While planning our upcoming trip to New York, I am once again amused as I review all of the things to consider when planning a trip with a child with special needs. Of course, it is always a challenge to pack for a trip for ANY family to begin with, and we have to do all of that planning and packing, too. But then, there are the OTHER considerations.
For this trip, we have chosen not to fly from East Texas to New York. We are DRIVING. Now, we have flown to New York before with varying degrees of success (OK, technically, we made it so it was successful, right?). But this time, we decided on autonomy, schedule flexibility and a leisurely pace so that we can sightsee both ways.
Since we are not flying, this removes the stress of worrying about what our son’s behavior will be like on the plane. This includes whether or not he will be bouncing his seat really hard while he stims, which shakes the tray of the person sitting behind him. It also removes the stress of his using his tablet WITHOUT headphones, which can disturb others. It takes away the possibility for the fun repeat of the “diarrhea incident,” on the plane. And, it removes trying to change the diaper of a seven year-old on a plane in general (Once a flight attended offered to let me change him on the floor of the galley area, which was awesome. This was separate from the diarrhea incident.). It eases the stress of endless waiting at the airport, something our son does not prefer (who does?). So all of that is good.
The flip side, is now we are going to spend many, many, many hours in the van. And sightsee. And stay at hotels. And all of this, while enjoyable, has its own trials and tribulations and planning.
I am a born and raised New Yorker and, even so, it can be nerve wracking to take a child with special needs on the subway. It is probably different when your child is high functioning but because our son is low functioning, if we ever got separated, he would not be able to ask for help. Or even give information if someone were to attempt to help him. When he was smaller, we were able to bring him on the subway in his stroller. But he has outgrown it and virtually all strollers for kids. The next size up is adult-sized. For a cool thousand dollars. And this stroller does fold up but it is big and bulky and difficult to get around. We also looked at pull wagons but walking for blocks in the city, pulling something like that behind you, is challenging at best. Today we purchased a wheelchair. Our son is completely mobile. All of his disabilities are neurological. But this seems like the best option for our unique travel needs. Also, because he is low functioning, he has no feelings at all about being in a wheelchair. This may not work for a child who is more aware. But it will work for us, for now. If we decide to take him on the subway, there are very few stops that are wheelchair accessible or have elevators. So, we have to take him out of the wheelchair, fold it up, carry it up while also holding on to him, reset it all back up at the top and put him back into it to continue on. And don’t forget the ever growing, expanding diaper bag backpack. And our nine year-old neurotypical daughter.
Easy? No. Worth it? We think so.
Oh, and hey, let’s talk about what is IN that diaper bag backpack. Diapers and wipes. Guess what? NOWHERE in New York City are there places to change a seven year old who wears diapers. So, a towel. Because we will be changing him in some WEIRD spots. Two changes of clothes. At least. His food, because he will only eat certain things. Spoons. Straws. A sippy cup. Hand sanitizer. A hot spot. A tablet. A back-up tablet for when the first one eventually dies. A charger. Sunscreen. If we are going to a splash pad, another towel. A bathing suit.
Remember, this is JUST to travel out for a day in the city. We haven’t even packed for our family OR the car for the road trip yet.
So, the road trip. We used to bring a playpen or get one at the hotel. But recently we discovered that we can get a twin roll-away bed and now he enjoys sleeping on that. So, there’s one less thing to pack. But, this is assuming every place we stay has that available. Better bring the play pen as a back up, just in case.
We will need to bring three times the amount of clothes for him as the rest of us. Because there are accidents. And also, because our son has this thing he’s been doing with his sippy cup lately that we refer to as a milk bath. Yeah. So, lots of clothes.
Our son likes to play with a certain electronic toy at night in bed before he falls asleep. So, we need to pack that. And the only two books in the world that he will let me read to him. We have to bring those.
Our son likes to sleep with a certain crocheted blanket that is green and white. I bought it at a garage sale. So, we’ll bring that. But that blanket is different from the blanket he likes to use during the day, which I crocheted myself. It’s a big granny square, bulky and rich shades of brown. So, of course, we have to pack that.
Swimming! We will be swimming at the hotels and at my father’s girlfriend’s house in New Jersey. We have the bathing suit and towel but we need the life jacket! Can’t forget to pack that.
Bathing! Our son gets eczema, so we need to bring the Cetaphil body wash and the shampoo and conditioner that doesn’t make him break out.
Door knob locks. Because, you know, doors. We need to pack those.
Extra shoes.
Did you know that at certain amusement parks you now have to show a LETTER FROM A DOCTOR that states that your child has a disability in order to have disability access (Here’s looking at you, Six Flags Great Adventure in New Jersey!)? Have to make sure to get that and pack it. In a place where I can remember where it is. And remember to bring it that day. Grrrr.
We have a t-shirt that we had made with our son’s name, identifying information and our telephone numbers in case he gets lost (our scariest nightmare). We need to pack that. And also, maybe get more of them made.
Remember, I haven’t packed ANYTHING for myself, my husband or my daughter yet.
So how do we do this and still have fun?
- We make a list together. Include all MEDICATIONS and things that you cannot easily replace if you forget them first. Include all large items like strollers, car seats, wheelchairs, jtube accessories, oxygen tank stuff, all of that, next. Think about a typical day, step by step and write down everything that your reach for during the day (or actually make this list one day as you use the stuff).
- We BOTH make lists separately. If you are caregiving as a team, it is an extremely rewarding use of your time for BOTH of you to write SEPARATE lists and compare them. I can almost guarantee you will both have something that the other one forgot.
- We think about what we are planning to do while on a trip. What extra things will your child need to make your fun events successful for them?
- We plan to forget SOMETHING. Because we just will.
- We make sure that the thing we forget is something that we can replace when out of town. You know what the irreplaceable stuff is. Make a checklist and check it off AS YOU LOAD IT.
- We make our trips as flexible as possible. This may mean taking turns going out with our 9 year-old or not going to the fanciest restaurants because our son isn’t ready to sit at a table for as long as that type of meal takes. We’ve eaten those types of meals before and we will again. But not on a family trip; at least not for the foreseeable future.
- We set our son up for success when traveling. If we are invited to something when traveling near friends and family and we don’t think our son will do well, we just don’t go. Those folks will just have to understand. Or one of us stays with our son and one of us goes with our daughter. This way part of our group relaxes in a safe feeling environment for our son and part of our group goes out to experience something new.
- We bring extra people. If you can, bring more adults with you that have experience caring for your child. Trade off. More people equals more opportunity for different group combinations when traveling.
- We dare to do it. Here’s the honest truth – it’s MUCH easier to stay at home. This type of trip takes tons of planning, foreseeing possible pitfalls, problem solving and flexibility. But it’s WORTH IT. It’s worth it to do something new with your child, take them out of their comfort zone (and you, too!) and be a part of the world in a way that maybe they aren’t on a day-to-day basis.
A few more things. Don’t forget to pack for yourself and the rest of the family after all of this. Laugh at your mistakes. And, as my daughter will gleefully remind us every other minute up until the trip, “Mom, can we bring snacks?”
Bring snacks.