Just like everything else with a special special, moving from one stage to the next can conjure up questions no one knew to ask. We’ve moved through several odd questions and set-ups when it comes to bath time. From towels on pillows to fighting with insurance over safety equipment, there’s a lot to say and consider. 

At first...

I think the market is really good at infant solutions. It's also good at adapting to offer better solutions over time. How many times have you said to yourself, "I should have thought of that!"? There were classic and innovative items on our baby registries, to be sure. I love bath time. A time to play, connect, and reset to fresh. Such a sweet time with your itsy bitsy.

All of this is well and good until your special special isn’t so itsy bitsy. They outgrow infant items but not the infant needs, i.e., a fully supported upright positioning to have baths. So what happens when the mini tub, the kitchen sink, and every other standard bathing option is simply unsafe?

Grab your rubber duckie and let’s find out what's next.

The Road Diverges

When Natalie outgrew the infant tools, we moved to the floor. That's a little different than the average toddler, wouldn't you say? A set of pillows and towels were our go-to for the 3+ year gap between fitting in an infant bath and receiving her own medical safety bed. It would be even longer before she got a special needs bath and shower chair.

I’ll rant about dealing with insurance and getting appropriate equipment another time. The pillows and towels set-up totally works in the meantime. I also think it’s the safest when you don’t have all the fancy equipment meant exactly for this special situation.

Now, THAT'S Special

Speaking of special equipment, if you have a child that requires extra safety precautions for common daily cares, start talking now with your Primary Care Provider (PCP), the social worker associated with their office, therapists, the moms, the forums, and scour the corners of this blog. It can be an uphill battle educating yourself, advocating, locating, ordering, getting financial coverage, and then waiting for the thing your kiddo really needs. Make sure you start conversations like this as soon as you can, even if the process is long. The conversations you have today will produce what you need at some point.

There is a metric ton involved with navigating the special life, but don't forget that it's ok to not know. Who goes into this special life prepared, anyway? Some of the most common childhood experiences can actually be pretty complicated topics that need special attention as your kiddo grows. Seek and ye shall find. You never know who knows just what you were looking for.

It was in a conversation like this that I learned there are places that accept donations of special special items in good condition. Their whole mission is to bless the next kiddo that might need something that is no longer used or has been outgrown by another. In my area, we found excellent equipment at the CPATH Equipment Closet. There are also nationwide resource centers that recycle, lend, and donate medical equipment, like the site here. You will bump up against someone who knows the go-to resource center near you; the more vocal you are, the faster you find these treasures.

If you've tried to just outright buy a piece of medical safety equipment, you know the sticker shock. Yes, these kinds of items were made with the special special person and bath time (or insert other activity) in mind. They were also intended for the insurance game, and that's why you can't go to Target or Amazon and get one for a reasonable price. I tried. I'm sure there are a lot of market forces at work here, but suffice it to say, it's maddening when you know what you need but there is a bureaucratic or price wall built high around it.

We set out to get a special needs, supportive and correctly-sized bath chair as soon as we knew what to ask for. But it was simply unaffordable without the long process of getting this covered by a type of insurance Natalie didn't have at the time. There wasn't one we could find on donation sites at the time either. Complaining about the situation aside, it is also the reason why you have what's following in this post.

Regardless of where and with what equipment (fancy or not) you will be having bath time today, here are some of the most important elements of a special special bath time:

Set the Stage

The most important first step is to make sure you and your special kiddo are in a safe place where they can't fall. Any safe area you have for your kid to play or rest can easily be converted into a bathing area.

Like I mentioned before, Natalie went from infant bath to the floor. But it's not as though I set her in the highest traffic area of the house! There's a stage that needs to be set properly, after all. For the actual bathing area, here are my layers from the floor:

• plush blanket, 
• light blanket, I prefer a muslin one like these
• baby lounger pillow (because there’s a dip for a booty in it), 
• Nursing pillow to create the upright angle I was looking for
• Small crescent shaped cushion borrowed from a tummy time play set (could also roll up a smaller hand towel or washcloth) for head and neck support
• Clean bath towel, over the whole set up
• Special special kiddo
• Second towel (or light blanket) on top to prevent getting too cold
• Sitting in the splits or cross legged within reach of both:
• Large pyrex bowl (measuring cup) with warm water, 
• What we called “the bath bucket” (contents to follow)

The goal was to get her laid out enough to stretch up and down and roll side-to-side. At the same time slightly inclined to prevent reflux. Most of the items we used for this were sitting around us anyway. You can reimagine this type of set up with what came from your registry, baby shower, donation centers, or what happens to already be around you.

Timing

Alongside all this growth she kept insisting on, Natalie's medical needs were also changing. It became very important to have a good schedule so we could tease out details our medical providers where looking for. If you have a special kid, you’re laughing. They tend to be the ones to set a schedule that you have to bend to, not the other way around. Yes, there is a time to call it and not drive yourself insane trying to set unrealistic structures around someone who will not listen to any of your reasoning, thank you very much. But you may have to rethink what their rhythms can accommodate without a wild reconstruction of everyone's day. And there's a flip side, too...

Before nursing became a reality in our home, I remember talking to a special special mom who is three years ahead of where we are. She reported that her special kiddo decided at age five that he was ready to have a bedtime and sleep through the night. Like a light switch. They had been attempting that very thing for five years! Including sleepless nights and all that comes with that. One day it’s the same kind of exhausting wild, and the next, kiddo is taking the hint about a daily ritual. That was enough encouragement for me to keep trying to set some sort of daily routine for the absolute chaos we were living. Perhaps if we could find a rhythm around bath time, maybe we could start to better notice patterns in her that doctors were looking for. Could it be that if we did this, we could also fit in a rough structure for the entirety of the day? Perhaps even squeeze in some rest? Dare I suggest... sanity?

Just like in any kid’s day, bath time helps set structure and expectations, circadian rhythms, and it lets them know they are safe and loved. Narrating what you’re doing for bath time reinforces both the routine and that you are a safe person they can count on (*extra important if you don’t happen to be mom or dad*). They get to hear you, spend time with you - shoot! - it’s an opportunity for ALL the love languages to be sensed at one time. Ah! Doesn't that just make you want to stop right now and go kiss those special special kiddos right on the cheek! Don't we just love them to pieces?!

Stacking Good Habits

Additionally, applying lotion or oil after cleansing can be a bonus opportunity for range of motion (ROM) reps. If your special special would benefit from a little extra physical activity, this is a great time to build it into another part of their daily routine. This can be done in either a relaxing or energizing manner, appropriate for your daytime or night bath. And all the physical therapists rejoice!

Music and singing is also a great detail to reinforce everything else. I like to play a calming piano playlist and adjust the lighting and any fans we have going since Natalie is a nighttime bather. Morning bathers can do the same to set the tone for a great day with something bright and upbeat.

Get this: Natalie even has favorite songs that only a certain nurse plays for her at bath time on those specific days. I swear, sometimes I hear this precious, nonverbal child "sing along." What a sweet way to encourage connection and see her personality on display!

The Bath Bucket & Bath Trolly

Now that you know where you'll be doing the bathing, it's time to get to the heart of it. The products build the process. Most baths these days happen in her Sleep Safe Bed on top of chux pad. We used puppy pads until we had all of our DME and insurance sorted properly. You can also just add an extra blanket or towel.

Natalie graduated from the bath bucket to a bath trolly over time. The bucket made sense when we were on the floor. The trolly makes sense for her bedside or in shower set-up. These are the essential items we stock:

• Her own towels and washcloths
• Pyrex bowl. I use this to get water warmed up in the microwave on demand ALWAYS check the temp before the bath starts.
• Fragrance free products when possible! No need for fragrances and additives for all the possible sensitivities and "granola mom" reasons, but there is also a medical slant. Smell can be the canary in the coal mine that things need to be addressed. Don't cover that up and delay intervention you might need to take. For example: smell can be the first sign of an oncoming UTI.
  • Foamy wash **see note about body wash below
  • Shampoo, we like this one and dilute a mix in a pump bottle
  • Conditioner, we like this one
• Moisturizer: we like almond oil currently, but we've also enjoyed fractioned coconut oil and fragrance free baby lotion. I even made my own with shea butter and a few different oils at one time, but found that straight almond oil in a pump works great without all the DIY hassle.
  • I like essential oils, but there are just too many possible contraindications with sensitive kids to feel comfortable making any suggestions, so make sure you know that you know that you know it’s safe to use ANY (on skin or diffused) before adding it to your special special bath time routine. May want to skip altogether simply for the fragrance reasons listed above.
• Chapstick (we tend to lean petroleum free because she's on oxygen)
• Toothbrush or toothette. Another opportunity for oral care! I explain why in the toothbrush section of this post.
• Cotton swabs, I keep in a container with a lid.
• Nail clippers
• Ear wax removal tool
• Any other bits and bobs you might want; our misc. container has paper tape, safety scissors, 2x2 gauze, and a tube of skin protectant cream we have from one our hospital stays
  • Tip: When we did the floor set up, the bath bucket also had a pack of wipes, one or two diapers, and some zinc oxide diaper cream stocked so I didn't have to get up to get all of that from a different area
• Jammies and socks; substitute play clothes for day time bathers

**Want to know a secret pro tip? We don't use soap on her body daily. Really. The washcloths in warm water are plenty to give her everything she needs to keep her clean without unnecessarily stripping her skin. She doesn't get dirty enough to warrant soap every day anyway. Certainly, if she needs a real scrub or has been out in the world with all the germs and pollen and people, bath time can get sudsy!

Just as important as cleanliness is the daily ritual that helps keep her whole day on track. Skipping bath just because she doesn't need one takes away all we are trying to accomplish with routine and structure, so warm wash cloths fit the bill. This is extra important for our low tone, full care kiddos anyway since they may be spending lots of time on their backs and booties. Another opportunity to move around and get the blood and lymph flowing.

It Finally Arrived!

We FINALLY - and only after a long long wait - got a bath and shower chair. Cue the cheers!

But wait... We don’t use it daily for a bath.

Say WHAT!?! After all the trouble of getting it (and it was troublesome, let me tell you) why don’t we use it daily for her bath?

Well, for one, we have a rock solid system she knows that allows her to trigger bedtime vibes. Getting her up and out of bed just to put her right back in is a bit of an unnecessary ruckus. Secondly, we would basically have to be in travel mode with a ventilator and oxygen to get her to an "off sight location" for a bath or shower in the bathroom. It's just more stimulation and trouble than is needed for how we integrate bath time into her routine. The way we do bath time now is even seamless for doing other necessary things like administering meds, for example.

So, then, what do we do with this fancy bath & shower seat that we fought so hard to get?

Firstly, we use it to go to the pool! That's been my favorite use so far. Look how perfectly this works as a beach chair when it's detached from the roller base.

We still use the shower chair to be in the shower. Notably, to get the cement-like glue out of her hair and scalp following an EEG. Yuck! She's also used it when she's extra sweaty or dirty. We've done it just for fun and variety, too. Usually at a time and for a reason other than the nightly ritual.

That may change as she grows, as things do, and we are so happy to have a bath and shower seat that will last her through a generous growth period. For now, however, bed bath with trolly is a fantastic system for Natalie.

What about the hair?

I didn't forget. That's important too! It isn't a daily activity, so I wanted to separate it out here. Hair can be done in our special needs bath seat in the shower or in bed. It can be done separate from bath time or stacked. I have found that I like to do it in bed just before her regular bath time. Here's how that looks:

• I love to use the hair wash basin Natalie was gifted. First, I fill the water bag in the shower then hook it to an IV pole so I can roll it to just the right spot at the head of her bed!
• Wash, rinse, wash, rinse,
• Conditioner, don't rinse yet; place her head on a towel and pillow with conditioner sitting in her hair → empty the basin and bring it back,
• Rinse out conditioner,
• Comb and wrap clean hair in the twisty hair towel,
• Empty the basin and let all the tools drip dry in the shower
• Regular bath time as normal
• Detangle, style mostly dry, clean hair as the cherry on top of bath time.

Squeaky Clean

With the girls being nine and six at the time of this writing, I know the reality that our oldest has moved on from baby and little kid bath time in a way Natalie just won't. Of course, some days that feels like something to grieve, but today - and I hope this is sweetly felt by you and your special special, too - it's just so meaningful. I love that we get to do bath time this way for the foreseeable future.

We have built-in quality time together. It stacks so many things she needs from us in her day as caregivers anyway, but it is also, and more importantly, an opportunity to personalize her care. To make her feel as loved and special special as she truly is.