When I first started brainstorming ideas for this post, I had a few topics in mind. But as soon as I realized this was my post for March, my focus shifted. You see, March isn’t just the start of spring for us. It’s a month that holds so much significance. It’s become a time to celebrate and raise awareness for our son, and it’s a tradition we hold dear to our hearts.
In 2020, at the height of the COVID-19 pandemic, we received life-changing news: our son had been diagnosed with cerebral palsy, news which thrust our family into a rollercoaster life. As his mother, I feel it is my responsibility to spread awareness about a diagnosis I had such little information about in 2020, so I would like to share some of the most asked questions I get about my son.
Before I dive in, I want to express my heartfelt gratitude to ANYONE who takes the time to learn more about my son and his diagnosis. I feel like it is a responsibility I have to educate others. That said, there are moments when questions I receive may come across as rude or ignorant. I’ve seen parents react with frustration or anger in those situations. For me, though, what truly matters is the intent behind the questions. I believe that understanding someone’s genuine curiosity or concern can make all the difference in how we respond.
1. What is wrong with him?
I’m starting off with a question I get often. It’s one of those where the wording can sometimes come across as hurtful, but I truly believe most people just don’t know the right way to ask. To this question, I usually answer, “Oh, nothing is wrong with him. He has cerebral palsy.” I don’t think there is anything “wrong” with my son. He is perfect in his own way!
2. What is cerebral palsy?
Cerebral palsy, also called CP, is a disorder that affects muscle tone. Cerebral palsy can cause muscles to be too tight, too loose, or go back and forth between the two. In my son’s case, his muscle tone changes moment to moment, making medicating nearly impossible. CP is lifelong and cannot be cured. With therapies, medications, and sometimes surgery, it can be managed.
3. Does he go to school?
Yes. This year my son is in a general education classroom. We’ve been incredibly fortunate to have had amazing teachers throughout his journey. Sending him to a general education classroom was so scary, but he was put in the hands of one of the most patient and sweetest teachers. He was also given an amazing full-time aide, as well and the best resource team. I have so much appreciation for them!
4. Will he be able to walk?
One of the most infuriating things about cerebral palsy is how much uncertainty comes with the diagnosis. The true cause is unknown. A cure is unknown. The future is unknown. I certainly hope and pray the day will come where my son can live a more independent life. As of now however, he needs a good deal of assistance to walk, but continues to make improvements every day.
5. Does he go to therapy?
Oh, absolutely. We have been seeing his physical therapist since he was six-months-old (he is five-years-old now). He also sees an occupational therapist and speech therapist. He has recently begun a co-treatment plan, meaning an occupational and physical therapist work together with him. We have also worked on DMI (dynamic moment intervention) therapy. We have such an amazing therapy team for him. I am so grateful to all the ladies who’ve become like part of the family. I have to give them a lot of credit for the improvements my son has made.
6. When are you going to/will you have more kids?
Generally, I love to answer questions about my son, but this one stings a little. The short answer is, no we are not having more kids. This question is hard for me because I love the idea of my son having a sibling, but for many reasons, that would not be a wise decision for our family. Adding another child into our already crazy life would mean one of their needs would have to be set aside. We would rather be able to provide our son with the undivided attention and care he needs.
7. How old is he?
My son is in kindergarten. It is often assumed that he is younger than he is. He is small for his age as it has been a constant fight since birth for him to gain weight. He has grown a lot, but still measures small. It is also assumed that because of his disability, he is younger than he is. Although he can’t always articulate it, he is very smart and acts like other kids his age — the good and the bad.
Hopefully, some of these questions shine some light on my son and cerebral palsy. Again, I want to thank you for taking the time to learn about my son! I pray for a world that embraces understanding and compassion for those who are perceived as different. Taking the time to learn and open our hearts is one step closer to creating that world.
Much love, always!
