Week 12–18 December Writing Prompt

Hi, My Name is Cyrus. I’m a Phelan-McDermid Syndrome Kid.

I would like to introduce my great-grandson, Cyrus. He is 12 years old and has Phelan-McDermid Syndrome. PMS is a genetic condition caused by the deletion of the terminal end of chromosome 22. It is inherited in 20% of high functioning PMS individuals. It is a spontaneous mutation.

The condition consists of intellectual disability of varying degrees. Delayed speech, some autistic behaviors, low muscle tone, and motor delays may exist. Epilepsy can appear also.

The Phelan-McDermid Syndrome Foundation represents them. It joins other rare disease organizations with ongoing research projects. Their aim is to raise awareness and enact laws to benefit these families.

Parents of these children are on duty 24/7 with little respite to take care of their own needs. Any parent of a special needs child can empathize. All extended family members are also affected.

Cyrus can tell you in his own words what his life is like

“My body limits me. It’s like living in a shell. I walk funny, leaning to one side. I wear a plastic device behind one leg. It irritates me. I have special shoes to help my balance. Mommy has to put them on my feet. I want to be able to do it myself, like my sister.

Mommy dresses me every morning. Sometimes she’ll let me choose what shirt I want. I wear Pull Up diapers because I have accidents. I can let people know I have to go potty by making loud noises.

I cannot say words but will use signing when mom says, “Use your words.” I also use an iPad with word pictures. I can point to one to let people know what I want. My iPad has some games and cartoons that I like.

“It shouldn’t matter how slowly a child learns. What matters is that we encourage them to never stop trying.”~ Robert John Meehan

Sometimes I don’t like to hear her voice. She’s always telling me what to do. When I get angry, I throw things. If you get near me, I’ll grab your hair & won’t let go. I’ll chew on the couch when upset or gnaw on a puzzle piece. My sister will wrap her arms around me, so I have to stop acting out. Then I’m told to go to bed for a time-out.

Some days I go to school. I have a Special Aide who sits and helps me. After school, mom takes me to therapy classes. Big people help me walk, do simple life skills, and teach me how to say words. I like my days to be the same. Then I know what to expect.

“Every child is a different kind of flower that altogether make this world a beautiful garden”~ Anonymous

When I don’t go to school, respite workers come over to watch me so mom can do chores. They play games and puzzles and read books to me. They take me outside for walks, play on the swing set, or catch a ball.

I love to cuddle with people. It makes me feel good. I laugh when a ball slips out of my hand, and someone has to get it. My birthday car goes by itself right over the edge of the deck. It’s funny to see it fall onto the grass. Then someone has to get it and bring it back up the stairs. Laughing feels good!”

“Until you have a kid with special needs you have no idea of the depth of your strength, tenacity and resourcefulness.”~ Anonymous

But what about mom?

“Being a parent of a disabled child isn’t for the weak. There is no time off. Every day has to be planned. Appointments have to revolve around Cyrus’ schedule. If I leave to go anywhere, he has to be in school or with a responsible adult.

When I have to vent my feelings, I can call my mother. Respite workers are a great help, but they have to be scheduled. When emotions overwhelm me, I go out on the deck and scream my lungs out.

There is a Facebook group for PMS parents. We use it to share our frustrations and worries. Some of us become friends and call one another for emotional support.

There is an annual PMSF Conference for all family members. We meet people from other countries and compare stories. The wine flows with lots of laughing and crying. There are special activities for our kids to enjoy. It was hard during the pandemic when we couldn’t get together.

I know I have to find a suitable Group Facility for people like Cyrus. It breaks my heart, but he will need specialized care as an adult. He is getting stronger with each birthday. I won’t be able to handle him much longer. He will never be able to live on his own. And I have a teenage daughter who needs me too.”

(If you are interested in more information, go to www.pmsf.org. )

This article is written in response to a prompt from Nancy Blackman, MASF of Refresh the Soul. We were to write about a cause that is close to our hearts.

Please read this article by Judy Walker. It is filled with wonderful suggestions to overcome core beliefs of feeling unworthy.