By Christina Tinkler
Christina is a young adult living with hydrocephalus, a guest blogger for HA, and a volunteer in our Houston, TX, area.
Summer is right around the corner and one of the things kids look forward to is getting a break from school. I’m sure parents out there are thinking, “How am I going to entertain my children?” There are lots of things to do to keep kids occupied, ranging from different staycation ideas to travel spots to summer camps! So for children who have hydrocephalus, how do you pick a camp that fits both their interests and their possible medical needs? There are several factors to consider, but we will dive into some of the more important ones.
One of the first things to consider is your child’s interests/hobbies and abilities. What does your child enjoy doing in their free time? If they enjoy sports, try finding a camp that offers a variety of sports. Perhaps you have a child who really enjoys science; look for a space camp or even a robotics camp. Maybe your child is really into volleyball or soccer, try checking some of the local recreation centers. They often offer camps that are half -day or full -day and are reasonably priced. Of course, if your child is unable to participate in these activities or has other interests there are more options; perhaps an aquatic camp or an art/crafts camp would be more suitable. Some libraries even offer book clubs that meet frequently and discuss various genres of literature for kids.
Once you have narrowed down what kind of camp you are looking for, the search begins. There are a few ways to go about this. You can start by asking friends and neighbors what experiences they have had with certain camps and which camps their children enjoyed most. This includes posting in your Community Network Facebook Group to see what fun camp experiences our own families have had. Also looking in newspapers, church bulletins and community bulletin boards, as well as picking up brochures from local recreation centers is a good place to start. Additionally, turning to the Internet is a great option. You can search locally by zip code or even broaden the search to include the state you live in or beyond to include other areas that you may visit throughout the summer while on vacation.
If your child seems interested in camps that have a high activity level, you might ask if they have modified activities. Some camps may have different activities that can be adapted based on abilities. For example, they may have special equipment such as a lift, which can be used to get in and out of a pool or lake for those in wheelchairs. Various organizations may even have a list of recommendations for camps depending on your child’s specific needs.
When signing your child up for camp, something else to consider is their comfort level with leaving home. If your child has a friend or even a sibling that might be willing to accompany them to camp, this would be helpful, especially if they are afraid of leaving home. Having a buddy attend camp can also be beneficial and might make it easier to adjust. For example, some camps have group activities and then break off during the day to let each age group do their own thing. This is helpful to allow individuals to grow and be independent, but know that they will be able to see a familiar face throughout the day. Another positive aspect about this type of camp is that they will be able to reflect on memories long after camp is over and have someone who shared the same experiences with them.
As a parent, it would be advantageous to find out as much information as possible ahead of time in terms of medical care. It takes strategic planning for parents with children who have various needs. Some of the things to consider include:
- Where is the nearest hospital, urgent care facility, or medical doctor?
- Who will be on site at the camp to handle anything from scrapes and bruises to emergencies like a shunt malfunction?
- Does your child know who their doctor is and which hospital they normally go to?
- Does your child and those who will be in charge know what signs to look for if they have a shunt malfunction? It is important that others know what to look for. There are a wide variety of symptoms that can accompany a malfunction and not everyone will experience the same ones.
Some important items to pack may include a current MRI/CT scan, a summary of their medical history, a medical ID tag or bracelet with information such as allergies and medications, if they have a shunt and perhaps what kind (RVP, programmable, etc.), contact information for their neurosurgeon and a number for a family member (i.e., mom or dad) in case of emergency. If your child has congenital hydrocephalus and has several years of scans, doctors may recommend only having the most recent ones available on hand.
If your child has a smartphone and is allowed to bring it to camp, download our new mobile app, HydroAssist, and make sure the counselors and administrators know that your child’s hydrocephalus treatment history is on their phone. This will help expedite care, especially if they go to an unfamiliar hospital. As an alternative, or even in as an additional back up, provide a flash drive loaded with this important information to the camp administration and/or counselors.
Also, there are informational, easy to understand educational materials available through the Hydrocephalus Association. These are helpful to pass out to the camp nurse, camp counselors, and any other adult who may be unfamiliar with this condition. This will allow them to have some basic knowledge such as what a shunt is, what the symptoms/ signs are for a malfunction, and other useful information. Unfortunately, hydrocephalus is not a condition that is as common or as well-known as illnesses like asthma or diabetes, so it is important that parents provide as much information as possible, especially in situations where unfamiliar scenarios may arise.
Of course everyone wants their kids to enjoy their camp experience, be able to create memories, and not be haunted by their medical problems, but it is always better to be over-prepared. Hopefully, you and your child will never need this information, but when an emergency arises there’s not time to come up with a plan. Summer is about having fun and letting your children be as normal as possible. Your child will create wonderful memories that will be remembered time and time again. Just because challenges arise doesn’t mean that the normalcy of life should be compromised. Let them shoot for the stars! The possibilities are endless!
Summer Camp Links
Junior Blind Camp Bloomfield (not only for blind or visually impaired kids)
National Ability Center
National Ability Center in Park City, Utah has year-round day and overnight camps for youth with physical disabilities, cognitive disabilities and autism. Recreational, competitive and team-building programs are available in skiing, adventure learning, aquatics, water sports, archery, cycling, snowboarding, snowshoeing, sled hockey, climbing and equestrian sports.
Camp Greentop, located in Catoctin National Park, near Thurmont, Maryland, has been welcoming children and adults with disabilities since 1937. Day and overnight camps offer a structured schedule of canoeing, fishing, swimming, horseback riding and campfire singalongs.
The Friendship Circle in West Bloomfield, Michigan has options for social skills day camp, overnight camp, baseball through the Miracle League and the “Lose the Training Wheels” program to learn to ride a two-wheeled bike. In the social skills day camp, children are placed in small groups headed by a volunteer. In the other programs, each child is matched with a one-on-one volunteer. The Friendship Circle also has 83 locations worldwide, each with its own menu of summer programs.
Easter Seals Wisconsin
Easter Seals Wisconsin offers overnight and day camps in the Wisconsin Dells. Siblings and buddies age 7-14 are invited to join each camper. Some camp sessions provide one-on-one support around the clock, some are small group sessions for campers with mild to moderate impairments and some are planned for individuals with autism and Asperger Syndrome.
Easter Seals New Hampshire
Easter Seals New Hampshire works with the Boy Scouts of America to provide an inclusive experience at Camp SnoMo at Hidden Valley Reservation in Gilmanton Iron Works, New Hampshire. Children and young adults with disabilities age 11-21 participate in traditional camp activities alongside Boy Scouts. Each camp session is one week long.
All Abilities Horse Camp
All Abilities Horse Camp in Longmont, Colorado has day camp sessions that are either one or two weeks. Children with and without disabilities ages 4-17 can learn English or Western riding, and everyone participates in a horse show on the last day of camp.
Talisman Programs in Zirconia, North Carolina cater to children and teens with ADHD, learning disabilities, Asperger Syndrome and autism with special attention to nutrition, life skills and daily routines with built-in downtime. The overnight camps are either campus-based or adventure-based, and all programs are multi-sensory.
Camp Grace Bentley, located in Burtchville, Michigan on the shores of Lake Huron, hosts campers ages 7-16 with mild to moderate special needs. Each counselor is assigned to 3 campers, and each session is 9 days long. Activities include swimming, team sports, dances, bonfires, talent shows, carnivals, various games, arts and crafts, indoor games and movie nights.
The Children’s Association for Maximum Potential
The Children’s Association for Maximum Potential (C.A.M.P.) in Center Point, Texas runs a summer camp and year-round respite club. The six day, five night summer camp sessions are for children and adults with special needs as well as their siblings. Traditional summer camp activities such as canoeing, swimming, horseback riding and outdoor sports are modified so that people of all abilities may participate. 24 hour medical care is available from the team of professional health care volunteers. Fees are assessed on a sliding scale based on each family’s income.
Camp Horizons on Lake Probus in South Windham, Connecticut serves people with developmental disabilities. In addition to traditional summer camp activities, the camp incorporates a curriculum of life skills, language skills, music and movement, social skills and vocational training.
Camp LeeMar in Lackawaxen, Pennsylvania adds speech therapy, vocational training, swim instruction, academic instruction and therapeutic arts to the usual menu of camp activities. Children with mild to moderate learning or developmental disabilities participate in a 7 week residential camp.
Ramapo for Children in Rhinebeck, New York has a 1:1 counselor to camper ratio in order to provide an inclusive environment. Children with special needs ages 6-16 enjoy traditional camp activities on the wooded lakefront campus: swimming, boating, fishing, sports, wilderness exploration, a ropes course, petting zoo, art, music and much more.
Camp Huntington in High Falls, New York is an overnight camp for children and young adults (ages 6-21) with learning disabilities, ADHD, autism and developmental disabilities. The camp combines adaptive therapeutic recreation with academic instruction based on each camper’s IEP goals.
Paul Newman Camps
The Double H Ranch in Lake Luzerne, New York, the Hole In The Wall Gang Camp in Ashford, Connecticut and Camp Boggy Creek in Eustis, Florida were founded by actor Paul Newman for children with serious or life-threatening illnesses. Separate camps are offered for siblings. The camps are free for participants – parents only pay the cost of transportation to and from camp. Each applicant is screened by a medical team, and the camps have medical clinics staffed by volunteer doctors and nurses.
DO YOU KNOW ABOUT MORE CAMPS TO ADD TO THIS LIST? If so, please send them to HA: firstname.lastname@example.org. Thank you!