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You Will Dream New Dreams

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You Will Dream New Dreams, edited by Stanley D. Klein, Ph.D. and Kim Schive, published by Kensington Publishing Corp.

Book Review by Richard C. Bissell

Most parents of children with special needs experience periods of obsession over what might have been. They find themselves asking, “what would my child be like if not for…” Many times we struggle to find the good, to find the positive in what life has thrown at us. Wouldn’t it be nice to interact with other families who have “been there,” faced many of the same things that we face, and are willing to share their pain, their dreams, the challenges and their successes with us?

In reading “You Will Dream New Dreams,” inspiring, personal stories written by parents of children with special needs, you can meet some of these people. You can grieve with them, laugh with them, and share in some of their successes. This anthology, edited by Dr. Stanley Klein and Kim Schive, is a revealing glimpse into a world that not very many people are aware of. These stories are real, they are inspiring and they are compassionate. You may not agree with all the choices that these families have made, but you will gain some understanding of what they face. Examine the case of Laura who decides to “place” her child after stipulating that “the most unnatural, abnormal, course of action, would be to place him.” This is not a choice I would make and probably not a choice many of us would make, but her story is certainly one that can be read with compassion.

Not that we spend much of our time criticizing others. In fact, it is judging ourselves that we parents do best. For an interesting outlook on guilt, read how Janice was able to “skip the guilt,” and how Diane was able to “turn obstacles into triumphs.” Many of us can empathize with Diane when she speaks of being “tired beyond belief” and how “friends and family can both strengthen and strain you.” It is easy to feel her pain when she speaks of desiring only to rock, nurse, and take walks with her new baby. Instead she is faced with days of doctor appointments, physical therapies, and medicine administration. Something many of us can relate to. We can also cheer for her and her family as they discover emotional healing and “splendid triumph.”

I found this book to be a very real portrayal of the challenges that we as parents all face when raising children with disabilities. There are not many easy days, but there are many joyful ones. The books main attraction is that is gives us a window into some of the different ways some parents cope and survive during tough times and how many of them are able to dream new dreams even as previous dreams vanish.

None of these stories are very long, so they can be read while waiting at the doctor’s office, sitting through a therapy session or running a tube feeding. Each one of them is from the heart, and they each have a unique message. Most of them are very uplifting, even as they remain true to the challenges of raising special needs children. I believe that Trena sums it up nicely when speaking as an older parent looking back at the challenges of raising a child with disabilities: “To comprehend it . . . is perplexing. To walk it . . . is horrendous. To survive it . . . is a test to the human spirit, a lesson in perseverance, a trip into the twilight zone, and a miracle! To look back on it is awesome!”
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Richard C. Bissell is a registered nurse and the father of three children with disabilities. he lives in Grafton with his wife Cindy and sons Eric, Aaron and Anthony.

January-April 2002

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Final validation of the Pediatric Tracheotomy Health

Status Instrument (PTHSI)

American Academy of Otolaryngology-Head and Neck Surgery Foundation, Inc., March 2002 – Volume 126 – Number 3

Christopher J. Hartnick, MD
Barbara K. Giambra, RN, MS, PNP
Cynthia Bissell, RN
Cynthia M. Fitton, RN, MSN, CPNP
Robin T. Cotton, MD
Susan K. Parsons, MD, MRP
Boston, Massachusetts

Abstract

Objective: We sought to describe the development and final testing of an instrument designed to evaluate the impact of tracheotomy on the health-related quality of life of affected families in whom a child has had a tracheotomy (the Pediatric Tracheotomy Health Status Instrument [PTHSI]).

Study Design: This cross-sectional study designed to analyze a disease-specific health status instrument to establish validity and reliability.

Results: The PTHSI was initially pilot tested in 130 families during a 3-month period from September through November 2000. After initial analysis and revision, from January 2001 through July 2001, 154 different families completed the revised instrument. The overall Cronbach’s coefficient for the instrument was 0.91, with domain-specific coefficients ranging from 0.66 for physical symptoms to 0.87 for caregiver stress and coping. Specific criterion validity analysis produced a Pearson correlation coefficient of 0.8 (P < 0.0001). Construct validity testing via Wilcoxon matched sum testing suggested statistically significant differences between subpopulations (P < 0.001). Conclusion: After initial testing and revision of the PTHSI, final instrument administration and analysis reveal the instrument to be valid and reliable. Future studies are planned to evaluate its responsiveness in longitudinal application.

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Canadian Bear

By Eric Bissell
By Eric Bissell
My Uncle Bear lives in Canada.
My Uncle Bear lives in Canada.
Uncle Bear isn’t a real bear!
Uncle Bear isn’t a real bear!
Canada is a country that is north of the United States.
Canada is a country that is north of the United States.
It is very cold in Canada.
It is very cold in Canada.
The people who live in Canada do not mind the cold. They are called "hardy people."
The people who live in Canada do not mind the cold.
They are called “hardy people.”
This is because their blood is thicker than ours, so it does not freeze in the cold.
This is because their blood is thicker than ours, so it does not freeze in the cold.
My Uncle Bear likes the cold.
My Uncle Bear likes the cold.
I don’t like to be cold. I wait for Uncle Bear to travel south to visit me!
I don’t like to be cold.
I wait for Uncle Bear to travel south to visit me!

THE END

 Published by
The Children’s Publishing Center
South Grafton Elementary School
South Grafton, MA
2001-2002

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Bissell’s Receive MR/DD Award At Statehouse

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BOSTON: Richard and Cindy Bissell of Grafton received recognition at the 2001 Department of Mental Retardation Statehouse Recognition Ceremony on March 30. The ceremony, entitled “In Partnership with Communities” and hosted by WBZ-TV’s Bob Lobel, honored fifteen individuals and/or groups throughout the state for their progress and accomplish-merits that have been achieved through inter-personal, interagency and collaborative efforts.

The Bissell’s are parents of twin boys with disabilities who determined a need in the Central Region of Massachusetts for information about disability-related resources. Working in partnership with the Central Region of the Department of Mental Retardation and central region resources, they created and maintain the www.communitygateway.org website. Families, provider agencies, staff, individuals with disabilities and community members are now able to access disability information for local, state, and national resources. The Bissell’s work with large and small groups to provide links to their website and keep online resource information current and accurate.

The Mental Retardation community held numerous events throughout the state in March to commemorate the month as Mental Retardation/Developmental Disabilities month. Regional, facilities and area offices working in concert with families and boards hosted a series of local events conferences, legislative receptions and recognition ceremonies to honor the accomplishments of people with developmental disabilities.

Cindy and Rich with Bob Lobel, WBZ TV
Cindy and Rich with Bob Lobel, WBZ TV
Department of Mental Retardation Executive Office of Health & Human Services Commonwealth of Massachusetts
Department of Mental Retardation Executive Office of Health & Human Services Commonwealth of Massachusetts
The Commonwealth of Massachusetts Governor Cellucci - Richard and Cindy Bissell In recognition of your diligent efforts and support of people with disabilities in establishing and fostering community partnerships that brought new opportunities, acceptance and self-esteem to Massachusetts citizens with mental retardation.
The Commonwealth of Massachusetts Governor Cellucci – Richard and Cindy Bissell In recognition of your diligent efforts and support of people with disabilities in establishing and fostering community partnerships that brought new opportunities, acceptance and self-esteem to Massachusetts citizens with mental retardation.
The Massachusetts House of Representatives - Richard & Cindy Bissell in Recognition of your extraordinary and exemplary efforts on behalf of people with mental retardation.
The Massachusetts House of Representatives – Richard & Cindy Bissell in Recognition of your extraordinary and exemplary efforts on behalf of people with mental retardation.
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