MDA Summer Camp: Breathe Deeply and Let Your Baby Go

by Amy Madsen on January 1, 2009 - 12:25pm

QUEST Vol. 16, No. 1

Winter may not have given way yet to spring, but it’s already time to begin making plans for summer. If you’ve heard about MDA summer camp but just aren’t sure you can take that step — or worse, the idea scares you half to death — read on for some words of support, advice and encouragement by a number of folks who’ve been on all sides of the equation.

Campers say ...

“... It’s the best week of the year!” You’ve read it in Quest, seen it on MDA’s Web site and heard it on the MDA Telethon.

You already know that camp is a week’s worth of nothing but fun from sunup till sundown, including activities such as: arts and crafts, baseball, boating, fishing, games, horseback riding, s’mores and sno-cones, swimming, talent shows, wheelchair soccer and more.

So, what’s to be afraid of?

From mothers who have been there:

• “My fears were who will take care of his everyday needs? Will they understand when he says his back or legs hurt? Will they massage him and make him feel better? How will he feel when he wakes up his first day [and realizes] I’m not there? Will he be able to go to sleep at night? Will he cry for me? Will he have fun? Will other children make him feel nervous or make him feel he doesn’t belong?” — Michelle Temple, Ashburn, Va., mom to Dakota Bailey, 8, Charcot-Marie-Tooth disease, a first-time camper in 2008.

Esther Arrieta
“Every year there are new parents that have worries and concerns about leaving their child, perhaps for the first time. It is a big step and a huge act of trust to leave a child with special needs for a week. In my experience, I’ve seen that parents often have a harder time than children do. This is probably because as soon as a parent leaves and all the campers have arrived, the fun begins.” — Esther Arrieta, volunteer counselor, Summit, N.J.

• “I worried how someone could possibly love and take care of her the way I do.” — Linda Kolze, Phoenix, Ariz., mom to LoriAnne Kolze, 12, mitochondrial myopathy, whose first camp experience was in 2008.

• “We feared that he would be scared and wouldn’t let us leave, that he would be upset at not being able to cuddle up on the couch and fall asleep watching TV the way he likes to do, that he might get into things when no one’s watching, and that he might wake everyone up since he’s an early riser. We worried that he would give the counselor a hard time, and about how they would handle having to help him with the bathroom and showering.” — Tricia Wright, Rochester, N.Y., mom to Jared Wright, 9, Duchenne muscular dystrophy (DMD). Jared first went to camp in 2008.

• “I wondered how someone else could take care of him and how he would feel about it. I was also worried that he would get homesick and want to come home early because he had never been away from home.” — Lauri Woods, Tempe, Ariz., mom to Jared Woods, 10, Duchene muscular dystrophy (DMD), who first attended camp in 2007.

The basis of fear

The fear of letting go is “very complicated,” says Tammy Guy, facilitator for an MDA parent support group in Dayton, Ohio. “As a parent, your natural instinct is to protect, care for, and provide everything necessary for your child — and when a child has special needs, those feelings are magnified immensely.”

Guy says both fear and guilt figure into parental apprehensions.

Parents are afraid that “something might happen and I won’t be there,” Guy explains, while the guilt stems from parents’ feelings that they alone are responsible for their child’s care, and that giving that care over to someone else amounts to shirking their responsibilities.

Jared Wright
Jared Wright’s parents worried that “he would be scared and wouldn’t let us leave, that he would be upset at not being able to cuddle up on the couch and fall asleep watching TV the way he likes to do .... ”

There’s no way to dispel the fear altogether, Guy says. “Parents simply learn how to deal with it.”

It’s going to be OK

Guy suggests parents connect with parents of veteran campers.

“When you can look across the table and talk with a woman whose son has the same diagnosis as yours, and when you find out how she managed and how great an experience it was, not just for the child but for her too, it goes a long way toward giving you the sense that it’s going to be OK.”  

Research physical therapist Tina Duong serves as site physical therapist and a camp counselor at MDA summer camp in the Arlington, Va., area. She suggests parents:

  • visit an actual camp on VIP day;
  • meet with the MDA camp director and work out a plan to have your child check in with you;
  • make a care book for camp volunteers listing your child’s needs and habits;
  • clearly indicate your child’s likes/dislikes and interests during the application process so that MDA staff can match your child with the counselor who’s the best fit; and
  • meet or talk with your child’s camp counselor prior to camp to get acquainted.

Good for both parent and child

After their child’s first camp experience, parents often begin to understand that “it’s not a bad thing to take time for yourself,” Guy says.

Megan Keenan

“Take the time you need to get your child settled in, maybe take a walk around the camp, and get to know your child’s counselor — you’ll see right away that your child is going to be
getting constant, one-to-one attention from an energetic, eager counselor who has been trained specifically for MDA camp.”
“Don’t be nervous! Even our most shy campers come out of their shells at camp. Campers have a wonderful time, and their families receive well-deserved respite for a week. Your child will receive constant attention and excellent care, and will be happy to see you and share camp stories at the end of the week!” — Megan Keenan, volunteer counselor, Bronx, N.Y.

Duong notes that while children are away at summer camp, parents have opportunities to strengthen bonds with other family members, get some well-earned rest, meet other families with children who have similar challenges, and meet the MDA staff who will work and advocate for their child year-round.

Children, Duong explains, come back from a week at camp with:

  • new friendships, camaraderie and support groups;
  • newfound independence and confidence; and
  • memories of having been able to participate in activities that might not be accessible outside of camp.
Phil Tomasello

“We will always first have your child’s safety in mind. That is our first priority. Our second priority is to make sure that they have fun. Both of these priorities will come together to make your kids have the best week possible.”
“Camp is a place where your children can enjoy themselves to the fullest because their disabilities don’t separate them from anyone else; instead it unites them. They aren’t different from anyone else at camp; everyone needs a helping hand. We’re counselors because we want to help.”
— Phil Tomasello, volunteer counselor, Berkeley Heights, N.J.

“At camp, the counselors do their best to allow children to grow, be creative, find their voice,” Duong says, adding that campers also learn life skills, “such as being their own advocate. They learn how to instruct people on how to best help them — it’s a life skill that is essential for children who need help with activities of daily living.”

“Parents would be amazed at the transformation that occurs during the week at camp. With the removal of environmental and emotional barriers, some of these children blossom into incredibly outgoing and energetic people. The confidence they gain is priceless.”  — Tina Duong, MDA camp site physical therapist and counselor, Arlington, Va.

Looking forward to next year

LoriAnne Kolze, MaryJo and Megan Flanary
LoriAnne Kolze (center) had two volunteer camp counselors: sister MaryJo, 16, (left) and habilitation aide Megan Flanary.

Before his first trip to camp, Dakota Bailey’s counselor called to get to know him, and when he and his family arrived she was there waiting for him.

“She made him feel special, really special — for one entire week it was about Dakota, meeting new friends and having fun,” Michelle Temple says.

When he returned, “He didn’t speak once about any child’s physical disability; he spoke of activities and the fun they had, and how sad he was to not see them every day. It meant the world to him and he’ll never forget it. ... I now pray every year that Dakota has a chance for summer camp.”

Bryan, Lauri Woods and husband
Lauri Woods and husband, Bryan, are “extremely happy” they decided to let Jared attend camp. “He had the best time,” Lauri says.

Linda Kolze says “the trigger” for getting over her fears was when her 16-year-old daughter, MaryJo, said she wanted to go to camp so that she could help her sister, LoriAnne. Kolze talked with the camp nurse ahead of time to go over LoriAnne’s medication and care. MaryJo, along with LoriAnne’s habilitation aide, Megan Flanary, both went to camp and served together as LoriAnne’s counselors.

“By the end of the week, everyone was happy,” Kolze says, “and what I saw was the most miraculous thing. I saw all these kids, and they were free. It lifted my heart — they were so happy to be there.”

Tricia Wright’s son Jared also spoke with his camp counselor ahead of time.

“We knew it was a great opportunity for him,” Wright says. “We’re so glad we sent him — it is truly the best thing in the world for him.”

Jared Woods has attended camp two years now. His mom, Lauri, says, “Camp is a wonderful experience for the kids and it’s a place where they aren’t different. It’s a time for parents to rejuvenate themselves and take some time to do the things they otherwise might not have time to do.”

Your rating: None Average: 5 (1 vote)
MDA cannot respond to questions asked in the comments field. For help with questions, contact your local MDA office or clinic or email See comment policy