Special Needs Spotlight || Colton

Miggy: Hi Jackie and welcome. Thank you so much for sharing your experience both as a special needs sibling growing up and now as a special needs mom. Since you were raised with a special needs brother I’m curious to know what childhood was like for you growing up? How did your parents deal with having a son with special needs as well as managing a child who was typical? Is there something they did really well? Anything you wish they would have done differently?

Jackie: I am two years older than my brother, Connor, and overall my recollections of childhood are very positive. Only a few negative memories stand out, like that one screaming phase he went through and occasionally feeling like he got more attention than I did. Otherwise, I liked being his helper. I was an outgoing and talkative child, so apparently I did a lot of the talking FOR my younger brother. I remember my mom and dad telling me that I was not his 3rd parent, so to leave that job to the actual parents in our family. Although he did receive an Autism diagnosis at the age of 4, I never knew that until much later in life when we started talking more frankly about the realities of his future. As a kid, my parents just explained on an as-needed basis that, “he needs more help” or “he learns differently than you” and that was that. As a teenager, I started to really grasp that his future would look different than mine and started wondering what my role would be as his sister as we grew into adulthood.

I think the reality for a parent of a special needs child 25 years ago was drastically different than today. From my perspective, my parents had a second child with an unfamiliar diagnosis, and with little information and little support, they did the best they could. In their shoes, I would have done the same. Overall, I think growing up alongside Connor has allowed me to have a greater compassion for people of all abilities. Although I certainly never predicted I would also be a mother to a special needs individual, being a sibling first has equipped me in so many ways. Many wise people have told me that God has been preparing me to be Colton’s mom for my entire life. Today my brother is 27 years old and continues to live at home with my parents. He has found a community and a purpose at a work program for adults with disabilities called Brookwood in Georgetown, TX. This amazing program allows him to make friends and contribute to the community. Two of his favorite jobs are working the register in the gift shop and slinging clay on the pottery wheel!

Miggy: Fast forward several years and you have your first child. Can you take me back to the day you knew your son would have special needs? Was it before birth, shortly after birth, or sometime after that? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

Jackie: By Colton’s 9-Month well check appointment, he was not crawling or sitting independently, which was behind the average. When he was 10 months old, he had his first tonic-clonic seizure (at daycare, that was a very scary day). Around the age of 1, Colton wasn’t talking yet and then had his first ‘cluster’ of seizures. He had 4 tonic-clonic seizures in less than 48 hours, completely out of the blue. I think it was around that time that we really started to question if something bigger was going on, connecting the seizures and the developmental delays. Initially, we felt scared and worried about Colton’s overall health. Watching your child have a seizure is a horrible and helpless feeling. And the comparisons to your friends’ seemingly perfect babies can be a real mind game. Colton received an official diagnosis at the age of 2 and it provided the answers and explanations we had been looking for. Nowadays Colton’s seizures are well controlled with two different daily medications. We continue the grieving cycle on a daily basis, but more days than not are filled with acceptance and love for exactly who Colton is.

Miggy: Could you please educate us about your Colton‘s diagnosis and explain how his needs affect your day-to-day life?

Jackie: When Colton was 2 years old, we did whole exome sequencing genetic testing and finally received our answer. His results revealed a single mutation on the DYRK1A gene. As a generic term, we use “DYRK1A Syndrome” as the name of his diagnosis. We found support through a Facebook group of other families with a loved one affected by DYRK1A Syndrome and at the time we were Family #22 to join the group worldwide. Two years later, our group is well over 100 families now, spread all over the world. Finding a group with other DYRK1A kids and seeing the list of most common attributes was like reading a list of things describing Colton! The top characteristics include: intellectual disability, seizures, microcephaly (small head), delayed or absent speech, global developmental delay, autism like characteristics, trouble sleeping, unsteady gait, etc. In his four years of life, Colton has had three different types of seizures and right now he takes two different anti-epileptic drugs 3x a day to keep his seizures at bay. With this regimen, the seizures are well controlled and he averages about 1 seizure every few months. Colton is non-verbal, meaning he has zero words, and he mainly communicates by reaching for something he wants or by taking your hand and leading you somewhere. As his mama, I normally know what he wants or needs, but it’s frustrating for him to not be able to communicate. Colton is able to walk and run! However, he is markedly off balance and clumsy. Sometimes his muscles are incredibly rigid, other times his body is flimsy. He falls and trips often. (His first broken bone happened when his younger sister was only 6 days old!) Overall, Colton has significant cognitive delays, many of his abilities registering similar to that of a 1-year-old. On a typical day, Colton is able to express his interest and opinions in foods, toys, books and TV shows, but requires a significant amount of help in daily living skills like eating, dressing, diapering and staying safe from potential dangers. As husband and wife, Patrick and I do make it a priority to spend time with each other and other adults away from the kids, but finding and trusting a babysitter to care for his needs is no easy task. I rarely feel fully relaxed when I’m apart from Colton, concerned about seizures or his caregiver being able to understand his needs.

Miggy: What are the biggest worries you have for Colton? On the flip side, what are your hopes and dreams for him?

Jackie: My personality tends to lean towards thinking about the worst case scenarios. So often my fears and worries revolve around the “what ifs” of life. What if something happens to me and his dad? What if we run out of his seizure medicine? What if he outlives his sibling(s)? Most days I’m able to reign myself in to worry about TODAY and not to focus too much on the future. I’m comforted to know we are supported by a loving family and an even greater God who cares for Colton more than I can fathom. My hopes and dreams for Colton are for him to know love! I hope that one day he can comprehend that there’s a God who created him and loves him unconditionally. On this earth, I want him to experience love and support from his family. Ultimately, I would love for him to find joy in whatever interests him and gain some independence so he can experience life to the fullest that he is capable of doing.