Friday, June 21, 2013

What To Say To The Parent Of A Child With Special Needs

In my time blogging about raising a child with special needs, I’ve received a good number of emails. There are several recurring themes to these emails: some about assistive technology, some about looking for specific resources or online communities, and several from friends and family members whose loved ones have recently had a child diagnosed with special needs. In this last group of emails, people often express their love and concern for the parents of the newly diagnosed child and ask me “What should I say to them?”

Another writer answers that question this week in her article “5 Things That You Can Say To The Parent Of A Child With Special Needs.” Disconcerting, though, is the fact that although I am indeed “the parent of a child with special needs” I would not be jazzed about receiving some of these suggested comments. Let me explain why, and then I’ll offer my own thoughts on what to say.

First, don’t tell me “I’m sorry.” Like, ever.  “I’m sorry” leaves a disturbing amount to interpretation. Are you sorry that my kid is lying on the ground and throwing a fit? Ok, but maybe “we’ve all been there” would be more clear. Are you sorry that I’ve spent so much time in therapy this week, or that we had 2 doctor’s appointments yesterday, or that I’m stretched so thin that we can’t get together? Maybe “I’m sorry that things are so hectic for you right now” would fit.  Are you sorry that my kid has special needs? Well, you can keep that to yourself.  To me, “I’m sorry” comes across as “I’m sorry that your kid is the way that she is.” or “I’m sorry that you are burdened by your child.”  As I hear it, it’s an insult to my child (and a pretty bad one at that). I don’t want your sympathy, and Maya is not a circumstance to feel bad for, she is a lovely little girl. 

Second, please don’t ask for her diagnosis. It’s not appropriate to ask about other people’s medical information. Asking for a diagnosis is not making small talk, or breaking the ice----it’s asking about her private medical business. If you want to make conversation that acknowledges her challenges or “break the ice” you could ask about something specific, I guess, like “Is it hard for her to climb those stairs?” or “How long has she been using her communication device?”  If I want to share information about her diagnosis, I will----if not, asking makes things a little awkward. (PS-If you’re new here, Maya doesn’t have a diagnosis, which is particularly fun to explain to bold strangers. One time, in response to hearing that Maya didn’t have a diagnosis (after she asked), a woman asked me if I had ever taken her to a doctor. A woman I had never met asked me this. While I was eating in a diner. With my family. Seriously.)

Now, possibly disregard everything that I just said . . . because while all of the above rings true for me, it might not for others.

Undoubtedly, there are some SN parents who would appreciate “I’m sorry” and would enjoy being asked about a diagnosis. (If you’re in doubt, see the little conversation on our Facebook page last night.) I would hate those comments, but some would love those comments, while some just want to be left alone (ok, that’s often me as well, given my anti-social tendencies. I’m working on it.) and others are so happy to be out talking to other adults that they don’t care what the conversation is even about. So . . . I guess we’re all different? Who would have thought!

The bottom line is that there are no universal things to say . . . parents of kids with SN are as diverse as any other group of adults (parents of kids with brown hair, parents of kids who wear shoes, etc). Our commonality (and, to be fair, it’s not one to be underestimated) is that we have a lot on our plates . . . we are short on time and long on stress, we struggle with more than our fair share of emotional turmoil, we are usually fighting several battles at once, and we are worried for our children and their futures. But everyone responds to these stressors, and to fear of the unknown, very differently. Some people want reassurance (this will all be ok), some want sympathy (this is terrible, isn’t it?). Some people want to talk about the issues (tell me about the diagnosis), and some want to ignore them (isn’t the weather lovely today?).  

For those of you who have come here through a search engine because you’re actually trying to find the right thing to say, I offer this: just love the kids. Nothing meant more to me (and continues to mean more) than friends, family, and coworkers doting on my kid. All parents enjoy seeing others care about their kids, but for me (and, I imagine, for many other SN parents) the ideas of acceptance, inclusion, respect, and love are especially loaded.

For those of you who are just wondering what to say to the random SN parent that you might bump into at the playground, I would go with something simple. You know, like “Hi”. 


Chelsa Payne said...

I go the 'ignore and treat them like i would any other kid (with the exception of having more patience)', route. I have never felt any universal ice breaker was appropriate. I often wonder if I'm blundering around, offending parents with my approach...

Sophie's Trains said...

I prefer that people ask me what's on their mind rather just let the question hang in the air like a cloud. You know that feeling when all you can see on their face is "I am really curious about this kid but don't know how to ask". I personally feel "just ask me already!" I don't get offended better than blank stares.
Of course I don't like to hear "I'm sorry" because I am not sorry. However if people hear about Sophie's regression and say I'm sorry I accept it because I'm kind of sorry too (it sucked).
The bottom line is I am happy to share Sophie's diagnosis to establish the baseline, followed by some of her unique traits that add to her Sophie-ness. So I might say "she has polymicrogyria and it appears autism as well (we are not sure) and she loves playing at the park it will be real hard to drag her away!"

Nancy Cavillones said...

As a deaf person, knowing that my children have a 50/50 chance of being deaf at birth, I tend to ask other parents of deaf kids about their experience, and about cochlear implants if their child is wearing one. I've never had a bad reaction to my questioning so I think being sincere and having a clear motive for asking is key. But in general, I don't ask parents of SN kids anything unless I know them and I have a specific question about their experience with something, or I know they just had a major moment (like an acquaintance whose kid has spinal bifida and just had another major surgery.)

the family of mannchester estate said...

i read the post last night as well. i only liked four and five. but my personal opinion is that if you are a stranger, and you are curious, 'can i ask you about your child' is great. because some days i'm all 'let's educate the world' and other days i just got done hearing that my kid also has this new horrible thing going on and i want to push her on the swing and pretend like the world is not falling out from underneath me. :)

julia n said...

I agree, #4, and 5 are my favourites in her article. I want to reply "nothing" when asked "what's wrong with" our son. (I never do)
Tell me He looks cool in his skinny jeans (cause they cost more than mine) Tell me he has great hair (cause he does) Or better yet, say something that let's me know you understand our world. " Ah, a sensory seeker. My sister's son is really calmed by spinning as well"
At the end of the day though, I have bigger things to worry about than someone's poor wording. We just let it roll off our backs and keep smilin.

Brenda said...

I am always extra careful what I say to the parent of any child. You never know what will offend someone. I told a little girl at our church once that I loved her glasses. Exact words "I love your glasses. You look so cute". Well, I received a phone call that night from her Mom that I needed to be careful because this child was self conscious and I hurt her feelings. These were people I had known for years and our kids were friends. Some people are more sensitive than others and I have these days myself. I would never ever want to hurt anyone's feelings. And the lady that ask if you had taken her to the doctor.....really, lady?? I never cease to be amazed!

Corinn said...

I did ask a mom in a waiting room once if her teenage/young adult daughter was autistic, but I followed it up with mentioning that I am too, which hopefully tends to be the kind of conversation that's less annoying than with clueless gawkers!

I was also mostly hoping to get the daughter talking, because when I saw her I honestly thought "Oooh, someone from my planet!" ^_^

Sue said...

Thank you for doing this post! I have often wondered what to say in these situations, and I can't imagine going with #1 and #2. I have a friend with a newborn, and the baby will have chronic health issues for the rest of his life. My friend is clearly upset and anxious. I've been unsure how to address her concerns without sounding pollyanna-ish on the one hand, or dire on the other. I think your suggestion of "I'm sorry you're going through all this right now" fits the bill here, because I am, but I'm not sorry she had her son, and neither is she!!!

Janet said...

~ A general "I'm sorry" is no good. However, "I'm sorry it has been a bad day/week (whatever) is really nice". I want to know what a person is sorry about.

~ I hate "I don't know how you do it" for two reasons - it assumes I am doing it, and it tells me if you thought other wise you would need to ask if I needed help and you don't want to.

~ At my son's various therapies, when the moms in the lobby are having their therapy session, any parent can ask anything, and I will tend to ask other parents direct questions. Though everyone is very respectful and conversations almost always start with a complement. My experience is that this is a place where everyone gets it and we can quickly move to the help and support of each other. It is also a place where all of us moms cheer on all of the kids for their accomplishments. I love when other people notice how far my son has come.

Mary Evelyn said...

My son has spina bifida and uses a wheelchair. I've recently struggled with the comment: "It takes a special kind of person to raise a child like yours." I actually wrote a guest post about it this week. I know people mean well, but I can't help feeling like they mean my son is not equally lovable-- like it takes a really amazing person to muster up the affection for someone like him.

As far as meeting other moms, unfortunately I think that many people are afraid of befriending or chatting with SN mothers because they are worried they'll say the wrong thing. I don't like being avoided. Still, I think part of this is our own fault. We're sensitive about our children so many of us lash out or become defensive very easily. When I learned my son's diagnosis, I remember crying to my husband that SN moms are so intense and angry (that had been my experience!) and I didn't want to be that way. Turns out, I didn't have to be.

Anna said...

I'm autistic and sick of pity. I want to be seen as a person and a musician.

I don't want first chair, but I can certainly achieve it.