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Spotlight on Cooking Independently!

Jennifer Sills • Aug 23, 2018
The Color Coded Chef in action

Today we are featuring an OCNDS Parent, Terri Jordan, who created an amazing product to enable her son and individuals like him with unique needs to cook independently and be more self sufficient. This is one of our goals at CSNK2A1 Foundation to help those affected with OCNDS live their happiest, most independent lives possible. We are grateful to have her as a member of our community. Read more about why she created this innovative product below. Also visit her website at www.thecolorcodedchef.com for more information.


Use the Code CSNK2A1 at check out and Color Coded Chef will donate 10% of proceeds to CSNK2A1 Foundation.


Happy cooking! Happy eating! Happy, independent children!

“When I first came up with the idea for The Color-Coded Chef, I wasn’t trying to start a business. I was simply being a mom and looking for ways to give my son more independence. I knew that his disability would likely mean both developmental delays and less freedom in how he lives his life.


As a parent, I’d gathered as much information as possible, navigating appointments, prioritizing different pieces of expertise, and sometimes struggling with information overload. After the flurry of tests and doctor visits, I had one clear desire: to help my son achieve the happiest, most independent life possible.


Always taking an active role in his development meant looking outside the scheduled meetings and activities for additional possibilities for him.


Cooking is an activity that is filled with possibilities: enjoying good meals, a sense of accomplishment, shared fellowship, and control over our nutrition. Plus, cooking involves many important skills—skills I wanted my son to learn.


Because of my son’s unique needs, I couldn’t count on the standard cooking utensils. However, I could envision tools that wouldn’t be so limited.


My son has felt a surge of pride at making food so delicious people take second helpings. He has contributed to the nourishment and enjoyment of our family. He loves it when his food appears on the table and everyone comments on how good it tastes.


As I embarked on this journey, I shared my vision and the response was nothing short of overwhelmingly positive, from people from many backgrounds and circumstances. I realized that so many people are left out of the way our society teaches and approaches cooking.


From young children who want to safely learn cooking to caregivers of people struggling with dementia, The Color-Coded Chef rescues the art of cooking from the constraints of reading, cognitive abilities, fine motor skills, math, steady hands, and the many other unnecessary limitations.


No matter what their situation, everyone enjoys of sharing meals with their loved ones. At The Color-Coded Chef, we are proud to help make that possible.”

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Newborn Genetic Screenings

The Power of Newborn Genetic Screenings: How Newborn Genetic Screenings Can Change the Diagnosis

By Penelope Gatlin • 05 Oct, 2023
By Penelope Gatlin October 2023 When our son was born in 2012, he was hypotonic, severely jaundiced, had feeding difficulties and features such as epicanthic folds and small low set ears. We were told immediately that doctors had suspicions of a genetic syndrome. At that time, genetic testing was limited and once abnormal karyotype, Trisomy 21, and Fragile X were ruled out, we left the hospital with an 8 day old and no diagnosis. While no testing was available at that time to identify the ultra-rare syndrome my child had, because it wouldn’t even be identified until 4 years later, I can only imagine the difference it would have made to our journey to have such an answer sooner. Instead, we were unprepared and actually unaware that just because a diagnosis hadn’t been made then that it didn’t mean there wasn’t in fact a rare disease present. Instead, we dealt with issues as they came and worried and wondered what would be next. From feeding issues and reflux and constipation, to low muscle tone and delayed walking, to speech delay, social and emotional delays, toileting delays, diagnoses of developmental delay, anxiety, situational mutism, sensory processing disorder, and autism, until finally genetic testing that revealed the diagnosis that we’d waited 7 years to find out. While receiving a diagnosis can seem scary, not having an answer but knowing there must be one is even more so. In 2019, the day I clicked onto the portal to see the test results, the largest word on the page was POSITIVE. My heart stopped for a second. For the first time, I read the words “Okur-Chung Neurodevelopmental Disorder.” A roller coaster of emotions ensued, including sadness that we hadn’t known this from birth because it would have made us as parents more prepared, and given us more understanding about what might arise next. Relief that we had an answer, grateful that this syndrome had been identified and that he was among one of the first hundred diagnosed with it in the world, and glad we had the privilege to have access to the testing. Excitement that we can participate in future research. Fright that there’s so much we don’t know about OCNDS, and happiness that there is something that we do. A feeling that we are no longer shooting in the dark and have a small but supportive community to rely on and learn from. I am hopeful that one day, all newborns with features like my child will be tested at birth, so parents can have access to the answers, support, and interventions and therapies that can best help their child as soon as possible.
Autism Diagnosis

Why I Should Have Gotten the Autism Diagnosis for My Child Early On (or Why I Did Not)

By Terri Jordan • 23 Aug, 2023
For 16 years, my child displayed numerous symptoms that left us searching for answers, but a genetic diagnosis remained elusive. I considered having my child evaluated for autism to shed light on their situation. However, when I reached out to teachers, doctors, and therapists, I received frustrating responses: “Your child is too friendly to be autistic.” This statement made me doubt the possibility of autism because my child was sociable. “Your child can transition from one activity to another – they are not autistic.” Hearing this, I questioned whether my child’s ability to shift activities invalidated the need for an autism evaluation. “Your child can look me in the eye and answer questions – they are not autistic.” Observations like this made me second-guess the idea of autism, even though my child faced various challenges. “Getting a diagnosis that does not apply to your child would be a big waste of money.” Despite my persistent concerns, this cautionary advice about the evaluation costs left me hesitant. We finally pursued an evaluation when my son turned 20, and it confirmed that he is indeed on the autism spectrum (severe side). Looking back, I regret not taking this step sooner. I should have pursued the autism diagnosis before we received the genetic diagnosis. There are several benefits we could have gained as a family if we had pursued an early diagnosis: “Early Support Is Crucial:” I now realize that early intervention could profoundly impact my child’s development. We could have accessed the right services and therapies much earlier with a diagnosis. “Understanding My Child Better:” I struggled to comprehend my child’s behaviors and communication difficulties. An earlier diagnosis could have provided insights into their unique needs and thought processes. The education could also help me explain how to react to my child’s behavior to family members. “Tailored Guidance and Resources:” A diagnosis could have opened doors to specialized resources and guidance, enabling me to provide the best possible support for my child. “Connecting with Others:” Being part of the autism community might have connected us with other parents who understand our experiences. Sharing and learning from each other could have been invaluable. “Planning for the Future:” Knowing more about my child’s strengths and challenges could have helped me better plan their future, including education, career, and overall well-being. Depending on your location, many states offer funding and support if your child has an autism diagnosis. I wish I listened to my voice instead of being swayed by experts who didn’t fully understand my child’s situation. Ultimately, I know this decision is significant, requiring careful consideration by parents. Looking back, I wish I had trusted my instincts and sought an evaluation sooner to improve my child’s life.
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