And gently lead those that are with young. Isaiah 40:11

Tuesday, June 29, 2010

Zoe: A Mother's Good Night Story

In Her Dreams by Suzanne Perryman (SPECIALNEEDSMOM.COM)

Zoe calls me during the night, and I go to her- sometimes she needs milk, or is tangled in the confusion of blankets she likes to cuddle , sometime it is more than that. But when I tuck her in again, her head atop her Barbie pillow with one arm tucked underneath, I wonder about her dreams. She tells me sometimes about about the monsters and the princesses that visit in her little girl dreams. But as I watch her now, eyes closed, the even breathing of sweet sleep beginning, so content. I wonder what she dreams. ... O in the middle of the night, is often frightened - as if the anxiety she battles by day is exaggerated with the dark of night. I understand this, instinctively. When I find myself up in the middle of the night, soothing her fears, getting a snack for her, I worry too.. about the future, their future, how much I have to do, how much I can't get done, I worry about the rising cost of healthcare, the marketing jobs on my to -do list, the appointments I need to make, even the laundry that sits unfinished. When I have tucked them in again, I crawl back under my covers. I seek the warmth of my husband and try to relax,saying a prayer for my girls. But as I start to fall off to sleep, I still can't help but wonder about Zoe when she dreams. Does she walk in her dreams? Can she run? Dance? Bike ? Can she wear dress up high heeled Cinderella shoes and dance about in play? Does she dream of those things she so often asks to do? I hope so. I hope her dreams carry her into her own magical world, so that if only in her slumber, all her dreams come true.

Monday, June 14, 2010

DNR Order Issued for Disabled Child Without Permission of Parents

Dad stages protest in Glens Falls over DNR order issued on his disabled son without his permission

June 14, 7:33

Jack Frost prostesting DNR order issued for his son without his input or permission

Glens Falls, NY--Rain did not stop Jack Frost and his friends from holding a brief protest on Saturday, June 12, 2010, in front of the office of Glens Falls Pediatric Consultants.

Frost has spent months trying to get the attention of politicians, school officials, state officials and the media concerning an issue he believes is very important to all parents--the issuing of DNR (Do Not Resusciate) orders on disabled children without the consent of both parents.

A DNR order was issued on Frost's disabled child, without his input or permission. Frost has been fighting to have the DNR revoked.

Jack Frost and friends protesting in Glens Falls

According to Frost, New York State Public Health Law section 2977 sets forth a process for ordering a nonhospital DNR

"consent to a nonhospital order not to resuscitate shall be governed by section 2967 [Decision-making on behalf of a minor patient]..." Section 2967 requires consent of the legal guardian/parent and consent of the minor unless the physician determines that the child is unable to provide consent. Also, "Where the attending physician has reason to believe that there is another parent or a non-custodial parent who has not been informed of a decision to issue an order not to resuscitate the minor, the attending physician, or someone acting on behalf of the attending physician, shall make reasonable efforts to determine if the uninformed parent or non-custodial parent has maintained substantial and continuous contact with the minor and, if so, shall make diligent efforts to notify that parent or non-custodial parent of the decision prior to issuing the order." Public Health Law Section 2967 (2)(b)."

"(c) If the attending physician has actual notice of the opposition of a parent or non-custodial parent to consent by another parent to an order not to resuscitate a minor, the physician shall submit the matter
to the dispute mediation system and such order shall not be issued or shall be revoked in accordance with the provisions of subdivision three of section twenty-nine hundred seventy-two of this article."

Fathers who love being dads joined Jack in the protest

In spite of multiple emails to and conversations with his child's school, pediatrician's office and other people, Frost has been unable to get the DNR lifted. Frost even went to the Wilton Mall to discuss the situation with Senator Roy McDonald back in December when McDonald set up there to listen to constituents' concerns. Frost maintains that a DNR in his son's case is totally unnecessary as his son has only been hospitalized once. While his son is wheelchair bound he is "cognitively fine, very bright and has a good sense of humor."

Diane Coleman, JD, President of Not Dead Yet, based in Rochester, wrote a letter to Senator Roy McDonald on behalf of Frost, drawing attention to the dangers of DNRs, especially on children.

In her letter, she said,

"Children with disabilities deserve the equal protection of the law, and equal access to the same
health care treatments that non-disabled children have a right to expect. "

"One documented problem with DNRs is that health care providers over-interpret them, broadening their meaning beyond CPR to the extent that they deny other health care treatments."

"New research suggests that some doctors may too-broadly interpret the "do-not-resuscitate" (DNR) orders that some patients choose near the end of their lives. . . .For the study, the researchers surveyed 241 physicians . . . overall they would try fewer therapies when there was a DNR order. "Physicians are less likely to agree to initiate procedures ranging from complex therapies, such as intensive care unit transfer, to simpler interventions, such as blood transfusions,“ write Beach and Morrison. The report can be found in the Journal of the American Geriatrics Society 2002:50."

"Coleman stated also, "Children have tremendous capacity to recover from adverse medical conditions and, with or without disabilities, enjoy life, "playing the cards we are dealt," as the saying goes. My parents were told that I would die by the age of twelve due to my neuromuscular disability, but here I am at age 56, still working full time."

Because he has received little response from politicians, school officials or his children's pediatrician, Frost decided to take to the street last Saturday to bring attention to his plight and the plight of his son. He was joined by several friends who staged a brief protest in front of Glens Falls Pediatric Associates in spite of the rain.

For more info: Read more articles by Dan Weaver on parental rights, family court, child custody, child protective services and similar topics.

Click here to find out more!

Wednesday, June 2, 2010

A Chance For Bliss: Special Needs Persons Helping Special Needs Animals

Boston quote
Have you see the recent story on A Chance for Bliss,? It is a unique animal sanctuary , a home for senior, special need pets, and for those with end of of life issues. It is run by David and Deanna Bartley in Penryn, Calif. This wonderful couple not only helps animals of all kinds in need, but also brings people with special needs in to help with the animals.

Whether animals provide a service or just their companionship, pets are a great help and comfort to a person with special needs. Petting a dog has been shown to lower blood pressure. Bringing a pet to a nursing home cheers everyone's moods and helps resdents engage in more social interactions. The Bartley's have taken this a step further at A Chance For Bliss; they understand that persons with special needs can also be a great help and comfort to their animals in need.

Pet therapy, therapeutic horse riding, and hippotherapy utilize relationships between people and animals to improve people's mental and physical health. Through the animal-human bond, animals offer us unconditional love and companionship. The Bartley's recognize that special needs persons can provide the same kind of acceptance, love, companionship, and friendship to a special animal in need. Their program brings happiness and companionship to those most often forgotten in today's society: the elderly, the mentally and physically challenged, and the terminally ill. And this, of all species.

Please visit A Chance For Bliss's Website at