“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.”

Fill Out The Attached Form . . .

Adults with Down Syndrome, Advocate, Aging, Down Syndrome, Family Challenges, Mother of an Adult with a Disability, People with Disabilities 8 Comments »

Rather than writing my intended blog, I have spent the weekend trying to follow directions. I have been fortunate to keep my son Billy as a dependent on my health plan even after my retirement. A couple of weeks ago I received papers from the insurance company  to submit to maintain this coverage. Since the due date was stated as October 15 I set the material aside. Friday (September 4) I received another set stating FINAL NOTICE (never a good sign). But now I understand why so much time has been allowed.

An important part of the documentation required is the completed Incapacitated Minor form signed by our physician. Since I did not have that form I searched until I found a link where it could be downloaded. The URL was clearly printed with the usual assemblage of characters followed by a space and CoverRequestedChild.pdf, with the entire URL underlined. I tried to access the form, alternately typing it with the space, without the space, with the underline, and without the underline. I checked and double checked, always looking for my customary typing errors, always going to a non-existing site notification. At last I called the help number listed. This is where the fun began.

I was delighted to receive a courteous, encouraging female voice, eager to answer any questions I might have.

“I am unable to access the CoverRequestChild.pdf.”

“Did you enter the URL listed?”

“Yes I did.”

“And what did you see?”

“The indication that there was no such page.”

“I don’t understand.”

At this point, I asked if I should insert the space or the underline and she informed me that she would need to ask her supervisor and would I please hold. I held. Some time later she returned to the phone, stating “The space should be an underscore and there is no underline. You know, a lot of people have asked about that.”

While I had this friendly person I decided to ask a couple of other questions.  I told her that I have a letter from the insurance company stating “William will be continued as a dependent on your Family Type certificate until he marries or ceases to be incapacitated (capable of earning a living).” I wondered if that would serve the purpose.

“Please hold while I ask my supervisor.” I held. “No, that is no longer acceptable.”

Another question: “I have a letter from our physician dated 2007 stating in part “William has Down syndrome, a condition present at birth. This is a lifelong condition which will render him unable to support himself.”

“Please hold while I ask my supervisor.” I held. “No, that is not recent enough.”

Actually I do have another question: Is it possible that someone thought Billy would no longer have Down syndrome after three years?

Now I will get the physician’s affidavit, fill out the forms, and try to get all of it in by October 15. I’m glad I have that much time to complete the process.

Does anyone else have this much trouble filling out forms?

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