These stories describe our journey with Ben, our oldest son. Ben is a sweet and energetic redhead, born with a rare genetic mutation.
My husband, Ryan, and I try to keep up with Ben and his two younger brothers. I intend to shed insight into raising a child with disabilities and pass on the wisdom we’ve earned over the past two decades.
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Charlotte Mecklenburg School Parents and Students Write Letters to School Board
Charlotte Mecklenburg School parents and students are writing letters to the school board to show their support of keeping special education at Randolph Middle School. Here are excerpts from a few of these letters:
From a current parent of two children in the regular education program at Randolph:
"Middle School is a tough time for kids as they are forming character traits that will carry with them into high school. The peer buddy program is a program of honor at Randolph. IB and Horizons students apply for this program to have the opportunity to support the SAC classrooms and students if accepted. Being a peer buddy at Randolph is a respected position. I work with some of the peer buddies weekly at the Lost & Found and I see these middle school students encouraging their SAC buddies to do a good job on their tasks, talk about their weekend fun, and talk about sports/birthdays/shopping/hairstyles. The peer buddies model good social relationships with the SAC students and it emanates outward in the middle school community. I see random middle schoolers in the cafetorium coming in for breakfast. These students stop by and say hi to their peer buddy friends and then show good interaction with great social acceptance to the SAC kids."
This letter is from a parent of a Randolph alum:
"Emma, who was born with Down syndrome, attended RMS in the SAC class during her middle school years. It was there where she gained so much self confidence and made great strides in her academic progress. She also overcame some behavioral challenges and learned positive social skills. All of this was because of the extraordinary special ed teachers there! These teachers really changed the trajectory of Emma’s life and what she can accomplish. They were able to work with Emma with her specific challenges in such a way that really showed results. They also sought out opportunities for her to be a part of the regular population through the Peer Buddy Program which was extremely important. Everyone wins in this endeavor! It builds community, strength in character and reinforces the learning experience for all involved. It dissolves the myth that people with special needs weigh down the academic strides of the population. It proves that the reverse is true!"
One current teacher wrote:
"I get the privilege of interacting with these wonderful children daily and can't imagine my life without their influence. I'm also incredibly proud of one of my students who has a brother in the SAC program. Seeing the way he fights for his brother is equal parts heartwarming and humbling."
I wish I had more time to write on eSpeciallyBen . Ben teaches us lessons on a regular basis: Smile often, give hugs, sit down and savor the moment, grab someone's hand to let them know you care and laugh with abandon–even if it annoys your brother. Ben will be 18 this summer. He attends high school in-person and enjoys seeing his classmates and teachers each day. In the photo above, it's 6 a.m. and he's can't wait to get on the bus. As for most people, the pandemic has been tough. Ben's in-person activities, camps and programs were canceled. He's happy to see grandma when we met on a Charlotte greenway or park. Ben seeks out social interactions and being quarantined away from friends and family was even more difficult because he didn't understand why. Ben's teacher sends me photos of him throughout the week. They just finished a rousing game of catch here. Thank you for following eSpeciallyBen. If you want to see what I'm working on now, find me
In October, I received a letter from Social Security Administration saying that Ben no longer qualified for SSI AND we owed a very large over payment for two years of SSI that Ben did receive. The letter showed that we owned two of the same car. I knew this was wrong and immediately wrote a letter. I thought it was a computer glitch. Over the past five months, I have met with Social Security, spoke with several people over the phone and wrote countless letters providing documentation to show the cars we actually owned and filed appeals for the decision to revoke Ben's SSI during the two year period they think we owned these two cars. Tomorrow I have another meeting. I am hoping we can get this straightened out. This situation has caused a lot of stress for us and has taken a tremendous amount of our time trying to unravel the problem. I have not written a post in almost a month, partially because my brain power has been consumed with this issue and the bathroom saga (qualifies
Ben in the middle with Dad (left), Carla Payne with Aging Care Matters and Mom This is the first of several posts about parenting an adult child with a disability. Ben will be 19 this summer; I am learning along the way. As always, I hope to pass on resources and wisdom. Discuss the future. If your adult child is able to participate in planning for their future, ask them how they envision it. Let them draw a picture. Ask them to tell you a story. Maybe they can sign a few words that mean a lot to them. Find a way to get them involved. How do they see themselves living? By themselves, in a group home, with another family or with a sibling? Where do they want to live? In another city, in an apartment, in a house? How far away do they want to live from family? What level of independence can they handle? Do they want someone to check in on them? Do they want to find a job? Do they need a job coach or supportive employment? Who will help them with their finances? Is there someone they tru