5 Things You Can Say To The Parent Of A Child With Special Needs
06/14/2013 - 12:44
Joanna Dreifus
Joanna Dreifus
Joanna Dreifus

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/).

 

Comments

First, thank you Joanna for this article. This is a topic not often covered. When we first received my daughter's dx, I wept struggled, and ached for understanding from other parents. I told my daughter, dx at age 10 now age 31, about your topic. She suggests your next topic should be 5 (10,15...) Things You Can Say to a Person with Disabilities! This information is also greatly needed "out there".

Offers to help in concrete ways (babysit for an hour or two) or efforts to include us in low-key socializing are very rare and most appreciated!

Glad to see the comments here- thank you so much everyone for your input. Of course, as I said, not everyone wants to hear "I'm so sorry." In my case, it helped quite a bit. Obviously you would never to say this to a parent who is enjoying a lovely moment or fun day with their child who has special needs. But if you were to see a parent really desperately struggling--having received a devastating diagnosis (I disagree that "I'm sorry" only applies to diagnoses of terminal diseases)--or if you knew that that parent and child suffered on a daily basis due to a serious psychiatric and/or emotional disorder for the child--then, I believe, why would you NOT show compassion with an appropriately-timed "I'm sorry"? I do not believe it shows pity--I believe it shows empathy and compassion. And, in my case, it made me feel much better. That being said, I understand that some people still won't ever want to hear it.

I think that 1-3 are quite ill-advised. No one wants to hear that you are "sorry" unless you are a close friend or family member and the diagnosis is new. Similarly, asking someone on the train about their diagnosis is rude and too personal. You would never ask someone without a visible disability anything that personal. #3 can often feel cheap-- parents feel like they are just scraping by or that they had no choice in the matter and have to feel special about their family's make-up.

Smile, make eye contact, hold the door open for the parent and child, let them have your place in line, compliment a sibling who might sometimes not get the attention they need, invite them out or in - everyone needs social connections, educate your own children about the disability so they can interact appropriately with the child, show compassion, give hugs, even the tiniest gesture can mean a lot to someone!!

One needs to be careful with the "I'm sorry" comment. "I'm sorry that things are tough right now" (if it seems they are) might be a better approach. That is, I think it's a good idea to acknowledge that finding out about a difficult diagnosis is hard, and that having an extra, possibly exhausting or emotionally draining share of challenges on one's plate likely feels like more than one can bear sometimes (rather than suggesting the parent is "special" and an "inspiration" for coping with this stuff.) But I think it's very important to make clear that what you're sorry about is the distress of the parent. Those empathizing should NOT imply i that the child is a tragedy. Or an inspiration. Or an "angel in disguise". Or a burden. If anyone had said "I'm sorry" in regard to any one of my kids' ASD diagnoses, I'd have had the urge to knock their block off! I'm not "sorry"; that's who they are. Could I use a hug on a hard day? Absolutely.

As the mother of 3, 2 of which are on the autism spectrum in addition to having mood disorders and ADHD, your article brought a tear to my eye.....because you are right on target! My boys and I do not need pity, or criticism. We need understanding and compassion. Thank you so much!

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