Karsen Grey is now 5 years old and was born in Columbus, Ohio. We first noticed some developmental delays with him around a year old and at that time, we connected with our county’s program for such delays and began our journey with specialists. Karsen was diagnosed with 22q.11 Deletion Syndrome around age 2 ½ after some genetic testing. After that, Karsen underwent several other tests to rule out other common medical conditions that have been found with this syndrome. Time and time again, we consider ourselves the lucky ones in that Karsen has seemingly dodged some of the more health-related serious conditions that tend to be common with 22q. For Karsen, the biggest challenges have been speech delays, motor delays, and a decreased immune system. We’re still figuring out Karsen’s cognitive function day by day, as his expressive speech and language delay make it difficult to ascertain what he knows, but over and over he shows us that he does understand more than we think.
Karsen attends a public preschool that is specifically designed and intermingled with typically developing children. This has been wonderful for Karsen for both his academic and social development. Karsen receives physical, occupational, and speech therapies during school hours as well as private speech therapy. He loves school, and we feel fortunate that we live in a community with an excellent public school system with fantastic teachers and therapists. Karsen also annually sees the team of specialists that encompass the 22q Center at Nationwide Children’s Hospital here in Columbus. Some fly in from all over the country for this team that we have right in our backyard. We are so incredibly blessed to have this village so close to us to help Karsen grow and learn to the best of his abilities.
Karsen’s favorite thing to do is play with his cars and trucks, he builds roads and bridges, complete with road signs and a stoplight, and pretend plays. We are starting to see his imagination emerge with toys and role-playing, which is fun and hilarious! The pandemic has paused any extracurricular activities for Karsen. Being mindful of his immune function and concern for how his body would react to Covid, we have been leery of including Karsen in large group sports and activities. We’re hopeful that we are approaching some level of control with this virus and will be soon able to get Karsen involved in something fun outside of school, therapy, and home play.
Sure, having a child with different abilities has its hurdles, but also what comes with it are many, many blessings! We, as a family, have learned to slow down and celebrate the small things. We waited 3 years for Karsen to say his first word, and it came on Christmas Eve 2019 when he uttered “Mama” for the very first time. Talk about the best Christmas present ever!
Overall, Karsen is a funny and happy kid! He has a strong-willed personality, which at times will frustrate him when his ideas do not align with others’ plans, but we anticipate this trait will push him through any challenges that he may face in his lifetime. As for my husband and myself, all we wish for our children’s futures is for them to be happy and content with their life. We have started building the blocks for this and are hopeful that Karsen grows to be a happy adult, with a fulfilling and meaningful life ahead.
My advice to any parent just learning of his or her child being diagnosed with 22q is to connect with other parents alike, whether that’s in-person or online support groups, social media, etc. One of the greatest gifts through this journey is to walk into a room and have everyone in that room understand you without you having to say a word. The 22q communities across the world are filled with some of the most incredible people I’ve ever met. And with that, we are truly the lucky ones!