Asperger's syndrome is a high functioning form of autism, it is a challenging, often invisible, disease. It seems the only time it's funny is the first time your 8-year-old says it – “ASSpergers? Charlie has something wrong with his ASS?” If only it was that simple. When Charlie was a toddler, his parents noticed there was something different about him; thunderstorms made him inordinately frightened and he preferred to stand outside alone than to go into a birthday party. Charlie met all of his development milestones but there were no obvious warning signs until he attended Kindergarten, it was a very difficult year and his teacher did not know how to handle him. The school conducted some testing which were deemed inconclusive and the school was wonder if Charlie was being exceptionally disciplined at home.
According to Charlies Mom, Jen, his 1st grade teacher “made all the difference in the world”. She sensed that Charlie had a defect behavioral issue and pushed for more comprehensive testing. This time the conclusion was that Charlie had Asperger's Syndrome, there was no official diagnosis as he had not seen a medical professional, it would have been a year before they could get an appointment. Imagine having to wait a year to get an appointment? The best doctors for Charlie were in Boston and there are not enough specialists to go around. In the meanime, Charlie was put on an IEP – Individualized Education Plan – and his parents took to the internet to learn more about his pending diagnosis.
When Charlie entered the third grade, things broke down both at home and at school. His teachers did not fully understand his needs and without strong special needs resources, they were at a loss – he was often sent home rather than remedied the behavior in school. The stress overflowed into the home and emotions escalated for all four family members. Occasionally, Charlie's brother Danny, now in the first grade, broke down at school because he was overwhelmed with Charlie's behavior and the pressure his parents were under.
It was at this time that they realized they needed to make more obvious, lasting changes for the entire family – Danny joined a sibling group, Jen and Danny being taking daily walks so he could talk about what was on his mind, and they developed meaningful relationships with other parents who children have Asperger's. Very few people they knew thought Charlie was simply being defiant, Jen and Karl were lucky to have supportive friends and family to help ease the burden. Frankly, I think Charlie is great, he has a kooky sense of humor, whether he realizes it or not, and I certainly do not mind his candor. Being told that I am crazy and I embarrass my kids is nothing I have not heard before. He once told a teacher he did not believe having a test before break was in the holiday spirit, pretty reasonable if you ask me.
The family and the school learned to understand compromise and patience, there were not enough resources to go around and every treatment and behavior change took time. Teaching Charlie self-regulation is a group effort, his tolerance threshold decreases through the day which could result in him yelling and throwing things. He is monitored to teach him when he is approaching his breaking point. This takes cooperation and communication between the family and the school, which is not always easy. Sometimes Charlie forgings his homework, sometimes the school does not tell the parents until there is an IEP meeting. There has been tension and disagreement between the home and the school, until Charlie's family hired an advocate. The advocate helps keep the balance in meetings, she cost money but the family feels the benefit is much more valuable than material things.
As for their personal lives, they have learned that any plan can fall apart at a moments notice. When the family went to Disney, they were given a “fast pass” of sorts to avoid the long lines, children with Asperger's do not have a lot of patience. What became a smooth entry into a ride, turned out to be problematic after the ride and it had nothing to do with patience. Charlie was so excited about the great ride that it took 2 hours to calm him down before he could focus enough for the entire family to relax and enjoy the rest of the day. At his first ballgame, the announcers upset Charlie, he did not know what to expect and it scared him. And let's not forget Blue's Clues, the show appeals to children with Asperger's because they can refer to the list and, apparently, a handy dandy notebook makes a great gift. Charlie loved the show, so much so that his Dad spent a lot of money on tickets and drove over an hour to see the show. The minute the lights went down, Charlie panicked and had to leave, they did not see the show. The darkness and the noise was too much for Charlie. As he attends more functions, he is able to increase his tolerance. Plan all you want, but do not be disappointed when it does not pan out.
Having a special needs child can be very hard on your career. Karl was able to work adjust his situation so that he could meet the kids every day after school, this included working from home part-time. Jen had a more difficult time, despite working overtime and weekends, she was made to feel guilty when she left for doctor's appointments and school meetings. Luckily, she was able to find a place that was much more understanding of her families needs and has worked herself up to Vice President. Jen and Karl also began running for the bodies and minds, Jen has lost 50 pounds over the last 2 years and they both feel great.
Some of their biggest challenges are still related to school, it's like being a kid in the parent-child relationship. Charlies parents can tell the school what they feel might work or be best for Charlie but the school does not always listen and would rather learn through trial and error. The have learned restraint and the proper use of advocacy. Jen and Karl are partners in their parenting, they always provide a united front and have the same parenting styles, of which I am envious. They realized that they could handle a lot more than they thought and have developed a deep appreciation of the simple things in life, like Charlie getting 100% on his Math quiz, his worst subject. Those moments can be tear-jerker for Jen. Her advice to other parents? Put one foot in front of the other, you will get there a bit at a time. Do not think about the big picture, some results are years in the making and are amazing to see.
They worry about Charlies future – will he have a fulfilling job and relationship? 30 years ago, the answer would have been different, but today they have hope that Charlie will have a happy life. They do not yet know what the definition of a happy life is for Charlie, nor does Charlie, but I suspect he will have one. They are a great and loving family and Charlie has come a long way since I met him 5 years ago. The first time I met him, he was standing on my couch because he was afraid of the dog and it took some doing to get him down, including standing right up there with him. When I left his house this weekend, he hugged me. I do not remember Charlie ever hugging me before. I guess that's and example of a result that has been years in the making.