What About the Boy?

A Father's Pledge to His Disabled Son

by Stephen Gallup

Archive for May 2012

 
 

Where do we stop? Where must we stop?

I took a day this past weekend to sit in on a conference entitled “Frontiers in Neural Disorders,” which brought together some researchers I’ve known about for many years.

I took notes, as I always do in situations like that. (I really think I missed my calling in life, because my interest in this sort of thing goes well beyond any hope of its being of practical benefit to anyone I know.)

I could report here about the general thrust of what was said about autism, schizophrenia, Alzheimer’s, bipolar disorder, ALS, etc. (if you’re curious, let me know and I’ll be glad to send my notes.) At the moment, however, I’m thinking about a short conversation I had there with Alan Lincoln, one of the presenters. I reintroduced myself and said I went to see him several years ago on Joseph’s behalf. Dr. Lincoln is a clinical psychologist with a special interest in autism, and probably at the time (early 90s?) I was hoping for an entrée into the world of behavior mod as had been introduced by his colleague Ivar Lovaas. I remember at that previous meeting he seemed to write down every word I said, and subsequently he turned us over to a younger therapist. (That experience was interesting, but I think our family was too far along — i.e., too worn down and with a son already too old — to benefit from it.)

Dr. Lincoln claimed to remember my name, and naturally he asked about Joseph’s current status. I speculated that Joseph had decided somewhere along the way that he was done with making extraordinary efforts to overcome his disability. This perception did not surprise Dr. Lincoln at all. He commented that no one wants to work at full throttle all the time. As soon as the structure of a daily program is removed (if not before), patients like Joseph often revert to what they find most comfortable. What results may not be our own idea of a good quality of life, but to some extent it may reflect a choice they have made.

It’s interesting that my wife, on that same day, went to a different presentation, to learn about enhancing our daughter’s academic success. And one of the points she brought home from that was that even whiz kids can reach a dead end when they get out from under the influence of constantly hovering parents — if they lack inner motivation. The primary challenge for the parents, then, is to bake in that motivation.

There seems to be a parallel. Of course, we all have a point beyond which we cannot go. Free will plays a part, too. Parents want both success and happiness for their kids. We can argue the objective merits of our idea of success, and insist that our kids share that idea. At least sometimes, parents know best. But sometimes, for one reason or another, the kids are going to take a different path.

And we’ve got to find a way to be at peace with that.

Win a free ebook

Complete this puzzle correctly (per my answers) and send it as an email attachment to kidsbright at gmail dot com to get an ebook of What About the Boy? in either Kindle or Nook format, or as a .pdf file (your choice). A degree in English is not necessary, although having read a bunch of books would surely help.

(I admit that a tighter format, like they have in newspapers, would have been more attractive and perhaps less ambiguous. Also wish it were easier to generate something you could complete and submit online. However, I’m new at puzzle making, and this is the best I could do in the time available.)

Just click the image below to open and then send to your printer.

 Complete this puzzle to receive an ebook of What About the Boy?
Across Down
2. Bestseller about circus life 1. Sci-fi writer knighted by the Queen
5. Setting for some Burroughs tales 3. Utopian novel with anagram title
6. Whitman said, “I celebrate ______” 4. King with a daughter problem
10. Nadsat slang for “good” 7. Still waiting for this guy
11. Sports writer, lost a daughter to CF 8. Pondered a road not taken
16. ____ Kampf 9. Translated by a committee
17. He wrote Westerns 12. Writes legal thrillers
19. Not as desirable a name as Ernest 13. “Ode on a Grecian ___”
20. The ___ Sleep 14. Bad guy in Othello
22. Requested for Algernon 15. Many poems have this
25. A modern confessional genre 18. “A single man in possession of a good fortune must be in want of a ____”
26. “The past is not dead. It is not even ____.” 21. “All happy families are _____”
27. Dog who traveled around the U.S. with his master 22. Iconic horror story penned by the wife of a poet
29. Lysistrata led the women on ______ 23. Wells’ meek folk of the future
30. He set his novel in Macondo 24. Hemingway’s old man
31. Worn by a troublesome cat 28. The cruelest month
33. “It was the age of wisdom, it was the age of ______” 29. What Atlas might do
35. A story needs this 32. “Stately, ___ Buck Mulligan”
36. Had a dragon tattoo 34. Wolfe’s astronauts had the right _____
38. Dwelt by a pond 37. Whale hunter
41. A lonely hunter 39. Premier authority of English language 
43. Went down the river with Huck 40. Nevermore will he write
44. Was read (for a time) in Tehran 42. Rabbit did this
45. Wrote a haiku in the metro  

May 3 interview on Senior Voice America

The host of this show, which is nominally for an older audience, asked for thoughts that might be useful to grandparents of a disabled child. My basic response to that was:

“Emotional support is golden. Anything you can do that’s constructive is probably going to be welcomed. For grandparents, my advice would be: Please do not suggest that you think this is anybody’s fault. For example, if your son is the father of the child who has problems, please don’t hint that, well you know, the mother’s family is kind of strange, so probably it’s something from that side, or vice-versa. That kind of thing is not going to help anybody. The idea is to help both of them cope, and then to offer whatever additional assistance you think you can.”

Unfortunately, the audio file is too large to post here. However, you can Click here to read the transcript.