When Mark was two, I took a leave from my teaching job to stay home and co-ordinate his speech, physical and occupational therapies. We had hours and hours to practice and he needed that! The following year, when I returned to work, he went to a “regular” daycare instead of the county special education preschool. I had learned that the most precious commodity to help Mark learn was any crowd of non-disabled peers. They spoke well, behaved well, and dragged him all over the playground to learn social rules. And they matched him punch for punch literally. We helped with ideas, but the kids were the best with common sense and “learn it or you can’t play with us” attitude. Yes, they changed game rules often to help him stay in a game, but most of the time, they kept the standards’ bar as high for him as each other. We tried to never overprotect him from those real world lessons. His teachers and other parents often thought we were heartless, but we trusted his peers to do the right things. So he learned and learned and learned.
Consequently, against our school districts initial refusal for a full time educational aide for Mark in kindergarten, we sent him proudly and trusted him to do “regular” kindergarten class alone. He had been in “regular” pre-schools with most of his peers anyway. The year went well, with kinks along the way. Mark would not tolerate crowding or loud, chaotic noise, such as when the bell rang for recess. In a crowd, he would straighten his arms out and swing them. Unfortunately, some of his classmates would get clubbed in the head at times. This did not go over well with the other parents! So, we simply informed the children why Mark did that and asked them for solutions. They suggested that at lining up time, everyone would stay a few steps back from Mark. For our contribution, we took a field trip to Open House Day at Beale Air Force base for a noise desensitization experience. We had no idea it would prove embarrassing and slightly cruel! Mark sat on Steve’s shoulders and when the jets screamed overhead, Mark screamed onto Steve’s head for half a day. Everyone stared at us. But we stayed until Mark realized sound could not maim him. It worked. Steve, however disagreed.
However, Alleluia, even after a few more kinks, apparently because of a few kinks in his program, the district agreed to hire the instructional aide full time for the first grade to assist with activities in general and modify the lessons when necessary; which was always.
Mark loved school, and learned most of life’s lessons from his peers in “regular” public school. A friend of mine with a daughter with Down syndrome had said, “ If our kids go to school with friends who don’t talk, or know social rules, how will they learn to have a conversation or do the right things?” She had a point, so we stayed with “regular education.” But behavior was an issue. A few times throughout the school year, our school psychologist would visit with Mark’s class while he went on an errand with the teacher, and the kids could tell her their “Mark stories.” This was an excellent way for the students to cathart; ask questions about Mark and Down syndrome, etc. Once, they all drew pictures of their positive and negative experiences with Mark. The teacher laminated each page and bound it together for us. Mark loved looking in that book. He got the idea that the other kids had opinions about him, what they liked and didn’t like. He truly cared what they thought and that year he began to improve his own impulse controls. Sort of.
As Mark moved through the school system, an educational aide assisted him and the classroom teacher. Mark was more like his peers than different, but in speech and language, rate of cognitive development, learning styles, and some maturity issues, he was different. We needed a TEACHER and the wonderful classroom teacher could not “do” Mark alone. So Steve and I went to an IEP war and got Mark a one-to-one aide. This person was not to mother Mark, She was to teach him what he needed to know, and I would be on the interview team. It was a no mercy program for Mark. No pity allowed. And I had learned by second grade to be a “bitch mother.” These mothers know school law and are not afraid of school administrators. We bring cookies and cold sodas to IEPs and we never sign the IEP until we get what we know our kids need. We shamelessly blurt out “I don’t care how much it will cost, find the money!” Because Mark grabbed that raisin at six months old, I knew his spunk and determination would be worth the energy and every cent the school district put into educating him. Even though I behaved very badly as a bitch mother at times; I even screamed profanities at a principal once and got thrown out of his office, (remember that Stan?) we all learned a lot about how to fully include special needs kids into their programs. And we learned and we learned and we learned.