Sam, now 19 years old, was born a micro preemie meaning he was born weighing less than 750 grams or before 26 weeks gestation. Sam’s mom, Kelli, shared that her pregnancy was normal until about 5 days before he was born. Since the day he was born, Sam has faced and overcome many challenges. He spent months in the NICU and endured several surgeries, including a PDA ligation. As a result of this surgery, he has a paralyzed vocal cord.
Sam came home with a tracheotomy and used a Nasogastric (NG) Tube for a few months. He was also diagnosed as legally blind in his right eye due to Retinopathy of Prematurity. Amazingly, Sam was able to get glasses at nine months old which significantly and positively impacted his development. Sam had several therapies in place for the first four years of his life, including speech therapy, occupational therapy and vision therapy.
Sam did not speak until he was three years old but by this time he knew about 250 American Sign Language signs. Although he had a speech therapist come to him once a week, it was his mom who taught him these signs. While speech therapy was helpful, sessions once a week only went so far. Mom said, based on all of this, “he should have been behind.” However, by the time Sam started kindergarten, he was developmentally on track. He had graduated from all of his therapies and was no longer using the tracheotomy.
Around first grade, Sam started showing signs of ADHD. Sam’s family had him tested and they received a diagnosis of Bipolar Disorder. Knowing that this diagnosis really did not fit Sam, Kelli continued digging. Her cousin, a special education teacher at the time, told Kelli she saw signs of ADHD and Autism. Long story short Kelli says, she was right. In fourth grade, Sam completed the Autism Diagnostic Observation Schedule (ADOS). Kelli sat in on this testing and recalls being shocked. Intellectually, Sam knew the answers but it became obvious that he wasn’t able to articulate the next step of the story or share how someone might feel, for example. Mom said, “The diagnosis was a relief. It really put a name to what we were seeing.”
In school, Sam was supported with an Individualized Education Program (IEP) and later a Behavior Improvement Plan (BIP). Kelli shared that Sam was suspended on several occasions. After certain times, the family and the school team met for a Manifestation Determination Review (MDR) which would decide whether or not Sam’s behavior was related to his disability. Self-regulation was and continues to be challenging for Sam. The out of school suspensions were especially difficult for Sam because executive functioning skills were also a challenge for him. Despite all of this and poor attendance, Sam graduated high school with an advanced diploma. Mom never had any doubts about his intellectual capabilities.
Today, Sam is in his 6th year of Applied Behavioral Analysis (ABA) Therapy, which has greatly improved his social skills and helped him develop several life skills. His mom also mentioned that Sam qualified for the Virginia CCC+ Waiver which afforded them the ability to have this service, among others, in place for this long. Sam is attending J. Sargent Reynolds Community College and is working on getting a job. He eventually wants to transfer to Virginia Commonwealth University. Sam aspires to be an author and enjoys comic books, Legos and Marvel movies.
We truly enjoyed talking to Kelli and learning about Sam. Although our stories are different, Brayden and our family have also benefitted greatly from the CCC+ waiver. We are not experts by any means but we would be happy to share what we have learned along the way if you or anyone you know might benefit from this waiver.
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