by Jessica Rogers
In school, students with special needs are often evaluated to see what special education services they need in the classroom. Then either a 504 accommodations list is made, or an Individual Education Plan (IEP) is developed. (The term “504 list” refers to Section 504 of the Rehabilitation Act of 1973, which bars any federally-funded program (including public schools) from excluding the disabled solely on the basis of their disability.) The 504 list is used when there are no specific educational/academic goals. (in other words, the student is able to achieve in all courses on par with their able bodied peers) The IEP is used when there is an academic or educational goal in addition to the physical accommodations that are needed for the child to access the curriculum and school environment. The IEP is generally considered a stronger legal document than a 504, but both documents are law, and the school must comply with the information in either one of them. Usually the county school system decides whether 504 document or an IEP will be generated. Parents are a part of the team, and bring their input to the educational team.
The kinds of accommodations needed for your child will depend on the level and degree of the condition. For those who have significant absence of the spine, then schools often add the services of an aide to the classroom because the size of the student is so small in comparison to other students. The aide assists with lifting the child up to a sink for hand washing, up to a desk or table, carrying a cafeteria tray, and toileting. Another approach is to require the school to make these facilities accessible, perhaps with a set of stairs up to a sink. The children themselves are typically very agile and without any cognitive delays, but they are very tiny-with a 1st grader weighing perhaps 18 to 32 lbs. Therefore adults typically have safety concerns just because of the size of the child, even if the child is quite able to manage situations where there are a lot of people moving quickly. Generally, schools will need to provide accommodations as they would for any student using a wheelchair. Entrances and exits to the school should be evaluated, as well as fire drill and evacuation procedures to make sure these are accessible. In the classroom, a desk and seating arrangement should be evaluated by a therapist to make sure it is a good size and sturdy. Many of these children will “rib sit”, hanging their hips and legs off of the edges of tables or desks. They do not fall. The most stable position for them is the front of their rib cage, and many an adult with SA/CRS can report that they rib sat all through childhood with no disastrous effects. Most therapists and schools teachers are unaccustomed to this approach to sitting at a desk, but for these children, it works. (I’m a big rib sitter myself-drives the PT crazy, but it’s what makes the most sense for me). Other areas of the school need to be evaluated-restrooms, science labs, gym, cafeteria, and all expected procedures and travel routes such as from the bus to the classroom, the classroom to the library, the gym lockers to the playground, etc. to make sure that these are accessible. If a child walks, but is slower or cannot walk as far, then these needs also must be considered in planning the child’s route and activity and schedule. If the school has an elevator, what are back up plans should the elevator break? What is the student’s responsibility related to the elevator. In some schools the student must always be with a peer or adult, and some schools require the student to keep an elevator key. That may be a realistic expectation for a 3rd grader, but some junior high school students are not mature enough to hang onto a key all year long. Evaluate the expectations according to the needs of the child.
Once the school barriers have been addressed, then the individual needs of the child related to their physical needs can be addressed. Toileting, and for some children catheterization, care of ostomy bags, changing of diapers, etc. need to be discussed , not only how this needs to be done and training of staff on procedures, but also-where, when and who and a back up plan for when the primary person is absent. Also, storage of supplies, changes of clothing, and changes in schedule should be addressed since it is changes in school routines like all day field trips or sports days where these details fall through the cracks. Schools often push for children to cath themselves, so that the school personnel do not have to become involved. There are pros and cons to this idea. First, it might be physically impossible just because of the degree of curve or kyphosis in the child’s back. Secondly, a young child has no clue about being sanitary, so young children cathing themselves often leads to infections. Thirdly, children soon learn to say they cathed when they really didn’t, because they just want to hurry back to the classroom. They don’t recognize the long term problem in doing so. The pros are, your child probably doesn’t want various adults helping them with this private matter. If they can do it themselves, and do it cleanly and responsibly then that’s great. I suggest a one year trial with an adult on stand by. And, even though you can do a lot to prevent it, sometimes there will be accidents, so the child needs to know who he or she can go to privately to deal with a mess that is too hard to clean up. A process for letting the parent know when supplies need to be restocked is also a good idea.
Classroom concerns include physical access to the desk and door, and whenever possible also to any other resource or location that other children are accessing. Sometimes a child who is uncomfortable sitting for a long time will want to have alternative seating such as a bean bag chair in the classroom. Also, parents may want to provide a presentation to other students and teachers about their child, if the child is very young, to raise awareness throughout the school. Later, these presentations could be transferred to the students as they learn to advocate for themselves. Some schools have rules about food and drink in the classroom. If your child is on medication such as ditropan then they may need to drink more frequently because of the side effects of dry mouth can be very severe. Also, your child may need to eat more frequently due to the small size of their stomach. The cafeteria is another point of access. How are cafeteria trays going to be carried if a child is in a wheelchair or using crutches. Believe me, adults with SA/CRS can figure out how to do this so you don’t want to make it seem like your child needs a shadow every where he or she goes. Still, for younger children, the option of scooting a tray around on the floor is not going to be acceptable in a school building, so Perhaps a peer on another adult can be identified as a helper. The seating in the cafeteria should not leave your child stranded at an isolated table. It’s a social opportunity for all children so access for seating needs to be addressed.
The gym is another area to consider. The PE curriculum may need significant accommodations for your child. In middle school, we play basketball. I can’t shoot from an everyday chair because I took the anti tip bars off (no cool kid has anti tip bars!) so I would tip over backwards if I tried to shoot. In my IEP it says I’m allowed to bring my basketball wheelchair on the bus with me in addition to my everyday chair. Otherwise the transportation department for the school would say “no way”. But, it’s in my IEP so it is law that I can bring my basketball wheelchair back and forth to school. Soon, students are going to be expected to run the mile. I could push a mile in my everyday chair, but it’s probably not the best idea for my shoulders, because it’s a different kind of muscle motion than I need for swimming or even track racing. At this point, with sports, it’s important but otherwise it might not be. Probably I will bring my handcycle to school to do the mile. That will be easier, and I’ll probably beat the other kids! Anyway, all gym activities can be modified in some way. It just takes some thinking and an adaptive PE teacher can be a consult if needed, so adaptive PE consultation might be part of an IEP or 504. It’s also probably the best way to switch into an IEP if you want more teeth, because the PE curriculum is where the educational goals are for me. Otherwise I would have a 504.
One thing my mom always talks about in an IEP is rewards, incentive and field trips. She learned when I was like 5 or something that the school will sometimes plan a big event like an ice skating party or a trip to a historic residence and it’s just not an accessible place. There are plenty of places to go that are wheelchair accessible. The school doesn’t need to pick ice skating. If they do, then they need to let me use my ice hockey sled and not forbid me to go on the ice with the other kids. Its’ the same thing with a class that has a surprise ice cream party when some of the kids in the class are allergic to milk. The school needs to plan ahead and think about issues of access, not just try to deal with it after the fact. They need to get a wheelchair accessible bus for transportation for field trips, and they shouldn’t take field trips to places that I can’t go unless they figure out how I’m going to participate in the same way as other kids. If we go to a historic residence and there is no elevator and lots of stairs, then someone is going to need to let me walk up the stairs on my hands, or carry me up. You want to get this worked out in advance and not get stuck after the school has plans already made.
Testing is another area. If the school is going to do long tests which may require your son or daughter to sit for long periods of time, that might not be comfortable. Some of the state standardized testing takes 2 hours or more. One accommodations might be breaks or alternative seating during the test and allowing for bathroom breaks if needed.
When there is a fire or other emergency, how is your son or daughter going to get out of the school. The elevators can’t be used in a fire. Some schools say they will stick a flag out of a second floor window to alert firemen that you are there. I’m not crazy about that idea. I’d rather they just let me walk on my hands down the stairs.
As you can see, there are a lot of things to think about and one of the best ways to do it is to go with your son or daughter and walk around the school as if going through a normal school day and write down anything that seems to be an issue.
Here is a list of possible accommodations: