[From April 2011]
Many of you know that we have 3 boys. It makes for fun times and sticky messes most days, but we love the Lego’s, video games and farts. Cullen is the youngest, he is now 6, and in February was diagnosed with Asperger’s Syndrome. For those of you who don’t know, Asperger’s is on the Autism spectrum, and is caused by frontal lobe deficits in the brain. Aspie’s (people with Asperger’s) are all unique, but some of the characteristics that they share are trouble reading non-verbal communication, an inability to recognize or follow social cues and trouble interacting with people. They can be blunt and brutally honest. They usually see the world differently and have amazing perspectives. A bit obsessive and they can have problems moderating their speech and keeping personal space. Another big thing is sensory sensitivity and their love of routines. They are literal minded; they don’t get sarcasm or figures of speech. Some of history’s most brilliant inventors, scientists and artists are believed to have had Asperger’s. Albert Einstein, Thomas Edison and Vincent Van Gogh top the list. But genius is by no means the norm.
At first, the diagnosis threw a wrench in our lives, and then we realized that now that we had the wrench we had the tools to help him! Cullen started Kindergarten this year (after 3 years of preschool and pre-k), but his behavior in class had been increasingly odd and frustrating for his teachers (and for us). At the beginning of the school year Mike pushed me to get Cullen tested for ADHD, which came out normal for his attention level, but high on the hyperactive side. We completely changed his diet, cutting out sugar, high-fructose corn syrup and some dye’s. He also started going to a psychologist twice a month to work on his concentration and behavior skills. We saw some changes, but the quirky habits started to be more noticeable, and I started to feel like maybe there was something else going on. An email from his teacher telling us that his behavior was not improving made us start questioning what else it could be. I made a list of observations I had made, and took it with us to his bi-monthly visit. The Dr. pulled out a diagnostic test, and at the end of it said, “That was an Asperger’s test, and he is overwhelming positive.” The first thing I did was make a beeline to Pinkberry and Auntie Anne’s Pretzels, the next stop was the Kindle Store where I downloaded every book I could find on Asperger’s. After devouring about 8 of them I felt better. I obsessed for weeks… reading everything I could and trying new ways of interacting with Cullen. We started seeing bigger changes at home and at his after school program.
We are still learning and will probably keep on learning for the next ten years. I was thinking the other night that the challenges Mike and I face have already given us tools for helping Cullen grow and learn the skills he needs. Mike probably has ADHD and is able to help Cullen focus. Mike is also great at making Cullen “fit in” they have their own gibberish language, and they love to walk funny, and just be goofy together. I (according to Mike) am a little bit of a control freak. Which makes me a great organizer and routine setter for Cullen. My artsy side helps when I draw out instructions and social stories for him to carry with him. We’ve both had to learn to let some things slide, like that he can’t help his goofy faces, and the inability to sit still, or the way he talks when he gets excited or stuck on something. We’ve had to change how to talk to him, and we’ve started repeating instructions.. specific instructions.
The most frustrating thing is the challenges we are still having at school. The teachers and administrators have little more than a textbook definition of what Asperger’s is, and no idea how to deal with Cullen. Since his academics are way above the standard level required he isn’t eligible for any assistance from the school, and because he doesn’t have a learning disability or trouble speaking he isn’t eligible for state assistance. We wanted to take some pictures of the Cullen we see every day.. the goofy faces, and the solid stare haha, and we had to get some in with our name tags too. The best part is getting to share his Cullenism’s (as his fans call them). He has such a unique way of looking at things, that are downright funny most of the time. I need to compile a list of my favorites. One of the latest was him looking for cats and dogs on the roofs and in the trees when I told him it was, “raining cats and dogs.”