The Gaddises: We Know What’s Best for Our Son
That’s how Shannon and Desmond Gaddis of Jackson describe the feeling they would have if their son Arthur were to receive an Education Scholarship Account (ESA).
The Gaddis’ son, 14, was diagnosed with narcolepsy at age 11 following struggles he experienced early on in childhood.
“Arthur didn’t start talking until he was three,” said Shannon, “and he didn’t start walking until age 14 months. Potty training was a huge struggle for us.”
Arthur, according to his mother began to grasp the concept of potty training at age four, although he still had issues with it until age nine.
“He still has accidents even now,” said Shannon, “and I think the potty-training issue was when we really realized that something was wrong.”
With both parents working they enrolled Arthur in a home daycare pre-kindergarten program.
“I think it was okay at first,” said Shannon, “but because of his inability to go to the bathroom at the time, the teacher wasn’t very patient with him.”
His lack of verbal skills only exacerbated the situation.
“Because he wasn’t very verbal at the time, he didn’t express to me what was going on at school,” said Shannon, “but when the teacher told me that she wasn’t going to clean him up any more and had left him in dirty clothes all day, that was when I became furious and took him out immediately and began looking for somewhere to go. “
Shannon and Desmond enrolled their son in a church school in Jackson.
“He was really behind when he got to the school,” said Shannon, “but in a month his teacher was able to get him to write his name. She was very good with him.”
Shannon noticed that her son flourished in a small setting.
“There were five or six kids in his class, and I realized that Arthur had to have a small setting,” she said. “It’s not that he can’t get the information. He can get it, but it takes him longer than the normal child to get the information.”
The Gaddises recalled when the time came for Arthur to graduate from kindergarten, the students put on a program to showcase what they had learned.
“Arthur has a good memory, and when the teacher handed him the book to read out loud to the parents, he recited the entire page from memory,” Shannon laughed. “She had to turn to another page that he wasn’t familiar with to prove to us that he could read.”
Arthur was diagnosed early on with ADHD, but his mother was concerned about putting her son on medication.
“I had always heard about kids on ADHD medicine becoming like zombies and I didn’t want that for my child,” said Shannon.
Arthur was receiving speech therapy at Jackson State University, and it was during that time that Shannon and Desmond learned of New Summit.
“The people at JSU referred us to New Summit,” said Shannon.
The Gaddises were able to shift their finances around to cover the $700 per month it would cost to send Arthur to New Summit.
“Before, we had two children in daycare, but when our daughter got old enough to go to school she went to the public school, so we were able to move the money we were spending on her to our son and pay for his schooling at New Summit.”
The Gaddises enrolled their son at New Summit and immediately saw a change.
“It was great for him,” said Shannon. “It provided the smaller setting that he needed, and he did well there during his first grade year. He absolutely loved it. The teachers were wonderful, and he really enjoyed the reading department.”
“Arthur really liked the other kids at the school,” said Desmond. “Even the parents became a family. We knew everybody there and developed a trust with each other.”
But the costs associated with New Summit began to climb, and the Gaddises made the heartbreaking decision to take Arthur out of the school.
“We just couldn’t afford it,” said Shannon. “It’s up to $850 per month now, and with Arthur’s other expenses it’s hard to find the money to pay for it.”
The Gaddises enrolled Arthur in a homeschool program in Clinton where he completed the third and fourth grades.
“He hated homeschooling,” Shannon said. “I think a lot of it was the fact that he didn’t like looking at four walls every day. Plus, the lady who was homeschooling him had a large age range of students from K-12. I think if it had been an environment where all the kids were his same age or similar to Arthur it would have been better.”
It was while Arthur was homeschooled that it was discovered he had narcolepsy.
“The teacher asked me one day if he was watching TV late at night because he was falling asleep in class,” Shannon said. “We only live five minutes from our church, and we had begun to notice that by the time we backed out of our driveway and got to the end of the street Arthur was in a deep sleep. He was constantly falling into a heavy sleep.”
In 2015 the Gaddis’ son saw a neurologist where he underwent an MRI as well as a sleep study. It was determined that he had narcolepsy.
“We found out that he fell into REM sleep in three to four minutes when it takes most people about 13 minutes.”
While Shannon and Desmond are desperate to help their son, he is left frustrated with his condition.
“He tells me all the time, ‘Mama, I’m tired of this falling asleep,’” Shannon said. “I try to encourage him. I tell him that it could be much worse. I tell him that he could be in the hospital with tubes down his throat. We are grateful that he doesn’t have cancer or isn’t having to stay in the hospital.”
“He asks for prayer,” said Desmond. “He says he just wants to be healed. The narcolepsy affects his ability to process information in addition to his ability to complete his work. We are trying to help him overcome this.”
Arthur entered a charter school in Jackson as a fifth grader after his mother searched for other options for her son when it came to his education. She heard about the new school that was to open and applied for Arthur.
“I was concerned because it was 26 students per classroom, but when I heard that there were two teachers in the classroom—not assistants but two teachers—I thought it may work,” Shannon said.
Arthur’s first year in the school was a good year. The school developed an Individualized Education Plan (IEP) for him.
“At that time, I had no idea what an IEP was,” said Shannon. “He received a ruling that he was on the autism spectrum and had a language deficiency. We were able to get speech and occupational therapy for him.”
Shannon said things changed in the second year with a shift in administration and restructuring to reflect state teacher certification pathways.
“We had to get used to new teachers and they no longer had two teachers in the classroom. Because they were not familiar with a child with an IEP who also had narcolepsy and ADHD, I don’t think they really knew how to provide services to him. Giving him more time on his work was not enough.”
Furthermore, Arthur’s IEP was renewed earlier this year with a new ruling of intellectual disability.
“It’s a mental retardation ruling, and I don’t feel like he is that at all,” said Shannon. “His IEP has such a broad spectrum of what the goals are for him, and I feel like they need to be a little more specific.”
Now in the eighth grade, Shannon and Desmond are desperate to provide the best education they can to their son.
“The teachers at the school where he is now care about him, but I need for him to have what he needs to be successful in life. We need Arthur to develop skills that will carry him through life. Had I gotten an ESA, Arthur would be at New Summit right now,” said Shannon.
Shannon applied for the ESA last spring because she believes that New Summit is best for her son. ESAs give parents the opportunity to direct their state education tax dollars to the private school of their choice and can also be used for tutoring, therapy, textbooks, transportation, and other education-related expenses.
The Legislature authorized 500 seats in the first year of the Special Needs ESA program (2015) and an additional 500 new seats each year. The original goal of the program was to give every eligible student the opportunity to benefit from the best educational setting available to him or her. However, the number of seats has never reached 500: only 428 are available for the 2018-2019 school year. Arthur and his family are one of over 200 families on a wait list to receive one of the ESAs which are handed out by the Mississippi Department of Education in a lottery twice a year as long as scholarships are available.
The ESA is valued at $6,594 this school year.
“We first heard about the ESA program from a neighbor,” said Desmond, “and my wife applied for it in the spring.”
Shannon called the Mississippi Department of Education (MDE) to inquire about the ESA.
“They told me to find an application online and fill it out,” she said.
Shannon submitted Arthur’s application and he was placed in the lottery in the spring.
“Within a few weeks we got a letter saying we did not receive an ESA and Arthur was on the wait list,” said Shannon.
Now, after two rounds in the lottery, Arthur is still waiting for his name to be drawn.
“There are those who really need it and may not get it because they are doing this lottery,” said Shannon. “They are just putting numbers in a box and pulling them out. It shouldn’t feel like going to the boat and pulling a machine to see if we win by chance. That is not helping my child at all. He’s still suffering from being stuck in his environment. There should be a different process.”
“I was driving to work this morning,” said Desmond, “and I saw a gentleman on the side of the road acting strange. As I passed I wondered if his life would have been different if he had gotten help. I don’t want that to be my son. I don’t want to wonder if his life could have been different.”
“What if Arthur is on the wait list again next year and then the next year? If I don’t have the finances, what am I supposed to do as a parent? We are trying to get him the best education he can get, but they don’t want to give you any type of help.”
For Shannon and Desmond, the receipt of an ESA would mean “a load off.”
“It would be beneficial to him most importantly,” said Desmond. “He would get another opportunity to experience that atmosphere of learning and get the teaching he needs.”
“Right now, Arthur likes school,” said Shannon, “but I want him to not only like it but have the best possible education he can.”