Meghan Edmonds has finally gotten a diagnosis for her two year old son, Hart. She has been getting him treatment all over the country for his symptoms since he was born. Yesterday, on World Cerebral Palsy Day she announced on her blog that he was diagnosed with hypotonic Cerebral Palsy. Meghan has been amazingly positive when seeking help for her child. She been through many different therapies all over the country. Below is part of her story on finally getting a diagnosis. She feels relieved.
Hart is doing great which is why I told you about how far he’s come. In fact, I was surprised that he got the diagnosis of “hypotonic” (which means he has low muscle tone, or “floppy” limbs) because his limbs have always felt so stiff and hypERtonic to me. It’s important to understand that people with CP often have mixed muscle tone (hyper AND hypotonic muscles). His neurologist explained that probably due to all of his therapy his “stiff” muscles have become “less stiff” and now the main focus has shifted to his areas of low tone (like his core).
The Diagnosis Was A Relief To Meghan
Hallelujah! The therapy worked! Which is proof why early intervention is incredibly necessary for anyone who even suspects something might be atypical. If I hadn’t advocated for Hart he would’ve lost 16 months of therapy until he got his CP diagnosis. The younger the brain the more malleable it is and able to form new neuropathways that will be there for life.
Cerebral Palsy literally means “brain paralysis” which I find to be an exceedingly misleading and ridiculous designation. Hart’s brain isn’t paralyzed, but there are some areas of damage. CP quite simply manifests as a motor disorder. That’s it. Yep. It has nothing to do with cognitive function, hearing, etc (although these are deficits often found in people who have CP they are referred to as “comorbidities” and not CP by definition). You’ve seen Hart walk: he’s a wobbly Humpty Dumpty preschooler. What you’re seeing is his CP.
Hart’s new diagnosis really means nothing different and changes nothing. It just allows him to continue receiving the therapy he’s already getting. (And I will continue to adapt to his needs as they evolve and change. For instance our main concern at the moment is balance and marking areas of danger so he can train his brain to react to hazards in ways that don’t apply to you and me. Some other time I can go into this and other adaptive techniques I use to help his brain.) Hart will live a full, independent life. He will face challenges his siblings won’t and alternatively they will face challenges he won’t but we just don’t know what those are yet.