I never thought a diagnosis could bring me comfort after our daughter, Claire, was diagnosed with cystic fibrosis (CF) at 3 weeks old, which shattered me. But that is exactly what happened when our son, Connor, was recently diagnosed with attention-deficit/hyperactivity disorder at the age of 6.
I had suspected for years that he had ADHD, and when it was finally confirmed, I was relieved. I could finally get him help and formulate a plan after years of suffering in silence.
Our journey to our son’s diagnosis was much more nuanced than our daughter’s. As an attorney in educational law, I had read hundreds of psychological reports discussing an array of student disabilities in my career. Reading these reports gave me an idea of the types of behaviors and symptoms I should be looking for. My son’s behaviors mirrored so many of those in the reports about ADHD.
Finding our path
Actually obtaining an ADHD diagnosis, however, was difficult. A lot of pediatricians, including our children’s, won’t definitively diagnose it or refer you to a specialist until the age of 5 or 6. So we waited, which was the hardest part. I was juggling being a new cystic fibrosis mother and dealing with my other child’s unique needs. People often dismissed me as just a tired mom who had a “hyper” child and another one with CF. But I knew there was more to it.
All I wanted was some direction and guidance. No one took me seriously, and I couldn’t access any resources, such as school-based accommodations. I read articles and books late into the night to try to understand ADHD, much like I had when I was learning about cystic fibrosis. I spent so much time exhausted and frustrated that no one understood what I was dealing with.
The two disabilities are very different. Care for a cystic fibrosis child is more medical in nature, while care for an ADHD child is more behaviorally focused. Both require unique approaches based on how symptoms manifest. I have adapted pretty well to the CF care routine because I thrive on structure and planning. But ADHD management has been a different story.
Two worlds colliding
I could manage my daughter’s CF care on its own. But the combination of her intricate care and our son’s needs sent me over the edge. Before we had the support that came with my son’s diagnosis, he was having behavioral meltdowns every day. They left me completely drained and feeling helpless. It also directly affected how I cared for our daughter, who is now 4.
I remember nights when I was home alone with the kids trying to do my daughter’s breathing treatments while my screaming son threw things around his room. I didn’t understand why I was given the caregiver role of two children with two very different and challenging diagnoses. Some days I still don’t understand.
My son’s course of treatment differs from our daughter’s. I try to approach them both the same way by being proactive and staying on top of their care. We have more doctor appointments now, more tests, and more medication in our home, but overall, life is infinitely better.
It’s hard to believe after Claire’s devastating diagnosis that I would ever find peace in such a scenario. But our son’s diagnosis did just that.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.