The Speed of Dark

October 5  (today as I write this; I may not finish it by midnight) is the 21st anniversary of my mother’s death, so naturally I’m remembering details of that day.

One of the memories is of someone who arrived about half an hour after she died–unaware of that fact–to visit her.  When I told this woman, she was of course shocked, and then blurted out the least suitable thing she could have said:  “You should know that although everyone in town thinks you’re a bad mother, I think you’re doing the best you can.”  That would be rude (and unanswerable) any time, but right after my mother died?   I was speechless with shock.  She went on to detail why people thought I was a bad mother (my kid was autistic: proof enough, 25+ years ago, that I was a bad mother, but she was full of specific things I was supposed to have done or not done.)

This is definitely something not to say to parents of disabled children.

But this is only one example of the kind of thing people say to the parents of kids with disabilities, and only the starting point for this post on “What Not To Say.”   Because remembering her has brought up the memory of so many more things people said that were hurtful–and the experience of other mothers who’ve told me about their unhappy experiences with verbal attacks.    These cluster in several categories:

Medical Questions:  Diagnosis, Prognosis, Causes:

“What’s wrong with him/her?  Why isn’t he/she {talking, walking, looking at me, whatever]?”

“Did you take drugs during the pregnancy?  Did you drink?  Smoke?   Were you promiscuous?”

“Did you know about this when you adopted him/her?”

“Will he/she always be like that?”  “Will he/she ever [walk, talk, read, go to school, whatever}?”

“Whose fault was it?  Which side of the family did it come from?”

“Who is his/her doctor?  Who is his/her therapist?   What medicines is he/she on?”

When you see these laid out separately, it’s pretty obvious why these questions should not be asked: they’re rude, intrusive, arrogant–they assume the speaker has a right to know personal family details.  Some of them directly attack a parent (usually the mother) with the presumption that she must have been responsible for the disability.  Some of them  imply that the parents aren’t doing enough by demanding to know what medical care is being provided, by whom, etc.

Curiosity is not entitlement.  If you’re not on the medical team or a close family member (and even then, you could ask more tactfully) it’s none of your business what the diagnosis is, what the cause may be, what the prognosis is, who is treating the child and how.

Arrogant Advice, Accusations, Assumptions:

These come more often from friends, relatives, and close acquaintances, who think they know more about the disability and the child than the parents do, but sometimes a particularly arrogant and bossy stranger will butt in if there’s a problem in public.

“If you would only spank him, he wouldn’t act like that.”

“If you would just make him say his words to get something to eat, he’d talk.”

“If he/she were MY child, I would [some chunk of advice] and that would fix his/her problem!”

“You’re overreacting; you should lighten up and just let him/her alone–there’s nothing wrong with that child but you just don’t know how to handle him/her.”

“He/she’s just a little slow; quit making a big deal out of it.”

“He/she doesn’t need all that fancy therapy–just good old-fashioned common sense parenting.”

“You’re too harsh/strict/overly controlling.”   “You’re too lenient; you let him/her get away with things; you’re spoiling him/her.”

These and similar statements assume that the parent is ignorant, stupid, lazy, or incompetent, and that there’s a simple solution to the child’s problem if only the parent would use it.  (Any question or statement with “just” or “only” in it implies exactly this.)   The speaker has a vision of child-rearing that’s a lot like cake-mixes….children are standard mixes in boxes, and adding the parental equivalent of two eggs, some vegetable oil, and water, then following directions on the box will produce a typical child.   Your kid isn’t typical, and you aren’t doing the typical things, so obviously you’re an incompetent cook…er, parent.

Personal Guidance and Feelings:

An astonishing number of people who have never had a disabled child are sure they know how the parents should feel and react to all situations.   Family members and friends–especially those who have children near in age to the disabled child–are fond of denying the parents’ right to have the feelings they express.

“You should be glad it’s not worse. ”   (I am, but it’s still hard when my kid is crying in pain, I’m not getting more than 3 hours sleep a night, the bills are mounting up….)

“You should be glad your other children are normal.”  (So I shouldn’t care that this one’s needs rob them of my attention and family resources?)

“You should have another child; he/she might be normal.”  (Grrrr!)

“You shouldn’t feel like that.”   (whatever “that” the parent has confessed to, most often to not being a Pollyanna, to having felt grief or sadness or  worry about the future.)   (And you can turn your feelings off and on like a spigot?  Aren’t you the person still seething over the teacher who called your kid spoiled two years ago?)

“It doesn’t help/isn’t good for you to have these negative feelings.”   (When did you get your doctorate in psychology?  My doctor says it’s good for me to admit negative feelings.)

“Look on the bright side.”  (I’m cleaning fecal matter off the walls for the fifteenth day in a row.  WHAT bright side?)

“God doesn’t give anyone more than they can handle.”   (O  Lord, save me from the comfortably pious.)

“It’s time you moved on and quit dwelling on this.”  (I’m living with it 24/7/365–there’s no place I can move away to.  If you had a clue, you’d understand that.)

What these statements really mean  is “I don’t want to be bothered with your problems,”  or “I don’t want to have to think that you might envy or resent me because I have an easier life.”   These statements do not help the parent

It is normal for parents who have a disabled child to have conflicted feelings when seeing other children progress past their child.  Every birthday party, every first day of school, faces the parent with the reality that other children are growing typically,  other children’s parents are enjoying watching their children grow typically–anticipating and enjoying the markers of growth and development….while they themselves are seeing their child struggle to achieve what these children do easily.   Do they hate the typical children and wish them ill?  No, of course not.   But they do wish their children had less struggle and more success.    Parents anticipated a healthy, typical child; they are naturally, inevitably sad when that’s not what they get.

Expressing those feelings is an essential part of getting past those feelings–of connecting with the real child, committing to the real child, and being full partners in helping that child achieve all he or she can.    It is for the parents–not anyone else–to work through their feelings and find ways to do what must be done in spite of them, because of them or just with them.   Being told they shouldn’t feel what they do feel does not help.

False Praise:

“I just don’t know how you can stand this…I couldn’t possibly….” and its many variations.

This is all about the speaker, who wants to believe that the parent is so far on the road to sainthood that the speaker doesn’t have to do anything to be helpful (saints don’t need help) or consider what the real cost to the parent might be.  Parent is a different order of being and therefore…the speaker can congratulate himself/herself on being humble without actually having to do anything useful or suffer any inconvenience.   The “I couldn’t possibly do what you do…” types never actually offer to help…they’ve already said they can’t possibly, and they mean it.

Real praise is rarer, but precious: the woman in the shoe store, helping me find shoes for our son, who said (when my husband had taken our son for a walk around the store to try out one pair, “You’re so good with him.  It’s great to see a parent being patient with a child with problems and not yelling.”    That lifted my spirits for at least two weeks, and there’s a little glow coming off it over 20 years later.

Show-offy Religion:

We’re lucky in having a faith community now that’s supportive of us and our child–and of other families with a disabled family member.  We didn’t always have one (some of the comments above were laid on us at the other places.)   In the context of our present faith community, we have prayed with others, for others, and have been prayed for: with our consent, and in the traditions of our faith community.  But we’ve also been targeted by some people who think spotting a disabled or sick person is an opportunity for them to show how pious they are.

“We’re going to pray for your child.”   We were in a restaurant with our son one day when three adults from a nearby table got up, came over, and announced that they were going to pray for him and linked hands.  One  grabbed hold of our son’s hand, and the others held out hands for us to hold.   Naturally, half the other people in the restaurant stopped eating to watch.  Our son, who at that age didn’t like being touched by strangers,  turned red and made an unhappy noise, trying to yank his hand free.  Through clenched teeth I said “No thank you.  And please do not touch our son; he doesn’t like it” and one of them said cheerfully (and too loudly) “That’s all right; we’ll pray about that.”    No.  We got rid of them, and they were unhappy about it, and none of us enjoyed the rest of that meal which had started so well.   This was not the only time–several times when our son was very young (and cute–and I don’t think that was accidental) I was approached in public by strangers who wanted to pray over us.  I have heard of people being accosted by people from another religion, not just another branch of their own, who assumed the parents should be delighted to have someone pray over their child in public.

No.  Do not do this.  It is rude.  It is offensive.  And it is harmful.

If you want to say a private prayer for a family you see across the restaurant with a disabled child, no one’s going to get upset.   If, in the context of a shared faith community, you feel an urge to pray for a child or family, the traditions of that community will suggest an acceptable way.  But interrupting families to push your desire to feel important on them?  No.  It’s rude, it’s arrogant, it’s cruel.

Some faith communities are not–sadly–supportive of families with disabled children, especially those whose disabilities cause unwanted behaviors.  One of the commoner problems families face is rejection or disapproval by their faith community at the very time they need its support.    This is not limited to any one religion or any one group within a larger religious community–but it is a serious problem for the affected families.

What are some Good Words that could be said instead?

For strangers,  not much–a friendly smile that recognizes the family and child as real people is enough.   For friends and family, recognize that the parents are the experts about this child.  If you’re close enough to feel you have a right to know more, ask in a way that does not accuse them.   “I notice Johnny isn’t talking–does the pediatrician have any ideas?”  Let them tell you as much as they want; be alert to signals that they’re not comfortable talking to you about it yet.  If they are, listen and learn–and then ask questions that show you’re willing to learn, in a tone of voice that doesn’t accuse the parents.

“I don’t know much about that–can you recommend something I should read?   Or do you have time to explain?”

“OK, I get that he’s on a special diet…so when he comes to visit us grandparents, what should we know?”

“What kind of toy would she enjoy this holiday/birthday?”

Praise the parents for what you observe them doing:   “You sure are patient.”   “You sure understand his/her speech better than I do.”   “You know how to make him/her happy.”  “You’re doing a good job with him/her.”   “You do a good job balancing your attention  between him/her and the other kids.”

Offer to help:  “Would you let me take him/her to the park on Tuesday afternoons?”  “Want some help getting the wheelchair into and out of the car when you go to therapy sessions?   I’m always around in the mornings.”   “If you could use an extra hand going grocery shopping, let me know.”   “You know I have a shop in the basement–if you can show me what he needs, maybe I can build it.”   Or, “I’ve been trying to think how I could help–but I don’t know anything about [child’s condition/ parents’ situation].  What do you need most this coming week?  I’m free from one to three Tuesday through Friday.”  (Making it a specific time-frame indicates you’re serious.)

Find something positive to say about the child every time you encounter the parents:  he/she is cute, or said “Please” before grabbing a cookie,  or you saw him/her climb up a step by himself.   Parents hear negatives all the time–they’re always being told how their child does not meet developmental markers on time–so anything positive is a pot of gold that can refresh their spirit.

If a parent confides a feeling that makes you uncomfortable…remember that your discomfort is your feeling–it’s for you to deal with, not to push that discomfort back at the parent.   Listen with empathy.   Accept that people have feelings you don’t share–but that are real, and necessary for them to cope with.   “That’s tough,” works for a lot of situations–acknowledgement of the other person’s reality and that they find it difficult.

It takes no more effort to shape your lips around Good Words than around Bad Words…but it can take some effort to realize that some of the words uttered were–intended that way or not–Bad for those who heard them.   The effort is worth it, on the recipients’ end of things…if you want to keep your friends who have a disabled child, if you want to be welcome in your relatives’ home…better start pruning back the Bad Words and letting the Good Words flower.  Like many other parents of a disabled child,  I finally divested myself of the so-called “friends” and “relatives” who persisted in giving us more grief.