Small Steps, Giant Leaps:
A Special Honor Roll
“Success is to be measured not so much by the position that one has reached in life as by the obstacles which he has overcome.”
-Booker T. Washington-
There is no greater source of joy and pride for a parent than seeing one’s child grow, achieve, and attain happiness. We delight in seeing our joyful toddlers take their first steps, brim with pride when our kids make the travel soccer team or the honor roll, bring flowers and lavish words of praise at a ballet recital or orchestra concert, call grandparents and close friends to share news of a gymnastics medal or perfect report card or college acceptance. In raising a child who was born with, or has developed, disabilities, health problems or special needs, a parent often has to let go of some of their dreams and expectations of the types of milestones and successes they see their friends’ children achieve. I have seen, and experienced first-hand, the heartbreak of realizing that a child will struggle just to accomplish certain tasks or milestones that come naturally to their peers – or achieve them much later, or not at all. But there is also a special kind of joy and pride that is felt by a parent of a child with special challenges, when the child works hard and overcomes a specific challenge of theirs and achieves something that parents of “typical” children take for granted. What would seem like a small step for most children, is often a giant leap for a child with a disability or with major health issues – often achieved only after endless hours of therapy and practice, encouragement and tears, two steps forward and one step back. It’s not an easy road for the parent or for the child; but there is a pride and amazement like no other that comes when a child with a disability achieves something – a small step that is in reality a giant leap – that a parent was uncertain would ever happen.
This project aims to showcase and celebrate some of the accomplishment of children with various disabilities and special needs. The children who took part in this project face a wide range of disabilities and challenges – some physical and others mental; some obvious and some invisible; some that may be treated or cured, others that are chronic and can only be managed. With a great deal of work, therapy, encouragement, perseverance, and positive attitude, these kids have overcome great obstacles and made giant leaps such as walking, talking, drinking from a cup, playing ball, climbing steps, writing, drawing, planning their day, interacting with friends and siblings, bowling, even doing gymnastics and playing hockey. For these special children and their parents, these are their trophies, their perfect report cards and their concerts – and they deserve to be shouted from the rooftops and joyously celebrated! This is their own special Honor Roll.
When you see Abby, age 13, you might first notice her big bright eyes, long flaxen-blonde hair, and a smile that lights up a room. But it quickly becomes clear that Abby is different: she suffers from Rett Syndrome, rare genetic neurological disorder that occurs almost exclusively in girls and leads to severe impairments, affecting nearly every aspect of the child’s life: their ability to speak, walk, eat, and even breathe easily. Girls with Rett display many of the symptoms of autism, cerebral palsy, and Parkinson’s, resulting in the inability to perform simple daily activities. Abby’s family is very proud of Abby’s current victories over Rett Syndrome: she can walk up the porch steps to her house, flip the light switch on and off, and feed herself using a pincer grasp. As her mom Robin says, “Take that, Rett Syndrome!”
Mikey battles an overwhelming list of multiple disabilities: hypotonia (low muscle tone), epilepsy, torticollis (twisted neck), scoliosis, and Acute Respiratory Distress Syndrome. He requires a gastric feeding tube, cannot walk or talk, and in his seven short years of life has spent countless months in and out of hospitals. Mikey has worked hard to keep learning and enjoying life while coping with his disabilities, and has learned to communicate his thoughts and needs using his eyes and his ipad. Of the many professionals and helpers who care for Mikey, his three siblings – two older and one younger – have been among the most instrumental to his growth and development. His mom tries to include him in as many activities with his siblings as possible, and on a recent bowling outing, she found that with the assistance of a standing roller, Mikey was able to bowl with his sister and brothers!
Hannah was born with a rare neurological disorder called Aicardi Syndrome, which involves brain malformations, serious vision problems, and significant motor and developmental delays. Hannah has been through a tremendous amount including removal of part of her brain to help control her seizures, cognitive impairment, and paralysis on one side of her body. When I spoke with her mom about Hannah’s strengths and accomplishments, she said that Hannah’s personality is her biggest asset – and when I met Hannah (who was about to turn Sweet 16!), it was instantly clear that she is one friendly, FUNNY girl! Somehow, even with her partial paralysis, vision problems, and developmental difficulties, Hannah invented a game where she puts her stuffed dog on top of a box and knocks it down with a ball, carnival-style! She has also learned to independently choose and play an app on the iPad.
Isabel was diagnosed with global developmental delays at just a few months old, and has received physical and occupational therapy since 6 months of age and speech therapy since 2 1/2 years. She always continued to progress but always 6-12 months behind her typically develping peers and always through a lot of hard work with her various therapists. She received a true “diagnosis” at age 5, but it is a gene mutation that is undocumented and therefore, it is still unclear what Izzy will or will not be able to do. But as her mom says – “The great part about not having a real diagnosis is that we try to assume that she will eventually do everything (so far we are on the right track!) – it will just take a little extra work to get there.” With a lot of hard work, help from great therapists, and advocacy from her parents, Izzy has moved from a self-contained disabled preschool class, to a “typical” kindergarten class with kids in her neighborhood! She has fought difficulties with fine motor skills, sitting down, and focusing, and is now able to write a full sentence. She has also managed to conquer some anxiety and difficulty with change by arranging her activities on a calendar so she knows what to expect.
Jack, age 10, has had quite a few challenges handed to him in his young life: not only does Jack have a diagnosis of Asperger’s Syndrome (aka Autism Spectrum Disorder), but for over a year, Jack battled cancer and had to undergo many rounds of radiation and chemotherapy. Jack has coped with all of it with the help his talent for art and his vivid imagination, belying the often quite literal thinking style associated with the autism spectrum. His parents have an amazing collection of Jack’s artwork, including this emotive and imaginative self portrait, as well as drawings of his imaginary friend. It has now been a year since Jack’s last chemo treatment, and Jack continues to put his creativity to paper while helping and inspiring other kids who are fighting cancer.
When I first walked in the door of Jack’s home, he greeted me warmly and even gave me a lovely drawing that he had made for me. I treasure that drawing, and Jack’s thoughtfulness and ability to connect really made my day!
Jessie’s parents received the diagnosis of Down Syndrome prenatally, with a rather dire prognosis, including possibly severe heart defects. Jessie has defied expectations, and now at age 6, she is able to throw and kick a ball, color in a coloring book, and drink independently from a regular cup. She cooperates with wearing her hearing aids and has made big strides in listening and communication, and loves to play with her dogs and her two older sisters. Her parents proudly say that Jessie has been meeting developmental milestones – later than other kids, and with help, but most importantly she IS doing it – beyond everyone’s hopes and expectations!
When she was just a baby, 8-year-old Kayleigh was diagnosed with Tyrosinemia, a condition that can cause both liver and kidney failure.
In 2009, she underwent a liver transplant at 18 months of age. Organ transplant recovery can be a long and difficult process, but at the age of five, doctors gave Kayleigh clearance to play hockey! Today, Kayleigh dances, does gymnastics, and plays hockey – and last year, with the help of the Make-A-Wish Foundation, Kayleigh signed a one-day contract with the New York Rangers hockey team!
“She has tremendous skills and we felt her strength and character are through the roof,” said Adam Graves, Rangers Hockey Operations Department. “We are proud and honored to have her as a part of the Rangers organization.” Kayleigh’s family and her community are proud, too!
While other babies were crawling and starting to walk, Lexi was struggling to roll over and sit up; she did not crawl till 18 months, and only started to walk at age 2 1/2. The origin of her hypotonia (low muscle tone) was unknown, but created major challenges for her and for her parents as she attended therapy while struggling to participate in school and other activities with children her age. Today, at age 8, you would never know that Lexi had never faced major motor challenges – she is a twirling, leaping, tumbling ball of energy! She continues to work on her attention and fine motor skills, while dancing her way through life in ways that her proud parents feared may not be possible.
Sam is a 16-year-old young man with a gorgeous smile, a drive to succeed, and autism. This has been a time of great success for Sam – he won medals in 3 different Track & Field events with Special Olympics and advanced with his team to the state bowling championships! His mom says, “This is the little boy who dreaded gym days back in elementary school. I’m beyond proud!” But Sam’s accomplishments do not end at the track or the bowling alley: he also successfully earned his first real paying job, which is an accomplishment to be celebrated for any teen! Sam has been entrusted with the responsibility of assisting guests at Crystal Springs, the town water park, at the Lazy River. Sam’s mom credits his success to the teachers and staff at the East Brunswick Public Schools, and says that none of this would have been possible with their support! Keep chasing your dreams Sam!
Everybody that meets Sara is struck by her kind and cute demeanor and sense of style. She likes to dress up in nice clothes and enjoys being creative with the outfits she puts together. The director of the Daisy Special Needs Recreation Center that Sara attends refers to her as “a diva – she is very smart but cannot speak so don’t let that fool you!”.
Sara is multiply handicapped. She was born with a cleft lip and palate and other midline defects including scoliosis which was repaired when she was about 8. She had a tracheostomy when she was younger and still suffer from respiratory issues. She does not eat any solid foods and her basic diet is a special formula which she drinks out of a special cup, and sometimes requires a feeding tube. Her speech is limited to phrases which she repeats often, though she understands a lot more than she can speak. Given all of this, people tend to underestimate her and people assume she is younger than her 25 years of age.