Alexander | SEPO

Alexander "The Great"

A 19-year-old medically complex student attends several in- and out-of-district schools to meet his educational and therapeutic needs as they changed over time.

Child & Family Background Information

Alexander is a 19-year-old Black young man with multiple disabilities. He is medically complex due to a severe form of cerebral palsy. His mother, Alicia, described how he was born with multiple serious physical challenges: requiring G-tube feeding, severe physical/motor limitations, and brain-based difficulties with hearing. Some children with cerebral palsy will also have intellectual disabilities, but doctors were initially not sure about Alexander. It was clear to his mom, however, from an early age that he was cognitively intact, even though he was nonverbal. “You could tell that he was aware of what was happening around him. Alexander became a superb social reader. He could read the room, and he understood what was going on. He would watch cartoons and laugh at the right times.” But his inability to talk or sign caused many people to underestimate his true capabilities. Alicia was also well aware of how the combination of Alexander’ race and disabilities impacted how the world viewed him. From the time he was young, his mom affectionately referred to him as “Alexander The Great,” in part because of his greatness as he persevered through his medical challenges. But also, his mom poignantly stated, “because, as a black male in a wheelchair, he was discounted on multiple levels, and so I wanted to remind him of who he was. I wanted him to know that no matter what other people saw, he had value, he had dignity, he was important, he mattered.” Alexander required 100% support for all activities of daily living. Caring for him was a full time job, and a physically demanding one. His mother said: “We lived on the second floor of our two family house, and I had a lot of difficulty getting him in and out of the house.” They used a ramp to get his wheelchair into the house, but they couldn't bring his wheelchair upstairs. They installed a stair lift to get him up the narrow, steep staircase. There were times when Alexander required medication via his G-tube at midnight and 6am, which meant she got “maybe 4 hours of sleep by the time I rev down and then rev back up again.” It was exhausting to manage his caretaking needs on a daily basis. When Alexander was 2 years old, Alicia requested a Personal Care Attendant (PCA). She was told “Oh no, he's not even three years old. You're not eligible.” But she was not going to accept no for an answer. She requested an evaluation, and it was no surprise to her that Alexander was given funding for an in-home PCA. She reflected on how fortunate they were to have this life-changing in-home assistance, so that residential school was never something she had to consider. Alicia learned that the Olmstead Act (1999) was passed to help keep people with disabilities in their homes and local communities, and out of institutions. She noted that this “literally was passed the year before Alexander was born. If he had been born 10 or 15 years earlier, how much different things could have been for him… he might have been recommended for a residential placement because his needs were so significant.”

Brief Overview of School Placements

Alexander is unique in that he achieved success in a range of different school programs. His mother's and educators' careful attention to his changing needs meant that he required different educational programs at different phases of his life. He began at public school, and later attended an Education Collaborative, a private special education school, a hospital setting, and finally another Education Collaborative.

Transition to Preschool

Alexander received Early Intervention (EI) until his 3rd birthday. When the time came to consider his transition to preschool, his EI Team predicted that the public school district would not be able to manage his physical needs. Alicia said, “I felt like they were essentially preparing me for war, to advocate for an out-of-district placement.” It is a sad reality that professionals who work with but outside of schools will use language like “war” to convey to parents what their advocacy efforts might feel like. She also described the constant and additional impact of race on her as a parent: “And being Black, I was conditioned that I was going to have to advocate for my child anyway.” Alicia was anxious but prepared for her son’s first IEP meeting. “I remember going into the meeting, and I'm ready to make sure they can see how his disability impacts him. What does it mean in the real world.” She was impressed that they recognized the extent of Alexander’s challenges. The preschool director said, "I’ll admit that he's a little bit more than what we're used to, but we'd really like to try and see if we can meet his needs." Alicia was delighted to hear this: “I loved that idea because the preschool was two miles from my house, and so I knew I could get to him if I needed to.” They also offered him a full day of preschool, where most students only got a half day. The preschool staff recognized that he needed a half day of therapies (physical, occupational and speech therapy) and a half day in the classroom so he could access the educational curriculum. Alicia could not have imagined a more positive outcome. The main disagreement she had with the preschool team was around the amount of nursing support Alexander required. Alicia said, “As far as I was concerned, he needed a nurse in the room all the time. He was G-tube fed, his meds and everything went through the G-tube…and part of his condition was dysautonomia, where he could go into spasms if the temperature went above 71 degrees. So he required a classroom and bus with air conditioning. He also had a reactive airway, so if he breathed in cold air, he could have an asthma attack.” But school administrators did not think he needed a nurse in the classroom full-time. They explained that the preschool, which was located in the same building as the local high school, would have access to the full-time nurse at the high school. Alicia pointed out that the nurse’s office and the preschool were quite far apart, and this could be risky for Alexander. Alicia described a meeting with the Director of Special Education where she made good use of her skills from her time as debate club president in high school. “I was trying to get him to understand that we absolutely needed a nurse in the room. And he said that he wasn't going to do it. And so I just looked at him, and I said, very calmly: ’It seems we're at an impasse, so I'm going to have to file for hearing.’ And I remember the look [of shock] on his face. And I explained, ‘Well, we can't seem to agree on this, so we need a third party. Just seems pretty logical to me.’” Alicia was exceptionally skilled and well-practiced at staying calm and using precise, matter-of-fact language to make her point. The due process hearing was scheduled. Alicia recalled, “I’ll never forget the pre-hearing conference call. The hearing office said, ‘It seems to me that the two of you could work this out.’ I heard that as code for: ‘Give this boy the darn nurse, because you are going to lose this hearing if you don’t!’” Alicia was relieved when the Special Education Director stepped up and agreed to the full-time nurse, without going to a hearing. The first two years of preschool were successful. During his Kindergarten transition meeting, however, the preschool director brought some unexpected news. Alicia recalled that the director had tears in her eyes when she said: "I’m sorry, but we really feel like he needs to go out-of-district." Alicia felt devastated. But the director thoughtfully explained their reasons: Alexander required a great deal of medical equipment, which made it difficult to take care of him in a typical classroom. He needed to use a stander for at least two hours a day, additional time using a gait trainer, and meaningful access to augmentative communication. All of these tasks were difficult because what he could do in one hour, he couldn't repeat in another because his muscle tone fluctuated so much. Alicia sadly agreed with their decision: “He was this little person with a massive footprint because of all the equipment he had.”

Kindergarten through 3rd Grade: Education Collaborative

The team agreed to an Education Collaborative designed for children with moderate to significant disabilities. Overall, Alexander did very well there. No school is ever perfect, and Alicia chose one area to advocate for her son. “There didn't seem to be any evidence of him having access to the curriculum. And I give the director credit for asking, ‘What do you mean by that?’ I said, “If I see my child looking at Wheels on the Bus one more time, I'm going to scream. He's in third grade. He's cognitively intact.’” Alicia’s frustration stemmed from her sense that he was capable of taking in a lot more than he could demonstrate to others. “All I want is for him to get access to the same curriculum that everybody else is getting access to. And she said, ‘That's fair.’” This conversation shifted Alexander’s education to increasing his ability to communicate with others. His school began evaluating his needs in this area so that they could better serve him. Alicia said, “They wanted evidence of what he was understanding,” which she appreciated, even though his challenges made it difficult for him to do traditional neuropsychological testing. But they did find that his hearing impairment was significant and interfering with his ability to learn. Based on this revelation, Alicia felt strongly that Alexander needed to attend a school for deaf/hard of hearing students.

4th Grade through Age 16: Private Special Education Day School

Alicia was again relieved that her strong relationships with her son’s school team resulted in their respect of her preferences. “After the evaluation, I told them that I thought he needed to change schools. By the grace of God, the Out-of-District Coordinator said, ‘Yes, I think you’re right.’ And then they changed his IEP so that his receptive language would be set as American Sign Language (ASL).” He soon began attending a private special education day school for the deaf that was about 30 minutes away from his home. Alexander attended this school successfully for 7 years. He was immersed in ASL, as everyone there–all students, teachers, school administrators, cafeteria staff, and maintenance workers–communicated with ASL. His physical mobility limitations made expressive communication difficult, though his teachers educated him with the assumption that he had sufficient receptive language to be taught basic academic subjects.

Age 16: Medical Crisis

Alicia had spent several years advocating for Alexander to have a medical procedure, deep brain stimulation. But his local doctors did not think it was necessary and insurance refused to pay for it. At age 16, Alexander had a dystonic crisis where “he was having spasms that lasted for hours at a time.” These severe, painful episodes were difficult to manage and occurred over the course of several months. Alicia learned about an Independent Review process, available through the Affordable Care Act, where she could make the case to her insurance company that Alexander needed the surgical procedure she had long advocated for. She successfully pleaded her case to an independent board, who determined that her insurance company had to cover all care related to the procedure. Alicia researched other hospitals willing to treat Alexander and found one 1,500 miles away. She was relieved when a doctor there told her that “we would absolutely do that surgery for him. You just need to get him here.” Alexander’s out-of-state hospital stay lasted over 5 months, though he required follow-up care for an additional 10 months in two hospitals closer to home. Alicia described the stress of “living in a hospital setting for 15 and a half months in three different hospitals in two different states.”

Age 18: Return to School: A New Education Collaborative

When Alexander finally left the hospital, his previous school, the school for the deaf, refused to take him back. Alicia explained that “they were afraid of him medically…they said he could come back, but he'd be in a room by himself, without any peers, and with an administrator.” This isolating setting did not feel right to her, and their public school district agreed. The team identified an Education Collaborative with a program for students with complex medical needs. Alicia described this move as “one of the best things we could have possibly done for him, because they had no preconceived notions of what he was capable of doing.” His teacher trialed a communication device, and they realized he was now at a place where he could make good use of it. This school helped make two important discoveries. One was that he now had full control over his eye movements, an unexpected benefit of his surgery. This opened up more avenues of communication. His device used eye tracking technology to generate speech based on his eye movements and selections. The second was that he could finally show what Alicia had long suspected, that Alexander had been taking in and learning a great deal. When communicating with his new device, his sentences on his device came out in ASL grammar, which he had learned during his 7 years at the school for the deaf. Alicia was beyond delighted to have her son communicate to her, for the first time at age 16, “I love you, mom.” It was at that moment that all they had been through had paid off. “It wasn’t until then that it validated so many things I knew about Alexander…cognitively, he was all there. He was understanding everything.” She could only imagine how frustrating it had been for him to be 18 years old before he finally had ways to communicate with his loved ones and the world. Like all his other placements, there were challenges alongside the positives. Alicia was frustrated with the lack of consistent access to a classroom aide who was fluent in ASL. She explained that “even though we had a teacher who was very sensitive to the fact that his receptive language was ASL, they weren't consistent in making sure that he had access to it.” She was confused as to why the one classroom aide who was fluent in ASL was rarely assigned to work with him. Alicia also had to consistently advocate for him to be exposed to an appropriately challenging educational curriculum. His team realized he could read and understand basic mathematics. Teachers were working on more advanced reading, addition, phonics, and science experiments (growing terrariums was a favorite). Because he was 18 before he was able to communicate in a more complex way, he needed more time to graduate with a high school diploma. He was on track to pursue his GED, even if this did not occur before his schooling ended at age 22.

Challenges of Various Placements

Alicia articulated something that many parents searching for the right education for their child have experienced: That there is no perfect school out there. You may gain something by attending one school, but you always give up something too. Alexander received strong support for his medical needs in the early years, and support for his communication needs later on.

Benefits of Different Placements

Alicia explained that Alexander was considered “medically complex” but not “medically fragile.” Medically fragile children might be less likely to attend public school settings than medically complex children. This is because medically fragile children often have one or a few severe conditions that are potentially life-threatening and require constant monitoring. Being medically complex meant that Alexander had multiple conditions that impacted his daily life and required specialized care, but this support could be provided at the right school setting and at home. Also, Alexander benefited from each school’s particular area of expertise, when the needs became most important. When it was clear that his physical therapy needs were most prominent, he attended a full day therapeutic preschool in his public school. When receptive language needs became more apparent, the school for the deaf was the right placement. His last placement, the Education Collaborative, was the best fit when the combination of his communication needs and medical needs post-surgery were prominent.

How Family Members Coped

Alexander inspired his family and many others. He was invited to give a speech at The Pediatric Academic Society where he described what it was like for him before he could communicate with his device or “talker.” He believed that everyone should be taught, and he didn’t understand why people hadn’t always taught him things: “My name is Alexander. I’m 19 years old. I have multiple disabilities because of Kernicterus…I use an eye gaze computer to talk…I felt frustrated before my talker. I have something to tell you. I was hiding, and then I was found. I want to forget not chatting. Teach us. I think that's fantastic. I need help to see. I need people to use sign language. Why do I keep trying? I think that's best.” Alicia also relied on her sense of humor. Though she was frustrated by the times schools rejected Alexander when overwhelmed by his medical needs, she could see things from their perspective. She joked that “people were afraid of him because of the technology. I called him the $6 million man at one point! Between the baclofen pump to regulate his tone…the deep brain stimulation and the device underneath his clavicle, and the spinal fusion…I thought, there's a lot of steel in this kid!

Advice for Other Parents

“Alexander is the motivation for everything that I do.” Alicia encourages parents to be as determined to get their child what they need, as she was for Alexander... For example, Alicia described the process of advocating for the surgery, surviving the long recovery, and getting him to a place where he could use a communication device as “one of the proudest things I’ve been able to do for Alexander the Great!” Another important lesson that Alicia learned was the power her advocacy had for others, not only for Alexander. She poignantly described her son’s first day of preschool when she became aware of the ripple effect of her advocacy: “I will never forget the day that I dropped Alexander off. I'm scared to death, because, you know, we've been through hell. But after I said goodbye to Alexander, a woman came out of nowhere and gave me this massive hug.” The woman explained that Alicia had been successful where her own advocacy efforts had failed. Her child had life-threatening seizures but had been denied her request for a full-time nurse in the classroom. This mother was extremely grateful to Alicia, who hadn’t appreciated that her advocacy for Alexander could also pave the way for others. This awareness strongly impacted the professional direction her life would take. “It seemed crazy to me at first, and then I got mad. It led me to ultimately start my own advocacy business.” Alicia realized that even people who might appear to have privilege or resources need a village of support when raising and advocating for their children with disabilities. Though she learned this lesson early on in her journey, Alicia always kept in mind, beyond Alexander’s preschool years, that “my experiences are not just for or about me. I know that if I have experienced something, other parents likely have too.” Alicia has heard so many stories of struggle from other parents that she said: “Sometimes I think Alexander and I are one of the few success stories out there in special education!” She credits the positive relationships she maintained with team members, which she achieved by checking her sometimes strong emotions at the door and speaking clearly and respectfully to others. She recommends relying on your experts and your own research about your child’s condition. “I tried to learn everything I could about his condition.” She recommends being prepared to calmly and matter-of-factly articulate the “why,” that is, being as clear as possible about what you want and why your child needs it.