I’ve talked a bit about the time before we knew Braden was autistic. The time when I didn’t have the words to say to people when they looked at us and asked us why we don’t discipline our son. When they kicked us out of the public children’s library because he was “too loud.” I couldn’t say, “My son has autism.” I just had to take him away and cry…because I too, was frustrated with him, his noise, his behaviors. I knew something was wrong, but what was it?
When I took both kids home after the Bali bombing, and Braden’s behaviors got worse, I was truly at a loss as to what to do. Luckily, Mike’s sister helped us to understand that there was a problem and we needed to do something about it. She researched and found out that Oregon had something called “Child Find.” As it turns out, Child Find is a mandate from the Individuals with Disabilities Education Act and is found in every state in America. According to Wrightslaw, “Schools are required to locate, identify and evaluate all children with disabilities from birth through age 21. The Child Find mandate applies to all children who reside within a State, including children who attend private schools and public schools, highly mobile children, migrant children, homeless children, and children who are wards of the state.” (20 U.S.C. 1412(a)(3)).
Mike’s sister, Kim, did some research and gave me Child Find’s number. Making that phone call was probably one of the hardest things I’ve ever had to do.
“Hello, my name is Lori Boll and…I think…I think (deep breath) something is wrong with my son.”
Fast-forward a few weeks. The woman from Child Find came to our house in Sunriver and observed Braden. Afterward, she sat me down and said that she saw a lot of symptoms of Autism in Braden and he would need further assessment. My parents came to visit that night from Eureka. I had to tell them that they thought Braden might be autistic. “No…he can’t be,” they said. I wanted to believe them.
A few more weeks went by and it was time for Braden’s assessment. He was given something called the ADOS (Autism Diagnostic Observation Schedule). He was asked to do things like pretend he was at a birthday party, blow out a pretend birthday, candle, etc. He was asked to speak. He didn’t. He did go to the window and say, “It’s snowing outside.” I honestly can’t remember the rest. All I remember is this. My good friend Saundra came with me to the assessment because I was afraid I couldn’t do it on my own. (Mike was in Jakarta at the time). The people who gave the assessment gave Saundra and me the scores. I could barely focus. I was just listening for the word autism. But at the end, I never heard it. So I asked, “Does this mean he is not autistic?” They said, from what I remember, that there wasn’t enough evidence to say he was autistic…that he didn’t score high enough on the scale, or something like that.
We left. I asked Saundra, “He’s not autistic?” She said, “Nope, it doesn’t look like he is.” That day I made the plane reservations to head back to Jakarta. Braden wasn’t autistic. I could go back to normal life.
Mike and I did know that we couldn’t continue teaching overseas as even though Braden wasn’t autistic, something was still wrong. So Mike picked up a job in Denver, Colorado and we moved to our new home.
Braden started attending a preschool program in our school district. He had a great teacher, nice classmates, and some very helpful professionals, but it soon became apparent that Braden was an outlier. He was very loud, never played with any of the other children, didn’t engage in conversation, and didn’t participate in class. Child Find to the rescue. They once again came to our house. At first, they tried to tell us that since Braden didn’t have a diagnosis of autism, then they couldn’t put him into their special preschool autism program. Although he was showing all the signs, he didn’t have the diagnosis. Mike said something about having to go through “mediation,” and suddenly Braden was admitted into the program. Hey, we do what we have to do for our kids, right?
So Braden was moved to a new preschool program with the most incredible group of specialists I’ve ever met. Nicole (Speech Pathologist), Wendy (Occupational Therapist), Susan (Special Educator), and Beth (Psychologist). These professionals were the best in the business, and we are forever grateful for the hard work they put in with Braden.
After working with this group for 2 years, Braden still didn’t have a diagnosis. None of them were willing to say he was autistic. There were some areas where Braden really shone, so they thought maybe he wasn’t. We needed a diagnosis, however. Kindergarten was looming. No diagnosis=no special programming.
Enter Children’s Hospital in Denver. Dr. Nancy McMonster (not her real last name) was the Developmental Pediatrician who saw us. We went into her office. She took off Braden’s socks and smelled them. To this day, I still have no idea why she did this. She watched Braden for about 10 minutes. He was in the window-sill repeating something over and over again (I can’t remember what it was).
Suddenly, she looked over at Beth, the school psychologist who came with us to the evaluation, and said, “And why haven’t you people diagnosed him with autism? Isn’t it obvious he has it?”
So yes, this is how we got Braden’s diagnosis of Autism. He was five.
Believe it or not, we laugh about Diagnosis Day. For so long we struggled and stressed and were afraid that Braden might be autistic, and in one crazy sentence we were not-so-lovingly told that he was.
We are pleased that diagnoses are made for children on the spectrum at a much younger age now and that awareness campaigns have made it easier for people to recognize the signs and symptoms. Children are getting diagnosed at 14 months of age. As everyone knows, early intervention is key, so families benefit from this early diagnosis.
Sometimes I wonder why we accepted Dr. McMonster’s diagnosis of autism. I think we were ready to accept it. I think we were somewhat relieved that we had a name for what was going on. Sometimes I wonder if the diagnosis is even correct. Braden isn’t what you would call, “typically autistic,” but then again, is there such a thing? Does it even matter? I don’t think so. He’s getting the care and education he needs, and that is what matters in the end. If it’s not autism, then what is it anyway?
In the end, I don’t hate Dr. McMonster. She told us what we needed to hear; that our son was differently abled. I’m really not bothered by the fact that she was so rude. I am really bothered by the sock-sniffing though.
Note: The picture above is of Braden, and the most phenomenal Speech Language Pathologist of all time, Dr. Nicole Sparapani.