For my 7-year-old daughter, the December holidays — with all its bells and lights and shiny décor and, especially travel plans — are a dream come true, but also a nightmare.
Maggie has Rett Syndrome and sensory processing disorder. At two and a half, music playing in the background seemed like it burned her ears. If we walked into a store, restaurant, or anywhere music was playing, she would scream.
At 3, walking into a room with too much clutter would impede her ability to walk.
At 4, crowds became too much. She would melt down.
At 5, airports and travel became intolerable. We had to give her anti-anxiety medications the doctors prescribed to be able to visit family. The side effects of the drugs were often worse than the sensory processing disorder itself.
At 6, we don’t leave the house without her backpack of essentials. The gear that we need and have used is plentiful.
Trips across the country have ranged from manageable to earth-shatteringly horrible with vows of never traveling again: Crying, screaming, full-on panic attacks It’s a lot to handle for a little kid. It’s heartbreaking as her parents.
Travel isn’t easy but we have learned to adapt and accept. My husband, AJ, and I work well as a team. Our daughter, Maggie, is the most calm when she is with her daddy. She sits next to him, he sings to her and all his attention is focused on her. My job is to take care of our almost 2-year-old son and also to make sure AJ has everything he needs to succeed.
When we travel, one of our biggest obstacles is sensory overload, which leads to anxiety, extreme meltdowns, breathing issues, uncontrollable stemming and a nervous tummy.
Her sensory gear bag includes everything but the kitchen sink. There are earplugs to mute sound. Cordless headphones to use for music and with the iPad for entertainment. A comfy change of clothes because nobody needs a meltdown because of an itchy tag. Stretchy sensory swing to give her body soothing input, yes we pack a type of hammock swing. Arm braces to control her stemming and hand braces to calm her hand-wringing.
Calming medications have been tough, but we have finally found the right one. Tylenol for pain and discomfort. Lastly, of course snacks and drinks to avoid typical hunger meltdowns, and ear pressure. Not to mention, her emergency seizure medication, just in case an uncontrollable seizure decides to happen during flight. As long as we have all of these items, we are prepared.
We have figured out how to make traveling as uneventful as possible. We know there could be screaming at the airport, so we look for airlines that accommodate kids with sensory issues. A Delta agent once gave us a private conference room, because she saw Maggie was in distress and needed her own space.
We also make sure to book seats with extra legroom. She can’t control her legs very well. There are sudden movements, which lead to kicking the seat in front of her. With extra legroom, we are usually safe, but we always talk to the passengers around us before we take off. They are usually empathetic and understanding, and we are grateful for that.
The most important part of our travel is to make sure we all stay calm. This isn’t easy. I’m starting to think our family motto is: Just survive and laugh it off when we land.