The birth of a child is supposed to bring love, joy and happiness into the lives of the parents and family. Children are unique unto themselves and each one has his/her own unique way of connecting with the world and those around him. But what happens when you realize that your child has needs that are not typical of anyone his/her own age? What happens when you have to face the reality that something about your child is different and you need to search, research and seek the help of others to discern what it is you need to learn and the foreign worlds that you and your child will encounter as we read this informative, heart wrenching and important book to help other families understand a diagnosis that you too might hear regarding your child’s educational and social needs. But first we meet Amy and Derek who are 21 years old at the start of this journey hoping after getting married to have a child. When Dylan is born, they are elated and so are their family members, but it would take years of searching, doctors who misdiagnosed, teachers who were short on patience and long on criticism and lack of knowledge before they heard what they needed to hear. Dylan was learning disabled extremely bright. Seeking the help and visits with many medical professionals in many different fields including neurological exams and more the frustration they felt and the sadness they dealt with as their young child often got violent, yelled for no reason, could not handle changes in his routine or life and we meet administrators, teachers, students, parents and community members that were for the most part not accepting of Dylan, often tried as they claimed to focus on his needs but even told his parents in several instances that public school was not for him, disenrolling him leaving them with few options, focusing on private schools, special education programs and traveling to so many places they would have toured the US by the time anything permanent for Dylan was ever decided. The authors describe their anger, frustrations and their lack of knowledge in how to deal with a child who suddenly would have outbursts of sometimes focus on one thing. It was not autism in the real sense of the disability he was finally diagnoses with Asperger’s Syndrome which is an Autism Spectrum Disorder meaning that Asperger’s Syndrome shares many of the characteristics that people what are autistic exhibit like: lack of social skills, low frustration level, lack of empathy, strong opinions at times and poor interaction with people. It is not the same as autism, because cognitive and linguistic abilities are relatively unaffected. Dylan was placed as you will learn throughout his time in elementary school, middle school and high school in different programs that should have been designed to meet his needs at least some of the IEP’s appeared to be on paper but in reality things that were set in place were changed without warning, teachers that were willing to work with Dylan and had his best interests at heart, might leave for personal reasons and supervisors that could care less and never really bothered to understand the ramifications of what this diagnosis meant. Teachers with these students in their classrooms as we enter the ones with Dylan in many of his grades were not trained to work with him, nor did most of them seem to want to take the time to learn any strategies.
Individuals at present with disabilities, under the Disabilities Education Act or IDEA, states that students with disabilities must be taught in the least restrictive school setting possible. Students diagnosed with Asperger’s Syndrome are taught in a general education classroom and are smart academically but in Dylan’s case he was challenging for the teachers and at times he exhibited behaviors that were uncontrollable, sensory processing issues, obsessive focus on one subject in his case at one time birds and another time cars and executive functioning gaps. His teachers not trained and some lacking empathy themselves became frustrated with these symptoms if they applied some basic teaching strategies which these teachers for the most part did not have or even try to research, Dylan might have had better experiences in his early childhood and middle school years. As I read this book the doctors they sought, the immense amount of medications they tried and the adverse reactions to his personality and his physical well-being had to be more than frustrating but disheartening too. Imagine being told by a principal of a public school that your child was not longer welcome to attend. Imagine trying several private schools, camps and other ways to engage your child’s mind and get the education each child is entitled to only to be called to come and get your son and then dealing with difficult outbursts at unexpected intervals. Amy and Derek have three daughters, Mariah, Lily and Serena who seem to get along with Dylan and from they relate he’s a great brother. Schools with these children need to have programs to help teachers, which the ones Dylan attended seemed to lack to help teachers understand students with Asperger Syndrome and other Autism Spectrum Disorders. Some teachers are trying to understand and learn on their own while some who have students mainstreamed in their classes like Dylan, even with someone assigned to directly work with him, seemed more interested in other areas and used their assignment as a filler and stepping stone to something else.
Dylan is extremely bright and we hear directly from him in the sections titled Dylan’s take where he explains why he did not always understand his actions, why he at times got angry but one thing he did say when confronted by an administrator for not using his hands when someone struck him something that I would agree with and say: Words are more powerful that hitting and you can hurt someone more with your words. So very true.
As an educator I had students that were autistic and ADHD and with the help of the special education staff I observed their behavior modification techniques, teaching techniques and how they dealt with a student that became confrontation or combative, but I did realize they never yelled or lost their cool. There are many more students with AS than other forms of autism and teachers need to begin to understand this and kids with AS have normal to superior intelligence and Dylan is way above normal. He could be one of the brightest students in the class and we learn at times came up with answers that were more intricate, more involved and more diverse that others and often solutions that no one else realized or saw. Because of the lack of understanding or not wanting to deal with him, Asperger influenced brains can cause teachers to misunderstand a child’s intent or words. Dylan loved cars, birds and eventually we learn how comedy came into his life and his ability to act in shows with a perfect performance and reciting the dialogue with no flaws. At times both Amy and Derek were proud, and the small milestones were embraced and at others Derek became frustrated and even misspoke about the other children involved instead of embracing his son’s achievements. Dylan tried to respond but at times he could not understand why people were upset by his responses and actions. Teachers claimed he was rude and disrespectful at times, impulsive and hard to handle and control, not unusual for children with Asperger. It was interesting to hear at different age levels his reasoning for not wanting to interact with others, why he did not think learning social skills was important or even upsetting others by his attempt to answer and respond. Teachers that yelled, parents, insulted or ignored his cry for help and his classmates that were not responding to be his friends. Trying to make conversation at times with potential friends he often gave long winded speeches and did not listen to the other side of the conversation or what they might have wanted to share. He would have benefitted from social skills training but was resistant it would have helped to rewire his brain.
Comedy interested him, and he seemed to be great at times as a stand-up comic and often got the jokes great and one teacher even encouraged him to do him in class. Some were supportive while others created a wall and never really got to know Dylan.
Drastic changes came about as Dylan’s behavior became so difficult to the point, they had no choice but to send him away to a school that was considered a boot camp and where he began understanding more about himself and would hopefully soar in the future.
Dylan has a low frustration threshold and although he was extremely intelligent at times did not understand why he could not make himself understood, why his accommodations were not met and had severe meltdowns. Learning how to help him avoid these meltdowns came with work understanding and avoiding triggers but this would come in time. He required until the day he graduated high school and even looking for employment learning strategies for calming himself down and asking for breaks during lessons. One thing that I learned worked with students that were ADHD was using a timer during lessons and silent work time. Students need breaks and it can help when they know when the final product is due when the timer is about to go off and learn to pace themselves.
At times these students needed to walk and cool off and at these times I would give the student an errand to do or enlist his/her help with something that would require movement and not being seated. Dylan presented many challenges to his parents, friends and teachers and at times they had no idea how to handle him. Teachers need strategies to help work with these students as his teachers could have used them too and although he had advocates, they were not available 24/7 to oversee and protect his needs. An incident on New Years was described as he came in late and did not even acknowledge that his parents were concerned. The incident with hitting his sister’s car and made to pay for a damage was handled the right way letting him know he was not immune to consequences.
The last chapters are very emotional with Dylan getting arrested for stealing a fake bomb threat and having Derek make many hard and fast difficult life changing decisions including insisting he leave the house and then the final reveals that you the reader need to hear Dylan’s voice about how he grew and learning adult/adult relationships in a story about Chasing the Rabbit which has more to go and ending still to come. Told from both Derek and Dylan’s viewpoints this book is a great resource to help parents, teachers, counselors and law enforcement understand people with Asperger’s Syndrome
Fran Lewis: Just reviews/MJ magazine/MJ Network