Did you know that teachers actually have interests and hobbies outside of school? I know, shocking! Mr. Parrish and I love the great outdoors. He is an avid deer and turkey hunter. Me, on the other hand? I am more of an observer of nature. I love to immerse myself in a wooded area, usually with an informational text, and learn about all the hidden gems nature has to offer. Trail walking, tree identification, plant identification, fossil and rock hunting, bird watching, and wildlife viewing are some of my favorite hobbies. (Wow, after writing that, I realize how nerdy my interests actually sound.) The point is, we are outdoorsy people. At least, we were until we had children. When we were expecting Micah, we went on a walk down an old country road in Darden. I specifically remember having a conversation that day about how having children was not going to change our hobbies, daily walks, and gym time. We would just take our new baby with us. Looking back on that now, I realize how silly it was to try and control our fate.
Micah was born. Things became difficult. Micah wasn’t a typical newborn. He did not sleep. We reached out to other parents and doctors and tried everything known to man to help him. You name it, we tried it. Essential oils, melatonin, rice in his milk, gripe water, no naps during the day…Nothing worked. We began to notice there were other things about Micah that didn’t seem normal. He was unusually happy. His laugh was and still is infectious. That little night owl stole our hearts with his little crooked grin and his big blue eyes. When he was two years old, after lots of tears, therapy, sleepless nights, genetic testing, and doctor visits, we found out that Micah had Angelman Syndrome, a rare neuro-genetic disorder causing developmental delays, balance and motor disorder, sleep disorder, speech disorder, and intellectual disability.
Micah is now 11 years old. Some things have changed, but mostly they have remained steady. We have modified our hobbies to fit Micah’s needs. Instead of immersing ourselves in nature, now we take short drives down country roads. Micah loves to sight see. He is pure joy. He has to have dessert after every single meal. (He gets that from his dad. Ha!) He loves his friends, his family, his church, and his school. One challenge that we have run into is that Micah is still incontinent. We have been very fortunate to receive a grant to help us afford pull ups for him, but you can probably imagine the hardship that arises when we travel long distances or try to do anything without a changing table. Micah’s incontinence has directly affected our ability to continue those old hobbies we used to enjoy together. Usually if Mr. Parrish goes hunting or if I am checking out some cool fact about fungus, the other has to stay home with Micah.
Recently, through the grant that we received for his pull ups, we were contacted about doing a commercial for the State of Tennessee Department of Intellectual and Developmental Disabilities in partnership with Tennessee State Parks showcasing a new changing table at our very own Natchez Trace State Park. For people like us, this is huge. This allows us to get back to nature and enjoy hobbies we love, and we can take Micah with us. If we need to change him in public, we now have access to a park with a restroom that will allow him to retain his dignity and privacy. Accessibility for everyone is important in a functioning society. I personally think it is what makes us a great community. Our community school, Scotts Hill Elementary, is inclusive. We celebrate differences and praise kindness. When we consider others by putting accessibility plans into action, it benefits everyone. Someone famous once said, “Inclusion is not a strategy to help people fit into the systems and structures which exist in our societies; it is about transforming those systems and structures to make it better for everyone.” Thank you to the Department of Intellectual and Developmental Disabilities and Tennessee State Parks. We appreciate the thoughtful consideration of Micah and others like him.
– Jessie Parrish