You’ve just received a CP diagnosis, and it’s really scary. Or maybe you’ve sort of known, but now it’s confirmed and formally in your child’s medical chart.
“Cerebral palsy.”
Take a deep breath. I promise, there are so many resources out there for you, and he/she is going to amaze you. Just wait.
My son was 4.5 months old and we were at a typical well check up together when I was given a piece of paper. Our pediatrician mentioned an appointment with neurology the following week and somehow between me comprehending what was happening and trying to juggle a crying baby, she was gone in flurry. It all happened so fast.
I looked down at the paper from my pediatrician. On it, there was a diagnosis of “spastic hemiplegia/cerebral palsy.” What? He has cerebral palsy? What does that mean? And instantly my mind started down the road of a thousand questions.
That’s actually how I found out my son had CP – from a piece of paper. A handout. An 8.5×11 inch piece of paper that changed everything.
For the parent who receives a CP diagnosis, or another diagnosis, or ANY diagnosis for their child, they deserve more than a handout and being ushered out the door. Our child is our world and you can’t send us home with a laundry list of questions because we panic, we google, we get misinformed from some article we read that causes us to stay up all night anxious and alone.
For CP moms out there, here are some questions to ask instead:
What is the name of the diagnosis (both its formal name and then any common names associated with it)? Tell it to me straight. I need to understand what this means and what the best and worse-case scenarios are.
Are there other therapies? I’m sure you’ll be setting me up with early intervention services for my child, but what other therapies are out there that may be beneficial for him? Have you seen any success with other children and this therapy? Speech therapy? Aqua therapy? Hippotherapy?
Are there books I can read? Are there books available on his diagnosis, or perhaps case studies that have shown an alternative therapy that may be of help to him? I’m open to anything and everything!
What about research studies? Are there any studies being conducted that my child may qualify for? I wasn’t told about this from a doctor, but I researched and found a university about three hours away from us that is enrolling kids under 24 months in a CP study to help them with their weaker side. I signed up my son immediately, and we go this September (it’s called Baby Champ for kids with hemiplegia) and is available in Columbus, Ohio and Roanoke, Virginia.
What about medical devices? Is there a piece of medical equipment that may help to make him more independent? My son met with a rehab specialist and she was able to put in an order for an AFO and SMO for him to walk. He is now taking steps supported!
Are there specialists and experts in this field? Do you know anyone who specializes in this particular type of diagnosis or disability that I should talk to? Should we visit another specialist office in town, or perhaps somewhere out of the state?
Are there any surgeries available? If surgery is an option, what type of surgery? Are there surgeons you’d recommend? Hospitals you’d recommend?
Is he comfortable? Is he in pain? Is there a medication or another treatment that may take away some of his pain?
Are there other resources in the community? Are there families who come together and share resources on this particular diagnosis? Sometimes the #1 thing to get you through a diagnosis is to connect with another family who understands exactly what you’re going through.
What can you tell me that I don’t know to ask? This can have many answers, but we don’t know what we don’t know. Many times, the doctors do, and will be able to give you additional information that you didn’t even know to ask.
I’ve met so many amazing children on this journey and it’s because those parents and those doctors didn’t give up and they kept fighting with everything they had to get those kids the best care possible.
Let’s keep up that fight – doctors, parents, family members, friends – let’s keep asking the questions and helping our kids because we’re a force that’s going to help the next generation forward, and we’re stronger together.
#cpawarenessmonth #cpstrong #cerebralpalsyCAN