lucky to have him!” Of course, that’s true. But understanding our children’s exceptional challenges, we can’t help but appreciate each other’s skills and hard-won expertise. And we’ll welcome similar acknowledgments from all corners. As Sherri, who is raising a boy on the severe end of the autism spectrum, explains, “I’m flattered when people say, ‘Your child is lucky to have you,’ because it means they think I am a strong advocate for my son.”
4. I think your kid is great!
Parents of kids with special needs are bombarded by information from pediatricians, therapists, and teachers — and it’s not always positive. We’d love to hear your praise for our kids. “I get sick of hearing about my child’s deficits,” says Kate O’Donnell. “It’s wonderful when someone compliments his nice smile, or the way his shirt brings out the color of his eyes, or … anything!!!” K C McHarness Holmes agrees: “I love it when people comment on the positives: she has a great smile; she likes to help others, doesn’t she; she is so good at remembering names; she has a great laugh.”
5. What can I do to help?
Parents I’ve met in the special-needs community perhaps crave this offer above all. Fellow New Normal blogger Rabbi Rebecca Schorr says, “I would love for a friend or family member to say this.” And, please, don’t keep your distance. Anna Fargo welcomes invitations for her family to join in “a birthday party, barbecue, a play date, a movie date, a trip to get ice cream.” Want bonus points? These words are music to Carrie Pine Wechsler’s ears: “We want to have you and (your child) over more. How can we make it so you and your son are comfortable coming here?”
What else might be useful for parents raising special-needs kids to hear?
Joanna Dreifus is a New York City mother of two and founder of Special Kids NYC (http://www.specialkidsnyc.com), a consulting service for families of children with special needs. She serves on the boards of YAI’s Manhattan Star Academy (http://www.yai.org/agencies/manhattan-star-academy/) and New York League for Early Learning (http://www.yai.org/agencies/nyl/).