1. "I don’t know how you do it!"
Sometimes it’s not the words but the emptiness of the message that hurts. This statement could mean ‘Wow, I admire your dedication to your child’, but it also can imply ‘I’m glad I don’t have to deal with that!’ It’s kind of like saying ‘Boy, that sure looks heavy’ to someone straining to carry too many grocery bags to their car, without offering to help. It’s a pretty safe assumption that most parents of children with disabilities are aware of their circumstances and don’t need them pointed out in casual conversation, unless of course, the pointer-outer is offering support.
The better statement: "I imagine you might be tired, how can I help?"
2. "Will she grow out of it?"
Again, this is conversational territory that should not be entered by casual acquaintances or strangers. (And yes, strangers are often inexplicably emboldened to ask all kinds of personal questions when it comes to disabilities.) Consider the two possible answers and the implications of each. Should the questioner respond to ‘yes’ with a relieved ‘Oh thank goodness!’ implying that the current state of the child is dreadfully unacceptable? Should a ‘no’ response illicit “bummer”, or ‘Oh, I was just wondering because really she’s great the way she is, don’t you think?!’
The bottom line here is the ‘grow-out’ question really doesn’t send the conversation in a good trajectory and is therefore best left unasked. And while we’re discussing trajectories, would you ask someone if they thought their typically developing son had a chance at the Majors or might end up doing hard time at Leavenworth? Of course not! So why would you assume a parent of a child with a disability can predict her trajectory into later childhood or adulthood? The good/ bad news here is that none of us can predict our children’s futures, so why not share hopeful words with one another and pray for the best?
The better question: "What’s the most encouraging change you’ve seen in him/her over the past year?"
3. "God really knew what he was doing when he picked you to be Tommy’s parents!"
This is the theologically-oriented cousin to: ‘I don’t know how you do it!’ and ‘It takes a very special person to parent a child with a disability!’ So from a theological perspective, what are the implications here? Are we to assume that God doesn’t allow for the same free will in the reproductive process that He does in the rest of our lives? If not, are we to assume that God doesn’t give thorough consideration (doesn’t ‘know what He’s doing’) regarding parental assignments for typically developing babies? ‘Whoa, we got an irregular here, let’s assign her to the Johnsons, they seem like pretty good sports; just send the rest of that batch anywhere, we don’t want a backup in shipping!’
What does this statement imply about good parents of typical kids or not-so-good parents of kids with disabilities? Joan Crawford and Leona Helmsley aside, who are the parents that aren’t qualified for taking on a child with a disability? Excepting the adoption option, it’s really a moot point. We who produce children with disabilities are not given assessments or background checks to determine our qualifications; it just happens. Disability is a naturally occurring condition in a certain percentage of the population - always has been and likely always will be. We are not screened for qualifications; rather we are all presented with the opportunity to grow into our new roles as parents of kids with differences.
The better question: "Tell me how you see your situation in terms of your faith."
4. "God never gives us more than we can handle."
I recently saw a version of this when I walked into the hospital room of a friend’s son who was undergoing a week’s worth of unpleasant and frightening testing. A card sitting on a crammed shelf chirped in colorful letters “He Never Hands Us More Than We Can Handle.” I was able to cheer my friend briefly by promising to give a wedgie to whoever had sent that card. She had thankfully, not bought into that particular missive.
Imagine for a moment that you are the overwhelmed parent of a child with a disability. You’ve done everything you can and you’re still not seeing progress. Your child is going through a particularly difficult phase leaving you sleep deprived / frustrated / bewildered / afraid. In short, you’ve come to the end of yourself. Now imagine a well-meaning soul telling you that you should by virtue of divine appointment, be able to manage this without breaking a sweat. Can you see where this takes the frazzled mind of the weary parent? ‘Great, so not only am I failing as a parent, now you tell me I’m failing God too?!’
My own faith leads me to believe that there are an awful lot of people who are carrying burdens that are too much for them to bear for reasons to which I’m not privy. That same faith also helps me to believe that there are people who seem to show up in our lives by ‘appointment’, perhaps to help us bear our loads or for us to help with theirs.
The better question: "How can I pray for you / show you love in a tangible way?"
5. "Do you think it’s really fair that you did/didn’t have any other children?"
Yes, people really ask this question. While research does indeed indicate that siblings of children with disabilities face hardships and struggle with emotional issues that siblings of typical children do not, there is also research supporting the contention that ‘special sibs’ have greater resilience and compassion for others than siblings of typically developing children. 1
That point aside, who among us really has the qualifications to pass judgment on the family planning of others? Just as it is considered inappropriate to ask a couple without children when they plan on having some, it should be considered inappropriate to question a parent of a child with disabilities about the wisdom of having / not having more children. If they haven’t raised this topic in conversation with you, consider the possibility that they have sought guidance from someone whose opinion they respect and leave it at that.
The better question: "Tell me something special about someone else in your family."
6. "Do you think this happened because of immunizations?"
The key point to remember here is that you’re asking about a bell that can’t be un-rung. It might lead to an interesting conversation about current research on the issue; then again, it might lead to another opportunity for the parent to wonder whether they might have prevented their child’s autism if they had been ‘better informed’ about the research correlating early childhood immunizations and the development of autism in some children. And if the parent doesn’t put much stock in that research they get to wonder if you’re planning on “educating” them after the fact. Again, bell already rung! The bottom line is there’s not much good that can come from a conversation that starts with this question.
The better question: "What kind of a day is your son/daughter having today?"
7. "So wha’dya think caused it?"
See answer to question 4… The simple answer here is that there is no simple answer. There is no single substance that has been isolated as the cause of a.s.d.’s in the way alcohol has been identified as the cause of fetal alcohol syndrome.
While there is a growing body of research linking early (prenatal) exposure to environmental toxins with the presence of developmental disabilities, 2 most of this research focuses on the environmental toxins found in our poorest neighborhoods, the kind nobody chooses to live in. Asking a parent if she think there might have been an avoidable factor that caused her child’s condition invites remorse and offers no productive outcome. Asking someone whose finances severely limit her housing choices if she thinks her living conditions might have caused her child’s disorder invites regret about things outside of her control. Neither question addresses things that can be changed now, so why not ask questions about present realities or future possibilities.
The better question: "Tell me about your family’s journey with autism."
8. "Have you tried ________; I hear it really helped Jenny McCarthy’s little boy!"
At present there are myriad choices of approaches to treating the many manifestations of autism spectrum disorder. Some approaches are research based and others are based on anecdotal (specific case observations) information. Unfortunately, autism has become such a media buzzword that some of these anecdotally-based approaches have been published and/or publicized as effective in all cases.
Such ‘McCarthy manuals’ likely have something to offer to some segment of the population of families affected by autism; but none of them offer the best approach for all of us. If used as operating instructions for “all models” they can disappoint and even cause damage.
That can be hard to swallow for parents who are desperate for solutions. But the reality is that if anybody had come up with a panacea for curing / recovering / or even helping people with all types of a.s.d.’s, the word would be out.
The better question: "What have you found to be helpful?"
9. "So have you read that thing about Holland?"
For the uninitiated, there is an essay by Emily Perl Kingsley which describes having a child with a disability as analogous to planning to fly to Italy on vacation only to have the plane land in Holland. Sure at first you’re disappointed, but hey, the tulips sure are pretty! All right, all pettiness aside, the essay does offer some good advice about appreciating the unexpected joys you encounter instead of just pining for the original destination.
Where Holland and I part ways, however, is that well-meaning people often share it with parents who are not yet in a place to receive that wisdom. Like adjusting to life with a child of any kind, adjusting to having a child with a disability is a lifelong proposition. Parents of children with disabilities just have the process of adjusting to a bigger change in expectations added into the mix; but it’s an adjustment that often includes working through some intense feelings for some time.
The better question: "This must be a lot to get used to, how are you feeling these days?"
10. Avoiding the parent for fear of saying the wrong thing.
This last one may seem surprising after all of the preceding warnings about what not to say, but from a psychological standpoint one of the most painful human experiences is not being spoken ill of, but being ignored all together. 3 In his book ‘The Art of Dying’ author Rob Woll states that those grieving the loss of a loved one are often ignored by people who out of fear of saying the wrong thing, don’t say anything at all. Parents of children with disabilities grieve the ‘death’ of expectations they had for their children’s lives (and their own lives) if things had turned out differently.
I believe that the vast majority of people want very much to say the right thing to parents of children with autism and other disabilities. It stands to reason then, that some choose avoiding such parents all together to be the better alternative to unintentionally saying something that may offend or hurt. To these individuals I have three pieces of advice: relax, give it your best and consider the option of being present without saying anything.
Having worked in disability advocacy for a decade before becoming a parent of a child with a disability I entered the “parents’ club” with a bit of insight. No matter what you say or how you say it, there is a small segment of the population (disabled or otherwise) who will find offense in whatever you have to say. This is both terrifying and liberating: terrifying in the sense that you never know when you’re going to encounter a representative of this group, and liberating in the knowledge that you really don’t need to expend your energy on pleasing them because it’s never going to happen.
Aside from the league of the chronically offended, I think I can speak for most parents of children with disabilities when I say that simply noticing and coming alongside us during the rough times is the best thing you can ‘say’ and that words are nice, but optional. And by coming alongside, I don’t mean showing up at our doors with a meal every Thursday (although I’m certainly not discouraging that) but simply engaging with us at a meaningful level such that we get that you know that our lives are different from yours. Sometimes those differences create extra work or hardship, and sometimes they feel like riches, but whatever the case, they are there. And speaking as a mom who sometimes feels embarrassed by riches, I’m pretty thick skinned when it comes to the attempts of others to enter my world. And in the end, I think most of us are.
The better response: show up.
1: Moore, M.L., Howard, V. F. and McLaughlin, T.F. (2002). Siblings of children with disabilities: A review and analysis. International Journal of Special Education, 17, 48-62.
2: Hood, Darryl B., Meharry Medical College: Prenatal exposure to benzo(a)pyrene impairs later-life cortical neuronal function & multiple other studies on environmental toxins’ affects on unborn babies.
Monique M. McCallistera, Mark Maguirea, Aramandla Rameshd, Qiao Aimina, Sheng Liua, Habibeh Khoshboueia, Michael Aschnerb, Ford F. Ebnerc and Darryl B. Hooda, , aDepartment of Neurobiology and Neurotoxicology, Center for Molecular and Behavioral Neuroscience, Meharry Medical College, Nashville, TN 37208, USA
bDepartments of Pediatrics and Pharmacology, Center in Molecular Toxicology and Kennedy Center for Research on Human Development, Vanderbilt University School of Medicine, Nashville, TN 37212, USA cDepartment of Psychology, Center for Cognitive and Integrative Neuroscience, Vanderbilt University, Nashville, TN 37212, USA dDepartment of Cancer Biology, Meharry Medical College, Nashville, TN 37208, USA Received 20 February 2008; accepted 23 July 2008.
Available online 9 August 2008.
3: Moll, R. (2010) The Art of Dying: Living Fully into the Life to Come, Intervarsity Press