Written by Chase's Mom Nancy

A beautiful baby boy was born on June 3, 2011 on Long Island, NY.  He was 3 weeks early and just shy of 6 lbs.  Chase had jaundice and stayed in the hospital an extra day, but everything else looked great!  He was a very good baby who barely cried and always smiled. When we first mentioned to the pediatrician that our baby didn’t cry a lot, the pediatrician told us to consider ourselves lucky.  He was our first child so everything was a learning experience. 

As he got a little older, he didn’t walk when other babies started walking and didn’t make sounds like other babies, but rather screeched a lot.  When discussing our concerns again with the pediatrician, we were told everything was fine and all babies meet their milestones when they are ready. It wasn’t until his check up at 15 months old, when we met with a nurse practitioner who was concerned his head wasn’t growing the way it should be and noticed “something” and sent out for some blood work.   

On September 25, 2012, we received a call from our pediatrician that Chase’s blood work showed he has something called “Mosaic Down Syndrome”.  As a special education teacher for 11 years, I never heard of “Mosaic Down Syndrome”.  I knew what “Down Syndrome” was, but what was “Mosaic”?   What did that mean?  What did that mean for us as parents?  What did that mean for our child and for any future children we wanted to have?  

We quickly called and made appointments with every single specialist in the area to get him checked out. We also located a Facebook group called, “International Mosaic Down Syndrome Association” (IMDSA) where we spent hours on the phone talking to the President, Brandy.  She reassured us the baby we had on September 24th was still the same baby on September 25th and nothing had changed, except now we may need a few more doctor appointments and that we should look into getting him enrolled into early childhood intervention services so that he could continue to make progress. We spent many hours researching online.

Early childhood intervention started when Chase was 17 months old.  His services included physical therapy, speech and a special education teacher who came to our house 2-3 times a week.  During their visits, we kept wondering, “Will he ever walk?”, “Will he ever talk?”  He qualified later for occupational therapy.  We knew with all the support he was getting and the unconditional love from his family that he would make great strides and he did. 

Did he walk and talk at the same time as all my friends’ kids who were about the same age??  No, he didn’t, but he walked and talked when he was ready and at his own pace.  As parents, we learned never to compare him to anyone else, but to only compare him to himself and know that he will do everything everyone else did, just at his own pace. 

At 19 months old, Chase became a big brother to Zachary.  He loved touching him and helping feed him.  At 20 months old, Chase needed glasses for far sightedness.  That was a challenge, but he eventually realized the glasses helped him see better and he enjoyed wearing them!  We were told by the cardiologist he had a tiny hole in his heart to watch.  We followed up and finally got the great news that it closed on its own and he would no longer need to see the cardiologist.  

My husband Charlie and I decided we wanted more people to learn about “Mosaic Down Syndrome”.  We also wanted to raise money for IMDSA so they could do more research since they were so helpful to us in the beginning. We hosted a comedy night fundraiser for 6 years at Governor’s Comedy club in Bohemia to raise money for mDS.  We had a great turn out and lots of fun.  We even hosted a virtual comedy fundraiser during COVID. 

At age 3, Chase got on a mini school bus for the very first time and headed off to pre-school without us. He was in an integrated class with an aide.  He also got his related services at school.  

Chase needed ear tubes and his adenoids out, not once, but twice when he was 3 years old and then again at 5 years old.  At age 10, we said goodbye  to his Ear, Nose, & Throat doctor for the final time as everything looked good!  

Potty training was huge challenge.  We never thought it would happen.  Chase wanted no part of it. Honestly it wasn’t until he was ready right before he started Kindergarten that he finally became fully potty trained.  Another lesson for us was to never compare your child to other children and let your child lead the way of letting you know when they are ready!   You will get there, it just may take longer and that’s ok.  

Before Chase started Kindergarten, he was crowned “Little Mr. Holbrook” for a year at a local fair where he was in a contest against two other boys and had to answer questions on a stage in front of many people.  He did amazing answering the questions.  One of the questions he was asked at the contest was “What advice was given to him to prepare him for today’s contest?” He said, “He had to eat fruit.”  I suppose that was a good answer for a hot summer day in August.  Everyone laughed.

Chase started Kindergarten in an integrated classroom with an aide.  There were 27 students in the class with many of those students also having needs.  Academically, Chase was definitely ready for that placement, he knew his ABC’s, he could count, etc.  but behaviorally and socially it was a challenge and due to the large amount of students in the class, and other variables, his needs were not being met.  Chase wound up going to a smaller class and it made a world of difference. 

Chase loves being around people.  His grandparents are very special to him!  He enjoys going to their house to relax and hang out.  They have always been his number one fan. 

Chase loves all kinds of music and he loves our local radio station WBLI. One day when Chase was little, he was on the school bus and the bus driver was listening to WBLI and then she changed the radio station.  Chase came home from school crying. He was upset because of the bus driver changing the radio station. I reached out to WBLI to tell them what an impact they made on Chase and we got a private studio tour with the radio hosts, Syke and MJ.  

Chase tried karate class with his brother Zach.  He didn’t stick with it. He also tried music lessons and playing the drums.  He liked to play the drums on his own and not have to listen to the instructor to really learn.  Chase also took swim lessons.  

The summer before 3rd grade, our family moved to a new house.  This meant that there were going to be many new beginnings for Chase.  New school, new teachers, new friends, new bus, and even going on the big bus with his brother, Zach!!  Chase played soccer on weekends.  3rd grade came to a sudden end in March when COVID happened and everyone went virtual.  Chase did a great job navigating the iPads and Chromebooks and was a star virtual learner.  He quickly became independent with going on the meets and completing the assignments and never once complained.  

Chase graduated  from elementary school 3 years ago and in a blink of an eye he is about to graduate from middle school this June.  As Chase prepares for high school and beyond, we continue to support him every step of the way.  His biggest challenges are unstructured times and trying to gain attention from peers. He loves school and learning.  He is involved in two clubs, the Digital Media Club, which covers the school news.  His segment is either, “Restaurant Reviews” or “Would You Rather?”  He takes Spanish in school. More recently, he took online Hebrew lessons and had a Bar Mitzvah!  He loved Hebrew and did an amazing job at his service saying the prayers and singing the songs. 

Chase has a few close friends who he loves to chat with online and go the playground with. He wishes he had more friends, but they always say it’s about quality and not quantity and he definitely has quality friends.  We know he will continue to do amazing things and make everyone proud.