As a kid I was lucky that I was able to enjoy many wonderful family vacations. I did travel to many destinations. I wish I was able to pass that gift on to my sons. Unfortunately I cannot do that: our family traveling abilities are limited. Because travelling with a very autistic child presents some unique and serious challenges, and safety issues.
A vacation to me or you is enjoyable. We love to get away from it all. For a kid with autism, however, not so. If I was to describe how I think it feels for him to be on holiday – imagine how you would feel if you wake up suddenly and unexpectedly in a foreign country, where everything was different: the language, the culture, the surroundings, all unfamiliar. You don’t know what is going to happen next, you have no control over the schedule of events, you don’t understand what you are doing, and you don’t know why you are there. Kind of like a nightmare! For my son who has sensory processing problems, vacations are not relaxing at all. And therefore, not relaxing to anybody in the family. His stress plays itself out through bad behaviour, and extra work and lots of planning is required to manage those behaviours on vacation.
Then there are safety concerns. Vacation properties are not typically safety proofed, whereas at home we have locks on all the kitchen and bathroom cabinets, we have deadbolts on the doors, we have rules that have been reinforced for years, we have plastic instead of glass. We have photo pics on the cabinets to indicate whether the contents are edible: “eat” or “do not eat” pics. Travelling involves improvising these in a different environment. We could bring our safety strategies with us, but often we don’t know exactly what we need until we are there and can see what unique hazards are present. Even if we manage to successfully implement some of our usual safety measures, heightened vigilance is needed on vacation to keep Nick safe. It is NOT relaxing.
We also have to be vigilant because he does break things. We have to put all breakables away as soon as we get to the cottage. That is Job 1. He will find a lovely hand blown glass bowl and spin it, and drop it. Up until recently he would jump on the bed, like a two year old, but weighing 100+ pounds. And yes, we do tell him to get off the bed, and usually he cooperates, but I live in fear of breaking somebody else’s bed. Then there is the mess factor. For some reason, food disasters proliferate when we take N on a vacation. Part of that he has too much stimulation to sit at the table and eat, and endure the conversation at the same time. When dinner is ready, he grabs some food and heads into a bedroom, where he drops his open face peanut butter and jam sandwich on the white bedspread. When he is done, the crusts, a few blobs of jam, and whatever else he has scoffed are deposited in the bathroom sink, which was already clogged because he stuffed cheesies into the drain earlier in the afternoon. If you follow me on twitter you have seen our “sink de jour” images, these get even more creative and disgusting when on vacation. It is one thing to have the mess at home, it is another when it is not your place.
Camping proved to be way too difficult. The problem with camping – there is nowhere to contain N. He has nothing to do but wander around, and wander off. He has no fear of being lost, or of being eaten by bears, or of visiting the picnic tables of neighboring campsites. He just sits there while being eaten alive by mosquitoes, then he scratches the bites until blood runs down his arms and legs.
We have taken N to Maine a few times. Not without adventure. I remember one year I decided to take Nick to the beach by myself so my other 2 boys could have some quiet time at the cottage. I took him to a beach that was not usually busy, a beach near Wells Harbour. I never even thought about the jetty, a long stone pier that divides the beach area from the entrance to Wells harbour. As Nick and I were walking toward the beach along the boardwalk, Nick suddenly decided that he wanted to climb the jetty. He bolted off the boardwalk and headed for the bank of rocks. My heart sank, and I muttered “uh-oh”! I called him to come back, he ignored me. I dropped our beach stuff and followed him up onto the rocks. He moved further away from me. From the top of the jetty I could see the water on the harbor side was deep and the current was rushing with the incoming tide, and I had a terrible vision of him slipping into the current that would surely have been too strong for his limited swimming skills. “Come down Nick” I yelled at him but he laughed and pranced closer to the harbour edge. OMG. I decided to try to set the example and got down off the jetty. I pleaded “Nick – please get down off the rocks” Completely fearless and thinking my panic-voice was funny he laughed and went further away and closer to the dangerous edge. A crowd of curious onlookers had gathered to watch the strange drama. Nobody came to my assistance, probably because they, like I, did not know what to do. Somehow I had to get close enough to him to pull him away from the edge without getting him excited and sending him into play chase mode. I did my very best casual stroll in his direction, and when a passing boat distracted him I sprinted to his side. I took his hand, and he smiled at me and allowed himself to be led off the pier. End of drama. Phew!!!!!!!!!
There was another beach adventure where he did not cooperate. Wells Beach, other side of the harbour. Summer cottages, seaside motels, harbour arcade, great beachside grills, smell of French fries. My favorite place of all places. We are there, and N loves it, N loves the ocean waves, and seems to be completely unaware of the cold temperature of the atlantic sea. He loves the feeling of the waves washing over him, he enjoys the visual experience of the bubbling tumbling white foam of the waves coming towards him. He laughs at the waves because they make him happy. Our desire for him to enjoy is tempered somewhat by his fearlessness. He will go deeper and deeper, even though the waves get bigger and bigger and would knock him off his feet. When bowled over he always manages to come back up, spluttering and laughing and looking for more waves. Although he can swim, somebody always needs to accompany him, that somebody is ususally me. I, unfortunately, do mind the frigid cold!!!! Sometimes he does not want to come out of the water. Not good. On one such occasion, we were in the water at a time when the tide was just high enough to conceal many outcrops of rocks under water. Like a moth to a flame Nick would gradually make his way towards the most menacing collection of submerged rocks, while laughing and enjoying the waves. Mom was there too with that sinking heart and “uh-oh” feeling happening. I had images of him falling under and hitting his head. I tried to direct him away from the rocks to the sandier spots. Nick resisted me, pushed me away. He wanted to be where he was, or possibly a more dangerous spot, he was having fun and entirely oblivious to the dangers below the surface of the ocean. The more forceful I became, the more resistant he got. He even used his words: “Go away,” he said and one second later I watched as he was knocked off his feet by a breaking wave, his head narrowly missing a submerged rock. I was panicking – how was I going to get him to safety? Fortunately my oldest son came to my rescue and betwen the two of us we hauled him out of the surf, crying and clawing at us tooth and nail. We were able to calm him and get him to the car with a promise of a visit to the swimming pool. Although it ended well, it was another example of the issues that we face, travelling with a child with low functionning autism, a two year old in an adult sized body.
An evening at the cottage. Cottages are quite close together, making it easy to hear and see each other, and we were certainly attracting attention as usual. I was trying to assemble a badminton set for N’s two older brothers, and struggling to unravel the net. N orbited me, running in circles, while yowling and flapping, which seemed to be entertaining the neighbours. I was having trouble with the net, it had not been put away properly. I began to complain: “somebody….” Nicholas, who almost never puts two words together, decided to complete my complaint. In a loud clear high pitched voice Nicholas cried “somebody FARTED!” It was so random, so out of the blue, so not appropriate. My two older boys looked at each other and instantly bolted inside the cottage, leaving me and Nick outside. All eyes were on me, I had to be the guilty somebody.
“Normal” individuals and families NEED vacations. It is not a luxury. Our modern lives are so very complex and demanding. My very autistic kid does NOT necessarily get the same benefit from a vacation as the rest of the family. He just wants sameness, routine, repetition. He does not need to get away, in fact, that is not fun for him at all. The absence of reliable respite to allow families the freedom to get away from it all, even for a weekend, is one of many gaping holes in our touted “social safety net”. Family vacations are actually casualties of integration, victims of drastically reduced available public care. Because the government would rather spend money on ill-conceived projects and expensive consultants to guide them, than take care of its citizens.
We don’t want an expensive trip to an exotic destination. We just need a break, away from the burdens of every day. We don’t want adventures. We want peace.
It does not happen for families with autistic kids. It is NOT OK.