Car Seats, Wheelchairs, and School Buses
When Emily began attending center-based Preschool Special Education at three-years of age, I did not have a problem carrying her to the bus. The bus pulled in our driveway because of the extra time it took for loading and unloading. The Bus Monitor met me on the bus steps and took Emily to her car seat. When Emily was about to start Pre-Kindergarten at our district school, I began to be concerned about the age-appropriateness of this procedure.
We were in the process of getting Emily a manual wheelchair when United Cerebral Palsy offered to loan Emily a wheelchair to tie us over until she obtained her own. I was pleased that Emily's peers would not witness her being carried to the school bus as I feared this may cause them to view Emily as a baby. Since Emily is the first child to attend our small school in a wheelchair, the school had a wheelchair lift put in one of the district school buses and the transportation staff received training on using the lift and tie down system. Later, one of the new buses purchased by the school came with a wheelchair lift so they would have two buses equipped to transport our daughter.
We began the school year with Emily being pushed out to the bus and riding the lift up onto the bus. She rode to school in her wheelchair with it tied down properly. After a few weeks, her Bus Monitor reported that it was difficult for Emily to remain sitting upright on the ride home when she was tired out from her afternoon at Pre-K. We were also concerned about the sense of isolation Emily was likely to feel since she was not sitting with other children. We decided to transport Emily onto the school bus in the wheelchair and then transfer her to a car seat where she would be able to sit with the other children. This compromise suited all purposes since Emily was not being carried to the school bus, was properly supported by the car seat, was able to socialize during the ride to and from school, and she had her wheelchair to use while at school.
A few months later, I came across some information that indicates this procedure is exactly what is recommended for safely transporting a physically handicapped child on a school bus. To read this official information, please visit the American Academy of Pediatrics and read the article "School Bus Transportation of Children with Special Needs".
Question: What do I do with Emily when I take a bath or shower?
Answer: I set her in the corner near the bath tub. Before she had attained enough sitting balance to sit in the corner, I sat her in her Corner Chair. I keep toys and books near this particular corner of the bathroom so Emily is content playing while I get cleaned up.
Question: How does Emily get her hair cut?
Answer: This really depends on who is cutting her hair. Sometimes she sits on my lap while the stylist cuts her hair. Sometimes she sits in her wheelchair. When she was attending Special Education Preschool, they periodically took the kids to the cosmetology class at the vocational school. Here Emily sat on a stool in the barber chair with her Aide nearby. Here is a link to a photo taken during one of these school trips to the cosmetology class.
Question: What kind of bed does Emily sleep in?
Answer: When Emily was two and a half years old, I became concerned about her still sleeping in a crib. I realized that I had transitioned Jimbo from the crib to the toddler bed when he was 18 months old and wondered what implications keeping Emily in the crib may have on her. I didn't want Jimbo or other children visiting our home to think of Emily as a baby because she still slept in a crib. I looked into the available options and was not pleased with my findings. Emily did not need a hospital-type bed, she only needed something that she could not fall out of. I decided to buy two bed guards and moved her into the toddler bed. I put one bed guard on each side of the bed even though one side of the bed was against the wall. I did this because Emily was small enough to fall down in the space between the mattress and the wall. Later, I removed the bed guard next to the wall. Last summer, I purchased a set of bunk beds at a garage sale for Jimbo and gave Emily the twin bed Jimbo had been using. She still sleeps in the twin bed with one bed guard. When her new bedroom is complete (see below), she will have a day bed with the one bed guard. I decided a day bed would be good for her because when the bed guard is flipped down it can double as a couch giving ample room for her friends to sit on when visiting. Also, the day bed will provide two corners for Emily so that she will finally be able to sit on her bed and play.
Question: How do we discipline Emily?
Answer: Yes, Emily does need to be disciplined. Our beautiful little girl has a will of her own and I often wonder what our lives would be like if she was able to get around on her own. But since she can't, she resorts to temper tantrums, perhaps she would any way. When we realized that what we were witnessing had nothing to do with her prematurity or the cerebral palsy, we knew we had to figure out how to teach her appropriate behavior. Time-out certainly was not an option since she can't move on her own anyway. To discipline Emily, we put her in her bed where she is safe and leave her in her bedroom alone with the door closed. She knows that if she wants to rejoin the family she has to stop the screaming and crying. It didn't take too long before she got the point. To my surprise, though, when she got really upset and I threatened by asking her if she wanted to go to bed, she answered yes. Then she began to ask to go to bed when she got very upset. It seems that being alone in her bed helps her to regain control and she welcomes this. Regardless, our mission has been accomplished, so far, in that Emily knows that throwing a temper tantrum is not acceptable.
A Few Words About Environmental Modifications
When we first began to think about Emily getting a wheelchair, we knew our home would need modifications. I knew New York State had a grant available for such purposes. As we worked towards getting Emily a wheelchair, I began to inquire about the grant for Enviornment Modifications to our home. This grant only allows modifications within the existing "footprint" of the home. Since our home is a small three-bedroom double-wide mobile home, we could not come up with a way to make the needed modifications within the existing footage. So we needed to contruct the "shell" of the addition ourselves and have it a part of our home before beginning the grant process. To accomplish this, I contacted ten local building supply businesses asking for donations of the needed building supplies. One of the companies I contacted came through by donating $400 worth of plywood and insulation. With this donation, and purchasing lumber from the area Amish sawmills, we began to construct the floor of our 16'x30' addition. We plugged away at the addition one penny at a time until we had the shell constructed. As I write this, we are waiting for the construction covered by the grant to begin. It has taken a long time but it will be well worth it to see