Alana and I had the distinct pleasure of talking with Kathy Johnson about her journey raising her son Brandon who is diagnosed with ADHD and Autism. Brandon was born premature at 27 weeks. His parents knew from the beginning that he would have some sort of learning disability, they just didn’t know what it would be, how it would look or what it would mean for their family. They were just told to “look for it” said Kathy. So off they went, looking for the thing!
Around the age of two, Brandon started going to daycare. It became apparent that Brandon had a strong preference for playing by himself. Teachers thought this was great, often praising him for his independence. His mom knew however, that this was a sign of something else. As he continued in school, he started to bring home red cards, which were indicative of disruptive or off-task behavior. Knowing that he was incredibly smart and doubting that Brandon would purposely cause any issues, she took him to the doctor. The doctor tested him for Attention-deficit/hyperactivity disorder (ADHD) and Asperger’s. He was a textbook case, said his mom. Today, the symptoms of Asperger’s are included under the diagnosis of Autism Spectrum Disorder (ASD).
Brandon’s experience overall in school was positive. His mom shared that other students often took Brandon under their wings. Unfortunately, there was not a lot of knowledge around Brandon’s diagnoses at the time. “I often had to educate doctors and teachers” said his mom, but “I got a lot of helpful information from his cognitive and speech therapists.” One thing Kathy said was extremely useful was the creation of a “Meet Brandon” book which she shared with teachers each year. Included in this book were Brandon’s strengths and challenges, things he liked and things he disliked. Brandon loves Yu-Gi-Oh, watching YouTube, and making people laugh and he can memorize anything of interest to him. His mom shared that Brandon has thousands of Yu-Gi-Oh cards and could tell you everything about every single one of them.
Kathy shared that one thing that has been difficult through Brandon’s life is that he is very black and white in his thinking. For example, when Brandon was younger, he was taught what an “emergency” is. When his teacher later told him “you can go to the bathroom if it’s an emergency” and Brandon did not see a fire or the like, he did not use the restroom despite really having to go! To Kathy, the absolute hardest part about raising a child with Autism is the invisibility of the diagnosis. “People just expect him to know so much” but the reality is, it has taken and continues to take more intentionality than that.
Kathy’s experience raising Brandon grew her passion for helping people, especially those susceptible to anxiety and those who struggle with organization. She started her own business called Kathy Conquers Clutter which afforded her the opportunity to create her own schedule which proved beneficial for her family. When it came to other services and supports for Brandon and his family, his mom said that they were very fortunate. Because Brandon was fostered and then adopted, he qualified for Medicaid which opened many doors. The services are out there but “without Medicaid, they’re not accessible to the general public.” Out of pocket, a single speech therapy session can cost up to $250. This aligns closely with our own experience raising Brayden and continues to be a point of advocacy for us at Say Hello Threads.
It was a gift to be able to share this time and space with Kathy and learn more about raising a child, and now an adult, with ADHD and Autism. If you would like to connect with Kathy, you can follow her on Facebook and on Instagram. You can also visit her website. If you would like to be featured on our blog please email us at Sayhellothreads@gmail.com.