He’s Got That Something Extra

1462362844960Brian’s got that something extra, genetically speaking. Each of his cells has an extra copy of Chromosome 21, aka Down syndrome ( DS), or Trisomy 21, and this has and always will effect the way Brian learns, communicates, and experiences the world. Brian also has autism, and although there is not a genetic difference correlated with it (at least for now), autism has also effected Brian in the previously aforementioned ways. Children with DS and autism (dual diagnosis) are unique and very different than their peers with DS alone, or children with just autism, particularly as it pertains to speech (or lack there of), socialization, behavior, and academics. Often children with the dual dignosis struggle more in these areas: it’s like another layer of challenges to work through, but thankfully, teaching methods like ABA (Applied Behavioral Analysis) break down academic skills, activities of daily living, and behavioral skills into simple steps that can be taught and learned through positive reinforcement. All of these skills  can be recorded, measured, and analyzed for progress over time, like it’s done at Brian’s ABA school. We also have a home ABA program through our medical insurance, where therapists come after school for a couple of hours to reinforce academic and activities of daily living skills. All of the above is just one division of “Team Brian” that is involved in The Daily Operations and will be until Brian finishes his education at 21 years old. It’s hard to believe that Brian is now more than halfway done with his formal education. It just seems like yesterday when he started early intervention at his center-based program at 16 months old…Twenty one will arrive too quickly and the future for Brian and other post-graduate special needs students is sometimes scary to contemplate. Fortunately , post-graduate programs are emerging  and the resources / demand for such programs are both huge and extremely necessary.

Brian’s got that something extra, medically speaking as well.  Our first introduction to The Medical Division of Team Brian, was when Brian was diagnosed with a hole in his heart in-utero at 4 months old. Bedrest followed when I was 7 months pregnant  (in the hospital), then Brian was born one month later at 36 weeks. Open heart surgery took place when Brian was 3 months old. It was one of the most scariest and difficult, yet victorious of times, as Brian emerged stronger than before. His strong spirit would serve him well going forward and still does today.
Over the next 12+ plus years, Brian’s additional  medical procedures have included an orchiopexy, ear tubes, and eye surgery. Brian has also worn various types of orthotics since age 2, eye glasses, and more recently, a back brace for scoliosis. He sees his local pediatrician and 7 other physician specialists, plus the dentist. I’m glad that my 8 years of previous pharmaceutical sales experience has come in handy when I speak with Brian’s doctors today. At least I have some basic background knowledge on disease states and treatments. I have also  learned to do my research and write down my questions, sometimes even recording the more extended specialist visits. It really does take a huge medical village to keep our children healthy!  We are especially grateful for those doctors and their staff who really “get” our kids, listen, have compassion, and offer effective solutions. Brian’s medical experiences have been overall very positive.

Finally, Brian’s got that something extra in his personality and spirit that makes him so special and unique, just like each of one of us.  He loves to give and receive “death grip” hugs. His smile is trademark and causes the world to smile with him. He loves to giggle with a hearty belly laugh.  He is funny, trusting, pure, and kind. He is a handful, but is so worth every effort. He is our hero and deserves a purple heart for his acts of courage with every challenge that he faces. He never gives up and encourages us to do the same.  He lives life fully in the moment, a lesson that I need to keep learning. Brian’s journey is not an easy one, but is filled with hope and blessings in the people, places, and things that we have encountered along the way with him,  all  because of that ” something extra”. He’s  definitely a keeper! 🙂

Until next time…..thanks for reading!

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