Friday, October 06, 2017

Special Needs Spotlight || Colton

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Hey there! My name is Jackie and my husband, Patrick, and I were born and raised in Texas and are high school sweethearts. We both turned 30 years old this year and are secretly grieving the loss of our twenties, but also loving the slow growth into maturity and confidence that our new age brings. I grew up with a younger brother, diagnosed with Autism. Patrick and I welcomed our first born son, Colton, in January 2013! At the age of 2 years old, he was diagnosed with DYRK1A Syndrome after extensive genetic testing. Our daughter joined our family in early 2017. We have two fluffy golden retrievers who are great with our kiddos. 


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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.


Miggy: How can people best approach or respond to Colton? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Jackie: I love it when people address Colton like they would a typical child. Like, “Hey Colton, how was your day?” but what I want them to understand is that they won’t get a typical response and they may not even get eye contact or a glance. We try to acknowledge him in that way in our home, without badgering him repeatedly to get some type of response. As the children in our community get older, we have received our first couple of innocent comments about Colton, like “He doesn’t talk to me.” or “Why won’t he look at me?” As these instances become more common, myself and my friends will likely start to have harder conversations with Colton’s friends about how everyone is created with different abilities and explaining some of Colton’s differences.

Miggy: What is the biggest lesson you’ve learned since becoming Colton's mom? How has this been informed by your brother and your experience being a special needs sister?


Jackie: The biggest lesson I’ve learned is that just because there are a lot of hard moments about being a special needs parent, it doesn’t mean there won’t be special ones too. I’ve seen Colton’s face light up when I pick him up from school and I’ve seen him belly laugh over something silly. I’ve watched him run into his daddy’s arms and I’ve watched as he joyfully chased our dogs around the living room. I have several wonderful memories of my childhood that revolve around my brother’s funny jokes or his latest obsession. We have family inside jokes about road trips we took and are constantly quizzing him on events from the past, amazed by his memory. There were certainly hard moments, but I’m choosing to remember the special ones.


Miggy: Tell us something you love about Colton. A special story, a personality trait or just something others might not know.

Jackie: I love Colton's laugh! He loves to snuggle and tickle and be silly, especially with his daddy. If my husband is on a business trip and Colton hears his voice on FaceTime, he will come running to the phone and will give the biggest smiles you've ever seen.


Miggy: If you could say something to the mom who just starting on this journey of special needs, what would you say?

Jackie: You are not alone, I promise. Find a support group! Make time to talk with other parents in a similar situation. It's therapeutic to say out loud that this is hard and have someone understand you on a deeper level. Community and mom's support groups have made all the difference in my world. 

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Jackie thank you so much for sharing your story and your beautiful family with us today. I'm glad you were frank in saying that you continue the grieving cycle on a daily basis, while still loving Colton for exactly who he is. It's a strange thing to hold two opposing views in your heart at the same time, but the older I get the more frequently it happens. Plus, as much as I advocate for disability and want people to see the positive side of it, the truth is no two situations are alike and there are certainly syndromes and conditions that bring more challenges and stress than others and it's important to acknowledge that as well. So again, thank you for your honesty. And your advice to find a group or someone who understands on a deeper level is an important lifeline to have. The phrase "it takes a village" is never more true than when raising a special needs child. Thanks again Jackie and best of luck to you and your family. 

You guys we've got some great spotlights coming up this month and next so stay tuned! I love it when I have so many great people reaching out to share their story. As always if you or someone you know would like to participate in the special needs spotlight series please email me at thislittlemiggy at gmail dot com. 

Happy Fall everyone. Have a great weekend!
XO, 

1 comment:

  1. This is to Jackie: Has anyone suggested getting an iPad with a speech app for Colton? That might expand his communicative options significantly.

    Dana Nieder of 'Uncommon Sense' gave her NT younger son one as a toddler to keep him from playing with his sister's dedicated talker, and he was able to make a lot of use of it in his own way, so it's something to think about. Just sayin'.

    http://niederfamily.blogspot.com/

    ReplyDelete