Now you may be wondering, why “School Days?” Well, the title of this section is more about school age than actual school days, but I’m getting back to the topic of school shortly. Angie spent a generally uneventful special education kindergarten and first grade in a school in Hamilton, Ohio, except for time off for surgery on her feet. Because her feet kept turning in her doctor recommended muscle releases to interrupt the continual spastic pulling. So, with input from her therapists and encouragement from her teacher and my parents we decided to go for it. She underwent muscle release surgery on the specific muscles that were pulling her feet inward. It worked!
Back to the Topic of School and Life
After about three years living in Ross, the kids and I moved back to live next to my parents again. My Dad and Mom had a house built for us with wide hall ways and doors and a ramp so we could take better care of Angie and so they could be next door. They loved us and wanted to do what they could to improve our lives. I will be eternally grateful for the sacrifices my parents made and I believe my kids all feel the same way.
At this time Angie started to attend a school called Roselawn/Condon School in Cincinnati, Ohio. This school was organized to include the special needs children in classes with mainstream students. At first this sounded great. Angie was happy and well cared for, but after a while, I started to question the value of her going to regular fourth grade classes. I thought it was great that students would wheel her into class with them, but I wondered what she was gaining by sitting in a regular fourth grade social studies class, for example. She couldn’t turn a page and follow along. She couldn’t respond to a question. She couldn’t take a quiz. In fact, I didn’t think she could actually read. I knew she could identify some words, but her responses were often confusing and inconsistent. It had become very difficult to quantify her comprehension ability.
All the testing psychologists and teachers did had left everybody with questions about her IQ and her ability to understand. As her mother, I wanted to think she was smart enough to know what was going on, but maybe for me that was wishful thinking. I knew for sure that when she watched television shows and movies, she was attentive and always laughed appropriately. For example, when she watched the “Pink Panther” movies, she would giggle at the silly things Inspector Clouseau would do. It was clear she loved slapstick comedy. She’s even laughed when any of us made a mistake (She still does). We all made up a bit of our own slapstick actions just to hear her giggle.
She was also aware when her little brothers would do something they weren’t supposed to do. She would make noise to get them into trouble. She had taken on the role of “Angie Guard.” Her younger brothers were just about the luckiest two boys in the world. They had “Angie Guard” and “Grandpa and Grandma Guard” to keep them out of trouble. I’m not sure they appreciated it at the time, but I did.
Another thing that made us all aware that she had a mind of her own was her need to choose what she would wear every day. We would hold up two outfits and she would shake her head for “no” or smile for “yes.” By this time, we had a good system for yes/no responses. If we’d try to put something on her she didn’t want to wear, she would have a hissy fit. If we tried to feed her something she didn’t like, she’d stubbornly refuse it. In fact, if we put something on the TV she didn’t like, she’d let us know by fussing. I know we spoiled her, but she had so little control over her environment that we let her watch her shows and choose her clothes. Fortunately for the rest of us, we had another TV in the house.
Her appropriate responses to life’s situations, TV programs and movies left me convinced that she understood everything that was going on. She would make a noise if I was going to leave the house without my purse, for example. I knew she knew, but then why wasn’t she able to show this ability in the testing environment? Every test, year after year put her in kindergarten as far as cognitive development. So, since I believed that sitting as an observer in 4th grade classes wasn’t benefitting her, I started looking for other possibilities for school programs.
By working with a caseworker in the county, we found another program that we hoped would be better for her. There was no opportunity for mainstream classes, but for Angie that didn’t matter any longer. She started at Breyer School the next school year. This turned out to be a much better place for her. The classes were all very small, maybe 8 or 10 students in all. She even had therapy during the school days. The county therapists were wonderful. They helped with wheelchair adaptations and maintenance, feeding, and designed a communication system especially for her. At Breyer she got her very first communication device. I had to adjust my dream for her again. I had to let go of the idea that she would be able to participate in classes with regular kids.
As the years passed and Angie grew older, I had to let my dreams for her go little by little. This wasn’t something I focused on consciously very often, but underneath my heart hurt to gradually accept how limited she actually would be for her entire life. Her transfer to Breyer School was a big step of acceptance, because here her classmates were all severely mentally or physically disabled and each one needed individual help and support, just like Angie. Truth be told, I had resisted this move longer that I should have, because I had always wanted more for her. I had always wanted her to be closer to “normal.” I hurt once again. And once I again I remembered, "Why not me?"
