Alex Pitts was born quadriplegic, his twin brother Ryan was not. This month they will be entering kindergarten together. Like most twins, they have many similarities, but their levels of ability and needs are very different. How will this affect their experience at school?
By Rob Ingraham
Six years ago, Melissa Pitts gave birth to twin boys. Ryan arrived healthy, but for his brother Alex, something went wrong in delivery. Before he had a chance to take his first breath, Alex sustained a C-6-7 spinal cord injury (SCI) and entered the world quadriplegic.
As a physical therapist experienced in helping patients with SCI, Melissa quickly understood the implications when doctors informed her and her husband of their son’s condition: Alex would probably spend his childhood, his high school and college years, and possibly the rest of his life, using a wheelchair for mobility.
This year, Alex begins his journey through the public school system, entering kindergarten with his brother Ryan at the Lower Nazareth Elementary School in Nazareth, Pennsylvania. While Melissa has no illusions about the challenges Alex is facing, she’s hopeful that the combination of his bright, outgoing personality and the receptive, caring staff of Lower Nazareth Elementary will smooth the way.
On the Same Page
“The schools are one of the reasons we chose to live here,” Melissa said. “It’s very good district. They’ve been very receptive and willing to accommodate Alex’s needs.”
But educating the school staff about Alex’s needs falls to Melissa, and it’s a big job. “It’ll be a lot of work,” she said. “I need to educate everyone and I’ll be meeting with the entire staff, from the principal on down to teacher aides.”
The centerpiece of this process is what’s called the Individual Educational Plan (IEP) which is a federal mandate, similar in structure to a contract, ensuring that children with disabilities—physical, cognitive, or behavioral—get what they need and that all school staffers understand what will be required. Melissa explained that this process began about four months ago at Alex’s pre-school. Lower Nazareth Elementary sent a speech therapist, a psychologist, an occupational therapist and physical therapists to evaluate Alex on a variety of parameters.
“Alex is on-target developmentally, if not actually a little above average,” Melissa noted. “He has superior verbal IQ scores, high scores on psychological tests, and he has great problemsolving skills. Alex has no cognitive problems; all of his issues are purely physical.” Because Alex is not challenged cognitively, Melissa said she never considered placing him in a private school. “I always wanted him mainstreamed. But before we moved to Pennsylvania, I paid close attention to the school districts.”
Critical Challenges
One of the most critical challenges facing the school staff is recognizing and reacting quickly to signs of autonomic dysreflexia (AD), one of the most serious conditions affecting people with SCI. Failure to recognize and promptly intervene during episodes of AD can lead to hospitalization, neurological complications, and even death.
AD is caused by a variety of “noxious stimuli” that the individual with SCI—because he or she cannot feel discomfort in the same way as an ablebodied person—is unaware of. Causes include, bladder overdistension—generally due to a kink or obstruction in a catheter—bowel distension or impaction, pressure ulcers, constrictive clothing or appliances, fractures, sunburn, or any stimuli that would usually cause pain or discomfort in an ablebodied individual with intact sensation. One of the most prominent symptoms is a dangerous spike in blood pressure.
“Alex has a tendency toward autonomic dysreflexia, and one issue we need to address is ensuring that a nurse is on hand at all times that can recognize and react to it,” Melissa explained. Currently, the nurse at Lower Nazareth Elementary rotates among different schools and Melissa wants to be sure that a nurse is available every day Alex is at school.
Another major health issue for Alex is germs, because colds and flu spread easily among school children. “Getting a cold is real challenge for Alex. He doesn’t have the strength in his chest muscles to cough normally and fluids build up.” Alex also pushes his wheelchair by the tires instead of the rims because it’s easier for him, biomechanically. Melissa stressed that Alex must continually be reminded to keep his hands clean. “He’s just more susceptible to germs, he’s more vulnerable and that makes me nervous,” she said.
And while pressure ulcers have not been a problem yet, Melissa explained that, when not in his wheelchair, Alex is an energetic crawler and his elbows and hands get calloused and dried out. Frequently the skin cracks and, once split, the wounds are harder to heal. “It’s something that needs to be watched,” she said.
“Alex’s first mode of wheeled transportation was a standing frame with wheels, just before he was one year old. Interestingly, the first time we put him in a wheeled device he figured it out immediately—like he knew exactly what to do. I showed him once how to go backward, but he quickly figured out how to turn and go in all directions.” Alex got his first official wheelchair, a combination power/manual chair, when he was two and a half years old, which he still uses today.
Social Adjustments
Next to the physical challenges, Alex will have to deal with social issues, the first being simply getting to school. The school’s bus fleet is not wheelchair accessible so the district has contracted with another firm to have a special, accessible bus pick up Alex at his home every morning. “Part of the experience of going to school is waiting for the bus together in the morning,” Melissa said. “Alex will be traveling alone instead of with the rest of the kids. It’s not a real big deal but I think it’s something he’ll miss.”
There is also the process of separating a bit from his twin brother Ryan, which may actually be more difficult for Ryan that Alex.
“Alex and Ryan get along phenomenally well,” Melissa said. “Whenever Ryan gets something to eat, he’ll get two and bring one for Alex; when he gets a toy he’ll bring one for Alex. Of course, they still have the typical ‘brother’ issues like teasing or egging each other on, but overall they have a very good relationship.” Melissa does, however, worry that Ryan may be trying to take on too much of a helper role, and not allowing himself to bloom.
She decided to place Alex and Ryan in separate classrooms for kindergarten. “I had originally decided to put them in the same classroom for kindergarten to ease the transition to a new school and a new environment and then split them for the first grade. But talking to the teachers and other educators, they suggested splitting them for kindergarten because the schedule is only half a day and it’s a more nurturing environment. In addition, I feel like Ryan will blossom more, become more independent and confident socially with Alex not there.”
“Alex is actually a lot more outgoing than Ryan,” Melissa says. “He’s much more willing to initiate conversation, talks to people easier, makes friends quicker. Ryan is more hesitant, he’s shyer. In a way, I think that Alex may be something of a ‘security blanket’ for Ryan.”
“Ryan is smart, active, wonderfully coordinated, and funny, but he has low self-confidence. I think if he’s on his own more he’ll soon realize he can be great. At least that’s what I’m hoping.” Melissa added, “I want to be careful that Ryan doesn’t always feel obligated to help, that he doesn’t always feel responsible for Alex. That’s too much of a burden for a kid that age.” It will also be better for Alex, she noted. “Alex needs to do more on his own and having Ryan around always offering, ‘I’ll do this’ or ‘I’ll do that’ isn’t always a good thing.”
This urge to help also affects Alex’s friends. “The other kids in the neighborhood have been great. They’re friendly, welcoming, and none of them have had a problem with Alex being in a wheelchair. They’re completely accepting. But maybe sometimes they’re too willing to help. Some of the kids actually worry. Mothers have told me that their kids worry about Alex. They want to take care of him.”
The Frustration Factor
Alex will be the only wheelchair user in his kindergarten class and Melissa said that, as far as she knew, there is only one other child who uses a wheelchair at the school, a fifth grade girl, so they won’t have much, if any, contact.
“I’m told that when kids with disabilities reach the age of six, they begin seeing their classmates getting bigger, faster, and more mobile. The gap between what their classmates can do and what they can do gets bigger, and Alex will start noticing the differences more frequently and realizing that he can’t keep up; that he can only be involved up to a point. He’s at the age now where the frustration level starts to increase and once he’s at school, he’ll begin to see the differences more.”
She noted, “Alex wants to participate, to be a part of what’s going on around him. I worry what it will be like for him at school, trying to keep up with the other kids. The thing is, he’ll be out of my control now and it makes me nervous. At home I could keep track of all his medical issues, stay on top of all the psychosocial issues he faces. Now I’ve got to train a lot of other people to be aware of these things. And Alex has to learn to speak up for himself. Alex also has a tendency, if he can’t do something right away, he’ll go off and find something else to do. We have to make sure he’s not avoiding things, we need to make sure that he’ll try something first before deciding he can’t do it.”
“Another thing I worry about is that he’ll need more time than other kids to complete a task; the school has to allot Alex more time than they do with other kids. This is another thing I need to get everyone to understand in the IEP process.”
Ultimately, Melissa says, “I just have to let go and hope that they pick up the slack.” She said Alex is eager to attend kindergarten and looking forward to school. “He’s got his backpack and he’s ready to go.” Despite her worries, Melissa, concluded, “He has a phenomenal disposition and a great sense of humor. Sometimes I think Alex deals with his situation better than I do.”
Rob Ingraham is senior editor.
Federal Law Protecting Children with Disabilities in Public and Private Schools
Children with disabilities are protected from discrimination in elementary and secondary educational institutions under Section 504 of the Rehabilitation Act and the Individuals with Disabilities Education Act (IDEA); postsecondary institutions are governed by Section 504 and the Americans with Disabilities Act.
Congress’ enactment of IDEA was mainly in response to the determined efforts of persons with disabilities and organizations interested in the rights of persons with disabilities. In its findings, Congress noted that in the mid-1970s more than half of the approximately 8 million American children with disabilities were not receiving appropriate educational services, one million were excluded entirely from public schools, and many in regular school programs were educationally unsuccessful because their disabilities were undetected. The goals of the IDEA are:
• to ensure that all children with disabilities have free, appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepares them for employment and independent living;
• to ensure that the rights of children with disabilities and the parents of such children are protected; and
• to assist states, localities, educational service agencies, and federal agencies to provide for the education of all children with disabilities.
The cornerstone of the IDEA is the Individualized Education Plan (IEP). Developed in a collaborative effort between parents and school personnel, the IEP describes the disabled child’s abilities and needs and prescribes the placement and services designed to meet that child’s unique needs.
Among other requirements, the plan must include:
• The child’s present educational performance levels.
• The annual goals for the child, including short-term instructional objectives.
• A statement of the special education, related services, and supplementary aids and services to be provided to the child.
• An explanation of the extent, if any, to which the child will not participate with non-disabled children in the regular classroom.
• A statement of any special modifications in student assessment procedures that the child may require.
• The dates on which it is anticipated that the services listed will be initiated and the expected frequency, location, and duration of those services.
Children with disabilities in private schools that do not have programs designed specifically for special education may still be entitled to receive special education or related services, or both, from their local educational agency. The IDEA requires that a state’s plan set forth policies assuring that: “to the extent consistent with the number and location of children with disabilities in the state who are enrolled in private elementary and secondary schools, provision is made for…providing for such children special education and related services.”
Under Title III of the Americans with Disabilities Act, private schools must make reasonable modifications in their practices, policies or procedures and/or provide auxiliary aid for students with disabilities. Both Section 504 of the Rehabilitation Act and the ADA prohibit postsecondary educational institutions from discriminating on the basis of disability. Section 504 governs all institutions that receive federal financial assistance and Title II of the ADA applies to all state-funded or supported institutions.
For more information on the IDEA, visit the U.S. Department of Education’s online guide to the Individualized Education Plan at, www.ed.gov/parents/needs/speced/iepguide/index.html; for more information on requirements of the ADA, visit www.usdoj.gov/crt/ada/adahom1.htm; and for more information on the Rehabilitation Act, visit www.ed.gov/policy/speced/reg/narrative.html.
