Living with learning disorders

Junius Wilson is a senior at Woodbury High School who has been featured in his school newspaper as one of the best athletes the school has seen in 20 years. He has fairly good grades — As, Bs and Cs — and brags about his GPA.
He is no longer embarrassed by that fact that he receives special education services. “He’s an ordinary 18-year-old with aspirations to go to a college to study sports [as] a sport trainer and be a coach,” his mother Verona Mitchell-Agbemadi-Agbemadi says. “He has these goals and dreams for himself beyond being labeled or having a disability.”

The education system has never been easy for Junius and his mother to negotiate. Eleven years ago, Mitchell-Agbemadi moved to Minnesota with her son from New Orleans. Because there had been a domestic abuse situation in their family, she had to petition to the court to be able to bring him to Minnesota.
In New Orleans, Mitchell-Agbemadi felt her son was an average first-grade boy who may have experienced some trauma because of the domestic abuse. In Minnesota, Julius was enrolled in Maxwell Elementary School.

“So I got this call that Junius is acting out in school,” his mother says. The problem was that when it was time for students to begin classroom instruction, Junius wouldn’t sit down.

“As his instructor would say, ‘Please sit down,’ that just didn’t get it. He would go under the table, stand on top of the table, just like in a fun, playful way. At the time, it didn’t dawn on him that this is an instructional environment.”

Mitchell-Agbemadi says that there was no indication of an educational delay while in a structured environment in New Orleans. She feels that the change in culture had a lot to do with her son’s behavior.

“If you talked to him directly, sternly — ‘It’s time to stop the play, we’re not playing’ — he would listen. But moving to this environment — the culture is different. It’s non-confrontational, it’s very non-direct, and so his social cues were off.”

Not long after Junius was enrolled in Maxwell, his mother received a call from the school asking her to come in for a meeting. “So I got the news while sitting in a room — I will never forget — of about 15 individuals, 15 professionals including his teacher, to lay out a plan of how they would address his issues in the things that he needed.”

None of the professionals was African American. In fact, Mitchell-Agbemadi says that the only African American on staff was a person she feels was hired to “take care of or scare children who were sent to in-school suspension.” This was the beginning of Junius’s evaluation process.

Allen Stock is a psychologist and assessment and tutoring manager at Learning Disabilities Association (LDA), a private nonprofit that has been around since 1967. They provide early literacy services for parents, ADHD assessments and support groups, and individualized and small-group tutoring in an effort to support their mission of helping people of all ages with learning difficulties.

Stock says that people have always had difficulties learning. But it was during the 1970s, when schools started evaluating student performance and judging how they compared to their peers, that federal legislation and special education began to address individual students’ needs.

There are basically three learning disorders, Stock explains: “A reading disorder, typically called dyslexia; a math disorder that is called dyscalculia; and a writing disorder called disgraphia. However, there is a difference between a learning disability and a learning disorder.

Learning disability, which has rigid criteria, is mainly an educational term and refers to whether a student is eligible for special education services.
“A student has to be significantly below their current grade level to be eligible,” Stock says, “whereas a learning disorder through the clinical terminology is more subjective and provides more latitude for the clinician to be able to identify the disorder.”

Many times the parent or the teacher will voice concerns that begin the evaluation process, which involves looking at student’s academic status, how they are performing in relation to peers, whether emotional/behavioral problems exist, and standardized test scores. If after reviewing this information the school determines that the student should be tested, they will test using the same materials that LDA uses to determine a learning disorder.

“But their determination is solely based on meeting the letter of the law to determine whether that student meets the disability criteria,” Stock explains. If the student meets the criteria, they will be placed on an Individualized Education Plan (IEP). If they don’t, it is up to the parent to determine what happens next.

“A student can have a learning disorder, and have a relatively significant learning disorder, but will still not meet the school-based criteria for what they describe as a learning disability,” says Stock.

Verona Mitchell-Agbemadi said yes to testing Junius when the school brought their concerns to her attention. “If something was wrong, I wanted to address it there.” But she describes the school-based testing as degrading.

“They had a plan for him, and I was just…a body in the room,” she says. “It was almost that they had the prescription, and…if I didn’t want it, then it was a fight.” After going through the school-based IEP process, Julius was “labeled as mildly mental impaired. That was on his record. And it’s still on there, and he still has an IEP.”

Stock says that many times families will come to them for testing because they want a private assessment done, giving them control over who has access to the information — including the school. Often, such as in the case of the Mitchell-Agbemadi family, parents fear that their child will be labeled. They also come to LDA and organizations like them because they want more comprehensive testing that will provide direction on how to guide their child’s learning.

“We’re not only looking to see if the student meets the school-based criteria; we’re looking to see if that students meets the diagnostic or clinical criteria, and then we identify strengths and weaknesses and provide specific recommendations to target the students particular needs.”

The challenge with the school-based testing, Stock says, is that it overlooks students who have learning disorders but have been able to maintain their grades, and it forces other students to fall further and further behind until they meet the school-based criteria.

This may not happen until junior or senior high school years. It is also possible that students will complete their K-12 experience without knowing that they have a learning disorder.

“One of the things we never knew is what his disability was,” says Verona. “Once they started talking about medication, all my senses were stalled and…I truly just shied away from those things.”

She says that the school only seemed to focus on Julius’ weaknesses. “Anything that had to do with athletics he could pick it up — know the rules to the game, read the rules to the game [even though the school reported reading challenges], get excited about them, know what fair play is.” Julius was in Junior Olympics and was in the inner-city athletic league for track.

“He also has interest in Greek mythology. Go figure,” his mother says, having heard him rattle off the names of both major and minor gods.

Verona also feels that parents need advocates to help guide them through the testing process. “When I say advocate, I’m saying you’re putting yourself at the same level as the social workers…

“As long as I stayed in my parent place of not knowing and having professionals dictate how I would approach that with my son, it was fine for them. But once I had questions, once I wanted to look at the IEP and say, ‘I think we should do it this way,’ that’s when it got difficult.”

Learning disorders do not cease to be a problem once a student transitions to the workplace. Next week we talk to a parent who works as an advocate for parents during their child’s testing process and advocates for adults in the workplace.