A Lifeline For Advocacy
When Jonathan was young I saw a disparity in how he learned. When I was searching for answers, things such as dyslexia, ADHD, and autism, weren’t words necessarily part of the daily dialogue in my community, nor did I originally think those terms applied to Jon. Times were different than they are now. Social media wasn’t a thing. Moms didn’t necessarily share their child’s issues with strangers or friends. You kept your personal matters within your circle.
I didn’t have friends or a network to turn to so I spoke to a pediatrician friend and asked her for advice. She suggested that I ask Jon's doctor for someone who could test him. He sent me to one of the most amazing neuropsychologists, who was also a parent to neurodiverse children. She tested Jon, spent time learning who he was, and diagnosed him as dyslexic, having ADHD and a high IQ. She quickly became my resource and helped guide us to the appropriate school that taught children with dyslexia and language-based disabilities, the Windward School. I no longer felt alone. I now had someone I could turn to who understood what I was experiencing, as well as a new community at Jon’s school.
Since then, the conversation has definitely changed. There are support groups for families with neurodiverse children, social media groups on Facebook, and apps available for those interested.
Earlier this week, my friend Beth, who is raising neurodivergent children, and I were discussing the different paths we took when our boys were first diagnosed and how she has been able to navigate her daily life with access to tools that were not available to me. While the diagnosis for her children is not the same as for Jon, our fears as mothers were quite similar.
When Beth’s youngest son Matthew was born, he never slept and was always hungry. He was highly unregulated, and as time passed his verbal skills did not develop as quickly as those of her older son. There is the common adage, that “boys develop slower” than girls, and as any optimistic parent would, she embraced that theory. This is the very same thing that I heard from Jon’s teachers.
At 18 months during a routine check-up with their pediatrician, Beth and her husband expressed their concerns. While it is the norm to wait until age two, she suggested they meet with a speech and language pathologist sooner rather than later.
For Beth, she used the channels and connections provided to her by her doctors and new therapists. At that time, schools and doctors were not as comfortable as they are today speaking about learning differences and parents didn’t have the tools or the language to ask for help or additional resources. Thankfully today, doctors seem equally as eager as families to get the right diagnosis and start the path to remediation.
When the speech and language pathologist met Matt, she immediately suggested that Early Intervention (EI) evaluate him as she saw the need for services. After the EI assessment, they were referred to a developmental pediatrician as they thought Matt had autism. While the providers inferred he was autistic, Beth and her husband wanted the label to be correct. Beth now acknowledges that at that time, she was in a complete fog, wondering what that label would mean for Matt and her family. After the testing was done, they received his diagnosis. Matthew was autistic.
She navigated this new world, applied for services, and placed Matthew in schools appropriate for his diagnosis and needs. When new issues surface, Beth can reach out to fellow moms on social media boards, get recommendations, and at the same time, share her own experiences and expertise with others. This was very different from my experience.
Beth has now become an advocate for families walking in her shoes. She is actively present on the many active Facebook Groups and social media channels that were first becoming available to her years ago. Families can search for possible services and ask questions about things that might be relevant for their child. These outlets were not available to me. I was not able to log into my computer and ask a stranger for guidance, an opinion, or help. I had to rely on Jonathan’s doctor, my intuition, and my close circle of friends who did not have any experience with dyslexia. Beth not only asks questions but also answers them. She is passionate about giving back, volunteering her time to newly diagnosed families with questions, and becoming a voice for parents who fear the unknown. Like Beth, I now also use social media to help others and promote acceptance.
When Beth and I were talking, I asked her what advice she could give to parents who think their child might be neurodivergent. Her response was simple. “Acknowledge that you don’t have all the answers. Be open to hearing things that you might not want to hear. Be their constant advocate. Keep copious notes about behavior patterns. Be present, both physically and mentally at all medical appointments. If you disagree with a doctor, don’t take “no” for an answer. Get second opinions. Research and look for help on social media boards. Knowing what you see today is not what the future looks like. And, most importantly, trust your gut. It might be scary initially, but no one knows your child like you do.”
Whether your child is neurodivergent or neurotypical, we all want the best for them. Be mindful of who your child is, and not who you want them to be. After learning how to help Jon so many years ago, my way of contributing is to write stories advocating for acceptance of the neurodivergent. For Beth, it's to be that person at the other end of the phone or keyboard. We both, however, have the same mission: to let you know you are not alone.