Have Autism…..Will Travel…...

You may be surprised to hear this, but there are actually MANY people out there doing what we are preparing to do. It is not unusual at all......yes....even right here in Calgary: not a city known for its abundance of sailors, we have met or heard of many families who have either done this or are preparing to do this.....

The people who know our family have so often asked me about what it has been like for us and how we came to this decision to sail with our kids, despite ‘everything’….
So today I have decided to tell you all about it.  You see, the way that we might be a little bit different from the average sailing family is that we happen to have a son who has autism. 

Now, I would not be doing anyone any favors if I just stop the description there. Because, as you may know, autism is a spectrum and it comes in all forms. So I would like to be clear, especially for any parent of children with autism out there who may be reading this and who, trust me, would need to know:  Matthew does not have a “Sprinkling of Autism” nor is he what some describe as “High Functioning”, nor does Matthew have Aspergers. No, our amazing Matthew who happens to be one of the most courageous young men I have ever met,  also happens to be “highly affected” with autism or if you prefer: he lives with a very “large dose of Autism” or  some others  would say he has “classical autism” , you know: “text book autism”. 

This means that everyday Matthew faces enormous challenges because of his sensory needs, his “unusual” self regulating behaviors, his social and communication differences.He has difficulty “decoding” language and social rules.  Matthew was diagnosed at a very young age (17 month) and today at the age of 14, Matthew still faces many of these original challenges. But that is not all that defines him;  Matthew  is a shining star in our family !  Not only has he been an excellent traveller from the time he was a baby, but he is also very affectionate and loving. He is hyper sensitive to other people’s moods and emotions. He loves music,  loves to laugh and to play pranks (like throwing all his pillows and toys out of his bedroom window) and like so many others, he loves water, in all of its forms : rain,ice,fog, shower, snow,baths,rivers and ....of course, the ocean!

So, what’s it like traveling with a child with autism? Well.....first of all: it’s intense! You need to be vigilant, you need to be quick (Matthew is a runner) and I would say that you need to have the courage to let go of certain things that don’t matter....Things like “Decorum”, “Proper Etiquette” in public places or “Anonymity in a crowd”. For us it also means that we have needed to actually let go of material things too....things that can be dropped, broken, bitten, thrown out of a window or over board ....haha....hehe…hm...

It may be hard for someone to hear or to believe (especially if you are a parent of a child just receiving the news about your child having autism).......but, most of the time, we feel grateful that autism has come into our lives.......it has changed our perspective of what is important, what is worth celebrating (everything !).... And we have learned to laugh ! You don't have a choice, if you want to survive. Sometimes we cringe, we scream and we cry , but then....invariably, at some point... we laugh......and everything looks a little bit brighter after that .

Before we had children, Mark and I used to talk about one day living on a boat and traveling. When Matthew was diagnosed with autism, Mark told me he felt that our dream, that dream at least, was over for us, that autism would be our new path in life. It wasn’t until many years later, after we had “adapted” to living with autism, that I asked Mark one day: "Why does that dream need to be over, exactly?" He could not come up with any good reason, (there were reasons, but none that we could not work around)….So we just looked at each other, realizing for the first time that we might be able to pursue our dream after all....

The reason why I felt compelled to write about this was that I thought:  If our story helped even one family living with autism, if it gave just one mom or one dad hope that life with autism is not a death sentence and that things would be okay.... If we could inspire just one family or one individual living with autism today to continue to work towards their own dreams….then…. I would be ecstatic!

Things that parents of children with special needs often ask me about:

How is he on long plane rides ?  We are lucky in that Matthew has been traveling with us since he was a baby. He likes to look out the window and likes take off and landing the most. When he was younger, there were times when he would get cranky and loud....during those times, I would go into “Fully Present” mode...where I would take it one second or one moment at a time and not worry about how long things were going to go on for. I would block everyone out and stop worrying about “what other people might think” and just focus on Matthew and his needs....The plane ride is also a place where I would pull out any and all new tricks out of my “hat”. (A bag of exciting new toys and treats that I keep just for the airplane ride.... just in case)

Does he like the boat ? Yes…. He does not mind (in fact he seems to seek out) small places, so he has always seemed to be right at home in a cabin. He LOVES the motion of the boat and, where as on land he needs to move all the time, when the boat is underway, he stays still, pondering, looking out into the waves.

What will you do about school ? Before we moved back to Canada (where Matthew goes to a specialized school for kids with autism and has a home program too), we used to run his home program and have learned some tricks of the trade. We have become the “experts” on how Matthew learns: what motivates him and what works. Just like for his sister who will be doing school while traveling, we will be pursuing Matthew’s goals onboard. His will mostly be self-help or daily living skills,  but also speech and communication skills . We will also work on play skills, sports, some fine and gross motor skills too.....and we also hope that being exposed to so many new things, new environments will as be beneficial to him as they will be to his sister.
Looking on the bright side: I can say that I for one,am NOT disappointed that Matthew is not following a typical curriculum...that means that I do not have to worry about teaching him Grade 10 Math or Language Arts !!!  

Are you not worried about traveling with someone with such high needs ?  Well you know, I have given this a lot of thought and the way I see it: life is hard for us no matter where we live. There are dangers for Matthew and obstacles no matter where we are. So why not take this life and its challenges "on the road" with us ?
To be honest, we would not want to do this trip without him.... he brings so much richness to this already rich experience.....he always keeps things interesting and fresh... never boring....and sometimes, when people we meet are confronted with his differences it opens a door and they come and speak to us, share their stories......it can be very heart warming !

What about his sensory needs ? When we are at anchor, Matthew gets plenty of time to run (on deck or on land), the swimming helps alot too. He gets his squishes with his blanket in his bunk everyday and we try to have plenty of chewable things for him on hand.

What about safety issues on the boat ? Matthew (and all of us on board for that matter) have self inflating PFDs with harnesses. When ever we are on our way, we wear them and are clipped in to the cockpit.Also; Matthew will never be alone on deck while underway, there will always be a person on watch. I should also point out that Matthew is an excellent swimmer and that we have a Man Over Board drill that we have adapted to our special circumstances, but out goal of course is always prevention. 

Are there any behavioral outbursts, any running episodes ? 
Any public embarrassments?  OH YES....This is where the “sense of humour” I was taking about really comes in handy...Where do I start ? Matthew goes through “phases”, some of which are easier than others. Last year, he was in a “Grabbing” phase, where out of no where he would seem to get scared and tightly grab hold (a tight bear hug) of any person beside him. We were waiting in line at a small grocery store in Martinique when he had one of these sudden “episodes”....he grabbed hold of the lady who was standing in front of us. She was a little bit scared at first but then she looked at me and by that time I had taken Matthew off of her, and I hardly had to explain anything, she was already telling me not to worry, and that she understood....Another thing Matthew is known for is sudden bursts of energy, where he runs away... yelling or singing loudly......I can tell you that this is one of those things that keep me fit and on my toes, ready for action, any place, anywhere.....I am getting pretty fast myself,(It’s part of my fitness program!) but as he gets older, and thanks to years of work with his therapists, Matthew is becoming more aware of street safety and listens well to our instructions to be careful and to stay close to us. 

So far, It has been my experience that no matter where we have been in the world, people tend to be very understanding and accepting of Matthew and his many quirks. 

Of course this means that we: his family,  have developed a thick skin and not much will embarrass us anymore....we tend to just try to anticipate his next move, but he never ceases to amaze us with new and interesting ways to explore his surroundings and to express himself. Always an adventure, like I said : never boring !

We find that a little bit of humour and some gentle explanations can go a long way. There was this one time in St Lucia, when we were walking with Matthew in a kids playground....a little girl and her father walked by us, and a few seconds later I see that Matthew is holding a huge clump of pink cotton candy…."where did he get that ?” I thought as I look back , I see the little girl holding what’s left of her cotton candy, looking quite sad.....we ran back and offered to buy her a new one, we asked Matthew to say “Sorry”, and she felt better, her father just laughed and said that he was happy to have her share !  These kinds of things happen almost on a daily basis, and we have learned to smile and laugh....also, I feel that this is always a good opportunity to increase awareness about autism with the people we meet. So far there has not been a situation that we haven’t been able to fix with a sincere apology, some explanation of the situation,a little bit of pocket money and a smile. 

Looking ahead : I have no idea how our family will do on this adventure. I have a feeling that we will experience many ups and downs; some hardships,some feelings of pure bliss, new adventures and memories for a lifetime...but one thing I can be certain of is that our blog will be filled with  “funny Matthew stories” just as much as it will be filled with all the rest. We will keep you posted…..