Strangers are blind to man's affliction

Sorry I've left the previous downer of a post up for almost a week.....it's just that time of year (not the time of year to panic about hypothetical parenthood, but the time of year that the blog gets sidelined).

Here's a new column, but this is more for shock value than anything else...I don't have much to say about it except "wow. Really? REALLY?"

DEAR ABBY: Several months ago, my husband -- whose eyesight is fading rapidly -- was forced to depend on a cane indicating that he is blind. Since then, we have encountered many individuals who have no idea what a red-tipped white cane means.

We have heard people say things like, "Isn't that fancy!" or, "I love the way you decorated your cane for the Christmas season."

Abby, please inform your readers that a white cane with a red tip is not a fashion accessory or a personal whim. Its purpose is to allow a vision-impaired person to move around independently. Vision impairment also affects a person's balance. People have brushed past my husband, bumped into him and expressed annoyance because his slowness held them up.

I'm sure a "word to the wise" from you would make a decided difference. -- NANCY IN LACONIA, N.H.

I just find this really hard to believe. I'm sure that this person would not have made the effort to send this public service announcement to Abby if she and her husband weren't encountering this kind of ignorance, and if indeed they are, then trying to raise awareness is certainly an important and reasonable step to take.

I just really, REALLY can't picture someone saying to a visually impaired person who uses a white cane to help him navigate, "I love the way you decorated your cane for Christmas." What?? This is just really, really odd, especially since the way the visually impaired use the cane is not at all the same as someone who was using it for physical support (as a "leg to stand on") would be.

It almost makes me think that, rather than strangers on the street, these are acquaintances whose shallow sense of familiarity with the person in question prevents them from realizing/noticing his gradual decline: whereas someone seeing him for the first time would likely recognize him as visually impaired, someone who has known him for awhile and thinks they understand his situation might be disposed to ignore or misunderstand how it has worsened in recent months. Or, alternatively, make awkward jokes about it, which might be another explanation.

Unfortunately, you'll probably always have people who aren't paying attention, or who are in a rush and will jostle and bump one another carelessly. I imagine this is a problem for anyone who is unsteady on their feet--although again, my understanding was that the whole idea of the cane was both to help the visually impaired person find his way, and also to act as a sign to others that he is legally blind and should be given the space to move along comfortably.

I know it doesn't do any good for me to say "what's wrong with these people??" and the woman who wrote this letter is taking the right course of action by trying to educate them, if indeed they've never heard of or seen a white cane being used. It all just seems very odd to me.

Mom's explanation falls on deaf ears

This woman wrote in to Miss Manners aware that she had responded to the situation at hand in anger and with hurt feelings, and if she doesn't totally regret her reaction, she also realizes it wasn't appropriate, either. She wants to know what she should have done instead:

Dear Miss Manners:My son just turned 3 1/2. He has moderately severe hearing loss and wears hearing aids in both ears. As a result, he has even greater problems with volume control than the standard 3-year-old.

This Saturday afternoon, we were at the library. We looked at books for about 15 minutes, checked some out, and then stopped to put his snow suit on to go out. At this point, a man in his 50s came over to me and asked me to keep my son’s voice down. I showed him the hearing aids and said that my son was doing the best he could.

The man was disdainful and walked off saying, “Excuses, excuses. Everybody has excuses.”

I was cut to the quick and blush to admit that I called after him, “And you’re perfect?”

Had we been inexcusably loud at any point, a librarian would have said something. As we were on our way out, could the man not have suffered another 15 seconds?

In any case, a stranger took it upon himself to school me. I should not have responded by showing him my son’s disability and asking for tolerance. I didn’t think I was trying to put him in his place, but it’s possibly how the man felt. And it’s possible that it is what I was trying to do, on an unconscious level. After all, parents are not famous for rational reactions when being approached about how they’re handling their kids.

What would have been the polite reaction?

Miss Manners gives a reasonable answer, I think, though I have absolutely no experience with disabled children and how best to guide them socially. What do you think?

Gentle Reader: The offense that most concerns Miss Manners here is the one you committed against your son. Whether or not he picked up every word, he undoubtedly understood that he was being cited as a special case whose hearing loss excuses him from being considerate of others.

There are two bad lessons here, in addition to the embarrassment he will feel increasingly at being singled out. One is that he can get away with behavior that others cannot, and the other is that he doesn’t quite fit in with normal people.

The stranger, while no great example of manners, was correct when he said that you offered an excuse instead of an apology. “Sorry we disturbed you” was all that was necessary.

Miss Manners' response makes it even clearer that when the man came up to this mom about the noise, she pointed (probably literally) straight to her child--which is definitely inappropriate, whether he has a legitimate difficulty with volume control or not. Talk about passing the blame!

But I also feel like a public library is not, these days, the same kind of somber, quiet place that we expected 50 years ago, or that we expect today in academic libraries. Yes, there should still be an air of respect for others and for learning, but especially in an area where a three year old would find himself, there are surely other children playing, reading out loud, and making noise. This could cut two ways....either this man maybe needs to find another corner, farther from the children's section, or maybe the fact that this mom and boy stood out among all the other chatty kids indicates that, in fact, he was being significantly louder.

I think I agree that overall, the best thing to say would be exactly what Miss Manners said: "Sorry we disturbed you," in as neutral a tone of voice as possible, and leave--since they were leaving anyway. Does this strike anyone as too hard on the mom, or the child? What about the complainer, what do we think of him?

(re)writing it in

For whatever reason, the letter to Abby that I posted about yesterday really touched a chord with me, and got me very riled up on behalf of the daughters. After conferring with a friend, who is herself the older sister of a boy with developmental challenges (and engaging in a lunch hour facebook chat debate with SK), I decided not just to blog about it, but to write in to Abby. (Vive la revolucion!)

I tried to condense my post from yesterday, and to be really specific and non-rambly. I think my letter's still on the long side, but we'll see what happens! So, sorry if this post seems redundant--it clearly is. Just want to track a submission so we can see if it goes anywhere!

Dear Abby,

I think you really missed the mark with your response to "Challenged Mom" (March 5), whose two daughters felt that she favored her son, who has "some social and developmental issues." Although the girls had been informed about the details of their brother's needs by a psychologist, they still felt "slighted."

Although I agree with the actions you suggested, I have a real problem with your reasoning. For example, you suggested that the daughters could be more involved in their brother's care, which I think is really important and valuable. But you didn't recommend this as a way to spend time with their mom or know their brother better, but instead to understand more fully how overwhelming and difficult their mother's life is.

Essentially, you advised that the mother convey to two of her children that if they only really understood what an exhausting burden the third one is, they wouldn't ask for more of her time and energy.

The mom asked you for advice on how to assure her children that they're all loved and valued equally. You gave her the tools and the permission to logically and rationally explain to her daughters why she simply doesn't have the energy or the time to love them equally.

You also implied that the daughters either don't fully understand or don't respect their brother's needs, or they wouldn't be raising this issue in the first place. The sisters have most likely been raised right alongside their brother, and witnessed his development their whole lives. Who could know his situation better?

I think it's entirely likely that they do both understand and appreciate his needs, and don' t begrudge him those--but are still hurt that he is always the center of attention.

I was surprised that you didn't at least suggest that when the daughters raise this issue, the mom respond to them with love (not by sending them to the brother's psychologist, though family therapy might indeed be useful). I think a lot could be gained by a loving response--reassuring the daughter of her value, and assessing when she feels most slighted, and making a fair attempt to adjust all of their lifestyles to lessen that.

The son may always need more hours of the mom's time and more intense attention and care than the daughters, but that doesn't mean that at every moment those needs must be prioritized above his sisters' equally valid ones.

A reassuring remark, an open mind, a listening ear and a flexible spirit might be what the daughters need more than anything, and if the mom is not able to hear them out and make some adjustments so that they feel loved and valued, then she IS favoring her son. Not by spending more hours of the day on his needs, which most likely all of them understand and accept, but by prioritizing him, as a whole person, above her daughters.

Finally, the idea that the mother seek some outside care for the brother in order to spend some alone time with each daughter each month is an excellent one, but only as a supplement to real lifestyle change. If the daughters don't feel valued and heard at home, every day, even with their brother, then the afternoon out will feel like it's all they get--that they're allotted 4 hours a month of mom's time, while the rest goes to the brother.

Both the letter from the mom and your response to it were fairly short but they had undertones that the daughters were automatically in the wrong for seeking more attention. While this mother is certainly in an overwhelming and challenging situation, well, her daughters are too. And she's still their mom. Attempting to divide her time equally among them would be an impossibility. But responding to "I feel that Billy gets all the attention in this house" with "Here's a list of all the reasons I can't focus on you," is not only cold, it reinforces that the daughter's complaint is completely justified.

Hmm...OK, yep, it is indeed really long. Oh well! That's what she has editors for. Hopefully it will annoy her enough to rise to the top of the virtual pile.

Mother's Bitter Little Helpers

Today's letter to Abby comes from a mother who has three children: two daughters and a son, who has "some social and developmental issues." The girls feel that the parents favor the son and that they've been generally slighted in family dynamics. The parents have had the son's psychologist explain to the girls that the "circumstances are different" and give them all the reasons why. Abby's reply struck me as particularly dangerous and highly unlikely to bring about the desired effect:

DEAR CHALLENGED MOM: One conversation with the psychologist obviously wasn't enough for at least one of your daughters, and my first suggestion is that you and your husband consider some ongoing family therapy for a while.

If your younger daughter is old enough, involve her while you are taking care of her brother. This will help her see for herself how time-consuming it really is, and what your responsibilities are as the mother of a child with special needs.

Equally important, if at all possible, arrange for respite care for your son once or twice a month to allow you to have some special one-on-one time with your daughters. Perhaps then they will feel less slighted.

Now, every family operates differently. Growing up, my brother and I were so close in age and so into different activities and things that there was very little sibling care back and forth--basically after about 5 years of age, anything I could do, he could do better, so doing daily care for each other was not part of our lifestyle. However, I know that in many families that is NOT the case--such separation may not be feasible or even desirable. Where there are more kids, or a wider age or developmental gap between the kids, many families expect and thrive on full engagement from all siblings in taking care of and raising each other. And that's a great and fulfilling way to be a family too--when everyone is into it, or can't imagine life any other way.

That being said, I think for that to work, it needs to be a part of the fabric of the family's values and attitudes all the way through, and it has to go both ways. The girls need to truly believe that they're benefiting in some way from engaged involvement in their brother's care. Whether it's in confident faith that the family would care for them the same way in dire circumstances, or treasuring a special bond with the brother that comes through knowing him better and more deeply, or simply acknowledging that their family life has made them capable and responsible at a young age, and turning that to their advantage in the world...there has to be something in it for them. It would be nice if it were love and altruistic, saint-like understanding. But anything would do. And I don't think that Abby's advice has much hope of leading to that end.

The daughter feels slighted...so you set her on tending to the needs of the very person she feels slighted by? Although I understand the POINT behind Abby's strategy--to give the daughter a taste of the reality of caring for a developmentally challenged child--I don't think it's the right approach. First of all--since they all live together, who has a better idea of what it takes to care for the brother than the sisters? Whether they're visibly involved or not, they can probably rattle off his schedule, and the things he can and can't do, without thinking. After mom, they're the primary witnesses to his life. They're not oblivious to what's going on, and asking a psychologist (his) to tell them about what they see day in and day out seems almost patronizing.

It would be one thing if, for example, an aunt came in, baby-sat the challenged boy, and when the mother returned said, "I had no idea what you go through, I have so much respect for the way you manage your life." That's not the case here. The daughters know exactly what's going on, because they live it too. And odds are they don't hate or have it out for their brother because of his challenges. But that doesn't mean they don't have needs too. I'm not suggesting they shouldn't be involved with his care. Ideally they absolutely would be--most likely to some extent they already are. I just don't think that the way Abby presents it, and the reasons she presents, are the right ones.

Further, I don't think this is really a great attitude to convey to your children:

"Mom, I feel like you love Jimmy more and favor him."

"I don't love him more, he's just such a millstone around my neck. Try it, you'll see."

Trying to make yourself a martyr to your own daughters, and demonstrating to them that caring for their brother is a burden that eats all your time and energy, is not going to win their sympathy or their support. Even if it's true, and you're exhausted, I don't think it's appropriate to reveal that your children. That's not the right way to get them to understand what you're going through. And really, it's not their job to understand what you're going through. They're your KIDS. And until they're adults, it's YOUR responsibility to take care of THEM. It's absolutely not a partnership of equals, and no one ever said it was. Revealing to your kids that one of them makes your life more difficult than the others is possibly the only thing worse than revealing to them that one of them brings you more joy than the others.

Speaking of which, it really bothers me that mom and dad passed off to the psychologist what should be a part of living every day in their home. It would be one thing if the brother were suddenly stricken in an accident or medical crisis and his needs changed drastically and unexpectedly--then a psychologist exploring the imminent changes with the daughters would be very helpful. And I'm not suggesting that therapy in general wouldn't be useful for this family. But the understanding that meeting the brother's extra needs does not diminish the daughters' value should NOT be a one time conversation with an outsider. It should be woven through the parents' words and actions every day.

Rather than trying to prove to the girls how hard her life is, I think this mom would be better off expending that energy listening to them and working with them to adjust ALL of their lifestyles. Abby turns it into a stand off of who's right, and who has the harder time of it, rather than a conversation about what to do. The girls feel that she's putting her brother's needs above theirs--Abby's solution just puts the brother's AND mother's needs above theirs.

When the daughter says "You don't pay any attention to me," rather than having someone else give her a list of all the reasons why your life is too complicated to include her, say something like "I didn't mean to make you feel that way. How can I make sure I hear the things that are important to you?" or, "If you can help me get dinner ready, I'd love to hear about your day while we're in the kitchen together."

P.S. Where the heck is dad in all this? Mom writes in "we," so he must be around. And yet he's totally absent from the story.

I would love to hear from folks who have more experience with this than I do. What was it like in your family? Were there times when the needs of another family member seemed to always overshadow your own, and how did you deal with it? Or on the other hand, were you the one who needed a lot of extra help at home and in life? And how'd you turn out, in the end? Is there anything your siblings or parents did really right or really wrong?