getting out of my way

IMG_1641Six hours at the Dane County Airport waiting for weather to clear in Newark, New Jersey, to take for a short, direct flight is enough to make anyone a bit of a philosopher. That or go nuts. Because I bought this summer’s tickets with credit card points and used the voucher we got in January, I sprung for flying out of our little, low key facility. Lines are short, seats plentiful but there are fewer food choices and what there is comes with NYC prices.

Julia did all her home work and her puzzle exercises and some extra of each. She worked on coloring a new dragon picture in her art app. If her cello had been here, we would have gotten in a good practice. Now, she is listening to music on her phone and watching videos of kids dancing and singing. She has not even cracked the sketch book or dot to dot book. The kid has learned to wait. She is developing patience.

Time to write about impressions of the cruise even though I still have pictures to post.

Julia had a wonderful time on our cruise. The contained space of the ship, albeit a big contained space, gave her some stability. I noticed the last summer as well when we stayed in each Italian city we visited for a week. Julia likes getting to know a place and coming ‘home’ after a day adventuring.

Julia thrived within the framework that the Autism on the Seas staff set up. From the time we went through the boarding process until we left and all the time in between, the AotS volunteers supported us and cheered Julia on. A sighting of orange tee shirts in the distance in a new port of call prompted waving and calling out. Respite times started out in a quiet space but many times a volunteer or two would take a few kids to a movie or show or activity. Julia’s favorite was a visit to the video arcade without me, but with another boy. The boy is younger than Julia but the two of them got along well, and he and his Mom came to see Julia do karaoke on the last night of the cruise. (More about karaoke later.) The AotS person told me later that the two kids played games they could play together or cheered each other on when a game allowed for one at a time. This is a big deal. I never thought of a video arcade like a swimming pool but I think socializing in both places has some similarities.

Julia tried some new activities and really enjoyed activities that she is good at all because of the group. To cheers and accolades, she climbed a climbing wall, went ice skating and ran across a freezing deck to get into a hot tub. She practiced ordering her food in the dining room—pasta with red sauce and fudge chocolate cake were the favorites—and then there was karaoke. Something that I would have never dreamed she would want to do.

I think it was our third night when we passed the bar where kids were singing songs that Julia knew. She wanted to sing that night but I wanted her to watch and figure out the process. The next night she insisted on singing but when I wanted to go up on stage with her as a safety, she absolutely refused. We talked to AofS staff and someone who julia would allow up with her volunteered to go with us. She  sang “All the Single Ladies” and although she fell behind a few times—lots of quick words—she always found the chorus. Having someone to move her ahead when she fell behind was very helpful. The crowd that appeared each night for karaoke was incredibly supportive. When singers fell behind or got lost or didn’t know the tune, the entire room would burst into song and/or clap the rhythms. Julia does not have a great natural voice but she is loud and confident. One of our ministers at church says she always knows when Julia is at a service. Her voice seems to carry effortlessly. She was not shy, seem to have no stage fright at all and she was no where close to the worst singer. That honor went to an older man who sang “My Way.” Twice. Even he got cheers and high fives when he finished. (FYI: in the distant past, before recorded time, I was a professional singer. So, I do judge. I know, not in the karaoke spirit.) Julia sang two additional nights, getting better each time. Someone recorded one of her songs and put it on ship tv. We never saw the broadcast; however, after that people came up to us all the time with congratulations and words of praise. Julia loved it although she didn’t know quite what to say. She had a lot of practice looking at strangers and saying thank you.

There was a karaoke sing off one night on a big venue that was won by a man with a beautiful voice and great performance style. The night after he won, we were back in the little bar singing. After Julia sang, he came up to her and gave her his winning medal, complimenting her singing and her bravery. It was very sweet and Julia has been wearing the metal as often as possible. The AotS staff crowned her ‘karaoke queen.’ She loves that title.

I saw growth in her socializing and independence. It was so very good for her to be doing things without me and with other kids. The AotS staff felt like fun grown ups and she loved their attention. When she is not in school, Julia sees me, her therapists and a few respite providers. Especially this summer, I’ve used respite to get some of her home work done. It has worked well but truth be told, everyone who interfaces with Julia does some kind of work with her. The fun things that she does are always done with me. And she is 16 with some teen impulses. She has not developed friends and when we’ve gotten together with two other girls this summer, it is always in the sight of parents. Appropriately so, but probably hard on a 16 year old spirit. The Autism on the Seas staff gave her a wonderful experience and I am so grateful. Our group had kids and young adults with a variety of needs and from what I saw each child and young adult was supported and celebrated. Many of the families in our group had travelled with AotS before. They were wonderful and I highly recommend them!


How serendipitous that I googled autism & cruise. I wasn’t looking for anything specific but it was an inspired search.

For me, the cruise was a learning experience. As long as we had excursions to experience and activities to do, I was fine. But then, there was the rest of the time.

From observation, our cruise was taken by couples, groups of couples, families and extended families. This may also be true of trips to Italy but there are single people roaming museums and churches and sitting in concert halls and restaurants. Probably most of the single people I observed in Italy arr Italian but they are still present. Not so on our ship. Everyone seemed to have a partner and that was a harsh reminder of my singleness. I do remember the complete world that David and I could create. When we went out, when we travelled, we needed no one else. I feel like I am coming into my own as a single, but the reminder of a different time hurt. Generally, fellow cruisers were not looking for new friends, and the first night we were seated with another AotS family of 8. Eight of them and Julia and I. They wanted to catch up, and although I’m sure it was not intentional, we were marginalized. I couldn’t wait for dinner to be over. That experience, no matter how unintentional, set the tone of the cruise.

Added to those impressions, the internet service was so slow as to be non-existent. I had opted for the expensive search & stream package and visited the IT guy daily to see what I could do, where I could go to get some reception. The IT guy promised that it would get better on successive days, better in port, better on the open sea, rebooting the whole system including all the separate blue tooth receivers. My favorite excuse was that the ship is older and the internet was retro fitted which might have been true but the advertising promised the faster internet on the seas and the ability to stream from Netflix, etc. It never entered my mind to find out if they could deliver on their advertising. They can’t. Now home, and complaining about this to friends and former cruisers, I’m finding this to be a common problem on cruises and that I am not the first person to be upset and disappointed.

This may seem a petty problem but normally I stay in touch with my home world via the internet. I text and email Cheshire and a few friends, comment on Facebook and of course, blog. This is the company that I need while traveling. I write like I would share impressions with a travel companion and a few reader respond in kind. And I do not feel alone.

Finally, I could not meditate. I tend towards motion sickness and I wore acupuncture bands during the entire time on board. They worked great but I was aware that if I concentrated on the movement of the ship, I might be sick. To maintain wellness, I kept myself in light awareness. When I tried to sit, either on my bed or on the balcony, I could not keep my awareness of ship movement light and avoid deepening. I tried doing meta but I could not get away from the portion of my mind fully aware of the sway. And I knew that was the road to seasickness. Walking meditation was worse. So I gave up trying.

Without meditation and the internet and the feeling of being trapped in a world of partners, I was lonely and grumpy. And I worked myself into a very unfriendly mood. By the time the AotS staff volunteered to stay with Julia and urged me to go to the moms night out, I was sulking in my shell. I did not want to let go. I was mightily afraid that hanging out with the moms of our group would just be another uncomfortable exercise. I expected to be marginalized and rejected. My basis for this belief: absolutely nothing!

But . . . Yes, but, in stepped some lovely synchronicity. Someone was going to stay with Julia during mom’s night. It began at 10:30. Karaoke ended just after 10:30 and we missed our sitter by our cabin. I didn’t have her room number and didn’t think to call the AotS’s number I had. Julia was hungry from the excitement and too full of adrenaline to settle down to sleep. So we went down a floor to the “Main Street” that had all night snacks and a few bars. Julia picked some pizza and hot cocoa and we sat down to people watch. Two AotS staff saw us and joined our table. They tried to convince me to let them take julia to our cabin and give me the rest of the night but I was still pretty set in glumness. There was forming, however, a chink in my mood. They spied a big table of the mom’s of our group and leaned on me to join them. I acquiesced pretty much metaphorically dragged to join in saying I’d go for a few minutes because Julia needed to get to bed.

We sat and slowly I joined in. I asked a few questions and miraculously a few questions were asked of me. I began to really listen and to participate and although no kindred spirits were discovered, comradeship formed. We stay a long time, Julia yawned some time after midnight, closer to one, and we quit the scene.

By morning, A few lessons had sunk in. 1) I had some expectations of the group that were not met, at least not as quickly as I seemed to expect. 2) I had no idea I had such expectations. I thought I knew what I needed to know about traveling alone with Julia. 3) Freed from taking care of Julia every minute of a vacation threw me in an unexpected way. 4) I cannot erase loneliness. Acknowledging the old familiarities is fine, expecting them to be available is not rational. Feel that pain once and then let it go. 5) Chasing joy is work. Work that requires a generosity of spirit and patience. Yes, patience towards myself. Towards me self before others. 6) Taking a nap during respite was really okay. Really! 7) I was mindful enough to keep a light awareness to avoid being sick. 8) I could do lots of off the cushion work. 8) I could befriend someone without waiting for some overture.

Finally, 9) following Julia’s lead to go to karaoke every night gave us the company of the healthy handful of people who also went every night. They were folks who loved musicals or wanted to join bands or who sang in church choirs or who just loved to sing. They were pretty close to my/our people. Next time, we’ll go from night one and I will sing too!

I did connect with two mothers traveling with kids—one of these had brought her sister with her for company, but that hadn’t worked out well. When we had dinner respite one night, I asked her to join me for dinner. She happily accepted but a last minute complication arose with her son and she couldn’t go. I went to have sushi alone with a book and that was ok. The rest of the cruise was also ok. Really better than ok.IMG_1621

Reading this over, I could be self conscience about the self-evidentness of what I discovered. Possibly very easy lessons for some others. Amazingly, not so easy for me. And exactly where I am on the journey.

One thought on “getting out of my way

  1. I am so glad you too were able to enjoy most aspects of this trip, and Julia-she seemed to be in her element. Your self reflection over the experience is wonderful. Thank you for being so open and sharing. Next adventure???? =)

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