This Never Quit story is not about me it is about the most determined person I know, my wife Dana with whom I just shared our 30th wedding anniversary. I have watched this women demonstrate this for over 27 years, and to articulate how and why I need to go back to the early years. We are proud parents of 2 wonderful children each unique and special. Our eldest Sarah was born in ’91 and a wonderful vibrant little girl who has grown into a smart and independent young woman. Our son Shane was born in ’92 a year and 3 days apart, Irish twins but that is a separate story :).
Life was awesome, young family going through normal new family stuff when my wife started to have concerns on the development of our son, she was concerned that his speech was not developing as it should. I shrugged it all off to having a rambunctious older sister for entertainment, ear infections, and other normal developmental delays. My wife was tenacious continuing to push the doctors and professionals, and it clicked for me when I was watching TV and ESPN has a special about a baseball pitcher who’s son was autistic and would line up matchbox cars. I looked over at my son who I was playing with and he was doing the same. The similarities and the voice of my wife over the last months rang in my ears, the tears flowed.
She pushed for specialists, evaluations, testing, and diagnosis. These were tough months as we both immersed ourselves in learning about what this was, blaming ourselves, as he continued to struggle, and fall farther and farther away. She became a pit bull in the best way, she locked her intellectual jaws around learning what the best treatments and educational philosophies that could benefit our boy. She challenged the school system(they are on the hook for $$ until he became an adult), she challenged the doctors, she challenged me and the family. She created an educational system in our house dedicated to the retraining and relearning of all behaviors needed for him to learn, hiring, staffing, and training.
We often had to battle the school system, and she was often presented with logic and rationalization by many including me, be she always led with hope and potential. She used me as the hammer as needed to push, sometimes in IEP meetings, sometimes with lawyers, sometimes with family. She led, I followed, she never stopped looking for possibilities, many were complete failures and pretty weird, but we did them with hope. She engaged with the best neurologists in Boston, the best in Gastroenterologist in Boston, these doctors knew her by name, and wrote letters for her to use with the schools for the benefit of our son.
Over time diet and eating became a consistent focal point of his development, balanced with constant medications and drugs, that she constantly tried to avoid or find alternatives. This also aligned with a new passion for her body building and lifting. At 40 years old she quit her full time job and went back to college to become a Registered Dietitian with the hope of being able to learn what she could do to help our son, help us, and help others. She graduated, executed her internship and started a new career all while continuing for focus on our sons development and potential. We moved to California with the hope of there being more opportunities for our now adult son to move into society and contribute. She again led the way and moved bureaucracy to make this happen, our son now works three days a week at Trader Joe’s (with a support person) and they love him. He spends 5 days a week in the community between work and various group activities, and none of this would be possible without her mindset of never quit, never giving up. He is now entering a new chapter and she is re-investing herself to find what will be his long term care with the expectation that he greatly outlives us without putting burden on others. This is very daunting to me, and she is taking this on as she has all other challenges with the love, passion, and tenacity. I am confident she will find the right path for us to follow.
We have been married for 30 years, and for parents of special needs child that is rare. We have a very wonderful and independent 28 year old daughter who did not have a normal upbringing with all that went on with our son. We have a an amazing 27 year old son, who has come so far from where he was. He could not have gotten here without all of us and all of his family, but we could not have helped with out the leadership and determination of my wife and their mother.