Article by Kristina Chew | June 13, 2012
Morgen Kann Warten — German for Tomorrow Can Wait — is a Kickstarter project about traveling with an autistic child in Europe. Scott and Monika Knight (who live in Berlin) describe their travels all over Europe — Thessaloniki in Greece, Nice and Paris in France, Dublin and Connemara in Ireland, Stockholm and the south of Sweden, Prague in the Czech Republic, to name a few — with their now-11-year-old autistic son, John. As they write:
Severely autistic people aren’t primarily known as globetrotters. They like routines and familiar surroundings. Our son John, eleven years old, severely autistic and non-verbal, is no exception to this. But he also really likes to travel. As soon as we realized that, we were on the road and have traveled a lot throughout Europe since.Some (maybe many) may balk at the notion of traveling with an autistic child — with a severely autistic child — and in Europe (the long overseas plane trip from the US to Europe would be too much for my teenage autistic son Charlie). The very notion of travel — going to different places — indeed seems antithetical to autism and to the experience of parents of autistic children.
Traveling With John
The authors of Morgen Kann Warten address this very issue. Their travels with John are not meant as any sort of pilgrimage to “cure” or “heal” him. Traveling, they make clear, “puts our little family of three willfully in unknown situations” and this is ultimately of huge benefit to John:
Even though – and especially because – he has problems understanding the world around him, exposing him to new landscapes, people, languages and situations offers him the ability to appreciate the spectrum of experiences that the world has to offer.In an introductory section, Monika (I’m fortunate to say that I first “met” her thanks to the Internet some years ago) describes John’s early life. Born in Illinois (John’s father is American), John suddenly developed seizures when he was 18 months old and was given a diagnosis of epilepsy; a neurosurgeon told his parents he would have seizures everyday as long as he lived. John became seizure-free soon after, an unexpected turn of events that coheres with one of Morgen Kann Warten‘s themes: The unexpected is ever lurking and can contain more than meets the eye.
As a young child, John is diagnosed with autism and his parents change their lives and jobs so they can best care for him. At support groups for parents, they hear about struggle and isolation. One 60-year-old woman tells them how her 30-year-old autistic son’s life is divided between weekdays at a sheltered workshop and time at home, often in his pajamas so he does not have to leave the house. She urges Scott and Monika to teach John to “be in the world” and that is precisely what they decide to do.
Going to Holland, and to Italy, and to France, and…
“Welcome to Holland” is a parable by Emily Perl Kingsley, in which the experience of finding oneself the parent of a child with disabilities is compared to thinking you are going on a trip to Italy and ending up in a destination did not want to go to, Holland. While this parable has its truths, not every parent (my husband and myself included) find that it suits our experience. Some of us feel that we are just as glad to find ourselves in the country we are in as wherever we thought we might travel to. So Scott and Monika write:
There is a critical response to the parable on the Internet in which the ending is changed. The parents tear the Rembrandt off the wall, walk into a travel agency, take home brochures of Brazil, Greece, Egypt, Alaska, Japan and Tahiti, turn the globe and pick a destination with eyes closed. Farewell, Holland. It was only much later, long after having read both the parable and its response, and after having gone on many trips, that we came to realize: we literally put the critical response into actionMorgen Kann Warten is, indeed, about actually traveling to Holland, Greece, Denmark and beyond with a severely autistic child.
Traveling with John, via train and car, poses some additional challenges, his parents note:
During our travels, John fell in love with Ireland’s rugged Connemara. We experienced Sweden as the most handicapped-friendly country: public playgrounds were equipped with swings for wheelchairs, and people were very sympathetic towards John, even when he featured his signature combination of very loud noises and unusual body movements… On the Dutch island of Texel John quite unexpectedly learned to ride a non-specialized tandem bike. …In the same spirit as Scott and Monika, my husband Jim and I used to try to take our son Charlie as many places as we could: weekly trips into New York City, summer trips to the Jersey shore, an annual holiday trip to see my family in California. As he has gotten older, it has gotten harder for Charlie to handle change and we tend to go to the same few places around New Jersey. This is the situation for many families: Morgen Kann Warten is a reminder of what autistic children and their families can do. Scott’s and Monika’s travels with John — like that of other parents who have undertaken travel with severely disabled children — are an inspiration.
But John also went on a strike in the vineyards of Burgundy and refused to walk any further – in the middle of nowhere. In plus 90° heat on the Mediterranean, he escaped into the air-conditioned house and insisted on watching “The Sound of Music” over and over again, for two weeks. Sometimes our trips were carefree and characterized by pleasant encounters, sometimes it was harder than anticipated. As we experienced Europe from our unique perspective, we learned a great deal about how other countries look at autism and people with handicaps in general.
What I especially liked about the excerpts that Monika has posted on her blog is that she and Scott refrain from sugarcoating their account of their life with John. I know from raising Charlie what it is like to experience the “eternal autism conundrum,” of your child having his best day ever and then, the next day (sometimes in the same day) sprawled screaming and thrashing on the sidewalk. Parents like Scott, Monika, my husband, myself and so many more worry constantly about who will take care of a child with such complex needs?
But as much as we parents face this huge question every day, it is important — essential — to enjoy each day with our child and as a family and Morgen Kann Warten emphasizes this point powerfully.
Yes, Tomorrow Can Wait
The very title, Morgen Kann Warten, Tomorrow Can Wait, acknowledges that, yes, parents of children with disabilities have their hands full and have more to cope with than they often feel capable of. Morgen Kann Warten shows — in full acknowledgement of the daily struggles of living with autism — the need to make the most of life and “take a step back,” to provide as full and rich an experience of life for a child with disabilities as possible.
Morgen Kann Warten shows how, by being in the world with an autistic child, the world can be changed, to become a place that anyone can travel in.
@ As posted at Care2
