The "About Us" That Isn't

Thomas is our most joyful, spiritual and faith-filled child and his four older siblings would totally agree with that assessment.  He is everyone’s friend.

He was born Luis Alejandro Arias Maximo in Aculco, State of Mexico.  We met Thomas after he had been admitted to the children’s hospital in Mexico City for treatment of chronic diarrhea.  At the age of four months he weighed less than seven pounds and looked like an old man with knobby knees.  After five months in a hospital, two operations, lots of time in an ICU and almost nightly visits from our family, Thomas came to live with us and has never looked back.  He spent the next two years with us as we worked on adopting him.  

Thomas quickly adapted to his new life and began the delayed journey of a toddler.  At nine months he did daily sit-ups with his father and quickly learned to sit on his own.  He slowly began exploring the world around him and we counted every smile he gave us.  Because of the malnourishment his doctor warned us that there may be some delays in movement and speech.  Being pushy parents we worked with him and found an exceptional physical therapist who helped loosen up the scar tissue from his early surgeries that hampered his movement.  Walking took a bit of extra time, but he was mobile and speaking some by the time we left Mexico.  He heard Spanish and English and understood both languages.  

Just after his third birthday we moved to Haiti.  He attended a preschool there for two years in preparation for kindergarten.  While the other four-year-olds worked on English and French, Thomas’ teacher concentrated on English with him.  One day he walked into the classroom, pointed to a red ball and said, “La balle est rouge”.  The startled teacher realized that he had been absorbing French without any formal instruction.  Thomas participated with his classmates in all their activities and particularly enjoyed the times he could be in programs for the parents.   

In the summer following his fifth birthday we returned to northern Virginia and enrolled Thomas in kindergarten.  He happily went off on the bus every morning and was lauded for being the first in his class to be able to say the pledge of allegiance by himself.  At the time the teacher let us know that he was missing some skills and often laid down on the floor as the others sat there listening to the teacher.  It was at this point that we visited the experts at Walter Reed Army Hospital, had him tested and found that he had a genetic disorder called Fragile X.  His diagnosis was confirmed by the Fragile X specialist at Johns Hopkins University Medical Center.  At that time the doctor there commented that Thomas was way ahead of his peers who were also diagnosed was full-expression Fragile X.  He told us to keep doing whatever we were doing.  We promised to keep pushing.

We as a family were challenged with finding our way forward given this unexpected diagnosis.  Proper and adequate schooling were essential to helping Thomas find his niche in this life as well as his integration into the everyday life that any child would want.  It was a constant concern as we watched Thomas move through his school years.  It became a battle to have Thomas integrated into regular classroom activities, even for a part of the day.  The school system at one point wanted to put him into a windowless room with students who did not speak much.  Only minimal instruction was given.  Thomas has a light that shone brightly each and every day.  He brought joy to each and every person with whom he interacted.  In order to keep his light burning ever brighter we decided to move to the next county when we were blessed to meet the wonderful woman who would be Thomas’ teacher in seventh grade.  While Thomas was not adept at reading and writing, he was certainly open to learning new things.  He is gifted with the ability to learn orally, as evidenced by his facility with foreign languages.  Thomas participated in history and science classes as well as physical education with his contemporaries.  This opportunity was very important because he became a part of the class, not separated from his colleagues because he was not able to work at their level.  

When Thomas entered high school he became further integrated into the school body, not in academic pursuits, but in the overall activities with his classmates.  He was one of the managers for football, basketball, and soccer each of his four years.  He rarely came home after school participating in practices and attending the games whether at home or away.  His friends treated him as an equal yet took into account his special needs.  What more could a parent ask for!  During his senior year he was chosen as Mr. Touchdown by a vote of his classmates as he was the most popular football player.  What an honor for Thomas and what an acknowledgement of his integration into the wider community.  Even now, over a decade after his graduation, we often meet someone who remembers Thomas.

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Although our four older children were grown and living outside our home when Thomas joined the family, they were always involved with Thomas, supporting him and loving him.  As a family we have grown together because of Thomas.  He has introduced us to a wide range of individuals and organizations that we would never have met without him.  As we became more involved with these groups we saw the need to provide neurodiverse individuals and those with other special needs with meaningful employment.  Because of Thomas and his friends we have set up a nonprofit, View of Heaven Farm, dedicated to providing that employment.  While we are in the beginning phase of development, it wouldn’t have happened without Thomas.  

As stated above, Thomas is our most spiritual, faith-filled child.  He is always praying for others and remembers those who have asked for our prayers.  And he is always reminding us of those who need our prayers, whether they are near, like an aging neighbor, or far away, like a priest friend in Haiti.  He avidly watches the monks of Holy Cross Abbey during morning prayers and then evening prayers to close out his day.  He loves the monks and knows when one is not at prayer.  He is at the ready to pray a rosary which is a wonderful reminder to his parents to take a step back from life’s activities and pray.    

Joy radiates from Thomas.  He has never met a person that he does not like and counts everyone who crosses his path as a friend.  He loves going to work and getting to see his friends there.  He is very verbal and will put a smile on his colleagues' faces very quickly.  

Looking back over the years it was probably very good that we did not have Thomas’ diagnosis early on.  We treated him just as we did our first four children, expecting him to take steps forward in life, learning and participating along the way.  We like to say that we were pushy parents, holding him to the same expectations as we did with our first four children.  For other parents who have a Fragile X child we would say, “keep on trying”.  Each child has their gifts and we need to help them find those gifts.  And as we do, they help us find ours.