I have been on a journey trying to find a balance in life as a mother to two toddlers, taking care of myself, owning a photography business, and my passion for special education. I have big dreams of  starting a small company in one way, shape, or form to raise awareness and work with individuals with intellectual disabilities. One focus would be to showcase their similarities and highlight their strengths and touch upon some of their weaknesses while raising awareness on some of the needs for families and individuals, and so here I start my journey… and already looking forward to the next one!

A day in the life of… Nolan.

Nolan is a 21 year old man who is filled with humor, laughter, goofiness, wit and charm. I have had the pleasure of being Nolan’s high school teacher until he graduated and moved on to adult program this year. In Maine, individuals with intellectual disabilities can stay in high school per their IEP until the age of 20. Upon graduation families and individuals lives are forever changed. They are no longer under the safety net of school support, they are now on the  ever changing journey of their adulthood which often means adult day programming.

The  whole process and readiness for transitioning into adulthood was the focus on the classroom I ran. I have worked in these day programs before while in college to make ends meet and found a true connection and calling in my life. I had a gift understanding, and the desire to learn about how the brain works. Nolan was the first young man I professionally taught for his high school career and transitioned him into adult programming. It was wonderful to see where he is now, but also eye opening.

Nolan is a young man with the diagnosis of Obitz G/BBB syndrome which is a very rare genetic disorder. So rare, there is little research.  I did endless amounts of research  and networking while working with Nolan, but the websites, books, emails, support groups, and conferences rarely helped. It was Nolan, his family, and us; his team of teachers and ed techs who had all of the answers we needed to help him rock his day and help teach him life long tools. Needless to say you can’t classify a person under their diagnosis, everyone including you and me have different needs as humans, so that is where I put all of my focus and efforts to help Nolan succeed in school and beyond.

Nolan currently receives daily transportation from Logisticare and is attending a program called Affinity in Portland. Which is a structured program that is individual (client) directed on daily activities such as Zumba, shopping, community work/outreach, arts, bowling etc. Nolan receives section 29 services which is 21.5 hours of weekly support. With that, families in Maine have to adjust their professional lives and adjust to their new life as aging parents of a 21 year old who lives at home.

Scott and Lorie are wonderful caring people who advocate for Nolan endlessly, because he does require that support in his life, since his self advocacy skills are limited.   Scott & Lorie are amazing entrepreneurs, Scott is a very talented professional photographer at Dorrance Studio, (which of course made me nervous taking pics) and Lorie is a detail oriented and talented food stylist at Lorie Dorrance Food Styling. As Lorie stated  “We have some flexibility in our schedules but that doesn’t mean it’s not a struggle to get our day started.” Waiting for transportation can vary from 15 minutes to an hour and any working person knows how important schedules are.

Nolan has taught me that patience can go a long way, and it is a road worth traveling. Anyone who knows Nolan knows he’s a gentle soul but is also a man who knows how to play the cards right in his favor. He loves to walk slow when you are supposed to walk fast… he loves to walk fast when you are suppose to walk slow. He loves to act out movies and pretend he is a character such as a classic Disney character, Scar from the Lion King. He gets into it- people, music and all! Nolan has taught me endless knowledge of Sponge Bob, the cast of characters and the cool lingo with it… “tartar sauce”

Working with Nolan you can have the wool pulled over your eyes and think he is either very shy, or can’t communicate but he is smarter than you and just is sizing you up and plotting his favorite story to tell you when the time is right (his time).  Nolan teaches patience. Example:  Ask him a question, anything you can think of, sometimes I would wait nearly 30 minutes for a response, but when I waited and respected his process I would get to listen to a  wonderful story.  PEOPLE- this guy can talk your ear off and ask intelligent questions, so don’t let him fool you.

Most importantly Nolan has taught me the gift of companionship, as cheesy as it sounds. Nolan loves his friends, and his friends, including me, love him dearly. He thrives on relationships and knowledge of friendships and connections between people.

Clearly, Nolan’s family has raised him into an amazing, inspiring young man, so hats off to you Scott, Lorie, Miles, and Oakie. Thank you for letting me spend the day with you Nolan. I know you are going to love the photos, since you are a photo junkie, just like Mrs. Beehive Bogle.

Love and Joy,

Siobhan