by Mary Alice Cookson
Given the wealth of summer camp opportunities in our region, finding one that’s a great fit for your child with special needs is certainly an obtainable goal. But it helps to have some guidance from those who have been down that path.
Enter Cheri McLane, whose daughter Julia had her first camp experience last summer. Aside from parenting three kids with her husband, Kevin, the Walpole mom is the Metrowest Parent Coordinator at Family TIES of Massachusetts, a project of the Federation for Children with Special Needs. Funded by the state’s Department of Public Health, the Family TIES network offers parent-to-parent advice and resources to families and professionals supporting kids with special needs. McLane contributes to skills-building workshops, as well as the Federation’s resources directory and NewsLine newsletter.
Eleven-year-old Julia, the McLanes’ middle child, was diagnosed at birth with Prader-Willi syndrome, a genetic disorder that affects appetite, growth, metabolism, cognitive abilities and emotional regulation. Hallmark characteristics are a feeling of insatiable hunger and slowed metabolism, which often leads to obesity. Julia also has chronic hip dysplasia, which affects about 10 percent of those with the syndrome. As a fifth-grader at the Cardinal Cushing Centers in Hanover, she enjoys art, chorus, drama, computers, cheerleading and recently tackled a low ropes course. Outside of school, Julia swims, is involved in Girl Scouts and rides horseback at the Massachusetts Hospital School in Canton, in partnership with Easter Seals. Her first camp adventure last summer was deemed a tremendous success by her mom, who was only too happy to answer our questions and share her insight.
What should parents look for in choosing a camp for children with special needs?
All children do well with structure and routine, especially children with special needs. That said, camp should be fun! Julia had her first traditional camp experience last summer. By “traditional,” I mean swimming, games, arts and crafts, singing, cooking, boating and horseback riding. She wanted the opportunity to make friends and socialize with other children who are like her. She had always done extended school-year services, but said she felt ready to try something new.
In searching for the right camp, we investigated camps that have experience working with children who need assistance physically and emotionally. Beyond the day-to-day activities and the typical population served, we wanted to learn about what each camp had to offer in the way of structure, support, skill-building and socialization. We ultimately found a camp that could offer the high-level of skilled support she needed to have a fun-filled camp experience. When camp ended, she said she couldn’t wait to return next year – a sure sign it was the right fit for her!
What questions should you ask camp professionals and what answers should you expect to hear?
Safety is at the forefront of most parents’ minds. When you are considering a new camp, you want assurance that the camp has the capacity – from staffing to expertise – to handle an emergency. Parents should ask camp coordinators about their safety measures and precautions, to have peace of mind as their children explore potentially new experiences, including canoeing, paddle boats, windsurfing and rope courses. Hopefully parents will hear about a low staff-to-camper ratio and 1:1 supervision when the situation requires it.
by Mary Alice Cookson
Planning and accommodating for physical and social needs are also important for a successful camp experience. Camp can be wonderful but tiring, and some campers, like our child, occasionally need a quiet, shaded area for a break and drink of water. Many camps have children cooling off in the pool for extended times. Parents should ask about water safety as well as if staff are on hand to assist with daily living skills, such as toweling off and changing, if needed.
Some special needs camps are designed to facilitate communication and social skills. While our child is naturally quite chatty, we really appreciated staff who provide a daily communication note about daily activities and notable achievements.
Since camp is mainly about friendship and fun, ask about your child’s possible peer group to get a sense of age ranges, abilities and interests.
What are some red flags that might indicate that a camp isn’t a good choice for your child?
When I describe my child’s strengths and challenges, if camp staff respond that they have never had a child with – insert diagnosis here – and are not sure if they can provide the level of support she needs, that is a huge red flag!
Our daughter has a rare genetic disorder, physical challenges, a slight intellectual disability and requires emotional support; she is also inquisitive, caring, loves to learn and is a social bee. If, after hearing that, camp staff do not appear open-minded and have an interest in meeting her, it may not be a good fit. Staff that enjoy working with individuals with a range of abilities can make a program exceptional. Another red flag might be if the camp appears disorganized or lacks accessibility.
What types of services should the facility provide?
Some specialized camps offer a higher level of support services, such as an intake evaluation, a “meet and greet” to kick off the season and nursing staff for emergencies. Some camps also offer social skills groups and special trips into the community.
What guidance would you offer parents in terms of how to handle medications?
Ask camps how they handle the storage of and distribution of medication. If your child’s prescription can be given at home prior to attending camp, it may provide some peace of mind. If not, talk to the camp nurse about the specific medication needs of your child and see how flexible, creative and supportive the camp staff can be. If your child must have a medication while at camp and there isn’t staff that can administer it, it may be a red flag that this isn’t the right camp for your child.
How should camps deal with behavior issues?
Behavior is a form of communication. In my opinion, camps should prepare as best as possible to set campers up for success and minimize outbursts and unexpected behavior. Having a positive, incentive-based plan works best. Camps willing to work with parents in terms of understanding their child’s unique emotional, sensory and behavioral needs set up campers for success.
Is it better to go to a camp that specializes in accommodating children with a certain diagnosis or is an inclusive camp a better option?
That depends on the child and the ultimate goal. For example, a child with complex medical needs may be more successful and happy attending a specialized camp that can offer a high level of support and services. A specialized camp can also be a great way for a child to meet peers who also have different levels of abilities and try some new activities. Conversely, if the goal is for a child to practice social skills with typical peers, and if the child needs minimal accommodations for that, an inclusive camp may be a better option.
Ultimately, camp is camp! Our kids work hard all year and they deserve a fun, positive time making friends and memories.
by Mary Alice Cookson
What are some other factors to consider in weighing the pros and cons of integrated or specialized camps?
Consider the distance and costs involved. Local camps that integrate children with special needs tend to be more affordable and easier to transport to. If a family is considering a specialized camp, they will need to ask if there is any transportation. Sometimes there are designated drop-off and pick-ups. Camp may be more expensive, given the need for enhanced services and skill sets. Families can ask if there are financially based scholarships available – and apply early! If families wait until June or July, options at specialized camps are much more limited.
What’s your take-away from your camp experience?
I was so proud of my daughter! I was probably more nervous, and she was more excited. As parents, we naturally worry and want to protect our children. By being open to the experience, she tried paddle-boating and rode a horse! Trying new things helps build self-esteem and perpetuates a “can-do” attitude. When you find the right fit, it’s great!
Mary Alice Cookson is associate editor of Boston Parents Paper.