Sam, a twin to Max, and brother to Jonathan and Katie, was born with a severe disability some refer to as Angle Man Syndrome or Happy Puppet Syndrome. His mother, Barbara, sensed Sam was different from Max. Max reached developmental milestones on target or earlier than expected, while Sam did not. Throughout infancy, pediatricians assured Barbara all was well and that Sam and Max were just 2 different individuals and would reach milestones at their own time.
Barbara remembers Sam as being quite “flaccid.” In a search for answers and guidance, she sought help from pediatric neurologists, speech and language pathologists, physical and occupational therapists and caregivers. She even traveled out of state to find help. It was during this time that a pediatric neurologist diagnosed Sam with Angle Man Syndrome, even though he did not meet all of the criteria. Today the family prefers to describe Sam’s disability as severe developmental delays.
Though Sam is non-verbal, his family has learned to communicate with him through eye-contact and a better understanding of his vocalizations. He cannot produce typical speech; however, his vocalizations include differences in tone and inflection. His fine-motor skills are perplexing in that grasping some things is difficult while he is still able to “pick up” fine grains of salts or lint. He enjoys playing with socks. Many fond memories of Sam include his searching for the “right” sock among many socks. He enjoys certain books. He often “sneaked” into his brother’s bedroom to find certain books. Jonathan often awoke to his books being strewn onto the floor. It took quite some time for the family to realize that Sam was looking for a certain book worthy of his attention. Jonathan learned to leave that book in plain sight. The rummaging stopped!
Sam’s communication skills did not stop here. After many unsuccessful attempts at potty training, the family had a “heart to heart” with Sam. Wanting to include him on long family trips, they explained that he was too big to wear diapers. In order to travel, he had to learn to communicate when he needed to use the bathroom and when he was finished. Sam did.
Like many parents of children/young adults with disabilities, Barbara wishes more emphasis would be put on these and other life skills.
Besides having a fondness for socks and certain books, Sam loves to play in water. His problem solving and play skills take other forms as well. Barbara fondly remembers a time when Sam initiated play with his grandfather during a large family meal. Granddad’s napkin kept dropping to the floor. The only one seated beside him was Sam. At first, granddad picked up the napkin only to discover a few seconds later, it was back on the floor. Sam looked away, smiling. The importance of these special times cannot be overlooked.
As with most people with severe disabilities, educating Sam was a complex endeavor. Though thankful and pleased for the education he was afforded, hindsight offers insight into what could have been done differently. Many people with significant disabilities can be taught repetitive, employable skills such as placing silverware on the table, folding napkins, filling salt and pepper shakers, etc. Like many parents of children/young adults with disabilities, Barbara wishes more emphasis would be put on these and other life skills. Because of income restraints, not all minors with severe disabilities receive special benefits that people with lower incomes do. Because of this, some people are “lost” in the system. High school would be the opportune time to educate parents into the process of ensuring their loved ones, who usually reach legal adult status while in high school, receive the benefits the law provides. When an individual is in high school and is legally declared disabled by the Social Security Administration, the process of receiving benefits, including Medicaid, are much easier to obtain. Like many people who have financially provided for all their loved one’s needs during childhood and adolescence, the ability to do so in adulthood is greatly compromised. Communication among parents, educators, social workers, and others in the “system” is crucial, especially when working with those who are significantly language impaired. Through Sam’s life story and others like him, Barbara and other advocates work diligently to make the transition from childhood to adulthood more fluid.