“You can do it again,” said my friend, shifting her briefcase from one hand to the other at the doorway. I am sitting waiting for Adam to finish his O.T. session. She is also an occupational therapist who worked with Adam for several years, but I regard her as a friend since I’ve known her for so long. I suddenly felt a quiver inside my belly, a sick feeling. I realized, as I heard Adam laughing in the next room, that I longed to go back as much as I long to hear that laughter. When I travel, I long to be back with Adam. Later at home, I found myself googling “mother’s guilt over taking vacations.”

I’m pretty good at dealing with mother-guilt, that is, I can put things in perspective. Adam’s father and I discussed Adam going to Disney with him to break up the time I was going to be away. On the one hand, I was a bit sad that I wasn’t able to see Adam’s reactions to his first visit, yet on the other, I did not want to deprive Adam of the opportunity. I have to be honest — it, in part, appeased my guilt and anxiety over leaving him. While I was away, I was so happy to see beaming pictures of Adam there. Apparently Adam had some difficulty adjusting to the hotel room, but he loved the rides. It is but one of the issues arising from moving houses especially since the divorce — Adam’s issues with his environments really started at this time.

While at a place called Ulpotha in Sri Lanka, there were two European children running around. They had arrived after a visit to Israel, where their mother was from. Ulpotha is a yoga retreat in the jungle run by the villagers. The parents were hired to manage the guests for six weeks (Ulpotha is only open to the public for a small part of the year). I watched the children play freely, despite the poisonous snakes and other creatures. They were having a ball and socialized with the guests. I had wished and wondered about whether Adam could make the trip. What would living with monkeys and villagers who take care of this self-sustaining village be able to provide for him, I thought?

I can’t say that I wasn’t having some “the rice patty is greener on the other side” moments. What would getting away from the pressures and superficialities of Western life teach Adam? What would cultivating food and housing and belonging to a community provide for us? I kept thinking of the isolated box we live in back home, and how neighbours rarely talk to each other, and felt dismayed. What kind of community do we really have, I ask myself as an adult who in part continues to perpetuate the kind of city I live in. While we have our conveniences, I believe all of us feel this lack. I kept wondering about my own ability to live in such circumstances and felt in awe of Rupert Isaccson, the author of Horseboy, who traveled all the way to Mongolia with his autistic son, Rowan.

I did have moments of longing for Adam more when I saw the children, as much as I knew that I deserved and needed my time away. When one of the parent’s asked why I didn’t bring Adam, I didn’t want to get into a lengthy explanation about parent schedules or how such a short trip would make it difficult to travel with him as an autistic person. Traveling across the globe with him would require more practice on longer flights, breaking up the journey and longer stays in each location. The diet is different too, so it would take a lot of preparation.

So I guess there a are a couple of issues here: imagining some future travel with Adam in order to expand our experience, and feeling guilty or even guilty for not feeling guilty. Perhaps there are so many lessons for me to learn for myself and the way I live, and in my efforts to create a meaninful life with Adam.

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I have serious jet lag. I returned on Saturday, after supper time. It was a journey of thirty hours. The route home was Colombo-Bankok-Beijing-Toronto. On the last day, I realized I caught my first Sri Lankan cold and I suffered all the way home, making the thirty hours feel like sixty. Seriously, you can’t tell the difference after the first twenty-four.

I returned home to my cherub. Adam was waiting for me and the transition from his father back to my home was a happy one. I was worried the little guy would be pissed with me for being gone twelve days. The opposite was true. I tried to avoid making face-to-face contact with Adam, since I had come down with a serious sniffle, muted by a continuous in-flight feed of Contact C. He would have none of that. Adam grabbed my face, our round fleshy cheeks squished together, and he continued to kiss mine all over. Ah well.

We are happily reunited and I am on the mend. I woke at midnight tonight and forced myself to say in bed until three this morning. There is a wisp of white snow on the ground and I gather today will be another gray one. I am recalling all the sights and sounds of my trip, especially the warm light and emerald colour of rice patty fields.

I will send my cherub off to school in a bit. Later, I will hopefully find some words and sentences that do justice to my first trip to Asia. In twelve whril-wind days, major flight time, and time zone changes, I still feel silenced by overwhelming differences. My experience is still blend of flickering images and sensory recollections. As I blend back into my daily life here, I realize it will take me a few more days to articulate what I’ve experienced. I know full well that I’ve only taken a small sip of the land of Serendib.

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As a single mom, I have a life with Adam and a life without. We are building a new life over the crumbled mortar of the last one, and often, that makes for beautiful design.

One realization I had after so much stress is that it is more important to be a happy parent of our children. Not only do I have to run Adam’s programs and team, but I think he’ll remember most the times when I was quiet with him on his bed reading books together, or we made jokes and laughed together. When I’m relaxed and fulfilled in my life, I find I have much more to give to Adam.

So I travel when Adam is with his dad, almost guilt-free. I sure do miss Adam when I’m away, but I also love being on my own again too. I also want to travel with Adam as part of my plan for writing and for building our family life. I need to travel to get new ideas and see life differently, and I believe children benefit too. I know that many parents hesitate traveling afar with their autistic children, and you can count me in. I’m worried about the flight, delays. A good plan is in the making.

Changing environments seems at odds for the autistic child who seems to need routine. Yet, Adam has also enjoys changes in environment. He tends to talk more when there is a change. So it’s a bit of a paradox. It’s the accommodations that bother him for the first few days which I have to think about in advance. I am trying to figure out how to make him feel more at ease when he’s in other people’s houses or when we are in hotels.

My idea? I’m thinking of renting a place in Europe that we can treat as our home base, invite friends, and take day trips. This is what I imagine:

I rent that villa in Italy I always dreamed of and bring Adam with me. We walk the Palazzo in Firenze, eating fast-melting gelato on a hot Italian day as hundreds of pigeons scatter, the quick flutter of their wings providing a light breeze against our glistening skin. Adam gleefully watches their flapping wings in unison.

We find a cafe off the main square at noon, the cathedral bells asking us to rest. He loves the spicy salami sweating in the yellow ochre sunlight and gathers whole pieces in his hands to take a bite. The ripe plum tomatoes burst in our mouths. As we lean back in our chairs content, the sound of footsteps and voices swell and dim as stylish men and women pass by easily on uneven cobblestones. I order a cappuccino and Adam eagerly spoons off the foam. Then, we walk across the square to the Uffizi and oogle the Birth of Venus and her flowing blonde hair. The long corridor leads to the next room, our feet echoing along. Children’s voices whine to go home or to the bathroom in foreign languages and parents say shoosh. I tilt my head sweetly at Fra Fillipo Lippi’s Madonna with Child and Angels. Then, I crouch down, and give my own growing angel a kiss.

Every reality begins with a dream. I have many and they all, even when I’m on my own, include Adam.

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I was very excited when Pascal Cheng told me that Larry Bissonnette and he, both of whom I brought to Toronto several years ago, and Tracy Thresher were traveling the world to change views about autism. They travel to Finland, Japan and Sri Lanka to change minds, attitudes and debunk myths which was documented in the film Wretches and Jabberers. We have learned from anthropologists like Roy Grinker in Unstrange Minds, among others, that the views about autism around the world can be less forgiving because of cultural differences.

 Adam was diagnosed at 19 months of age as a hyperlexic, “high-functioning” autistic boy. Over the years, however, he shows ability, is very bright and intelligent, but Adam has real communication difficulties and more “classic” aspects of autism…so dx is always precarious in the early years. I think of the very different experiences between Adam and Larry — how the world has changed so for autistic people and I am grateful for the generousity of autistic adults. 

As a parent in this for just over six years now, I have to say thank you to everyone who put forth this effort. I often dream of Adam traveling the world, talking to other people, helping other people. That’s my dream, I suppose, and not necessarily his, but that’s what parents tend to do. So even if Adam chooses another path,  I am thrilled that Larry and Tracy are forging a path for all the “Adams” who will grow up very soon.

“We are more like you than not,” says Larry in the following trailer.

That’s for certain.

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The kind of transitions that have been happening such as moving into a new home during a divorced situation is not fun for any child. Adam had his moments of extreme anxiety. In fact, it went on from the late fall until late February. A long stretch like that made me wonder if I’d ever see him smile again. Even though I knew it deep down in my heart, I did experience those moments of absolute panic.

Being in the south with Adam reminds me how anchored he is to me; how much he needs and wants me, not to mention how much he wants to see his mother smile. Watching how much he reciprocates, plays with me, wants to go everywhere with me, and talks (yes talks — he is very verbal down here this trip), is testament to the need for quality time spent with mom doing easy things. It’s also proof to me that I have to work on my own happiness and spend time doing the things I need to do to nurture it because I am not just doing it for myself. It has taken me two years to begin to realize this.

During that transition from fall to late February, there were days when he was so stressed that Adam didn’t even seem like Adam anymore. If I were a parent who would use this kind of lingo (which of course many of you know I am not), it may have seemed like “he wasn’t even in the room,” (which we know that of course autistic people are aware despite what others think of their behaviour, but this seemed like the appearance of a what Kristina Chew has coined the “neurological storm,” and I like that expression very much in terms of describing what these moments are like). For others who distill autism into that robot-type of cold person, Adam may have appeared “distant” — that we were “losing” him. He had lost all of his words, even. For Adam in particular, who is very affable and connected to people he knows well, this was a stark contrast. Yet, maybe mom was similar. Maybe it seemed like mom wasn’t really in the room anymore as I was trying to find the ground beneath my feet again after separation. I wonder how I may have appeared to my son.

Here, happy, relaxed and spending all of our time together, Adam has spoken the following:

Scenario 1: Browsing through a Payless Shoe Store looking straight at us: “Are you done yet?” Now for a parent with a more verbal child, this might seem like a nagging comment. For a parent with a child with few phrases, we were so happy, laughing hysterically!

Scenario 2: Getting ready to go but mom is trying to find her keys: “Let’s go, let’s go! Time to go, mom!!!”

Scenario 3: As he is doing something contentedly and I am trying to rush him out the front door: “Be patient with me.”

Scenario 4: After swimming and tugging on a wet bathing suit: “It hurts me.”

There are many more phrases coming out of his mouth down here in South Florida. He is not speaking in paragraphs, but such sentences are really nice surprises that this mom obviously doesn’t take for granted. Of course, Adam also has lots of physical activity down here. For a child like Adam who always needs to move around, a full day of swimming, running on the beach, climbing and swinging at the park, and going for long walks all seem to be another key to organizing that precious neurological system of his. Mind you, I’m not sure how to replicate the extent of this — the sheer quantity of exercise back in Toronto. Yet it’s another clue into how Adam needs to organize his neurology and attests to the things that make him feel happy and calm.

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We’ve had great flights and not-so-great-flights. I can never predict or prepare enough. I have learned from Adam to give ourselves plenty of time, to pack his bag with his favorite toys, foods, and DVD’s. I generally know that early morning flights seem to be easier than mid-to-late afternoon flights, although like everything, there are exceptions to that rule. Adam can be happy and calm as I “work” the flight with him. As a parent of an autistic child, I have learned to stay on top of Adam’s needs before any anxiety is triggered, for once triggered, it can be difficult to calm down. So as a parent, I don’t get to read the paper or a good book when I’m on a flight with Adam, but I still believe the effort is worth it. Travel, like autism and life, is a journey we cannot perfect. We cannot always predict how bumpy the flight may be. We can’t predict delays that are a normal part of travel. We can’t predict the mood our child might be in as much as we cannot predict our own. We can, however, try to prepare ourselves and do our best to keep calm in challenging circumstances.

I’m talking about travel because not only do I thrive on it myself, but as a single mom I look forward to exploring the world with my autistic son. We’ve been to Alaska, we’ve been to the U.S. and the Caribbean. I am looking forward to taking Adam to Italy where I have a feeling he will love it for the sights, the gentle sounds of a murmuring town square, the Gelato, tomatoes and salami — not to to mention the flocks of pigeons he can chase and the magnificent art. It’s my dream to take Adam abroad. But it’s not my dream to endure a difficult flight. It’s my problem, I know. I don’t like to see Adam suffer. I think I have to just get things organized (like rent one place and make it our “home base” for several weeks). I am admittedly tentative about the overnight flight to Europe. Everyone tells me that this should be the easiest because children “can sleep on an overnight flight.” They don’t know my Adam. I remember that twelve-hour day from Alaska back to Toronto where Adam was beside himself. We learned that Gravol didn’t put him to sleep as it sometimes does for other children. I’ve learned that Chlorohydrate doesn’t settle Adam before an EEG. I’ve learned that Melatonin won’t relax him on a flight, either. Adam, my Adam, is my prize-fighter. If Adam is anxious and does not want to sleep, giving him sedatives may have the opposite effect. He may metabolize medication differently. Or, he just too anxious, period.

I will eventually book that trip to Italy at some point, deal with my fears and see what happens. I think I’m a well-prepared mom and it’s the times when I’m most prepared that I find easiest for both Adam and I. I’ve found some good suggestions on traveling with the autistic child (see below) that others may find useful and I’ve employed about all of these strategies. But I’ve not yet traveled afar with the little one and I notice that no one else has written a thing on the Transatlantic flight and the autistic child. I assume (hope, really) that some autistic adults may have some suggestions on helping a prize sleep-fighter enjoy his mid-air travels. Like so much information we seek as parents of autistic children, there simply isn’t enough to support us on our travels in life and abroad.

Travel Tip Sites:
Autism Family Travel
Coping With Autism (on Vacation)
How To Prepare For Traveling With A Child With Autism
Caring for Kids — Air Travel

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