A portrait of Jackson Majeed, entitled “Jackson’s Door,” sculpted by his father and renowned artist, Faheem Majeed. Photo courtesy of Nile Lansana.
Every time the Lansana family walks into an elevator, 12-year-old Ari Lansana makes his presence known to all those crowded together. His usual monologue includes, “Hi, what’s your name?” “Hi, (elevator person’s name)! I’m Ari! This is Mommy, Daddy and my brothers: Nile, Onam and Brooks!”
The normal response is a smile and a reply. Some just nod and acknowledge Ari’s enthusiasm. All Ari knows is that he is curious.
Occasionally, someone will ignore Ari’s friendliness. Sometimes people just don’t want to be talked to on a short elevator ride after a long day. But that’s not who Ari is.
Ari Lansana, my brother, was placed on the autism spectrum as moderate at age 3. He was diagnosed with autism with some level of cognitive delay. Ever since then, his family has become bilingual. I call it speaking Ari. It’s difficult for the average person to comprehend, but I’ve grown in my understanding. When Ari was born, he did not engage in conversation until he was 3. According to WebMD, the average age for children to start talking is between 18–24 months. Naturally, this was concerning for Emily Hooper Lansana and Quraysh Ali Lansana, Ari’s parents.
About that same time, Ari’s parents started to suspect he had special needs. “The autism doesn’t necessarily dictate his behavioral choices or his physicality to great extents,” Ali Lansana said. These issues still impact his family today, in terms of everyday life and long-term needs, such as school placement and daily accommodations.
Michelle Madison, Ari’s former aide, is versed in the complex situations special needs children and their families’ experience.
“I spent one summer doing an autism program and it just felt really applicable at the time, so I’ve just kind of gone in that direction,” Madison said about her start into working with special needs youth as a clinician. Now, she has followed this passion and is working on a masters in social work at the University of Michigan in Ann Arbor.
Being a former Chicago Public Schools (CPS) employee, Madison had an inside look at the issues involved in CPS special education. She considers herself a clinician, but she spoke on her experience as a CPS paraprofessional and a special education assistant.
“It taught me a lot about myself and what I’m capable of in the midst of chaos,” Madison said. “It allowed me to validate my passion for working with kids with neurodevelopmental disorders.”
She also described her time in CPS as difficult and full of hurdles.
“I was a small fish in a big pond,” Madison said, echoing the feelings of numerous parents of special needs children, who make up more than 13 percent of CPS students. She said the program was systemic and not person-centered. “Theoretically, it is a good thing, but you can’t have a functioning system without understanding the population that makes it up.”
This lack of recognition for the people in this system resulted in more than 500 layoffs for special education teachers last year. Madison said she saw a lot of kids slip through the cracks, especially kids in special education, confirming the fear of every special needs family in Chicago.
Clearly, there is a disconnect in resources, training and priority between CPS special education and the families they are supposed to cater to.
“Ari was at a day care and he managed to get out of his room . . . his teachers said that he often played by himself and would often run and hide in other rooms,” Ali Lansana said. When asked if people were with him when he went off to play, Ali Lansana added, “there were supposed to be, in theory.”
Ari would escape the facilities for 20 to 30 minutes before being found, a problem that occurred at multiple schools. It became a fear that quickly manifested in the Lansana household.
“Just before he turned 3, at 10:30 at night, we were living in a second-floor apartment near 79th and Cottage Grove, and he opened three locks on the first apartment, went downstairs and went through two doors,” Ali Lansana said. “I received a phone call from my neighbor to check to see if all my babies were in the house and I looked up and saw he was gone. I ran outside to see him with a Chicago police officer, very happy, and he came inside and fell on my lap and went to sleep … It was very scary for all of us.”
Ari Lansana (far left) enjoys the summer shine and fun time with best friend Ivan Del Rio (bottom row next to Lansana), Ivan’s mother, Martha Fregoso (top row next to Lansana), and Ivan’s older sisters, Andrea (top row next to Fregoso) and Kendra Del Rio (bottom row next to Del Rio).
The Lansana family installed multiple locks after the incident and notified the day care. This happened two more times before the family removed him from that day care setting. It was just one of many lessons about being parents of a special needs child.
Ari is not alone. There are 52,231 special education students enrolled in CPS schools across the city. Although some kids may not be so curious to the point of leaving their house in the middle of the night or leaving their classroom during the day, all of these children need proper attention.
Teachers continued to lose track of Ari as he got older, and it got to the point that his classrooms required more staff. However, that staff was inadequately trained.
“At the parent-teacher conference, I raised the question: Have you ever had an incident of Ari leaving the classroom? To which, she responded: It has gotten much better than it was,” Hooper Lansana said. Neither Emily nor Quraysh were notified of this occurrence prior to that parent-teacher conference. “Can you please tell me about how many times a day do you expect that Ari is leaving the classroom? She said probably eight.”
This unpreparedness for special needs students is a result of lackluster training and adds to CPS’ list of issues. Madison says a system as big as CPS can’t solve all its problems. She thinks the problems being solved are higher up, which unfortunately doesn’t affect kids like Ari who aren’t at the top of the system’s priorities. Her thoughts seem to echo the sentiment of many parents of special needs children.
Despite Ari’s difficulties communicating, he is a social person and has many friends. We went over to his friend Jackson Majeed’s house recently. Ari greets Jackson with a hug. Jackson tells his parents “Ari’s here!” as the two go out to the backyard, equipped with a patio and basketball hoop. I spoke with Jackson’s parents, Faheem Majeed and Lashana Jackson, in the living room. Our families all met at the Autism Speaks Walk around Soldier Field a few years ago. We have been good friends since, celebrating Christmas and other events together. Ari and Jackson are both on the autism spectrum and have bonded easily. Jackson’s parents describe the two similarly: energetic, funny and passionate.
However, just like Ari, Jackson and his family have had a difficult time finding the right school environment for him. Jackson has gone from being in school with a nice teacher but a non-autism-specific class with untrained aides, being homeschooled with Applied Behavior Analysis (ABA) therapists but not developing socially, to being lucky enough to find a therapeutic day school outside of CPS that has on-site psychologists, trained aides and more individualized attention.
This has certainly been a journey with general autism resource challenges living in a low-income community on the South Side of Chicago, but Jackson’s family continue to be inspired by him. Faheem has been able to channel his energy and love for his son through his art with his portrait piece, “Jackson’s Door.”
“I actually put those boards up to keep him in his room because he kicked a hole in his door,” Faheem said. “In a lot of ways, that door represents his emotion and anger. I often say that Jackson has my anger and my temperament without any of the control to go with it. So in a lot of ways, it is a picture of my son, but it is also a picture of myself because I see Jackson as an extension of myself.”
Ari transferred out of Agassiz Elementary School a year ago and had a hard time adjusting to his new environment. He is still getting accustomed to the restructured schedule. First, he has school at Carter G. Woodson around the corner from home. Next, he goes to the church after school program where he does his homework. Then, he gets picked up to go home, take a bath, eat dinner and dessert, and then fall asleep on the couch. He knows he has to sleep. Most of all, he misses his best friend Ivan Del Rio.
On Sunday mornings, the Little Cubs Field of Humboldt Park hosts the Alex Cruz Autism Baseball Program. Ari participated in it last year, but Ivan’s family was not able to. Now, Ari and Ivan are able to reunite and play baseball on Sundays. I spoke to Ivan’s mother, Martha Fregoso, and older sister Kendra Del Rio. They just recently moved to Oak Park so Kendra could attend Oak Park-River Forest High School and Ivan could experience a better autism program with more accessible resources for special needs in the suburbs.
Before this move, their family had become yet another casualty of the struggle that is the CPS special education system.
“With self-help skills, he’s doing pretty well. Cognitive skills, not so much,” Fregoso said. Feeling that Ivan and his older sister Andrea, who also has special needs, were not getting the proper care, they decided to move to Oak Park in hopes of starting over. “It’s not just a given, where the school said, ‘Oh, here, we’re gonna do this for him.’ It has always been a fight and explaining why he needed certain services that were appropriate for the school setting.”
Excited about the move, Ivan’s family is optimistic that the situation in Oak Park will live up to its reputation. Martha said she was sad to leave the people behind, but happy to leave the school.
Aside from the school struggles, a common theme was the importance of having a support system for special needs children. Ari, Jackson and Ivan all have older siblings. The boys’ parents revered their older brothers and sisters for being helpful in their social development, but also contributing to the daily obstacles their younger brothers face.
“I think what we’re missing is a greater sort of developmental and cognitive support, an academic support,” Hooper Lansana said. “I think he hasn’t even begun to reach what’s possible in those areas and we definitely need more support to help him grow in those ways.”
The key word is support. These families are just a few of the many who feel the school system has not given them the proper resources for their children to succeed. Like Ali Lansana said, Ari has a great desire to learn. If these gifts are not seen or given the proper resources and training to harness these talents, autistic children will continue to fall through the cracks.
Hooper Lansana expressed her disappointment in the level of support Ari has received in academic areas as a whole. She thinks the challenge is that those teachers are trying to function in an environment that does not fully support his ability to be successful.
Many people look at autistic children with pity and separate themselves from them, but these children are just like any other kids. They have quirks, struggles and enjoy things that are unique to them.
For Ari, his sensory skills are heightened because of the autism. According to Ali Lansana, “He likes to eat, I think, more so because he enjoys the sensation of food or things in his mouth more than him actually being hungry.”
The notion that “you know something that I don’t know” is one of the greatest feelings Jackson’s parents both described about seeing their son thrive in spite of his special needs.
As for Ivan, “One day he’ll say, ‘Oh I really like this sport,’ and then the next day, he’ll be like, ‘Oh I really like this one’ and then I’m like, ‘Which one do you like, buddy?’” Kendra said on his affinity to sports yet never picking a consistent favorite.
All of these kids have their own individuality making them who they are. They are not defined by their autism or struggles to develop in school.
What is amazing to me is that Ari approaches school like he does a stranger in an elevator. He is curious, interested and excited to learn. Maybe he would be better off if CPS approached the special education system the same way.
Published by Columbia Links through Columbia College Chicago