Going on vacation is a wonderful thing. Anytime you have the privilege of getting away from day to day life to see something different in the world should be a cause for celebration and hopefully, an opportunity for relaxation.
In my life, however there are a lot of ironies. Things that other people celebrate and enjoy can be complicated for me. In fact, many things that average families would normally celebrate, can be an additional source of stress and anxiety for an autism family. If you are a parent of a child with any kind of special needs, you know exactly what I’m talking about.
In my life, however there are a lot of ironies. Things that other people celebrate and enjoy can be complicated for me. In fact, many things that average families would normally celebrate, can be an additional source of stress and anxiety for an autism family. If you are a parent of a child with any kind of special needs, you know exactly what I’m talking about.
Over the years of raising these children, travel has been a dual between fun and overwhelming. There are so many details to put into place before I can think about going anywhere with or without my children. I also have to add my mom to the mix since she has lived with us for the past eight years.
Before I can travel, I have to make sure that everyone will be taken care of while I’m away. This means arranging for most of the things that I do for them, to be done by someone else. All bases must be covered. Oh yes! Let's not forget about Harry, our dog. I don't like to put him in a kennel. He is used to having someone to sit next to. He's a lap dog. And, Yes. I am a spoiler of all of my children.
Before I can travel, I have to make sure that everyone will be taken care of while I’m away. This means arranging for most of the things that I do for them, to be done by someone else. All bases must be covered. Oh yes! Let's not forget about Harry, our dog. I don't like to put him in a kennel. He is used to having someone to sit next to. He's a lap dog. And, Yes. I am a spoiler of all of my children.
I have anxiety from years in this autism life. My anxiety is real and at this point and time, requires medication to keep me functioning without taking someone's head off. The thing about authentic anxiety is that it doesn't have to make any sense to anyone else. It's real inside my head and in my physical reaction to stress. I have worried about every single trip that I have planned since my children were born.
Will the plane crash?
I can’t die. They need me!
If I am leaving them at home... did I take care of every last detail before I left?
Did I write all of the operating instructions for whoever is taking over?
Did I write all of the operating instructions for whoever is taking over?
Did I remember the special foods, the wine for my mom, the projects for school that need to be turned in on time?
Did I fill prescriptions?
Did I pack meds?
Does anyone know what to do if I die?
Yes. I have a will. But still…the details of everyday life. The things that only I know. Most of the time, their father didn't even know the name of their teachers, or their doctors.
Is there any wonder when my husband or my friends say, “hey let’s take a trip,” I hesitate?
I hesitated when my husband said let’s go to Italy in 2007. I was dying to go to Italy, but what would we do with the kids for ten days? I had never been away from them for that long. How would I get along with my husband for ten days? Would we kill each other? Would we still be married when we came back home?
I hesitated when my husband said let’s go to Italy in 2007. I was dying to go to Italy, but what would we do with the kids for ten days? I had never been away from them for that long. How would I get along with my husband for ten days? Would we kill each other? Would we still be married when we came back home?
When we planned our trip to France in the summer of 2016, I freaked out. There was a terrorist attack right before we left in Nice. We were going to Nice! Again, what if I die?
I finally settled on, I'm going. I may die on this trip, but at least I will die having seen France. I have just about gotten these boys through to adulthood. I’ve already done a lifetime of work. If it's my time, so be it.
I finally settled on, I'm going. I may die on this trip, but at least I will die having seen France. I have just about gotten these boys through to adulthood. I’ve already done a lifetime of work. If it's my time, so be it.
A couple of weeks ago my husband planned a trip to Las Vegas with my best friend and her husband for my birthday. Spectacular, right? Vegas is one big adult playground. He planned everything perfectly. He bought tickets to the best shows, “Michael Jackson One.” He even bought awesome seats to see Justin Timberlake in concert! We had gorgeous adult dinners at gourmet restaurants and stayed in lovely accommodations.
It's a good thing he planned it because I never would have done it. I would find every excuse not to go. Why? Because of anxiety —that’s why. Like I said, there’s nothing about anxiety that has to make any sense. In my case, it sort of does, because over the years so many things have hit the fan when we traveled.
Hubby works for a global IT Corporation so he goes to Las Vegas every year for his sales conference. Sometimes, he goes twice a year if there is a Regional Meeting there. The first time I joined him in Vegas for one of his business trips, Blue was in the 6th grade. He was still freaked out by thunderstorms back then.
I left on a Friday morning. The sun was shining brightly I felt so happy and free to be getting on an airplane alone. I made arrangements for Blue to spend part of the weekend with one of his best friends. I can't remember where Kendal was, but he wasn't home. My mom was at the house with Blue. When his friend's mom came to pick him up that Friday afternoon, he would not leave the house because of his anxiety. In fact, he ended up spending the entire weekend hiding out in the bathroom because there was a threat of storms.
I left on a Friday morning. The sun was shining brightly I felt so happy and free to be getting on an airplane alone. I made arrangements for Blue to spend part of the weekend with one of his best friends. I can't remember where Kendal was, but he wasn't home. My mom was at the house with Blue. When his friend's mom came to pick him up that Friday afternoon, he would not leave the house because of his anxiety. In fact, he ended up spending the entire weekend hiding out in the bathroom because there was a threat of storms.
How free and easy breezy can one feel knowing that your child is hunkered down, camping in the bathroom with pillows, blankets, music and a fan to drown out the sound possible storms?
This is just one example of the things that play on a highlight reel in my head every time someone talks to me about traveling. My body goes into fight or flight tension from all of the years when things have gone wrong in my absence
This is just one example of the things that play on a highlight reel in my head every time someone talks to me about traveling. My body goes into fight or flight tension from all of the years when things have gone wrong in my absence
I usually work through the anxiety. I go on the trip despite the anxiety, but no one can tell me not to freak out. It’s just like when you tell someone who’s having a meltdown to just “calm down.” Yeah. That goes over perfectly. I am working on getting over some of this with my therapist. Hoever, it takes time. I have a lot of crap to work through.
Our most recent trip was to Washington D.C. We took the entire family (my mom, Blue, me and Alan). Kendal just moved to San Antonio to live with his older brother. Preparing for his move was a whole other source of stress that went in conjunction with the planning of this trip. I won’t even go into the details of that.
Our family trip was a total of five days. We rented a lovely AirBnB, two-bedroom apartment so that my mother would have accessible accommodations. An apartment, as opposed to hotel rooms, would mean a lot of family togetherness. There would be no quick and easy escapes.
We were also meeting my siblings in D.C. to go to the Smithsonian African American History Museum. No pressure, right?
We were also meeting my siblings in D.C. to go to the Smithsonian African American History Museum. No pressure, right?
My peeps |
There are extra details to traveling with my mother. Her arthritic knees keep her from being as mobile as she used to be. Wheelchairs were arranged at the airports to get her on, and between, flights. Sitting all together in a row on the plane where I was smushed in-between my mother and my husband was lots of fun for a woman in peri-menopause.
I reserved a scooter with a medical equipment company in D.C. because of the extensive walking that would be required at the museum. The night before we left, she informs me that she refuses to even try the scooter. It was too late for cancellations, so I ended up paying full-price for the motor-scooter rental, while we got an old crappy wheelchair that was hard as hell to push her around in.
I reserved a scooter with a medical equipment company in D.C. because of the extensive walking that would be required at the museum. The night before we left, she informs me that she refuses to even try the scooter. It was too late for cancellations, so I ended up paying full-price for the motor-scooter rental, while we got an old crappy wheelchair that was hard as hell to push her around in.
Overall, it was a great trip. The museum was powerful and I'm so glad we were all able to see it.
Per my therapist's suggestion, I decided to take one day to get some time to myself. Self-care is pertinent when you need to have extra patience. Years ago, I would never have considered gifting time to myself. I would be too worried about what others would think. I didn’t want to disappoint anyone. Ever. I would just do all of the things whether I wanted to or not.
My mother and my husband were not happy when I told them that I would not accompany them to church and to visit with some of his family. I told them that it wasn’t up for discussion. I know what I need. No one will speak up for me, except me.
My mother and my husband were not happy when I told them that I would not accompany them to church and to visit with some of his family. I told them that it wasn’t up for discussion. I know what I need. No one will speak up for me, except me.
I am “reclaiming my time!” Like Auntie Maxine Waters! The people who were used to me not having boundaries will find themselves disappointed at times. However, they will benefit from the happier person I am after refilling my cup.
I was ecstatic as soon as they all walked out the door.
Here’s the video of my favorite moment of our adventure. I highly recommend taking time for yourself whenever possible.
May self-care and self-love carry you through your stressful situations.
Love,
Karen
May self-care and self-love carry you through your stressful situations.
Love,
Karen
Adelaide Dupont · 285 weeks ago
And for those of us who knew and appreciated these points in high school to a greater or lesser extent - always good to have a refresher and feel them through the current and future generations who we survived to be able to see.
I especially appreciated points 5, 7 and 10.
And young women not settling or settling down yet is a good thing.
"It's never too late to live our dreams" - but it may be too early for some of them!
And 8 of course.
nicole · 243 weeks ago
Risa · 230 weeks ago
LAH · 221 weeks ago
Maira L. Coral · 216 weeks ago
I was looking for information for my Multi-Genre Disability Research Project from my Early Childhood Special Education class on the web, when suddenly I came across your blog. I started reading this out of curiosity and I want to tell you that as you said yourself, you will not be Amanda Gorman, but you managed to make me shed some tears, perhaps because I felt totally identified with your words, especially in the part that you speak of your son. My son also has Asperger's syndrome, he is 19 years old and he is in the second semester of College. Also like yours, he takes classes from home, likewise my eldest daughter is also taking college classes from her room. At the same time, that I work as a preschool teacher from my kitchen through a computer, my husband sleeps in the room during the day because he works at night. Also in the afternoons I myself take virtual school classes. I am a 51-year-old Latin woman who began to learn the English language as adult, so maybe you find some deficiencies in my writing, however, I was very moved by how proud you express yourself about your son. Referent your mother, I liked the humorous tone that you give when your talk about her, so I did not want to miss this opportunity and stopped my assignments for a moment to let you know that your words do make a difference, since they reach the heart of at least those who have opportunity to read you. I want confess you that is the most long I have written to someone I don't know, because your words inspired me, thank you...
Gavin Bollard · 209 weeks ago
Thanks for this post. I've been very distracted of late and so this was how I found out about our friend Kate. Kate's struggles were very real but they were so constant and so wide-ranging that it was difficult for people around her to address them. I think it's going to take a while longer for me to process all this.
I learned so much from Kate because she was always quick to point out the many injustices in the world. In her glory days, she was very much a crusader and she cared for everyone. Over the years, as her situation took its toll, I came to realise that it was the fact that she couldn't be put in a single specific category, that made the system fail her. She needed help that they weren't set up to provide.
She needed more care and she needed to be less alone. I'm so sorry that this has happened.
For a long while we were corresponding almost every day but a couple of months ago, I realised that she had become so stressed that nearly every interaction I had with her was starting to trigger her. I backed away to give her a bit more space. She only had a little time that she could stand to be online and there were too many things that she wanted to do in that time. I thought that by taking a step back, she could reach out to more people who might be geographically closer and able to assist.
Kate was a beautiful soul and she will be sorely missed by all of us.
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Spoil your cat · 122 weeks ago
Many of these living arrangement aren't good, and many of the people who run those places really don't have the residents' best interest at heart. Those places are like old age homes and foster homes, where you sometimes hear horror stories. They're hard to trust. But then there are good ones, of course.
The best thing for an autistic adult is either to go on living at home or working and renting an apartment and living independently, but that isn't always an option.
Duncan · 112 weeks ago