no map to this country – part 2

Noonan Photo

Hopefully you’ve put no map to this country by Jennifer Noonan on your list of “must read” books.  I enjoyed it immensely from numerous vantage points.  Here are some highlights to complement my comments in part 1:

  1. Jennifer is very realistic about gains that her daughter made through optometric vision therapy.  She writes: “During this time also she became a fluent reader, though it’s hard to say how much was due to the therapy and how much was just her own hyperlexia.  Paul, too, had learned to read at this age, after all.  What was more interesting, though, was the effect vision therapy had on her eye contact.”  As happens so often, parents have children involved in a number of therapies simultaneously.  So we always like to ask them, regarding gains that are observed during VT, what new therapies were introduced during that time frame other than VT.  That brings home the realization that VT is either primarily responsible for the gains that weren’t happening before, or at least synergistic with other therapies.
  2. Jennifer continues: “As usual, whatever worked with one kid we tried on the other, and as usual, it was not relevant.  Paul did need a weak glasses prescription, but it turned out that his convergence and other visual skills were just fine.  It was nice to know that we weren’t dealing with the kind of clinic that automatically recommended services for everyone, but it was oddly disappointing to learn that his hand-eye coordination was normal and in fact not at the root of his daily tantrums over written work in his first grade classroom.  At least then it would have been a problem we could have done something about.”  Do you know of any clinics that automatically recommend services for everyone who comes to them?  Savvy parents like Jennifer are wary of practices in which not only every one who they examine needs therapy, but siblings along for the ride and the parents as well.  It may boost the revenue of the practice in the short run, but as you can see it ultimately speaks to the practices’s credibility.
  3. Jennifer makes a forceful point about the toll that raising a special needs child takes on the primary caretakers: “Studies have shown that mothers of special needs children have as much cortisol in their brains as active-duty military members, and that 80% of them suffer from significant symptoms of PTSD.”  I read that passage, put the book down for a moment, and though to myself, wow.
  4. Jennifer relates her experiences with an ENT, Dr. Melba Lewis: “She had no website and no listing with our insurance company, and didn’t even seem to be in the phone book, yet apparently she ran a thriving business based solely on referrals”.  Several points about Dr. Lewis are part of a recurrent theme in this book.  Specialists who obtain excellent results having a thriving practice based largely on word of mouth referrals – in this day and age often through Internet Forums. Parents expect to have to wait a considerable amount of time – weeks if not months, before being able to get an appointment to see a highly regarded specialist.  And they do not expect the specialist to be participating providers with their carrier.
  5. Regarding insurance issues, Jennifer’s writing is not for the faint of heart.  She takes carriers to task for their well-earned reputation for either incompetence, or outright attempts to defraud patients and providers by delaying or denying claims that should have been paid.  She continues, “To be fair, they are not the only ones gaming the system.  Many medical offices do it too.”  Jennifer relates experiences with par providers who double bill and engage in other practices that are unsavory at best.
  6. Jennifer is effusive in her praise for a pediatric gastroenterologist, Dr. Arthur Krigsman, who maintains offices in Far Rockaway, NY and Austin, TX.  I’m curious about the connection between the two far away locations, but was intrigued by comments that Dr. Krigsman makes at the 26:44 of this YouTube video: “And all these children again are coming to me after having seen multiple doctors, and good doctors – that’s a whole ‘nother issue – they’re well-trained, they’re certified, they’re specialty certified.  They want to help.  And when people want to help and are faced with something that they don’t know, that they don’t understand – interesting things happen and that’s where human nature diverges in different directions and some people will make things up; and some people will be curious and try different things; some people will blame it on the parent … so ignorance or lack of information results in some very strange professional responses.”  Sound familiar?

2 thoughts on “no map to this country – part 2

  1. Education of the public AND the healthcare community is essential for avoiding the terrible journey that too many have to suffer before ending up in the correct hands.

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