"I work in Early Intervention in California," the email read. "I work with a family who is exploring conversations to have with people who ask, 'What is wrong with ******?' They also want to begin to have simple conversations with their son about how he can explain his CP, and what his older brother might say to his friend when asking why little bro can't walk yet or why he uses a walker or Rifton. The child is going to enter preschool in an inclusive environment. He is very social and talks up a storm. Any recommendation would be helpful."
Like many parents, I could write a book on this. But, here goes. I'll break it down:
How to respond when others ask "What is wrong with your child?"
Let's put aside the use of the word "wrong" for a hot second. Obviously, it's a parent's personal preference whether or not to disclose their child's diagnosis. I've always been open about it: I'll usually say, straight up, "He has cerebral palsy." Depending on the situation, I might go on to explain that Max had a stroke at birth. Over the years, it's gotten easier to react to negative wording like "wrong" because I've learned that I can use the opportunity to help educate people about CP. So I'll add something like, "I just want you to know that to me, nothing is 'wrong' with Max. He's an awesome kid, once you get to know him."
When kids ask what's "wrong" with Max, I usually say that his muscles move a little differently than theirs do, but in many ways he is just like they are. And then I'll encourage them to say "hi" to Max or vice versa.
Then again, you do not have to explain anything at all.
How to explain a child's special needs to a sibling
Keep it age-appropriate and realize it's an ongoing, life-long conversation—so don't put too much pressure on yourself to give the "right" response. When Sabrina was young, for instance, I'd tell her Max had a "boo-boo" on his brain. As she got older, I explained his brain had gotten hurt when he was born. "Since your brain controls your muscle movement," I'd explain, "sometimes it's hard for Max to move certain parts of his body." Then I'd end on a positive like, "But he's doing really well!" or "He's made a lot of progress!" I always point out the stuff Max can do, and emphasize his abilities.
I just got Views From Our Shoes: Growing Up With A Brother or Sister With Special Needs, a book of essays, and plan to read it together with Sabrina. Ditto for Out of My Mind, a popular novel about a girl with cerebral palsy who refuses to let herself be defined by it. Note: There are Sibshops programs nationwide for kids who have siblings with special needs.
How to explain a child's special needs to him
It's been awhile since I've discussed the topic with Max. Last spring, we had a conversation about the term cerebral palsy, and he decided that Lightning McQueen has it, too. Max doesn't think of himself as talking or walking differently than other kids; he just thinks, this is the way I am. He hasn't asked questions about CP, and I'm going to follow his lead on this one. Good books we have read about CP include Ceana Has CP, Rolling Along and I Am Not Weird! (here's a dad reading it to his daughter):
What advice to you have to offer these parents? Please, share.
Have a question you want to crowdsource? Email lovethatmax[at]gmail.com
They should do whatever makes them comfortable.
ReplyDeleteEducating people is great but not at a personal cost
(and honestly, sometimes I think people who
are of the mindset to ask what's wrong are
the hardest to really get through to. education
doesn't always result in understanding)
Not answering is fine too.
They might need to experiment to see what fits but
as long as they feel like it's totally their choice, they'll
be fine.
I sometimes feel like my response to those sorts of questions (or stares, for that matter) is a bit of a card game. Which card am I going to throw down this time??? It really helps to have a go-to script.....literally. I wrote one out, word for word, revised and revised until I had my daughter's story about CMV and CP down to two sentences. It wasn't easy. But, it's a starting point for reacting calmly and concisely to questions. When my non-SN child had troubles reacting to questions when she was about 6 or 7, helping HER write her own script REALLY helped. It gave her confidence and helped break her feelings of shame about her little sister. HIGHLY RECOMMEND!!
ReplyDeleteKeith, would you mind sharing the scripts? This is a topic that we have struggled with so far. Thanks to each and everyone of you for sharing.
DeleteGreat topic! Thanks!
ReplyDeleteI have learned that the response can change with the emotional place in which the parent hangs out that day, the intent of the questioner, the amount of time given to answer, the environment such as number of bystanders, loud, quiet, etc.
So I just go with the flow, although lately as I begin to warm up to the fact that my son with Mitochondrial Disease and Autism wakes before 6 each morning the loudest, happiest (did I also say loud??) human in the history of mankind means he is still alive and is HAPPY, thus I try to smile when I answer, reach for the positives, and know that most folks are genuinely wanting to know and wanting to understand if they are willing to ask.
When a well-meaning person would ask what was "wrong" with my daughter, I would give a little smile and say "well, nothing's "wrong" with her! But yes, she does have autism, which makes her different in some ways..." and would give a little (or a lot) of detail, depending on the person and how much they wanted to know / how much I felt comfortable sharing. The person would almost always realize that the word "wrong" was not the word they meant to say, and perhaps would use a different word next time they met a child with special needs. I always kept it light, with a smile and a wink, because most of these people asked out of caring and concern and interest. Luckily I have never met someone who has asked me what is "wrong" with my child in a mean-spirited way!
ReplyDeleteI agree that I'd rather engage people in conversation that argue with their word choice. I think we set the example of showing off our kids strengths. I wrote about some positive experiences I've had here....http://teamaidan.wordpress.com/2013/11/07/staring/
ReplyDeleteHeather
I've become a huge proponent of not explaining unless it's someone who actually needs to know.
ReplyDeleteWhat I feel like saying (if it's an adult asking the question and using that word--wrong) is "What's wrong with YOU?" But I don't :)
ReplyDeleteOur answers change from day to day because my daughter is still undergoing testing, but I usually give as little info as needed unless we are close friends. Like, "her doctors think she has a metabolic disorder that is causing her disability." And then move on.
Usually the questions are around why she doesn't speak, and when dealing with other kids we usually focus on what she CAN do rather than what she can't, like: "She's still learning words, but she really likes to play!"
I must admit that if people catch me with this question when I'm not in a great mood I've replied with "What do YOU think is wrong with him?". That certainly makes them back off. ;) On better days I, too, have said that there is nothing wrong with my son, but that he is on the autistic spectrum. If further explanation is needed I say that his brain works in a different way from ours (this is especially good with older children), and that he can think of things we probably can't.
ReplyDeleteMy concern is that I feel I must respond to the "what's wrong" comment if my daughter, who walks with a walker, hears it. I don't ever want her to hear me let that stand unanswered because there is NOT anything wrong with her. If it's a child asking, I respond, "Nothing is wrong with her. She is using a walker to help her walk just like some of your other friends might use glasses to help them see." If the child is older, I say, "Nothing is WRONG with her. She has Cerebral Palsy, which makes her muscles work differently than yours, so she needs the walker to walk, just like other kids need glasses to help them see." If it's an adult, I use my judgement... Once a nosy adult acquaintance asked me that in front of my daughter. I turned to my daughter and said, "Michele, this nice lady wants to know if something is wrong. Is something the matter?" She said, "No, I'm great!" Then I explained that she walks with a walker because she has CP ....etc etc. Kids are not invisible! They hear the question as well as your response.
ReplyDeleteI have a hearing loss and wear a hearing aid and use an FM system in school. I honestly cant recall many what' wrong questions but mostly what's in your ear. As a little kid I said, "A hearing aid, It helps me hear" and for my FM system, "It helps me hear the teacher better" The 1st response I still use with little kids. With my peers, well most of them know about my hearing aid/FM system but if I do explain it I keep it simple unless they ask for more so I don't bore anyone. :) I feel like nowadays that I(and they) are older people are more likely not to question but I really don't care. Heck I explained my FM system to my student teacher's professor!
ReplyDeleteI respond with similes and metaphors. For me, it is like being Google when everyone else is Bing/Yahoo/AOL.
ReplyDeleteI have a book to write too!
ReplyDeleteI like the idea of putting aside the word "wrong".... Emotions go wild!
We are very open when it comes to explaining Coopers CP. Cooper at 9 is now fed up with people asking. He doesn't mind the questions if they first say hello, how are you, what's your name etc. he finds it really rude just to blurt out what's wrong!
Anyway I say " coopers brain got hurt and it has trouble talking to his muscles"
My daughter who is five says" Cooper has a disability and the cord wrapped around his neck and his muscles don't work properly".
Once i was shopping with my sister and this little girl asked "what's wrong with her?' to which I said "i can't walk otherwise I'm just like you."
ReplyDeleteI'm for giving a brief but honest answer. Kids (up to age 6 or so) are curious and (mostly) not yet conditioned NOT to ask what's wrong or to pretend the person with the disability does not exist.
ReplyDeleteMy father is legally blind (he sees a tiny bit, less than 10% corrected, but doesn't use a cane/guide dog), walks a bit slowly on uneven surfaces, as a result, and regularly takes my kids (his grandkids) to the park, zoo, museum, etc. Random kids regularly ask him what's wrong with him or ask my kids what's wrong with their grandpa and, well, they just say "he's blind". No biggie. Which, well, is exactly what I used to say when people asked me what was wrong with him when I was a kid. Why beat around the bush?
My 6 year old son's BFF was born without a left hand and has always refused to wear a prosthetic (since age 2, when I met him) as he insisted it was heavy/cumbersome. On the first day of preschool, many of K's classmates walked right on up and said "you have one hand" or "where is your other hand?", K said "yup" or "I have one hand" and that was that. Again, no biggie. (The "Barney" show used to feature a little girl with only one hand; K always thought it was cool when classmates would point out to their parents that "K has an arm like the Barney girl's").
I'd lean towards giving a simple but honest answer to "what's wrong". Shooing folks, particularly kids, away from a person with a disability by stage-whispering "we do NOT say that" is more or less conditioning folks to pretend those with disabilities do not exist.
(My dad raised me as a single parent and, honestly, his blindness had a pretty minimal impact on his or my life -- we lived in a big city, two blocks from the subway).
I love answering because at least they're asking. What disturbs me is when people don't ask because they're ignoring my child as if he doesn't exist...as if he s not there. I tell our story because who knows who it can help. A friend recently reached out to me that her son was dx w autism after learning about my little one.
ReplyDeleteAs far as the sibling view? I have never said anything to Boo's older sister (5 years difference). She just has always understood that Boo was disabled. When her friends ask "what is wrong" she replies, there is nothing wrong with Boo her brain just works slower than yours. I say let the child lead UNLESS they ask questions. For example, Abby one day asked why Boo has to go to so many therapies. We explained that in order for Boo to walk, talk, etc...she needs the extra help. Abby took that and internalized it. When someone asked her why she doesn't go straight home after school she told them she has to go with Boo so she knows how to work with her at home. Kids are funny, if you let them find their own words they do just fine. At least in Abby's case.
ReplyDeleteAlright, I have a question- I know asking what's "wrong" isn't necessarily a good choice of wording, so how would you prefer the question to be worded? I think a lot of people use the word "wrong" simply because they're not sure of how else to ask. It might be helpful, especially for those of you who educate the person not to use the word "wrong", if you could suggest an alternate way for the question to be worded.
ReplyDeleteI notice your child :
Deletewalks differently.
seems to repeat movements.
is using sign language.
Or, why does she/he:
use a walker?
wear a helmet?
go to speech therapy?
I think focusing on the specific thing they are wondering about would be a nicer way to have a conversation. What's wrong, aside from being negative, is completely general.
We always responded that nothing was "wrong" ...further explanation varied depending on the persons age. I always took the attitude that people meant well and taught my son the same attitude. By the time he was 3, he would tell people, "I came out of Mommys tummy too early and the part of my brain that tells my legs what to do wasn't ready yet. It tells my legs the wrong things, so I can't walk." :)
ReplyDelete