Last week, I had an opportunity to take a mini vacation. My husband had to travel for work, so we arranged childcare so that I could come along with him for two nights. Two nights in a hotel: my days were my own to sleep, read, or shop; my evenings were dinner-and-a-movie dates as a couple; and my nights were undisturbed sleep. It was just what the doctor ordered. As a parent caregiver, I get told all the time that I need to rest and take breaks just like this one. Unfortunately, most people don’t realize how much work it takes to make rest happen.

Here’s a peek at the prep work behind my two-night break:

• Nearly two months’ out, I began going through my list of trusted caregivers to see if anyone was available. This took several calls and texts, taking up several hours over several days.
• I booked a second sitter to drive one of my children to an extracurricular activity, so the first sitter wouldn’t have to manage everything alone.
• I had to clean out and rearrange our guest room for our caregiver to sleep in. Usually, this room doubles as a sensory space, so I had to choose what to disassemble and put away, or disassemble and put elsewhere temporarily so my son could keep using it.
• I made a list all of all the medications, times, and dosages. I wrote out instructions on how to give them so they would be received, and how to handle it if one of my children refused to take their medication.
• I meal-prepped. My children have specific diets. One has ARFID (an eating disorder). In addition to having all the foods that they will eat bought and ready, I also had to think about what the caregiver would eat, as most people’s diets look very different my children’s. So, I shopped and prepped some options for her.
• I pre-packed all of the school lunches for the same reason as above. I put each meal into separate ziplock bags with each child’s name on them, and left them visible and organized by date in the fridge, so they would be foolproof.
• I printed out a schedule to ensure that school times, appointments, extracurriculars, and important routines were easy to see and follow.
• I pre-packed grab-and-go bags for all of their appointments, so nothing important would be forgotten. It just seemed easier than making a list of every item that would need to come, and instructions on where to find all of those things in our home.
• I left instructions and tips regarding snacks, toys, activities, routines, and house rules.
• I put in the prep work that it takes to have a trusted caregiver in the first place. Not just anyone can babysit a disabled child. So much careful thought and selection happens to find someone who is safe and trustworthy, who can handle the additional responsibilities, who can be kind and gentle, who is willing to listen to and follow instructions, who can be trusted around mediations or medical equipment, and who actually has some hours to give.
  Then, you cannot simply jump in with both feet. You try it for one hour. Then two hours. You see how they do with taking your child to an appointment and back. Then you try half a day… and on and on. This great experiment of trust often takes years, only to have a caregiver move away right about the time you are comfortable using them for an overnight. So you start the process all over again.
• I put in the extra work to afford it.
  You don’t leave a vulnerable child with additional needs with a $5/hour tweenage babysitter. You hire an adult at an adult wage. You hire an adult who possibly has teaching or medical credentials, and pay them a wage that reflects that.
  You put in extra shifts at work to afford them, or you spend hundreds of hours applying for grants and reporting back to the grant organizations that each have their own forms and receipt-submission processes. Most reimburse you after the fact, so you cross every T and dot every I, then hold your breath, cross your fingers, and pray to God that they accept your claim, lest you get rejected and have a $500 babysitting bill to pay and no money to pay it with.

Sometimes two nights doesn’t seem like enough time to recover from all the prep work, let alone the life stresses I am trying to get a break from.

Now, I’d like you to consider this: my children aren’t even “high-needs.” They can speak, they are toilet trained, they can feed, bathe, and dress themselves. Yet, this is what it takes to prepare for two nights away from them. Please take a moment to imagine what it might take for a family who has a “high-needs” child: one who cannot feed or dress themselves, one in adult diapers, one who needs to be transferred from a wheelchair to the bed or bathtub and back again. Imagine how impossible it might be for both parents to leave the house at the same time.

“Just take a break.”
“You need to practice self-care.”
“It’s not healthy to not have any hobbies for yourself. Invest in you.”
STOP.

Trust me, disability parents know they need to take a break. That’s not the problem. It’s the insurmountable prep work that needs to happen before they can take a break that’s the problem.

Dear Family and Friends, I know you mean well, but please stop telling parent caregivers that they need to take a break. Not unless you are willing to put actions behind your words. Not unless you immediately follow up your suggestion with an offer to be trained as a caregiver, or a gift of cash to hire one.

Anything less is unkind.
Anything less is figuratively adding salt to a wound, or kicking them when they are down.
Anything less is damaging to their weary souls.

Shouting “self-care” at someone who needs “community care,” is the most common way we fail people.

-Anonymous

This post was written and shared by Ashley Lilley from The ND Family Blog: ashleylilley.com