Inquiry

As a middle school teacher, I often sit in on annual case review conferences for special education students. The law requires that regular education teachers like me be present for these conferences to make sure that students are placed in the least-restrictive environment for their educational needs. The guidance counselors and special education teachers know that I don’t mind being part of these meetings because I sympathize with the parents, having been part of case reviews as a parent when Alex was younger and receiving special education services. Recently, I met with the parents of a special needs child and had a very nice conversation with them, discussing some of the things Ed and I had gone through when Alex was middle-school aged. Also present for this conference were my good friend the guidance counselor and a representative of our county’s special education cooperative whom I did not know prior to this meeting. After the parents and I discussed various issues, this special education representative wanted to know if I would answer some of her questions. Generally, I am fairly open about our experiences, but what I thought would be just a few inquiries about Alex became what felt like an interrogation and made me somewhat uncomfortable.

While I answered her questions directly and elaborated when she wanted more details, I later analyzed some of the things she had asked me and wished I had told her that they were really none of her business. For example, she wanted to know how we had discussed sexuality with Alex. Who asks any parent that? I was particularly uncomfortable with the parents—whom I had also just met that day— sitting there because they seemed uneasy with the topic, too. I told her that we had not gone into a lot of detail with Alex because we were concerned that he might obsess over the ideas, as teenage boys often do. Additionally, I explained that we had taught him basic socially-appropriate behavior about modesty and keeping his hands where they belong so that he doesn’t make others uncomfortable. Furthermore, I went on to explain that Alex learns best by reading, and he has read a few books about puberty and development on his own and seemed satisfied with what he’d learned from them. [An especially good book about the topic I highly recommend is Mary Wrobel’s Taking Care of Myself: A Hygiene, Puberty, and Personal Curriculum for Young People with Autism. Alex found this book at our public library, and I was so impressed with it that I ordered him a copy online from Barnes and Noble.] Anyway, she probably thought I was old-fashioned to hand my kid a book instead of sitting down with him and discussing “the birds and the bees,” but we know what’s best for Alex. Another topic she seemed to want me to explain was why we decided to home school Alex. For some reason, some people find home schooling strange, but we know that choice was best for Alex, who needs one-on-one instruction. Since that explanation didn’t satisfy her, I went on to detail how he had been restrained in a seatbelt chair and made to hold a sign that he could read that said, “IGNORE ME!” in special education preschool, which we felt was not appropriate. Of course, she posed the typical argument against homeschooling—socialization. (I wonder if people think we lock home schooled children in closets.) After explaining that we took Alex to library programs, concerts, sporting events, and other activities, not to mention all the various therapies, I went on to tell her that as a middle school teacher, I know that kids like Alex are easy targets for bullies, and I was not about to subject him to that humiliation and upset. My friend the guidance counselor nodded her head in agreement, as did the parents, which seemed to close that particular topic.

Next, she wanted to know about Alex’s future plans. Had I known that he’d been contacting companies about his latest invention, I could have told her that. Instead, I decided to answer honestly and tell her that I don’t know what the future holds for Alex. Since Alex turned eighteen last year, I’ve gotten more questions about what he’s going to do in life, and I just can’t answer that right now. Although he’s legally an adult, he’s still immature in many ways. While he’s made quite a bit of progress in the past year or so, he’s still not ready for higher education, nor is he ready to hold down a job. However, we have hopes that he will eventually find something fulfilling to do. In the meantime, we continue educating him ourselves and giving him opportunities to develop his potential. Of course, we know that God has a plan for Alex’s future, and we stand on that promise. Finally, with the inquiry nearly over, the woman asked if I would have done anything differently. Now this was a question I could answer confidently. Looking back over Alex’s childhood and the various things we have done, we have no regrets. Certainly, we made mistakes at times—most often out of love for him—but we did the best we could with the knowledge that we had. Most of all, we sought God’s guidance and prayed earnestly. In the end, that’s all that really matters, and the progress Alex has made has been a testimony to God’s faithfulness in our lives.

“So they said to him, ‘Please inquire of God, that we may know whether the journey on which we go will be prosperous.’” Judges 18:5

Files

This past week, I have been sorting through the files and records we have kept on Alex over the years: medical, educational, home school, and various therapies. Although I did not keep up with recording data in his baby book, as I explained in my earlier blog “Milestones,” I have kept carefully assembled files detailing Alex’s early years with autism. In going through his special education individualized education plans, or IEP’s, from ages four to six, I was reminded how strong his early reading and math skills were. His preschool teacher described his reading skills at age four as, “exceptional as he reads and spells many words.” She also mentioned that he would spell words aloud; we knew he did this to make sure he was understood because he was aware that his speech wasn’t always clear. Addressing his math skills, she wrote, "Information that is sequential has always fascinated Alex, and he organizes his routines and information this way. He is particularly interested in the calendar and numerals.” In a later report, I gave the following example of Alex’s ability to sequence at age six. During a V-8 vegetable juice commercial, Alex turned to me and teasingly asked, “V-9?” When I suggested W-9 instead, he thought for a minute and responded, “V-8, W-9, X-10, Y-11, Z-12!” This early preference for sequences and numbers has continued through the years, since Alex’s favorite subject, as well as his strongest, has always been math.

In reading through the evaluation reports, I recalled how clever Alex was about controlling situations to his liking, despite his limited language. In his first evaluation at age four, the educational diagnostician noted that Alex ignored the toys in the room and simply wanted to look at the books. She explained, “He was not interested in any other activities and, in fact, tried to discourage other activities by repeating, ‘Bye, bye’ whenever they were offered.” She went on to state that in order to test him effectively, she had to follow routines that Alex insisted upon and “taught” her. For instance, Alex needed to have his words repeated back to him so that he was sure the listener had understood him. To get the diagnostician to repeat what he had said, he would put his hand on her lips after he had spoken to indicate that she was to say what he had said. In addition, she commented that he bumped his knee at one point during testing and wanted her to rub his sore knee. She further explained what she did next: “When the examiner then kissed her own hand and touched Alex’s hurt knee, he kissed the examiner’s hand.” Apparently, Alex was satisfied that she had learned the lessons he wanted to teach her. In another later evaluation, the school speech therapist also discovered his need for control. She noted, “He often insisted on saying all the words he could see written on the test materials, rather than following directions.” In addition, she was none too pleased that he was reading the answers, which were written upside down on the bottom of the test page, even though I had warned her beforehand that he could easily read words in any position. Not surprisingly, these test results were not terribly valid because Alex had found a way to outsmart the system.

Besides the academic and evaluation reports, the comments in these files that others made about Alex reveal his strengths. For instance, his beloved occupational therapy assistant described five-year-old Alex in her report, stating, “Alex comes easily to the therapy room and is pleasant and generally cooperative.” A few months earlier, I had said in the IEP conference report that his private speech therapist had praised Alex in a written report to me by remarking, “I just love working with Alex—so loving and cooperative. Excited at most all we do—I love the happiness.” In that same conference report, I shared that his pediatrician had told us when he was four, “When Alex starts talking, it could be kind of scary because he’s so smart.” His pediatrician—like his private speech therapist, occupational therapist assistant, the educational diagnostician who first tested him, and others who have been perceptive about Alex—realized that behind the autism lies a child with much to offer. Those who see Alex for what he is, instead of focusing on what he is not, gain a glimpse into a special soul who takes delight in the world around him.

“At the Lord’s direction, Moses kept a written record of their progress. These are the stages of their march, identified by the different places they stopped along the way. “ Numbers 33:2