6 minute read
Common Goal
Visiting the Emergency Room
with Your Special Needs or Behaviorally Challenged Child
By Suzanne Niro, BSN, CPEN
Visiting the ER with a sick child is stressful for any parent. It can be even more challenging for parents of a special needs child or one with behavioral issues. Many of these families have navigated through the ER multiple times for various reasons but each visit can be quite unique. These patients are often dealt with by staff unfamiliar with their extensive histories and complex medical and emotional needs. In addition, prolonged waiting times expose them to other sick children, which can be very problematic.
SOME TIPS FOR PARENTS BEFORE COMING TO THE ER
• Check in with your child’s primary health care provider before heading to hospital. Often an
ER visit is unavoidable and children with chronic conditions subsequently require admission to the hospital at high rates (24% to 38% of the time).
Consulting with their primary care provider may save the child a trip to the ER, depending on the severity of the complaint. The primary caregiver may be able to arrange an outpatient specialty visit or even see the child themselves to determine if an ER visit is absolutely necessary. • If an ER visit is unavoidable, make sure to bring
the child’s medications or, at minimum, an updated medication list including doses and times
given. A quick summary of the child’s complex history is also valuable, including names and numbers of clinicians who are involved in the child’s care. Patients with complex medical needs are often on multiple
medications, doses are frequently being changed and some med changes may not even be updated in the patient’s medical history. In addition, some meds may not be immediately available in hospitals, in which cases exceptions can be made and families may give meds from home. • Be sure to bring any personal items such as
blankets for comfort, or security items such as
teddy bears, etc. Although one may anticipate a quick visit, some may last hours, depending on wait time, even if admission is not needed. Having a security item can help the child feel more secure in a stressful situation. In addition, many hospitals offer Child Life services. These clinicians are highly trained individuals who specialize in helping families cope with the visit. They can provide valuable distraction during unpleasant procedures as well as explain to the child and family what to expect during their stay and how the staff can best accommodate their unique needs. • If your child requires special formula or is on a
special diet be sure and bring these with you.
Although many hospitals can accommodate these needs on inpatient units, they may not be readily available in the Emergency room.
Given these challenges, improving the delivery of patient and family centered care in the ER requires collaboration between the parents and health care clinicians. Being a strong advocate for you child is essential for an ER visit. Clinicians are trained to “listen” to your valuable advice and expertise regarding your child’s unique and individual needs. r
Benefits of
Special Needs Summer Camps
At age 6, Kim Kelly paid her first visit to a special needs residential camp. It was an experience she and her family will never forget.
With our focus on social skill-building and with (a program for young our specialized staff adults) at Camp Kodiak in Ontario, Canada, a helping to guide social therapeutic, residential interactions, many summer camp for children of our campers leave and teens with and without diagnoses like Attention having made lifelong Deficit Disorder, Attention friendships. Deficit Hyperactivity Disorder
Up to this point, Kim had lived a and Asperger Syndrome. “Our pretty sheltered life, her mother Ruth goal is to provide all the fun Kelly explains. “Because she has a hearing loss of a traditional camp, but in a safe, and an orthopedic problem, it was natural for supported setting,” Van Huss says. “Campers with me to want to hold her close.” By bringing Kim special needs typically thrive in a structured, to camp, her mother realized two things: “My predictable environment with as few changes in daughter needed to learn to do things on her own, schedule as possible.” and I needed to let go a little.” For the Kellys, it Heidi Haldeen, summer program specialist for was a positive experience. an Easter Seals Camp, agrees. “At a special needs
There’s a host of benefits children derive from camp, kids have the same opportunities they have attending camp, but for kids with special needs, at traditional camps. The only difference is the those benefits are amplified, says Amy Van Huss, activities are modified according to the campers’ administrator and director of Club Kodiak needs. This gives them a chance to shine.”
At a special needs camp, kids have the same opportunities they have at traditional camps. The only difference is the activities are modified according to the campers’ needs. This gives them a chance to shine.
That’s what 9-year-old Tiffany Wells found as a camper. During the school year, Tiffany, who has cerebral palsy and asthma, played on a soft ball team and in a community bowling league; but because none of the children she played with were disabled, the competition wasn’t always equal.
According to Van Huss, “Camp Kodiak is a place where you are accepted and supported, and where you have the chance to grow. We offer as many different activities as we possibly can, everything from sailing to high ropes to waterskiing to the theater arts, with the hopes that they will find an activity they can continue at home. Seeing the growth in a camper socially, academically and functionally, as well as the growth in confidence – from the time they arrive at camp to the time they board the bus or climb into their parent’s car to go home – is truly amazing.”
Such was the case with Kim. When she first attended camp, she was afraid of the water. “She cried just getting her face wet,” her mother says, but “by summer’s end, she was jumping in the deep end and had received her first American Red Cross swimming certificate.”
While some parents and caregivers choose a summer camp for their children’s fun and recreation, others use it to continue education and therapy goals, and teach life skills. This is accomplished one step at a time. “It may mean being 10 minutes late for breakfast so Timmy can learn to tie his shoes by himself,” says Haldeen.
Developing new skills isn’t the only thing kids glean at a special needs camp. They learn about friendships, too. Last year when Tiffany went to camp, there was a girl in her cabin with a more severe case of cerebral palsy than Tiffany. Because Tiffany had spent her whole life with people helping her, she naturally wanted a chance to help others. “When we went to the dance, I got to push my new friend around in her chair,” says Tiffany. “I also got to help her eat.”
Van Huss notes, “Many of our campers have trouble making friends and maintaining friendships in their home environments. Just knowing there are other kids out there, just like them, is comforting. With our focus on social skill-building and with our specialized staff helping to guide social interactions, many of our campers leave having made lifelong friendships.”
When camp is over, what do the children take with them? For some, new skills. For others, new friends. And for many more, simply a fond memory of having had a break from their routine at home.
“Our campers look forward to returning year after year,” says Haldeen. “For many, we are their summer vacation. The minute they drive away, they are making plans to return next year.” r
