My son Jacob is a typical 17-year-old who was born with SA/CRS. He was not diagnosed until he was born, although we knew that he had clubbed feet and a short spine from different ultrasounds. He was born a healthy 7 lb, 11 oz and 17¾ inches long at 38 weeks. Jacob has had several orthopedic surgeries on his legs and feet over the years and a Mitrofanoff, bladder augment, and ACE (antegrade colonic enema ) procedure when he was 14 years old. Jacob uses forearm crutches to get around and a wheelchair for school and long distances.

 When Jacob was two years old, we found an occupational therapist that specialized in aquatic therapy. That was a total game changer for him. He actually learned to walk in the pool, and the exercises helped to improve his torticollis and scoliosis. We couldn’t believe how well his body did in the water compared with land therapy and how it helped with some of the sensory issues he was having as well. At first, he did not like getting his face wet at all, and it was very challenging for him, but after a few months, he would sit on the edge of the pool and jump in the water. His therapist taught him how to swim, blow bubbles in the water, float on his back, and so much more. We would take him two or three times a week, and it was so worth it. He still goes once a week until this day. It’s the best exercise! I highly recommend either aquatic therapy or swimming. Over the years, we have made so many friends and connections at therapy, and although many of the families and children we met did not have the same diagnoses as Jacob, we were all going through the same challenges, and we lifted each other up and helped one another.

 Now that my son is a teenager and soon to be a senior in high school (I still can’t believe it!), we are so very proud of the young man he has become. He’s learning to drive, has lots of close friends, and is looking forward to attending college when he graduates. He does not let his SA/CRS define who he is. While he was growing up, I always tried to teach him and his younger brother that we ALL have different abilities but that some are more obvious than others, and that’s ok. Because his condition is more noticeable, he’s gotten used to dealing with the stares and the questions and simply goes on with whatever he’s doing and doesn’t let it bother him. Since Jacob was very young, my husband and I would always tell him that he could do anything that anyone else did, just that he does them in his own way, and that’s what makes him so unique. We never made excuses for him and taught him to be independent and to always advocate for himself. I think he has taken that with him, and that makes me so happy to see. I am very excited to see what the future holds for him, and I pray that he continues to succeed and shine bright.