More Pages: Charlotte Page 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 61 62 63 64 65 66 67 68 69 70 71 72 73 74 75 76 77 78 79 80 81 82


Could you survive?

A must-have book for the affected family, w/minor flawsThe book begins with a description of common reactions to an initial diagnosis: shock, numbness, denial, anger and grief. There are good suggestions for handling these stages, including dealing with stress and having creative and enjoyable outlets for parents and children. Another very useful chapter follows: the author thoroughly discusses getting a correct diagnosis and finding a primary doctor who is both caring and knowledgeable. The author warns us against doctors who are arrogant or controlling or who don't take enough time to diagnose a rare condition. In this case, a second opinion is called for. And in many cases, a specialist may be the best doctor for your child, an option that should be discussed and also should be covered by your insurance.
Choosing and communicating with your medical team is crucial, and there are common-sense suggestions such as keeping a notebook, using a tape recorder, and keeping a record of tests. One critical characteristic of good medical professionals is they seek out and respect the observations of parents and children. Parents can also help foster good communication, and there are good suggestions in this area: being on time for appointments, using good phone manners, and giving an occasional thank-you note or small gift.
You'll find some good information on dealing with insurance companies in one chapter, including keeping a meticulous paper trail of medical information and insurance documents and finding help, if needed, in handling insurance problems.
The author presents some very wise advice on maintaining a perspective wider than the disease; both by remembering your child's other mental and physical health needs and by considering the recreational and emotional needs of all family members who are affected, including the parents. One contribution to your child's sense of well-being and independence comes form his ability to do things for himself, so every step you can make in that direction is very important. Detailed discussions of hygiene, assistive devices, travel and safety considerations make this part of the book very practical.
The author includes tips on coping with the emotional ups and downs of your child. Often, children can only express themselves by bad behavior. The best way to deal with children's anger and fear is to pay attention to non-verbal as well as verbal cues and let them know you understand. In some cases, outside help may be a good idea. Other strategies for parents are realistic goal-setting, focusing on what the child can do, and letting him take as much control as possible. Along the same lines, children must be treated as normally as possible, and this includes discipline. There are practical suggestions for mealtime discipline, chores and acknowledging triumphs.
One important chapter for school-age children with muscle problems talks about helping parents and children cope with the delicate balance between having their needs met and being as normal as possible. In this case, parents often have to be a strong advocate for their child, sometimes meeting reluctance on the part of the school. At times, it takes a great deal of attention and monitoring. The whole issue of over-all advocacy for your child is also discussed, with pointers to help, including building a support system and using professional advocates when necessary.
Other chapters deal with keeping a healthy outlook, living in the present, and dealing with the possible death of your child. A glossary includes a discussion of genetics, disease information and possible chores for children.
There are several notable omissions, in this reviewer's opinion. Faith is only mentioned as an afterthought, while most parents find it an important part of coping with a childhood disease. The author's specific knowledge of JDMS is not impressive. Most troubling, though, is the lack of any mention of the Internet as a possible source of information, advocacy and support. Not one e-mail address or link, or support site is listed. For a book published just a few months ago, this is an egregious failing.


Remembering Charlotte: Postcards from a New South City, 1905

Max and Sarah are still entertaining.The Max and Sarah novels are characterized by their eccentricity and likable characters. It will never be mistaken for being thought-provoking, but it's a good way to pass a few spare hours.


story of remarkable life

A very good start

The Samoyed book review

Innovative use of writing exercises.

If only Aussie TV soaps were this good!<BR>The kind of book that gives "teen fiction" a good name: light, but not frothy, with plenty of emotion and drama.
Original characters with an unusual backdrop: the tropical city of Darwin in the Australian Northern Territory.
My wife and I read this on holiday -- and everyone staying with us wound up reading it as well, including two teenagers who both read it three times.
Looking forward to more from this author.


Shot Down! Capital crimes of Casper Wyoming