This blog is part of a series of 15 lessons based on the book, "Lessons from the Geese" by Dr. Robert McNeish.
While reading a book by a respected professional with people with intellectual disabilities, I was struck by a statement. He commented that he was glad people with cognitive disabilities didn’t know that most of the people who cared for them were paid to do it. However, there are lots of people who have extra time to help provide a more inclusive life to people with disabilities.
Time is a key ingredient to a good relationship. From the time he was a toddler until he was in the first years of his career, I had time for Steve. Even today, if Steve needed me, I would be happy to help.
I first met Steve when I was a graduate student doing clinical practice in speech pathology. Each quarter I was assigned a new caseload of clients. The purpose was to give me as many different children with as many different speech problems as possible to help me learn my profession.
One day early in the quarter, I walked into the waiting room and called his name. My new client was a cute four-year-old with a ready smile and a happy face. I noticed that he looked at my mouth when I talked to him.
Our first meeting was fun; Steve and I bonded! His records said he probably had intellectual difficulties. After two weeks, I doubted the diagnosis. I told my supervisor I thought he couldn't hear. "Well, his hearing has been checked," my supervisor informed me. "Have you had courses in audiology?" When I told him I had, he went with me to test Steve's hearing. My guess was right; he had a severe hearing loss.
So, Steve's therapy goals changed. I taught him speech, reading and language skills, and worked to provide him with information he needed, such as the difference between up and down, left and right, large and small. I remember the day he learned the meaning of the word, “shadow.”
We were working outside that day so Steve could practice identifying colors. We had worked inside using cards to learn the basic colors. Then we went out in the warm, fall sunshine to carryover the lesson. Steve was to pick out the blue cars, green cars, and the red cars. As he strolled behind me, I thought his interest was waning because he was looking down and would occasionally make a little jump. After watching carefully for a moment, I realized he was trying to step on my shadow. He wasn't playing, nor being noncompliant. He was learning a new concept. Color was no longer as interesting to him as the gray thing that moved every time his therapist did. Holding his face in my hands, I said, "Steve that is a shadow." With a puzzled look, he attempted to say the word. I changed my lesson plan. Steve needed to know what a shadow was.
First, I had him repeat the word "shadow" until he could produce it on command. Then I showed him several examples of shadow: mine, his, a car's, a tree's, a building's. He was delighted. Then I had him show me shadows. He started with his own, and giggled with glee when it moved every time he did. Then he pointed out mine, a student's (who was late for class), a building's and again, his! When we returned to the waiting area of the speech and hearing center, his mother was waiting to drive him home. As we walked to the car, Steve noticed his mother's shadow. Getting her attention he pointed to her shadow and explained, "That is your shadow." The concept had been learned.
When it came time for Steve to go to public school, the recommendation was for him to go to a school for the deaf. I disagreed. I reasoned that because of his high intellect, his supportive family, and his desire to learn, his neighborhood school was the best option. Because inclusion was not in vogue in those days, a critic asked, "Who will provide the support service he needs?"
"I will," I answered. So, for the first four years of his elementary days, I went to his school to talk with teachers and his fellow students about my friend and his needs. My professional role changed from therapist, to consultant, to advocate, or whatever the role Steve needed me to play. I enjoyed Steve.
During those school years, there weren’t many problems to handle. Only one real problem surfaced during his high school years. He wanted to play in the band, but his doctor said he should not. I helped him understand that the doctor was correct. The loud sounds of the band probably would not be good for what hearing he had left. After a tear or two he agreed, but this incident wasn't to be his last try at music.
Another less pressing problem arose early in high school: Steve fell in love. I explained to him that I didn't deal with matters of the heart, but Steve evidently didn't need anyone's help; he is happily married to Lisa and they have two children.
When I went to his high school graduation, one of his sisters commented that I shouldn't be sitting with his mother. When I asked her why, she assured me that I would soon learn the reason. Sure enough, when the principal called his name to get his diploma, Steve hesitated. The therapist in me wanted to rush to explain, "He didn't hear you." Was I ever wrong! The hesitation was to allow time for the principal to place the stole of the National Honor Society on his shoulders. Sister was right; his mother and I cried together. It was a proud moment.
Because Steve wanted to go to college, he came to see me to learn what to do. The first step was to get an evaluation. A couple of weeks later, he was back: the evaluation by a funding agency did not recommend any funds because, they said, he could never graduate. His chosen field of study was a bit unusual considering his disability: he wanted to study music! When I asked him why, he responded, "God wants me to." At the end of his senior year, my wife and I went to hear him sing his senior voice recital, which he did in two languages.
Shortly after his graduation, Steve's parents took him to Memphis for an evaluation by a world-renowned hearing specialist. During the time I had worked with Steve, they had asked several times about the possibility of reversing Steve's hearing loss, but I didn't know of any information that would help and didn't want them or him to be disappointed. But, they decided they would feel better if they went. Many people in their church and other churches were praying for God to work a miracle.
When the doctor finished the evaluation, he couldn’t believe Steve had finished a degree in music; much less that he was pursuing a career in church music. He noted that most patients with Steve’s level of hearing loss would have been educated in a school for the deaf. When he asked the family their reason for Steve’s not attending such a school, they told him that his therapist recommended that he be mainstreamed with his peers. The doctor told Steve to go home and thank the therapist for the suggestion.
Steve came by to see me. He thanked me and added, “Mr. Pierson, when I went to Memphis I was praying for a miracle. A lot of people were praying with me for a miracle. I just didn’t know the miracle had already happened.”
An audiologist’s report was serious: “You have a very severe high tone nerve type hearing loss in both ears with poor comprehension, present at birth for no apparent reason, for which there is no medical or surgical treatment possible.”
His recommendation was clear: “You should sit in the front row of church and other such public meetings, near enough to get a good look at the lips and face of the speaker. Avoid large groups and public meetings where you are at a disadvantage trying to understand what is being said.”
But Steve had other ideas. He didn’t avoid crowds; he went to college and earned his Master’s Degree in music. He doesn’t sit on the front row at church; he sits on the stage as minister of music. Against all odds he succeeded.
Steve, I am proud to stand in your shadow.
 | Dr. Jim Pierson |
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