Month: April 2021

Although we have been mostly grounded during the pandemic, in the not too distant future, travel is going to become a way of life again. You may be thinking about seeing distant family or friends or just taking a fun trip somewhere when it is safe. Worried about travel with your special needs child? Don’t be. I endured a worst case scenario and came out on the other side. You will be ok!

I have done a lot of traveling in America in my lifetime. I have taken tons of flights, trains, public buses, a few Greyhound bus trips, subways, freeways, you name it. And there are a few trips that stand out in my memory.

One such trip was the time that I was on a flight from New York to L.A. and an extremely obese woman (multiple hundreds of pounds) stood in the aisle for the entire five hours. This, in itself, would have been fine except she smelled like she hadn’t bathed in a decade. In fact, the entire cabin reeked. All of the passengers were complaining to each other, things were being sprayed, all to no avail. We just had to endure it. It was awful.

Another trip I recall is being on a Greyhound bus next to a very pregnant woman who was holding a toddler in her lap. The toddler must have been all of maybe one and a half years old. She was happy and jumping up and down in her mother’s lap, bumping her belly all the while. I held her for the mom. For about 10 hours.

I have invited people with newborn babies to sit next to me during flights and told them that whatever happened, it would be totally fine. No worries! I was an ally.

I am really, really glad that I had these events in the karma cue, because it was my turn to travel with my son with special needs. And, man, it was a doozy.

This was about 3 or 4 years ago. My husband and I, along with our daughter, Amaya, who was about 8 and our son, Kai, who was about 5, were sitting in LaGuardia airport in N.Y. getting ready to fly home to Texas. Our flight out had gone really well. My husband and daughter sat in front of my son and me so that if my son kicked, he would be kicking a family member and not a stranger. He had been a bit loud and had dropped maybe 25 vanilla wafer cookies on the floor but honestly? It was a dream. So I was ready for a repeat.

In case you don’t know, Kai has about 9 different special needs diagnoses, but he presents as low-functioning autistic. He stims a lot, rocking, tapping and making noises with the occasional head slap or throat punch for good measure (only his own throat). He loves to use his tablet but refuses to use headphones. So, our section was busy, but Kai was happy and no meltdowns occurred.

The terminal at LaGuardia was HOT. Something was wrong with the air conditioner. This did not bode well for happy kids. Since we had time to kill, we decided to get a snack. The kiosk nearby had Greek yogurt, one of Kai’s favorites at the time (he has since completely rejected it, although not after this incident, but some time later). My husband bought the yogurt and whatever everyone else wanted and we settled down to eat. The yogurt container felt cold and the yogurt smelled fine. But the shelving unit I took it from had no doors and since the terminal was hot I can only think that it wasn’t as cold as it should have been. I have no other explanation for what happened next.

Kai was getting too big for a standard changing table. At that time, I still used it in the terminal restroom and I braced one of my knees under the table to give it extra support. He did just fine. I had no idea what was coming.

I fed him the yogurt. He was happy. And, in about another 30 minutes, pre-boarding started.

Our plan was to have my husband and Amaya sit in the very first row and have Kai and I sit behind them in the second row. As we walked to the front, with our endless gear, stroller, tablets, blankets, diaper bag, electronic toys and everything that it takes to go anywhere with a child with special needs (it is like moving to go ANYWHERE), I suddenly smelled a poopy diaper. I was torn. If I went to the restroom now and changed him, we wouldn’t be the first to board and our plan for seating would be blown. But if I waited until I got on the plane, I could probably change him really quickly in the bathroom standing up before it got too crowded. Or across the seats in our aisle. I went with plan B. If I had only known.

I was carrying Kai, a big five year old, and I had the diaper bag backpack on my back and my crossbody purse on under that. My husband had our daughter and ALL of the other stuff (remember, it’s like moving). We walked down the tunnel to board the plane, stepped on and all of a sudden, the smell intensified. I realized that this was not a normal event right at that moment. As everyone was about to board the plane.

I ASKED FOR HELP. The nicest flight attendant in the world told me that they do, in fact, have changing tables in the bathrooms on airplanes. They do? I had never seen it before. She brought me into the bathroom (remember, holding five year old on the front, huge backpack on the back, purse underneath) and showed me that, indeed, a changing table could be pulled out from the side and extended over the toilet seat. Who knew?

Of course, Kai didn’t fit. He was five. Most five year-olds are long out of diapers. But, given the very tight space to work in, I somehow twisted him into a pretzel and got him on it. Kai is generally a happy guy, so he just smiled away. The best flight attendant in the world smiled and tried to close the door to give us privacy. It wouldn’t close. Not with all of our gear.

So, we were at the very front of the plane, right where boarding was commencing. People are walking right by our open bathroom door. And I am singing to my son, trying to keep him calm. And changing him.

The yogurt was bad. Kai had diarrhea the likes of which I had never seen before. It was all over his front, all over his back. His clothes were absolutely gross. Did I have a change of clothes? Are you kidding me? Several.

I asked the best flight attendant in the world for a trash bag. The smell was filling the cabin. People were walking past us, wrinkling their noses and commenting on it. After the best flight attendant in the world brought me a huge trash bag, she did something that I have never seen a flight attendant do, before or since. She OPENED THE OPPOSITE DOOR to where people were boarding. To create a cross breeze. For the smell.

I threw out Kai’s entire outfit (there was no way to save it in the condition it was in), did magic tricks and contortionist moves to clean him up, went through almost an entire package of wipes (of course I had more!) and, finally, got him changed.

Somehow, during all of this, my husband and daughter had gotten the first row seats but had failed to save the ones behind them (possibly due to all of the other stuff my husband was managing). Kai and I ended up about ten rows back. I got him into the window seat, sat in the middle seat next to him and got organized. It still smelled and people were still talking. Kai was still happy, babbling and rocking and playing with his tablet. I was EXHAUSTED.

It was then that I realized that his blanket, his favorite thing in the world, that he absolutely had to have, was ten rows ahead of us with his daddy. I couldn’t leave to get it and I couldn’t call my husband because phones were turned off. So I pressed the call button and a flight attendant came (we’ll call her the OTHER best flight attendant in the world). I explained the situation, and asked if she could possibly walk up ten rows and ask Kai’s daddy for his green and white blanket. She gave me a big smile and took off. Later, my husband said when she approached, she announced, “I’m looking for Kai’s Daddy. Kai needs his blanket.”

Well, we made it. I introduced Kai and myself to the people in front of us and behind us and explained what could possibly happen if Kai stimmed or kicked and asked them to please let me know if he disturbed them. I would try to do everything possible to fix it. They were lovely and said nothing but nice things during and after the flight. And Kai was of course happy, but he sure wasn’t quiet or still. Kind folks.

Did this experience suck? Yes, it did. But it doesn’t keep me from traveling with my son. And it shouldn’t keep you and your child with special needs from traveling either. Here’s why.

It is simply your turn. You know all of the times where it was someone else’s turn? When the baby screamed and cried on your flight and you were patient? When someone was ill on your bus and you kindly endured? Why do they get a chance to travel and possibly disturb others but not you?

They took their turns. And you get to take yours.

Most likely scenario? You won’t have to deal with what I went through. But if you are not up for the adventure (because it WILL be an adventure), just say no. Maybe not forever but for now. You know your limits and your child’s limits. Just remember, your child might surprise you and do well! If you are going to go for it, here’s how to prepare for the trip:

1. Envision every possible scenario that you are worried about. Really dig deep down and imagine your fears. Write them down. And then prepare for them the best you can. Pack accordingly.
2. Pack EXTRA of everything!
3. Speaking of packing, make a packing list for each individual traveling. Ask someone familiar with your child to review the list and see if they can think of anything that you forgot.
4. I have never done this but I read about it and it is brilliant. Someone who traveled with their special needs child printed up notes explaining the situation and put them inside little bags of chocolates. She then passed them out to everyone around them on a flight. I LOVE this idea! It starts the whole trip with some good will. I have no idea who to give credit to for this, but it is an awesome idea!
5. If you are able, bring another adult to help!
6. Identify yourself to the staff. Even if your child obviously has special needs, make friends right at the beginning. Their help can be invaluable.
7. Schedule down time both before and after the flight, bus trip, whatever. You are going to need it and it is better to under-schedule and be spontaneous than to overschedule and feel pressed for time.
8. Expect the unexpected. Yup, after successful traveling in the past, it happened to me! But remember EVERYONE gets their turn. It is just your turn and your child’s turn when it comes to the unexpected during travel. I know it is easier to stay home. But don’t move from fear. Prepare and go for it!

Have I traveled since this incident with my son? You bet I have! Kai has continued to do well during travel, showing this to be an isolated incident.

And, no, I will never buy Greek yogurt at the airport again.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!

Have you seen the awesome Shriner’s hospital commercial starring Kaleb? It melts my heart every single time. If you haven’t seen it or just want to enjoy it once again, here is the link:

What did you see when you watched it? Kaleb, of course, is the shining star. But when I watch it, I always seem to look past him. I see a mother who is a caregiver for a special needs child. She is perfectly groomed, hair and makeup done, beautifully dressed before she even wakes him for the day. I see a beautiful home, clean and well organized. I see his Mom lift and transfer Kaleb to his wheelchair, and again to his seat in the car (which looks expensive and freshly washed). She does so with ease and strength. And she is INCREDIBLE. She is cheerful. She is calm. She is EVERYTHING THAT I WANT TO BE (Yes, I know it is a commercial. But still.).

And then I look around my own home. On any given day there are loads of laundry in some part of the cleaning process. It is “clean enough,” if I can manage it. My children are bathed, fed and dressed in clean clothes but I wouldn’t say they had Kaleb’s neat haircut or spiffy sense of clothing style. My son’s wheelchair is sitting right smack in the middle of the living room because I needed space and haven’t put it back in the van yet. I don’t remember the last time I washed the van. There are shoes, toys, books, technology, blankets and more scattered around. It certainly isn’t what you would call neat.

But you know what is exactly the same? Kaleb’s smile and my son’s. Both beautiful, joyful, breathtaking.

I have to ask, who is this incredible woman? This model of everything I want to be in the background of the commercial? How do I get to be her? How did SHE get to be her?

I wanted to learn more about her. So I found this video. They won’t let me put a link here, but you can copy and paste it into your browser. Then go to this page and scroll down and watch Kaleb’s story: lovetotherescue.org/no-small-wonder/

Osteogenesis Imperfecta. Brittle bone disease. Kaleb has broken bones almost 200 times. And, on the second video, I feel like I really see his Mom. His caregiver. And I know, once again, that a slice of life is just that. Tears in her eyes. Beautifully groomed but maybe tired this time. Showing that her love for him is so strong but that the journey can be challenging. NOW I feel like maybe she and I have something in common.

Everyone has their good and bad days. And no one lives in a commercial. I admire her so much. And, I remember that we are all human.

So I remember to cheer on people’s strengths and support people’s struggles. And that what I see is certainly not the whole story.

You are OK. Don’t compare your whole life to someone else’s slice of life. You are more than enough.

WANT MORE? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!