This is Lilly pictured in her Danmar helmet. Lilly is diagnosed with SCADD,
Hi Ho, Hi Ho, It's Off to Work I Go!
by Lori Dennison
After a long (almost) year home with the little dude of
the household, I am returning to fulltime employment outside the walls
of what we affectionately call The University of Dennison Hospital.
Seriously, we have more medical supplies than a medical warehouse.
Between
50 plus hours of nursing per week and preschool 16 hours per week, I am
confident that the little ball and chain I've been toting around for
the past several months will be in good hands. I will once again be
able to have meaningful conversations on a daily basis with other adults
about things I went to school for YEARS to learn how to do, rather than
discussing ostomy output with my child's doctor, or placement spots of
insuflon ports with my husband. I will no longer go weeks without
speaking to an individual over the age of ten.
Focus: Home Modifications
Funding Sources for Home Modification
In order to care for our children safely and easily, it is often necessary to make modifications to our homes, including the installation of lifts, elevators, or ramps, and the modification of bathrooms, bedrooms, kitchens, and other rooms. All home modifications are expensive, and the specialized equipment often needed by children with complex medical needs can make projects even more costly.
In this article, I hope to provide a general overview of the funding sources available for home modification projects. As is the case with funding products or services in the special needs market, funding for home modification is a patchwork of local, state, and federal sources that unfortunately vary dramatically from place to place. I will attempt to point you in the right direction to find local sources, and provide information about federal and charity funding options.
In order to care for our children safely and easily, it is often necessary to make modifications to our homes, including the installation of lifts, elevators, or ramps, and the modification of bathrooms, bedrooms, kitchens, and other rooms. All home modifications are expensive, and the specialized equipment often needed by children with complex medical needs can make projects even more costly.
In this article, I hope to provide a general overview of the funding sources available for home modification projects. As is the case with funding products or services in the special needs market, funding for home modification is a patchwork of local, state, and federal sources that unfortunately vary dramatically from place to place. I will attempt to point you in the right direction to find local sources, and provide information about federal and charity funding options.
Universal Design: Accessibility for All
by Michelle Doty
It doesn't take but a few steps to realize the world is not designed to accommodate individuals of all abilities. Being the mom of a child with multiple disabilities, I know this all too well. Going to the store, a relative's house and even just a walk in the neighborhood can become an obstacle course. Trying to navigate the environment can become a huge struggle for people with disabilities and their caregivers.
However, there has been progress in making the environment accessible to all individuals since the civil rights movement. One such concept is universal design.
by Michelle Doty
It doesn't take but a few steps to realize the world is not designed to accommodate individuals of all abilities. Being the mom of a child with multiple disabilities, I know this all too well. Going to the store, a relative's house and even just a walk in the neighborhood can become an obstacle course. Trying to navigate the environment can become a huge struggle for people with disabilities and their caregivers.
However, there has been progress in making the environment accessible to all individuals since the civil rights movement. One such concept is universal design.
Specialty Article
Last year's H1N1 flu outbreak triggered enormous fear for many parents throughout the world. This fear was multiplied dramatically for parents of children with complex medical conditions, particularly those with underlying respiratory or neuromuscular conditions. Unlike the typical flu, which tends to hit older people the hardest, the H1N1 flu was exceptionally cruel to children and young adults, and particularly troublesome for children with high-risk medical conditions. In a CDC study of the 36 pediatric deaths due to H1N1 during the summer of 2009, 67% had significant underlying medical conditions.1 These included cerebral palsy, muscular dystrophy, or other forms of developmental disabilities in 61% (22 of 36 children), the vast majority of children. Considering that during earlier seasons the percentage of pediatric deaths in children with complex medical conditions was much lower, the 2009 H1N1 flu was definitely more difficult and deadly for these children.
Frightening statistics such as these convinced many parents of children with complex medical conditions to get them vaccinated last year. As flu season approaches this year, parents must again make the choice of whether or not to vaccinate. While official recommendations are clear, the decision is more difficult for children with a history of severe vaccine reactions or symptoms that may worsen after vaccination. This article will provide general information about flu shots, as well as specific information to potentially curb reactions and side effects from the vaccine.
Feature Article