Meet the Cleveland Family

A Tobii Dynavox Family

BY KENDRA ROGERS, MS

Re’Mon Sr. and Yolanda Cleveland head a busy home with two children, Re’Mon Jr., 5, and Re’Mero, 1. Re’Mon Jr. has an uphill battle, thanks to being born with a rare gene mutation called GNA01.

GNA01-related disorder, also known as GNA01-related neurodevelopmental disorder, is characterized by seizures, low muscle tone, abnormal movements, and developmental delays.

Ms. Monica at Beecher Early Headstart, (which Re’mero now attends), helped the Cleveland family get a diagnosis for Re’Mon Jr. He gets services at Early Childhood Program and Services (ECPS). Next year, Re’Mon Jr. will start Kindergarten at Marion D. Crouse Instructional Center and will continue to receive services from Genesee Health System (GHS) and Children’s Special Health. He will also continue physical therapy with Anne at ATI, and occupational and speech therapy at Mott Children’s Rehabilitation. Along with his mobility aids, communication devices, and orthotics, Re’Mon Jr. has a long list of services and aids to help him achieve his best life.

Re’Mon Jr.’s version of GNA01 means his body movements are challenging for him to control and may make him appear to be lashing out or hitting, which results in frustration for him and his parents. His low muscle tone makes it difficult to swallow food and for his bowels to move properly. He requires strong medications to help his body perform what many consider “normal” functions. As a result, his parents are tasked with carrying many, heavy bags for Re’Mon Jr. to have a childhood he can enjoy. His well-being is on their shoulders at all times.

Day-to-day outings are a headache. Longer travel is even more daunting--enough medication, feeding tubes, special food, and supplies need to be packed to last for the entire trip. Preparing for possible emergencies that other families never have to worry about add another layer of complexity to travel.

Despite the challenges that present daily, Yolanda knows the happiness that comes from recounting Re’Mon’s huge accomplishments, like using his speech device, rolling a ball, supporting his own head, rolling over, learning to stand and use his gait trainer, and even feeding himself with a spoon! These accomplishments might seem minor, but they are huge to a parent like Yolanda.

Re’Mon Jr.’s initial diagnosis came in early 2020, right when Covid-19 shut down the world. Not only did the Clevelands have a pandemic to deal with, but also a son whom they needed to protect and advocate for. Yolanda shared that their local hospital was poorly equipped to handle Re’Mon’s needs, and medical staff suggested a larger hospital in a city like Ann Arbor. Then the Clevelands were told hospice was their only option as it appeared Re’Mon was too weak to recover. Instead, they chose to advocate for their son and do whatever it took to let him enjoy life. Because of the pandemic, there were no options for therapy initially, so the family did what they could at home. When they returned to appointments, doctors were shocked at Re’Mon Jr.’s progress, noting that his parents had done immeasurably well with him in the interim. Yolanda shares that she “decided to keep Re’Mon Jr. alive AND comfortable and dedicated him back to God and left it in His hands”.

Re’Mon Jr. is getting ready for kindergarten, a milestone his initial doctors never thought he would reach. However, his immune system is immature, which means common infections make him sicker faster and for much longer. Protecting him from viral/bacterial infection is a challenge the family must now overcome along with the other challenges. Even a common cold can wreak havoc on his system, resulting in digestive issues and high fevers. Thankfully, he has a robust IEP that provides home-bound services when he cannot be in school.

Complex schedules with appointments mean that “normal” traditions like family dinners are not possible. Instead, the Clevelands make their own traditions like sharing large family meals with extended family for holidays. With a strong Christian background, faith is important to the Clevelands. Yolanda participates with the praise team at church, and worship is central to their family. Re’Mon Jr. participates in the children’s ministry by giving speeches using his communication device.

The family also enjoys museums, parks, arcades, movies, bowling, skating, and hanging out at the pool.

In addition to more travel this year, Yolanda shares her desire to help create more accessibility in the community including an adaptive playground and more wheelchairaccessible beaches. She also mentions that church aisles, handicapped parking, and schools are falling short when it comes to serving those who use mobility assistance devices. Yolanda would also like to increase the adaptive devices in their own home including a swing Re’Mon Jr. can use.

People who love your children for who they are are uncommon, Yolanda says. She is thankful for her husband, mother, aunt, and sister who treat Re’Mon Jr. as though he is worth it. This family support is so important to Yolanda. She shares that “my peace is in Christ” so church is where she feels she is able to relax and replenish from the trials of parenting a child with complex medical needs. Journaling, date nights, and arcade games are other respite opportunities for Yolanda and Re’Mon Sr.

Seeing where her son started— unable to swallow and in the NICU for 6-weeks—and where is now— rolling a ball and supporting his own weight—give her hope for the future and for others in her situation. Yolanda encourages other parents to embrace the support offered through community organizations and fight for their children to get what they need to live a happy life. She says that even though it might not look like it “should”, it can still be beautiful if you let it be. She also encourages families to do self-care, get therapy for themselves, and get peer support from those who experience similar challenges.