If you are a special needs parent, you are probably chuckling at the title of this piece. Because you KNOW. You know what it takes to go on a vacation that will probably be more exhausting than just staying home. But, if you are a new special needs parent, or you are a supporter and haven’t experienced what it takes to go on vacation with a special needs child, here is just one example of what it takes. To be clear, everyone’s packing and experience is different because every special needs child (and adult!) has different needs, even with the same diagnosis.
My son, Kai, is now twelve years old but developmentally he ranges in ability levels between 1 ½ and 2 years old. Traveling with Kai has shifted somewhat over time, but a lot of things also remain the same. What is not the same are his parents. We are getting older and it is getting harder. Our physical abilities have changed over time; we both have to accommodate ourselves and each other for our various challenges and there is only so much a very willing, supportive fourteen-year-old big sister should be asked to do.
There is a memory that comes up for me every time we try to go anywhere for more than a couple of hours. When I was a kid, my mother would be packing for a trip for our family of four and at some point, without fail, I would hear her yell across the house in frustration, “I hate packing!!!” It makes me chuckle every time I think of it. Not to lessen her burden at the time, but if she only knew what it takes for us.
We are getting ready to go on a staycation for a few days and we are leaving tomorrow. We were supposed to go to Galveston a couple of weeks ago, but a huge storm hit so we had to postpone. The storms keep hitting down there, so we decided to drive just an hour and a half away to Grapevine, which has a shopping mall that is extremely large. This is right up my daughter’s alley. As a younger girl she HATED shopping with a passion. Now, its, “Mom, can we go to the mall?” We live almost an hour away from a mall in rural East Texas and I am sure that this adds to the mystique that is the shopping mall. So, she is super excited to go. And they have an indoor pool for Kai, which is his only preferred way to go swimming these days. And this way, our indoor vacation will not be controlled by the weather. We will divide and conquer, based on Kai’s ability to tolerate his surroundings. So, Daddy and Daughter will go to dinner and Mama and Kai might chill at the hotel or go to the pool. Mama and Daughter will go to the mall, and Daddy and Kai will play and make mischief, doing something else. We may all meet up for ice cream. But we will all go to the aquarium nearby. On this, we can agree.
I recently lost my part time job working with special needs adults for refusing to remove my Pride bracelet during Pride month. And, although I am confident that standing up for what is right was my correct path, money is now tighter. But a year or two ago, my husband opened a couple of different credit cards that offer rewards. Without fail, we pay off the total every month and this has given us three nights of free hotel stay. Add the fact that we have been saving for back to school clothes, etc., this trip is almost free, minus the food. So, we are ready to go!
NOT SO FAST. First, we have to pack. Think about what you do to get ready for a trip. What do you pack? What do you pack for your teens/tweens? What did you pack for them as babies? We have both. A teen and a tween that is a baby. Here, in no particular order, is the current running list of what we need to take, just for Kai.
We need three different types of diapers – inside, outside (yes, we layer) and swim. Wrestling singlets, one under each outfit so that Kai doesn’t get into his diaper. We also use them as swimsuits. Baby wipes. Grocery bags. Large trash bags. CBD oil (used to be for seizures and now to control damaging stimming behaviors with mixed results). Sippy cups with extra inserts. Shoes, socks, tops, bottoms. Two tablets. AT LEAST five pairs of headphones (because he just loves to break them). A hot spot. A back up hotspot. Homemade food. In a cooler. With ice. A gallon of milk. Serving spoons. Dishes. Teaspoons. Vanilla wafers. A knit or crochet blanket. Two different quilts. A cleaning kit for if he manages to get through all of our safeguards and smears poop on something in the hotel room (remember, this is a twelve year-old’s body with matching sized poop). A wheelchair, as a safe place because a stroller that he fits into starts at over a thousand dollars. His toy laptop, which he must have at bedtime. Chargers for all of the electronics. Bananas in case they don’t have any at breakfast, which he may or may not eat. Multiple pairs of back-zipped pajamas (which cost at least $50 a pair, because OF COURSE THEY DO). And I am sure there are things that I am forgetting.
We also need to have safeguards in place at the hotel. Their Wi-fi has to work (although our hotspot and charger might get us through) and it has to be consistent. We have given up on whether the fridge in the room will be big enough to hold a gallon of milk. Now, if not, we just keep adding ice to the cooler. We inform the hotel when we make reservations and then we call again the day before to remind them that we have a son with special needs. And although he is “non-verbal,” he can be very LOUD. And that we need to have a room that is convenient enough for us, but also is less likely to disturb others. They must have an INDOOR pool. For some reason Kai has decided that this is the only water play he is interested in after a decade of loving outdoor pools and splash pads. And the trek from our van to our room needs to be as minimal as possible, because can you imagine what this looks like, moving all of this stuff from the van into the hotel, as if we are permanently moving in? Oh, yeah, and a laundry room. Which reminds me, I need to pack detergent and fabric softener. You didn’t think the laundry stopped because we were on vacation, did you? Diapers=leaks=dirty clothes=wash because there is never enough no matter how much we pack.
Remember, the above list is just KAI’S stuff and KAI’S needs. We haven’t packed for the rest of us yet.
While we are packing, Kai is still Kai, doing his thing. As I race around the house, trying to gather things together, Kai stops me in the hallway, wraps his arms around me and leads me in a romantic dance. Yes, I love this. No, stuff is not getting packed. Yes, I am smiling.
I vacuum up the cookies on the bedroom floor. I go get a few things, pack them and then discover that Kai has just eaten more cookies and the bedroom floor is covered with crumbs again. Kai poops. I stop what I am doing, change him and throw the soiled pajamas (you know, the ones that are $50 EACH) in the washing machine. My husband has finished washing everything, so we won’t worry about the one pair. Then he does it again. OK, two pairs. And again. Now we are starting a new load.
I go to assist my daughter with laying out the clothes she is going to bring and return to find a bag I have packed half unpacked. And Kai is using the cooler as a chair and singing at the top of his lungs using garbled words that I know are to Mickey Mouse’s Choo-Choo Express.
I put Kai’s favorite blanket in the wash earlier and can’t believe my luck that he has not tried to steal it from the machine and drag it, sopping wet, across the house and back to his bed. THAT is progress.
By the way, if you haven’t met him, my Kai has the sweetest smile and is a very affectionate kid. He also knows when to bring out that SMILE, the one that makes you swoon, when he has been doing something he knows that he shouldn’t. And don’t be fooled, he KNOWS. Sometimes he will try to fake us out by using an expression on his face that conveys, “I don’t understand, I have a special brain.” This is complete nonsense. His daddy has the same smile. So does Kai’s big brother (we have three adult kids who are on their own). You gotta watch out for the men in our family. You’ve been warned.
We are leaving tomorrow. The packing is about ¾ finished. And I am exhausted just thinking of what is to come.
This gig is not for the faint of heart. Sometimes I let go of things in other parts of my life because I have to keep my eye on the prize, my son. There is only so much time, energy and resources.
Don’t let this frighten you. It is a tough gig but it is the best job in the world. Remember that romantic hallway dance? I know you have your own version of this. And you are NOT ALONE. If you feel like you are the only one(s) in the world doing this, it’s because we are all at home, doing it too. I promise, we are out here.
Are there days where I feel like I can’t go one step further? Sure.
Tomorrow’s not going to be one of them. Because we are going on vacation, damn it.
Oh, crap, I forgot the toothpaste. And toothbrushes. And…
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