CDKL5 Spotlight on Natalie!
We are happy to share another Cdkl5 Spotlight! Meet 12-year-old Natalie! Mom, Sandy, shares with us about her beautiful daughter.
Natalie received her CDKL5 Deficiency Disorder diagnosis at the age of 6 and she has done PT, OT, and Speech since the age of 4 months old. We have never taken a break. She receives services in school, but we have always done our own through a private center as well. When she was 4 months until about 2 years old, I had the PT do service in my home, because I thought it was important to use what we had already like steps, laundry baskets, etc. It made it easier to practice her exercises. From the time Nat was very young, we worked at home on skills. I remember teaching her to sit unassisted using a laundry basket, and working on tall kneeling using the stairs.
Natalie has done hippo-therapy since the age of 22 months old. She absolutely loves this therapy. For two years, I carried a blue peanut ball around with me to her older sibling’s activities, to help simulate the horse movement she got while riding to help build her core. When she was young, she rode twice a week, the last few years, she has changed to once a week.
Music therapy through a program called Kindermusik was something that she loved to do as well. In school, she receives services for the visually impaired and we have our own light box that we work with her to help her tracking and learn skills that help early reading. Natalie has never done swim “therapy” but does like to swim in the pool in the summer. Natalie also plays Miracle League baseball in the spring and summer in the City of Plymouth. She loves the social aspect of friends. We have just started Applied Behavior Analysis in home therapy three times a week. Natalie also has an adapted bike that she rides around the neighborhood with me running after her and she loves to go up to the Echo and say “Alessa,” which is her way to say Alexa, because she loves music. She has a swing in her bedroom that she loves to sit in and be calm.
Natalie’s accomplishments make me feel so hopeful and so grateful that I am the chosen one to be her mother.
She is the bravest, purest, most determined person I have ever met. Natalie has made me a better person, mother, and teacher. She never stops trying to learn. She has taught me and my children that unique is beautiful. My overall perspective about CDKL5 is that the whole world could learn from watching our families. The amount of love, courage, and hope that our families have is a lesson for the world. I believe our children were given to us to spread awareness and be the voice for those who don’t have one or someone to speak for them. I also believe our children can learn and reach milestones or goals. They need a strong village around them for support, and every very goal or milestone should be celebrated.
My advice to newly diagnosed families is to start therapies as soon as you are able. I believe in my heart that early intervention will help our children reach their maximum potential. If your child is an infant or toddler, be grateful that you were able to learn of this diagnosis early on. Our diagnosis came after many years of knowing there was more than just Cerebral Palsy.
We had to push for more testing.
Also, seek out a support group, or groups. One thing I do not do well with is to take time for yourself. Find a trusted person to watch your child. Speaking from personal experience, special needs parenting can be very stressful on a marriage if there are not breaks taken for each other. Lastly, stay as positive and hopeful as you can. There are amazing doctors, teachers, and professionals working hard to help our children and our families. I believe the future does hold a cure.
You can follow Natalie’s journey on her Facebook Natalie Hope’s Journey with CDKL5.