I have a friend, a single mom, who just took a 45 day trip across the United States via train with her six-year-old daughter. They departed from Texas heading for California, Arizona, Colorado, Chicago, Washington D.C., Georgia, South Carolina, and Florida. I'm sure I'm leaving out a few stops in-between, but you get the general idea. Of course I am immensely envious of her ability to travel light and see a good portion of our beautiful country. Would I do the same thing if I could? I don't know about the train...but taking my time traveling across the United States...definitely.
I love to travel...period. I am however, a wanna-be first-class traveler. I am very picky about where I lay my head. I usually like to bring my own pillow and sometimes my own blanket. My girlfriends laugh at me for bringing my own pillow to a brand new Westin hotel or on a short weekend trip. They may have nice pillows, but they don't have MY pillow. I'm a bit like Linus with his blanket. I like a clean space and high thread-count, soft sheets. I would prefer sleeping with a down comforter. Yes...I am high maintenance, but I can adapt if I have to.
When you are traveling with children...you HAVE to be adaptable, especially when you're traveling with children like mine. As I write this, I am suddenly aware of why my children are so high- maintenance. The apple doesn't fall far... The difference is, I wasn't like this as a child. I was thrilled to go where ever my parents took me, which was usually to visit relatives, not fancy hotels. We also did camping trips in a big R.V. that we rented along with 2 other families. Talk about having to be flexible! I have just become a spoiled adult. I am perfectly willing to stay with relatives and sleep where ever they can house me. I may need a sleeping pill...but I can do it. The other major difference between me and my children is...I do not have over the top anxiety and autism.
Blue likes to sleep alone in a very quiet, controlled environment. He listens to soft music while he is sleeping, but he absolutely can not stand listening to someone snoring, or even breathing too heavy. Forget about there being a chance of thunderstorms that could wake him up suddenly.
Once we traveled to his grandparents home in Georgia for Christmas. His anxiety wasn't as high then as it is now. But, he still wanted to sleep by himself if at all possible. We had three families in a small 3 bedroom house mind you. He ended up sleeping on the floor in the office/laundry room. He was perfectly content.
When he travels with us...we have to get a suite or 2 rooms. There must be a door that he can close to block out the sound of his father snoring. If he is going to have to sleep in a room WITH someone, he must be well prepared ahead of time and then decide weather or not he actually wants to take the trip. Two years ago we went to Florida where we rented a townhouse with 3 levels that we shared with his grandparents. He and his brother would have their own room directly across from the bedroom his dad and I shared. Blue chose to sleep alone on the couch on the middle level, rather than sleep in a full-size bed next to his brother.
On our most recent trip, he starts off unhappy because we are leaving in the evening instead of the morning. "Why are we leaving so late? This doesn't make any sense!"
We were not scheduled to arrive at our final destination until 1 a.m. Of course, the airline holds us hostage on the runway for awhile and then returns to the gate for mechanical issues, which delays us even further. There is fighting from across the isles because his brother is biting his nails. Wouldn't it be easy to simply turn your head and not look at him? No. We need to control him. We need to give him nasty glances and stares. And he must return the favor by biting his nails even more and looking at his brother while doing so.
Blue's anxiety is palpable. It takes him a couple of days to get his bearings in our new location. He gets angry with me for the smallest infraction (and by infraction I mean everything that isn't perfect is my fault). He wants to unpack and set up his space as soon as possible. He is angry that there is no fan in the bathroom. This means there is no aeration in-between visitors who use it. He must be well rested. Changes in schedule, staying out and up late make him terribly cranky and on edge.
We venture to Washington D.C. to visit a couple of the Smithsonian Museums. We drive into Carollton, Maryland where we catch a train into D.C. just for the experience of riding a subway train. When we arrive on the Smithsonian grounds, we are given a map of all of the sights that you can visit. All along my intention is to first go to the museum of Natural History. Of course, there is much discussion about why we should go there first.
We go through the museum and see the amazing dinosaurs and such. Feet are tired, thirst is never quite quenched the entire time we are in the humidity. As we are winding down from our first museum, Blue becomes extremely frustrated with the map. "There is no list! I just want a simple list that tells you about each museum!" Well I'm so sorry that I can not completely redesign the way they made this map. Frustration sets in. He attempts to storm off into the crowd. I stop him. Sorry dude...I can't allow you to get lost or stolen. I am sorry you're so frustrated.
I ask Dad to take him away from the crowd where he can cool down. I can't do it. Nothing I say is right, it just makes him more angry. Dad takes him out into the entry way, where they find a proper book that describes each of the museums. Mind you -this changes nothing. The plan all along is that we will move on to the Air and Space museum, because Red has a fixation on airplanes, flight and aviation right now. This is exactly what we do once Blue gets his head together and calms down. In his mind...the fact that he now has a proper list, changes everything. He can now move on.
This is an extremely long day of walking. The most treacherous part is walking from one museum to the next in the heat and humidity. We enjoy the air conditioned museums and the displays of our country's history, but it's exhausting. I find myself constantly sneaking away, finding a seat, pulling out my phone to read Twitter updates (pathetic...I know. My name is Karen and I am a social network addict). I couldn't help but think, I'd rather be looking at art than airplanes, but that's a sacrifice you make for your male children who love technology and machinery. If I want to do the art museums, I will have to go back another time either alone or with a more flexible entourage.
After the last museum closes at 7:30 p.m., we venture out to find something to eat. We take an open air pedi-taxi over to 7th Avenue where there are a number of eateries. The pedi-taxi takes us right past the capital building, down Pennsylvania Avenue...the same route I recognize from President Obama's Inauguration Day. I remember he and Michelle getting out and walking and me thinking, "Are you kidding me? Get your butts back in that car before someone shoots you!" Of course, the Secret Service was way ahead of me.
We exit the open air taxi's. Where are we going to eat? Both boys, though they are not paying, want to choose. Their grandmother is with us on this journey. She is the senior member of the family. It will be her choice. When you are with a group, sometimes you have to go where the majority wants to go (or where your grandmother wants to go). You have to be a little flexible. Well...what's that to a kid with Aspergers and anxiety? Add together being, tired + hungry + off schedule...then throw in the variable of your mother saying, "Neither of you is choosing the restaurant." The sum? I am met with growls, grunts and storming off into a sea of people on a busy street. When I catch up with Blue he says, "I am getting so tired of you!" Wow! I guess he told me.
We get into the restaurant, he pouts and isn't willing to look at the menu. He says, "I need some time to be alone." I gladly let him have it. He returns, and orders a delectable meal that he fully enjoys, which includes a Cesar salad. I am so excited that he now likes salad!
On our way back to the hotel that night, Blue mentions our friends who took the cross country trip on the train. "They are so lucky," he says.
"Yes they are lucky and flexible. It takes a lot of flexibility to sleep in various places, sit on a train for hours, and not always be on an exact schedule," I retort.
I am hopeful that with time and maturity, we will get there. Meanwhile, the next trip I take will be by myself! I feel the need for a spiritual journey to recuperate from our family vacation.
Please click below before you go! Thank you!
I love to travel...period. I am however, a wanna-be first-class traveler. I am very picky about where I lay my head. I usually like to bring my own pillow and sometimes my own blanket. My girlfriends laugh at me for bringing my own pillow to a brand new Westin hotel or on a short weekend trip. They may have nice pillows, but they don't have MY pillow. I'm a bit like Linus with his blanket. I like a clean space and high thread-count, soft sheets. I would prefer sleeping with a down comforter. Yes...I am high maintenance, but I can adapt if I have to.
When you are traveling with children...you HAVE to be adaptable, especially when you're traveling with children like mine. As I write this, I am suddenly aware of why my children are so high- maintenance. The apple doesn't fall far... The difference is, I wasn't like this as a child. I was thrilled to go where ever my parents took me, which was usually to visit relatives, not fancy hotels. We also did camping trips in a big R.V. that we rented along with 2 other families. Talk about having to be flexible! I have just become a spoiled adult. I am perfectly willing to stay with relatives and sleep where ever they can house me. I may need a sleeping pill...but I can do it. The other major difference between me and my children is...I do not have over the top anxiety and autism.
Blue likes to sleep alone in a very quiet, controlled environment. He listens to soft music while he is sleeping, but he absolutely can not stand listening to someone snoring, or even breathing too heavy. Forget about there being a chance of thunderstorms that could wake him up suddenly.
Once we traveled to his grandparents home in Georgia for Christmas. His anxiety wasn't as high then as it is now. But, he still wanted to sleep by himself if at all possible. We had three families in a small 3 bedroom house mind you. He ended up sleeping on the floor in the office/laundry room. He was perfectly content.
When he travels with us...we have to get a suite or 2 rooms. There must be a door that he can close to block out the sound of his father snoring. If he is going to have to sleep in a room WITH someone, he must be well prepared ahead of time and then decide weather or not he actually wants to take the trip. Two years ago we went to Florida where we rented a townhouse with 3 levels that we shared with his grandparents. He and his brother would have their own room directly across from the bedroom his dad and I shared. Blue chose to sleep alone on the couch on the middle level, rather than sleep in a full-size bed next to his brother.
On our most recent trip, he starts off unhappy because we are leaving in the evening instead of the morning. "Why are we leaving so late? This doesn't make any sense!"
We were not scheduled to arrive at our final destination until 1 a.m. Of course, the airline holds us hostage on the runway for awhile and then returns to the gate for mechanical issues, which delays us even further. There is fighting from across the isles because his brother is biting his nails. Wouldn't it be easy to simply turn your head and not look at him? No. We need to control him. We need to give him nasty glances and stares. And he must return the favor by biting his nails even more and looking at his brother while doing so.
Blue's anxiety is palpable. It takes him a couple of days to get his bearings in our new location. He gets angry with me for the smallest infraction (and by infraction I mean everything that isn't perfect is my fault). He wants to unpack and set up his space as soon as possible. He is angry that there is no fan in the bathroom. This means there is no aeration in-between visitors who use it. He must be well rested. Changes in schedule, staying out and up late make him terribly cranky and on edge.
We venture to Washington D.C. to visit a couple of the Smithsonian Museums. We drive into Carollton, Maryland where we catch a train into D.C. just for the experience of riding a subway train. When we arrive on the Smithsonian grounds, we are given a map of all of the sights that you can visit. All along my intention is to first go to the museum of Natural History. Of course, there is much discussion about why we should go there first.
We go through the museum and see the amazing dinosaurs and such. Feet are tired, thirst is never quite quenched the entire time we are in the humidity. As we are winding down from our first museum, Blue becomes extremely frustrated with the map. "There is no list! I just want a simple list that tells you about each museum!" Well I'm so sorry that I can not completely redesign the way they made this map. Frustration sets in. He attempts to storm off into the crowd. I stop him. Sorry dude...I can't allow you to get lost or stolen. I am sorry you're so frustrated.
I ask Dad to take him away from the crowd where he can cool down. I can't do it. Nothing I say is right, it just makes him more angry. Dad takes him out into the entry way, where they find a proper book that describes each of the museums. Mind you -this changes nothing. The plan all along is that we will move on to the Air and Space museum, because Red has a fixation on airplanes, flight and aviation right now. This is exactly what we do once Blue gets his head together and calms down. In his mind...the fact that he now has a proper list, changes everything. He can now move on.
We exit the open air taxi's. Where are we going to eat? Both boys, though they are not paying, want to choose. Their grandmother is with us on this journey. She is the senior member of the family. It will be her choice. When you are with a group, sometimes you have to go where the majority wants to go (or where your grandmother wants to go). You have to be a little flexible. Well...what's that to a kid with Aspergers and anxiety? Add together being, tired + hungry + off schedule...then throw in the variable of your mother saying, "Neither of you is choosing the restaurant." The sum? I am met with growls, grunts and storming off into a sea of people on a busy street. When I catch up with Blue he says, "I am getting so tired of you!" Wow! I guess he told me.
We get into the restaurant, he pouts and isn't willing to look at the menu. He says, "I need some time to be alone." I gladly let him have it. He returns, and orders a delectable meal that he fully enjoys, which includes a Cesar salad. I am so excited that he now likes salad!
On our way back to the hotel that night, Blue mentions our friends who took the cross country trip on the train. "They are so lucky," he says.
"Yes they are lucky and flexible. It takes a lot of flexibility to sleep in various places, sit on a train for hours, and not always be on an exact schedule," I retort.
I am hopeful that with time and maturity, we will get there. Meanwhile, the next trip I take will be by myself! I feel the need for a spiritual journey to recuperate from our family vacation.
Please click below before you go! Thank you!
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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.
diyalabs6192603 11p · 192 weeks ago
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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