“I can’t read the words.”

Adults with Down Syndrome, Courage, Education, Frustration, Mother of an Adult with a Disability, Reading 6 Comments »

If you follow our blogs, you know that my son Billy has overcome a number of  hurdles and has succeeded in many areas of his life. He graduated from high school, has been successful in several jobs,  is considered a valuable member of our community, and is certainly a cherished and important part of our family and circle of  friends.  He is a competent and happy man. However, there are times that  Billy expresses dissatisfaction with his disabilities in certain areas. He cited one of these areas this morning. As we were leaving church, he said to me, “I can’t read the words.”

Reading a magazine.

Reading a magazine.

After we got into the car, I asked him to tell me about this problem. For years we have marveled at the way he follows the hymns half a beat behind, presenting the effect of singing with the congregation. He is so talented in doing this that it appears he is following with the congregation. One Christmas a friend, who holds a position in our church, asked me if I thought Billy would be willing to read a piece in a program. I told her that he reads very little and she was totally surprised.

We have worked on reading for most of Billy’s life, in school and at home. He brings in the paper each morning and reads the weather report and some of the headlines. He reads his TV guide and parts of People magazine, where he is prompted by illustrations and familiar terms. The hymnal, however, is not illustrated and has few words relevant to Billy’s life. He jumps in when phrases are repeated in the chorus, as in the

hymn Till We Meet Again, which we sang this morning. I did not realize how frustrated he was with the other parts that he could not read.

We talked about this again after we got home and Billy said, ” I am so dumb.” I always tell him that he is smart in so many ways and that “dumb” is a hurtful word and one to be avoided. It breaks my heart to hear him say that about himself.

Although there are over 900 songs in the Methodist Hymnal, we will find a way to work on reading them. Perhaps we can isolate words that are most frequently used and establish a hymn sight word list. It will be a challenge for both of us.

Once again I am amazed at Billy’s courage. He loves to go to church. He frequently nods during the sermon and I realize he doesn’t comprehend the message. If I poke him he tells me, “The Bible says don’t poke in church,” and we both giggle. This is another measure of his courage. Even when he doesn’t understand, he hangs in and gives it his all.

There must be a better term than “dumb.”

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