HD Blog

Hi. I am the webslave for http://www.hardofhearingchildren.com
and I am the author of the first book in the world on hard of hearing children which was published by A.G.Bell. My fans wanted another book. I wrote the web to avoid peer review which was 7 years because I was a mother of a hohkid, and because I realised the potential world reach of the internet because I started life as a professional librarian. A doctor reading my web might think it was full of inaccuracies because s/he was taught very little in med school about deafness. At the same time, those patients with mild and moderate hearing losses who the doctor was taught by the group as having no needs, and passing this inaccuracy on to social and educational support systems have now grown up to anti-social drug and alcohol lives, often not finishing school, and condemned to poverty or a life funded by rich parents.
The parents who come to my web are very lucky that I have chosen to provide this information to them for the benefit of the child who will have parents armed with the right things to do at school and in life. Now the parents can rebut at school meetings about the child because they know the problems, and what must be done to help.
My web is written to the standards of hon, and I am an efriend of celia at honet. I have been on the web since 1996, and at hardofhearingchildren.com since 2000. I send everyone with a hearing problem to the audiologist of their choice. All of my articles are written after research and thought, and a url is always given to ideas which are only found in one place. Because Dr. Carol Flexer at the University of Ohio, and I started the concept of the needs of the hard of hearing child especially minimal hearing losses, we are way out in front. A doctor reading my web might think I was wrong, but so far s/he has been wrong. If he is faced with a patient who is demanding better care for a child who was previously totally ignored by the medical professional, all those with a hearing threshold under 25 dB, I hope the doc might get to my web and learn something.

References which are found in two places are considered to be in the public domain as that info has passed into fact. Most of that type of info will be easily found in several texts. I use Martin's Audiology. My web is based on the auditory verbal method which I have used for the past 20 years, in 15,000 hours of one on one speech therapy. (which turned out to have been great for my HD as my speech is excellent)

It is the reader's job to evaluate what each author has to say. In research I read much more, and synthesize.
My doctor cannot type and does not do email, even though he works in a university...I have HD. I have been working on computers since the 1970's, I am miles ahead of most doctors in the information field, and I just happen to have a hard of hearing child...
so a busy person often turns to precis, and relies on a panel of editors to choose what the person is going to read. I read anything and synthesize it in my brain, but I write to the reader as one who stands in the same shoes

Dustyblues

More HD specific , I gave my thoughts about my sister who died with HD at age 42, and my mother to the HD web at ukansas.(Dr. Dubinski) back when the web was first starting. I was fat, and thought that indicated that HD was not a factor.
On the outside I see that todays doctors have thrown out years of clinical descriptions of patients like my mother who saw Penfield and Macnaughton at McGills MNI and my sister who saw Barbeau at Hotel Dieu, and I saw Barbeau for genetic counselling. and grandfather died with HD in 1954. My early records with Barbeau are gone, and I am not dead yet, and there is just a possibility that the reseachers might have learned more by putting together my early HD life, and my end.
I was depressed when my oldest child left for university, and eventually saw a psychiatrist who said I was depressed, and obsessive compulsive, and making up the HD. The psychologist working with him was really the source of this opinion, she said she knew patients with HD and that I did not have it, and should stop looking it up and thinking about it. Well, folks, my CAG is 47, and it was a minor comment on a HD wb which said that one had HD in the family, and one developed a weird collection of symptoms which lead one to realize that one had HD, which was told to the family doctor.
When my CAG was given to me I was filled with fury at the shrink. I also wonder how many patients he sees who have conditions like HD and don't get passed him.
Dustyblues

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