Holland may not be Italy, but it has its Charms

ST. CATHARINES (CUP) – Justin is a Grade 11 student with many accomplishments. He worked his way onto the honour roll, he sings in the school choir, he walks dogs as community service, he bowls with a league on Wednesday nights, he loves The Muppet Show, and he has a nearly photographic memory. He has gone parasailing, held a baby alligator, and doesn’t seem to have a malicious bone in his body.
Justin is the type of child any parent would boast about. Despite this, he has probably experienced more by the age of 17 that many of his peers have, or ever will.
Justin is autistic.
In her book, Welcome to Holland, Emily Pearl Kingsley writes that having a child with a disability of any sort can be compared to excitedly preparing for a holiday in Italy – you have read all the tour books, researched the country’s history, and told all your friends about the wonderful adventure you are about to embark on.
However, when the plane actually lands, you find yourself in Holland.
While the country is still beautiful, it is certainly not what you are expecting. All the research and preparation you have done for your trip to Italy seems completely useless and you are stuck in a country you know nothing about, while no one really seems to want to help you.
For Mark and Pat, Justin’s parents, and his older brother Jordan, landing in Holland was certainly not what they expected.
“[When Justin was diagnosed], I walked out of the doctor’s office and just bawled like a baby,” said Mark. “You think your child is going to be perfect; perfectly healthy . . . and then you’re in shock for about a year, and then eventually you get over it.”
The characteristics of Autistic Spectrum Disorders (ASD) mostly express themselves through interpersonal skills and behaviour: the individual’s level of communication and verbal skills, or lack thereof; their ability to form and maintain interpersonal relationships; and their restrictive or repetitive behaviours, such as a vast knowledge in one specific area, or repetitive motoric motions.
The skills and behaviour vary depending on where the individual is placed on the Autism spectrum. Beyond that, ASD can frequently be accompanied by other intellectual disabilities, such as Obsessive Compulsive Disorder and Attention Deficit Hyperactivity Disorder.
When Justin was two, the typical age for diagnosis of ASD, he was still not speaking. He had a difficult time making eye contact with others and, as Pat describes, could be labelled as a difficult child, or simply a brat.
“When you were diagnosed back [when Justin was], you were told your child was Autistic, and the doctor walked out of the room and that was it. You were left on your own,” Pat said. “Now there’s all kinds of support available that was never available and it’s changing the nature of how it is dealt with.”
Since then Justin – who was diagnosed as medium functioning on the Autism Spectrum – has developed significantly. While Pat says eye contact is still sometimes a problem for him, he enjoys greatly the support network his family has created within their community to facilitate Justin’s personal and social development.
“Because he can’t think in the abstract, we take him everywhere so he can see everything and experience everything so he has a point of reference after that,” Mark said. “If he hasn’t ever seen a hippo, he’s not going to know what a hippo is. We build up his inventory of experiences – so we take him everywhere we go.”
Individuals with ASD often require a great deal of structure in their lives. Despite the family’s desire to encourage Justin’s socialization, there is still the need for a detailed daily schedule that includes incredibly specific tasks that often override the family’s need for personal time and the ability to change plans at the drop of a hat.
After 17 years living with Justin and learning his behaviours, the family understands his needs, and as a result, runs like clockwork. Mark, Pat, and Jordan know if the tasks that Justin is expecting to happen are not completed, he will become upset and agitated.
“There’s about 150 things we go through [when he gets up in the morning], but most of them are bam bam bam, and I’ll go through about 20 things and it takes five minutes. He gets out of bed in the morning and he has his routine, and because of that we all have our routine now,” Mark said.
“A couple months ago we had to go to a party, and there was a movie on that he wanted to watch at eight,” Pat said. “Well, we went to the party and thought that as soon as he gets to the party he’ll be fine, although the second we walked in the door, he started telling everyone ‘I have to be home for eight, I have to go now,’ because he had a movie that he had to watch. We drove all the way to Niagara Falls for this party, stayed there about 10 minutes and then had to leave so he could be home in time.”
Thankfully, everyone generally understands the situation.
Despite the support that Justin is fortunate to have in his life, Autism is not something that will simply go away.
While Mark and Pat hope that when he completes high-school and possibly some post-secondary education – Justin is very skilled at woodworking – there will be opportunities for employment within their region, they say there is probably no chance Justin will ever live independently.
“The most important thing in dealing with an Autistic child is support, and we’re very lucky that Pat’s mom and sister are like angels,” Mark said.
“He would have to live a very sheltered life, because that is what he is used to because of all the support he gets at home,” Pat continued.
Kingsley writes of how once you have been in Holland for a while, you begin to realize that despite the trouble you had in the beginning, Holland is still a beautiful country with a lot to offer.
“Holland has windmills, Holland has tulips, Holland even has Rembrandts,” she writes.
It seems as though Mark, Pat, and Jordan have also realized that while having an individual in their family who is Autistic may be hard, it certainly has many bountiful rewards. The family has endless stories about Justin and very few of them are negative.
In their eyes, Justin has the ability to make you laugh hysterically with the things he says, or melt your heart with how much love he has for his family and friends, which ultimately is reciprocated by everyone he meets.
“He doesn’t have a hurtful bone in his body,” Mark said. “He doesn’t hate anyone – he doesn’t understand what that feels like.”