Keep Rockin’ Cleveland 2024 Conference - Join us June 13th-15th - Learn more and register at this link.

Blog

CDKL5 Spotlight on Ryan!

It’s time for our next CDKL5 spotlight—meet Ryan! Many thanks to Ryan’s mom Megan for taking the time to answer our questions, they are worth the read!

What sort of therapies has Ryan done?

Ryan started with physical therapy around his first birthday, and since then we have added OT and Speech both in school and in a private clinic setting. He also receives vision therapy. We have been incredibly fortunate to have found really innovative therapists who see Ryan’s potential and are patient with him as we work towards goals.

How do his recent accomplishments make you feel as a parent?

Obviously, my husband and I are proud of all our kids’ accomplishments. It is an amazing experience to watch any child grow, learn and develop. Because of Ryan’s challenges, though, I think the inchstones he achieves are felt more intensely and his accomplishments truly impact more people. We have extended family and friends who comment to me with regularity the pride they feel when I share Ryan’s accomplishments. Ryan has to work harder than our other two kids and while I would never diminish their accomplishments, the entire family celebrates big time when Ryan pushes through and masters a new skill.

What is your overall perspective about Ryan’s diagnosis?

I feel like the sky is the limit. I challenge anyone who tries to limit Ryan’s growth and development by asking: What if he can? I refuse to listen to any negativity where Ryan is concerned. The truth of the matter is – enough isn’t known about CDKL5 yet to say anything as an absolute. We are fortunate to have access to top tier healthcare and to have resources to allow us to push him with private therapy in addition to what he receives at school. I have a positive outlook, and Ryan continues to surprise and delight us every single day. I have no doubt that he has a bright future and that he will write his own story.

What types of therapies does Ryan respond to best?

That is a tough question to answer as it really depends on the day and Ryan’s mood! Overall, we have seen the greatest gains in gross motor skills (he can walk and is learning to ascend and descend stairs with assistance), but Ryan is also learning to self-feed with a fork and drink from a lidded cup. Communication has been a constant struggle and the area where we have seen the slowest growth, but progress is still there if you are patient and look hard enough.

What are some things you do at home to help Ryan?

We work on climbing stairs daily – which benefits both Ryan and his caregivers (less lifting!). We encourage vocalization from him as you never know what can lead to the formation of words. And we are constantly reading about new therapy strategies and treatment options and talking to his teachers, therapists and doctors about ways to challenge him and help him be the best version of Ryan that he can be.

Do you have any advice for parents of kids that were recently diagnosed?

Ryan’s diagnosis was a bleak time for me as his mom. It felt like a death sentence in so many ways, and I spent a lot of time mourning the loss of the child I felt like I “should” have had. It took me a long time to realize that even though the period of mourning was important for my own emotional health, that I couldn’t allow it to consume me. I was missing out on the wonderful person Ryan is. The diagnosis really became a lifeline for me personally, since it gave us a community. And that community not only introduced me to some of the most amazing, selfless, devoted people I have ever met, but it also gave me renewed hope and energy. I have since thrown myself into advocacy and fundraising for CDKL5 and for all children with special needs.

It was also very easy to assume – incorrectly – that our other two kids would suffer because of Ryan’s diagnosis, and the extra attention and care he requires. The opposite is actually true: our two older children are more patient, more compassionate and simply kinder because of Ryan’s diagnosis. We chose to involve them as much as possible from the earliest point, and I firmly believe our family has only benefited from that decision.

Ryan’s diagnosis literally changed the trajectory of our lives, but not in the negative way I think most people expect. I feel fortunate and honored to be Ryan’s mom, and to be part of this journey with him and all the other CDKL5 families in our community. Silver linings are always there if you allow yourself to see them.