My daughter was sitting in her bath chair in the sand at Mustang Island, when she smacked both hands down into the water as hard as she could, excitedly. The wave had surprised her. She couldn’t see the Gulf out in front of her and couldn’t tell when the next wave would come.

She had no idea she was at the beach. She knew the window had been down most of the three-hour drive because it always is, because she likes to hold her hand out and feel the wind. She knew it was loud now, warm, and water kept coming up to her feet. She probably thought it was a very large bathtub.

My daughter has Neonatal Adrenoleukodystrophy, also known as Infantile Refsum Disease.. She doesn’t walk or crawl, but she can scoot on her bottom and she will get wherever she is trying to go. Near the water, it’s even more important to have a safe contained area for her to be in.

Taking a medically complex child to the beach is not one decision. It’s a series of smaller ones made before you even leave the house. For a long time , it all was almost enough to talk us out of going more than once a year.

Each time we went, we’d come home with one more piece figured out . A different piece of equipment that helped, or a better way through one part of the day. That developed into the system we use today.

After one trip went smoothly and we all had a great day, I knew we could do it again. That’s when the beach stopped being “can we really do this today” and became “are we all healthy enough to go.” This is everything we figured out.

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Choosing the Right Beach With A Medically Complex Child

The beach you choose matters as much as everything you pack when you’re bringing a child with significant physical needs. We go to Mustang Island State Park near Corpus Christi. Day passes are capped at 250 per day. Make sure to reserve yours online and print it out before you leave home.

What makes Mustang Island work for us specifically:

Drive-on beach access, so you can park close to the water. When you’re unloading an adaptive chair, a canopy, a play yard, a cooler, and six bags, walking from a lot is not something you want to have to do.

Mens and women’s restrooms that each have showers. A family restroom with a shower and outdoor rinse areas close to the parking lot. We utilize the handicap parking near the entrance.

Loaner Adaptive Beach Wheelchairs. Mustang Island has two kinds available. Ask at the entrance when you pull in and they will direct you to the office to fill out the request form. All of their adaptive equipment is first come, first served. So, don’t build your entire trip plan around them being available.

On our most recent trip she wasn’t feeling well and our planned setup didn’t come together the way I expected. The park had all the wheelchairs available still, so we ended up using the park’s loaner chairs for the entire visit instead of the Manatee Bath Chair.

The regular beach wheelchair does not have built in trunk support. We added our size 4 Purple Tomato Soft Sitter for positioning. The chair itself worked well on the sand and at the shoreline.

Mustang Island also has a Water Wheels chair, that wasn’t listed on their website. . I did not know this until we arrived. It has inflatable pontoon wheels, a built in harness, and goes directly into the water. The harness allowed us to not have to use the tomato sitter. She went into the ocean in it and it was one of the better water experiences we have had.

Both chairs are first come first served. If your child requires adaptive seating to participate in the day, I would suggest still bringing your own as your primary plan.

One thing worth knowing: the family restroom at Mustang Island does not have an adult changing table. We built a system around that gap and it works, but it takes two adults and specific equipment. I am actively advocating for a changing table installation at this facility and will update this post if that changes.

How We Pack the Car

The difference between a relaxing day and a chaotic one usually comes down to what you packed, how you packed it, and whether you can get to what you need without pulling everything else out first. We travel in a minivan now, but we’ve made this trip in an SUV too. The bag system works either way.

The Bag System

We use 6 bags and each one has a specific job.

The diaper bag is her everyday bag. Extra diapers, wipes, toys, snacks, a change of clothes. Extra batteries and a small screwdriver too, because the last thing you want is a battery-powered toy to stop mid trip. We also pack a separate set of temporary clothes for the short drive from the beach to the shower area.

The car-side tote is what stays accessible on the beach all day. Sunscreen, sunglasses, towels, baby powder for sand, hand wipes. Everything you’re reaching for while you’re out there.

Before we leave the house, everyone picks out their post-beach outfit, clean clothes, socks, whatever they need, and rolls it inside their towel. That bundle goes into a grocery bag. The shower bag holds one bundle per person in the main compartment, plus individual toiletry baggies in the front pockets and shared spray deodorant.

When shower time comes, everyone grabs their bundle and goes. Nobody is standing at the family restroom door asking for something they left in the car.

The insulated bag holds the meal boxes, napkins, and can clip covers. By the time we’re loading up to leave this bag is empty. One less thing to fit on the drive home.

The soft cooler holds drinks, the PediaSure thermos, the Pedialyte thermos, water, snacks, and medications.

The small tote carries the two Ryobi fans, extra charged batteries, fillable sandbags, the beach blanket, 2 rolled up contractor bags and canopy stakes. This one comes out first when you’re setting up at the beach.

Car Load Order

I pack in this order each time we take the trip. The canopy lays flat across the full length of the cargo area as it’s around four feet long and needs to lay down. The shower chair goes on its side on top of the canopy bag.

The Convaid goes on the opposite side, folded flat. The play yard goes on top of the convaid wheelchair.

After that: the soft cooler in the middle where it’s reachable from the rear seat during the drive, the insulated bag directly in front of it at the trunk opening, the shower bag beside the cold bags, the diaper bag under her feet at the car seat, and the small tote and anything remaining on top.

That way the first things loaded are the last things you’ll need when you get to the beach.

Getting Set Up On The Beach

One of us stays in the car with her in the air conditioning while one of us unloads the canopy. Once setup is far enough along, she comes out and goes straight into the play yard while we finish around her.

If we use the tent shade, then it has attached sandbags. If we bring the pop up canopy, we use fillable sandbags from Amazon. You fill them on-site with beach sand, hang them on the canopy legs, and dump them before you leave. The beach mat gets staked down under the canopy The 6-panel popup play yard goes directly on top of the mat inside the shade.

The Ryobi fan uses the 18V ONE+ battery system and holds a charge the whole trip. The smaller Ryobi fan clamps directly to the play yard rail and points right at her. Both fans run on the same battery platform, so one spare covers both. Full setup for two adults takes about 30 minutes.

Getting to the water

The R82 Pediatric Manatee Bath Seat is a bath chair. We don’t just use it at home, we bring it to the beach too. It reclines, has a harness and supports her body so that she can sit right at the water’s edge. This is especially helpful If the beach has rented out all the adaptive wheelchairs.

The beach used to be stressful. Sometimes it still can be. Mostly now though, it looks like her laughing at a wave and us sitting next to her with our feet wet, not doing much of anything at all. Just enjoying the moment with her.

Adaptive Swimwear

Swim diapers stop being made past a certain size. The adaptive swimwear options I’ve found are expensive, and usually too large or bulky for my daughter’s needs.

I still use cloth diapers with her on occasion, and that led me to the solution we use at the beach now. A pocket diaper has two parts: the waterproof outer shell with a soft inner lining and the opening where you’d stuff an absorbent insert.

I just use the diaper without an insert. What’s left is a waterproof cover that fits like a diaper, is soft against the skin, and has nothing inside to absorb and hold water weight. It snaps up securely. Rinses clean and looks like a swim bottom.

I bring three or four empty pocket diapers in her bag. When we’re done in the water, I dry her off and change her back into a regular diaper and outfit. If we go back in, another pocket diaper goes on and we repeat. Whatever comes off goes into a small wet bag to be washed at home.

You want a “pocket diaper” specifically, not a prefold cover. Prefold covers don’t have the soft inner lining. The pocket diaper has both the waterproof outer layer and the lined interior, which is what makes it work without an insert.

Search “pocket cloth diaper” on Amazon. You don’t need to purchase inserts and you shouldn’t need more than three or four.

Managing Food, formula and medicines

If packing lunches for the beach is something that isn’t stressful to you, that is great — don’t change what works. But if sorting the food and making sure everyone has enough is the part of the day you dread, like me, this is what I do instead now. It makes things a lot smoother for my family.

Food

We stop at HEB along the way and go straight to the ready meal section. They sell pre-made individual meal boxes — a sandwich, chips, a small pasta dish, and a brownie for under $10 each.

Everyone picks out their own, then grabs a canned drink. Everything goes into the insulated bag and stays cold the entire drive. When it’s time to eat, I just pass out the boxes and drinks.

Tip: We use can clip covers on drinks. Keeps the sand out and I’m not worried about anyone dropping the can and spilling it.

The Thermos System for Formulas and Medicines

My daughter’s nutrition comes entirely from PediaSure 1.5 with fiber. Our dietitian gives us a specific number of cans per day and that’s what she gets. I used to stress out about keeping all her cans cool while we were out in the heat at the beach, but we eliminated almost all of that with one change.

A 40 oz insulated thermos. Before we leave the house I fill it partly with ice and pour all of her day’s cans straight in. One thermos holds a full day’s worth.

The thermos stays in the insulated bag all day. Every time she needs a bottle I unscrew the lid and pour. Doing it this way keeps me from having to worry about the cans getting too warm, keeping count of the cans we use or where to throw them away while on the road trip. When the thermos is empty I know she’s hit her daily goal.

We bring a 20 oz thermos filled with Pedialyte over ice. This ensures I can keep her hydrated in the heat.

We use a child’s size thermos with a soft ice pack to pack daily medication and a pre-filled backup dose of each medication in capped syringes. They won’t roll around or get crushed, and the thermos keeps them at a stable temperature.

Backup doses that don’t get used go straight back into the medication area at home for the next day. Nothing wasted. Medications get packed first, before anything else goes in the bag, and verified before we leave the driveway.

Showers and cleanup before getting back on the road

The shower used to be the part I dreaded most .Having a fun time at the beach but then having to figure out how to get my daughter showered and dry before the road trip home. This is what we do now and it has made all the difference.

It Starts Before You Load the Car

Before we break down our setup on the beach, she gets changed into the temporary clothes I packed. This is not her clean outfit for the ride home. This is a dry change of clothes for the two-minute drive to the shower facilities.

After the showers, the wet swimwear and sandy temporary clothes end up in the contractor bag with the bath chair. But getting her out of wet clothes first saves me from a soaked, sandy car seat.

The Drive to the Shower Facilities

The shower facilities at Mustang Island are near the park entrance and the RV area. There’s a large covered pavilion with women’s showers on one side, men’s on the other, and outdoor rinse spigots along the wall in between. There is also a family restroom with shower.

While the Group Showers

Everyone grabs their bundles from the shower bag and heads to the restrooms. One person brings the Ryobi fan with them.

Each stall has a dry area near it’s door with a bench, then the shower at the far end. The fan sits in the dry area. It cuts through the humid air and makes getting dressed after a shower significantly less miserable.

My husband and I stay at the car with our daughter while the group showers, using that time to take the bath chair to the outdoor rinse spigot. It’s important to rinse the sand and salt off of it thoroughly, especially around the buttons and joints, because salt and sand will work into the hardware over time if you skip that step.

We also use this time to go to the bathroom ourselves, one at a time, before we go into the family restroom to shower. That way once we’re in there, all of our attention is on her.

The fan Handoff

When the first person from our group finishes showering, they bring us the fan and I give them the keys to the van. Once we have the fan, it’s our turn.

Setting up the family restroom

I grab the bath chair, shower bag and fan and head to the family restroom. Getting everything set up.

The washable incontinence pad gets laid on the bath chair. The chair is wet from being rinsed, but the pad is water-resistant on the bottom and dry on top . This way she’ll have a dry surface to get dressed on.

On our most recent trip I brought a BSISHL Heavy Duty Camping Cot into the family restroom. It fits inside the space, holds up to 500 lbs, and with a Medline pad on top gives her a clean dry elevated surface to lie on while we get her dressed. It folds flat and travels easily. There is an infant changing table mounted on the wall in that restroom but it is not usable for a child her size. The cot is what we use instead until that changes.

The shower bag goes on the counter, fan is turned on, towels pulled out, and the shampoo and conditioner get placed in the shower.

I grab the two packed shower shirts and put mine on. When everything is set up, I text my husband and he brings our daughter in. 

Getting everyone clean

Once we’re all inside, my husband hands her to me while he puts on his shower shirt. The shower shirts are important because when you’re holding a wet child against your body, the fabric gives you grip.

I start things off and hold her while he washes her body. Then we trade. He holds her while I wash and rinse her hair. The whole time she’s in the shower is about two to three minutes.

We’re trading off because holding her throughout the full shower is too much for one person when she’s wet and nearly 80lbs. This is the part where having two adults is necessary.

Once she’s clean I reach around and grab her towel and wrap her in it. My husband hands her to me and I set her on the prepared bath chair. Then I diaper her, get her dressed, run some conditioner through her hair and brush it out while my husband takes his shower.

By the time he’s done, she is fully dressed, dry, and ready. He gets dried off and dressed and takes her to the car. Then it’s my turn.

Last one out

The fan is still running while I shower. Once I’m dressed I grab the toiletries from the shower, load them along with the wet towels, clothes, and the Medline pad into the Walmart bags. The bags and fan goes back into shower bag.

I’m now able to grab the shower bag and bath chair and walk out in one trip.

Packing up to leave

The bath chair goes into the doubled contractor bag in the trunk. Everything else is already loaded the way we packed it at the start of the trip.

That’s the last step. It’s time to go home.

This system has held up for a few years now and I hope it helps you get to the beach with your medically complex child.

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