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Samuel has a really easy going personality and as a baby, he was “super easy.” Now at 17, Samuel is a fantastic traveler and loves meeting new people, trying new foods, being part of new cultures. “He is adventurous, yet mellow,” says his mother Betsy.
What amazes Samuel’s mother most about Samuel is his resilience, his sense of humor and his kindness through everything he has been through. “At every stage of his life, I have loved watching him grow and mature into a strong individual.”
Samuel loves hanging out with his friends. He has been friends with this group since kindergarten. Samuel will call friends when he has energy on the weekends. During the week, he needs to be well-rested and is usually in bed at 6:30 pm. “At Concord (NH) High School, Samuel has been involved in Unified Sports, the yearbook club, the Be the Change multicultural club, CHS Live (the school TV station) and the online student newspaper,” says his father Dan. He enjoys making films (perhaps in part because he ‘starred’ in his father’s 2008 film Including Samuel, for which he created an update in his own words on YouTube when he was 14). He also recently created his own award-winning documentary called Judith Heumann: Disability Rights Pioneer.
Samuel has always been fully included in school since an early age. In high school, Samuel’s strong sense of justice and righteous anger has become apparent. “He is angry that the high school bleachers aren’t safely accessible so he can sit with his friends.” With support from his parents, he wrote a letter to the coach and athletic trainer and explained the problem. They were very responsive and have come up with a solution- student seating is now possible at the ground level so any students can sit there.
Samuel’s parents learned about inclusion by going through the NH Leadership Series* when Samuel was young. “We never thought of anything else,” says Betsy. “He is bright and his teachers enjoy having him in class. We have to watch for fatigue.” One teacher said, “He is so much fun to have in class - and he is the first one to get my jokes.”
Samuel has a mitochondrial disorder on the 5th chain. The newborn screening was not done and so the diagnosis unfolded slowly. At 4 months, he was not hitting some of his milestones like using his hands. He was dropping weight. At 6 months he was significantly delayed and very skinny. And at 8 months, he was in a failure to thrive situation. “He was sick a lot and hardly eating,” says Betsy. At about a year old, he was diagnosed with cerebral palsy, which doctors said was likely caused by some sort of metabolic or mitochondrial disorder.
He saw a neurologist and began supplements which helped. However, even though he was nursing every two hours around the clock, he was still losing weight at 13 months of age. The supplements kicked in and really boosted his metabolic system and he had energy to start rolling over. At age 3, he had a G-tube placed and then his weight began to improve. It wasn’t until age 8 when a doctor in Atlanta did a live muscle biopsy that a definitive diagnosis of mitochondrial disorder was made.
The mitochondrial process is where nutrition is turned into energy. Betsy explains that there are 5 complexes in the chain and that they have narrowed his particular disorder down to Complex 5, which is not known well to researchers and scientists.
Samuel communicates in part by speaking, although it is difficult for him to move the muscles in his mouth easily. At home and school, he also uses a Tobii i12, which his family and support people program and populate with words and vocabulary he might need for specific classes, as well as with everyday words he might want to use. He reads whole words but has some challenges with reading due to his extra eye movements.
Betsy and Dan have said that if he ‘only’ had cerebral palsy, Samuel’s life and care would be a lot easier. The mitochondrial disorder has created health complications and fragility that compromise his health. His challenges right now medically include seizures which have increased lately.
Samuel has become a speaker at conferences and recently did the keynote address at a statewide conference for self-advocates.
Advice to Parents:
Both Dan and Betsy feel that Samuel continues to lead a full and usually healthy life in large part to the incredible medical practitioners that follow him. “One piece of advice I’d offer to parents is that once you find a great doctor or physical therapist or holistic practitioner, do everything you can to keep them in your child’s circle of care,” Habib says. “For example, we realize now how valuable it has been to us that Samuel has been followed by the same amazing neurologist since he was a year old. He knows Samuel’s physical strengths and challenges better than anyone.”
Advice to Teachers:
When it comes to school, Betsy and Dan have held firmly to the vision that they developed for Samuel through the Leadership Series – that he would be included in general education throughout his education. The hope that a teacher of a child with a mitochondrial disorder – or any type of disability would always “presume competence.” That means starting with the assumption that EVERY child can learn the general education curriculum, in the general education classroom, if provided with the proper instruction and supports. They see the value of inclusive education playing out now as Samuel works his way towards a regular high school diploma and — they hope — college. And he is rolling along that journey alongside many of the same friends he’s had since elementary school.
* The NH Leadership Series is a 9 month training for parents and self-advocates and is similar to Partners in Policymaking.