A guide for parents sending their child to any disability focused sleep-away camp.
Sending a child with a disability to overnight camp can seem overwhelming to special needs parents, and maybe not worth the hassle. But sleep away camp has benefits for all kids, especially those with disabilities. That’s why we send Fulton and Teddy to the Muscular Dystrophy Association’s summer camp every year. Since they each require so much stuff, early on I created a packing list and other helpful documents to streamline the process. Although this is admittedly a pretty niche topic, I thought it would be helpful to document how to pack for MDA camp so other parents who are sending their child with a disability to camp for the first time can gather useful tips, and hopefully, reassurance that everything will turn out okay!
2023 marks the sixth year Fulton and Teddy have attended camp together. Fulton began attending camp in 2015 right before his 7th birthday. Teddy began attending camp in 2017 at the age of 6.5. They missed camp in 2020, and we drove to Florida in 2021 and 2022 because the local MDA camp wasn’t held. This is the first time since 2019 they’ve been able to attend the Philadelphia MDA camp and it was great to show up and see familiar faces. Several people recognized the boys, and I even met a long time blog reader who now works with the MDA!
Since I don’t really worry about homesickness, drop off is a quick and easy affair for us. But it took a few years to get to this point. Here’s what helps us all prepare for a stress free (or at least lower stress) camp experience.
First and foremost you need a packing list. Once you create one, you’ll find it invaulable any time you need to travel with your child. Mine is three pages long, and has all my sons’ supplies listed under different headings like, Respiratory, Getting Dressed, Camp Supplies, etc. I rarely forget things when I use a packing list.
It helps to create a packing list far in advance of your trip, on a day when you’re just doing your normal routine at home. Write up all the supplies you use in a day, and add to the list as you think of something new. Rushing to create a list 24 hours before you’re set to depart is a sure fire way to forget something. And be sure to add everything! My child might not always need or want something, but if there’s any chance, I put it on the list. Make sure your spouse, or anyone else who helps you care for your child on a daily basis has the opportunity to add to the list too. You can download free set of templates to help you pack below!
If your child is going to a camp run by the Muscular Dystrophy Association, they will usually send out a packing list a few weeks before camp starts. It will list any specific items they recommend for your child’s week of camp.
Packing hack: I pack my sons’ clothes in labeled plastic drawers, and I try to put most supplies in bins. Most cabins will have some open shelves, but I find it 100x easier to pack drawers because then I don’t need to unpack clothes when we arrive and deal with a suitcase. Plus, bins allow the counselors to see all my son’s items, and keeps them all organized. I just stick the bins on the shelves or slide them under the bed and we’re all set.
- LABEL EVERYTHING – medical equipment, charging cords, any and everything you don’t want to lose. It also makes it easier for the counselors.
- Two bath towels and a towel for the pool.
- If you can, donate extra supplies for your child’s cabin – hand sanitizer, nitrile gloves, Clorox wipes, etc. The camp will also sometimes send out a list of items they need.
- Extra clothes and socks; pack the amount they’d normally wear, then double it. Seriously, they’ll go through a lot of clothes.
- Spare parts for any medical equipment in case something breaks.
- Create a weeks worth of mail for your child. Write letters or send pictures. I usually have my older kids help color in pictures or comics and then put the drawings in envelopes labeled for each day, and hand them to the counselors in one large manilla envelope with my son’s name on it. The counselors give them the correct mail each morning at breakfast.
Medication and Medical Supplies
When you check into camp, you’ll probably meet with the medical team as part of the process. Have all your child’s medicines packed in a seperate bag so you can be ready to hand them over. Make sure all the medicines have the original label from the pharmacy on them, and that there’s enough for the entire week of camp, plus a little extra. With certain medicines (and some medical supplies), this means a little pre-planning on your part to get things refilled in time for camp. It can help to set a refill reminder on your phone or calendar a month or two in advance. One year I almost didn’t have enough feeding bags to send along and I was freaking out. Thankfully I found a couple extra buried in the back of my son’s closet but after that I always made sure we were fully stocked with all medicines and supplies before camp. Don’t forget syringes, pill crushers, or any tools you need to administer the meds.You can have a list of medications, doses, times given, etc. ready to hand to the medical staff, but they still might need to copy it into their own file, or have you fill out something. Either way, it’s handy to have it all written out in advance.
Something I started doing from the beginning was typing up a list of instructions for my sons’ counselors and the medical team. These instructions give a run down of my son’s day; what we do in the morning to get him ready, what time of day he usually gets medicine or different treatments, and how we get him ready for bed. I keep it to one page and I give everyone working with him a copy. I explain that this is how we do things at home, but they can feel free to adapt things to the camp schedule. And of course, my sons are old enough to advocate for themselves and let people know their preferences. Since Sunday’s drop off, even in ideal circumstances, can be a bit frantic, and first time counselors can be easily overwhelmed, it’s helpful to have a list of instructions for everyone to reference so nothing falls through the cracks. Don’t forget to download your free packing, medication and instruction forms!
Dealing With Big Feelings; Your Child’s and Yours
Your child may be excited for camp, yet still scared to have strangers caring for him or her. If he or she has had no other caregivers besides you and your spouse (or other close family members), camp will be an adjustment.
As parents we tend to think no one can care for our kids as well as us, and in many ways, that’s true. But that doesn’t mean our children can’t be safe and well taken care of under the watchful eye of other people. Camp helps children with disabilities gain independence and learn that they can do things on their own, away from home, for an extended period of time.
When my sons’ were first diagnosed, I assumed they’d live with me their whole lives. But I’ve “met” online many adults with neuromuscular diseases living independent lives with a team of caregivers and/ or a spouse. And while some disabled adults do live at home, they still live their own lives, relying on paid assistants, not just their parents, to help them get ready, drive to work, etc. Camp is a great first step in that direction. Your child will learn to speak up, let their preferences known, and advocate for what they need. Plus, they’ll meet other children with similar disabilities of all ages who can relate to them in ways unlike their typically developing siblings or friends. (I suggest parents and teens watch Crip Camp to get inspired about the friendships that can form, and the strength those relationships give to disabled kids and adults.)
Most camps will work with kids who are homesick. Campers are kept busy and encouraged to do what they want, not always a prescribed activity. Teddy was very homesick his first couple of years. It helped that Fulton was there, and his second year he had a counselor he really bonded with. The staff worked really hard to help him have a fun week of camp and he does really great now.
Camp also provide respite for us parents. MDA camp gives my husband and I a full week of respite. It is so recharging for us physically and mentally and I think our marriage benefits as well. It’s why we were willing to travel so far the last two years for the boys to attend camp. Being a special needs parent is hard and its hard to get a break. Respite opportunities are few and far between. If your child can attend MDA camp, or another other camp that supports them and their disability, I encourage you to give it a try. You will worry and sometimes things will happen at camp that you might not be happy about. (Fulton fell out of his chair once. I only learned about it after pickup when he laughingly told me about it.) But I think the risk is worth it. I’d rather they go to camp and get banged up then shelter them inside my home for their entire lives even if it is “safer”.
It’s very easy to helicopter parent disabled kids; in many ways they truly need closer monitoring. But in all the places outside my home that I leave my sons, MDA camp, and camps like it, are probably some of the safest and most caring environments. Your first year as a camp parent may leave you biting your nails a bit, but in time, I think you’ll learn to enjoy yourself, especially as you see how much fun your child experiences. So while your child is at camp, take some time off work, go stay at a fancy hotel, sleep in late, do something special with your other children or leave them with grandparents so you can do absolutely nothing, which is sometimes the greatest vacation of all.
Both boys agreed that this year’s MDA camp week was great. We’re so lucky to have a location so close by, and enough dedicated volunteers to make it possible. Let me know if you have any other advice or questions in the comments below!