By: Carole Norman Scott
Yesterday morning, I had to resort to giving Ben a little smack on his bottom because of his behavior, and Johnny said, “Don’t smack my brother! He doesn’t want a smack!” Later, I told Ben to stop his groaning noise and Johnny said, “He doesn’t want to stop—he wants to do it!” Ben really has a pal there!
Johnny-4–(Ben has copper red hair)
Johnny asked me how you got freckles. Then several days later, I spied several on his nose, so I held the mirror up and showed him. He said, “Just like Ben–now I’m ’bout to get red hair.”
Maureen-12 (going into teen-age years), Ben-10, Johnny-5
Maureen babysat for us Saturday while we worked at the pancake breakfast for Bost School, and she did a real good job. I told her that the boys needed to rest, so when we got home, the whole family room was filled with tents and cubby holes made with sheets and blankets. She had fixed them little houses to listen to records in, and they had rested for about two hours, and thought they were having a ball. There was method in her madness however, as she fixed herself a SEPARATE cubby-hole and had some privacy. Anyway, I thought it was real ingeneous, and kept them happy and occupied.
How the Grandparents accepted Ben! (excerpt from a letter I wrote to them):
“Also, your acceptance of Ben and your willingness to do with and for him, and your patience with him are things that I will remember lovingly until the day I die. We enjoyed our visit there SO much!”
Maureen-12, Ben-10 (Maureen probably heard us talking of the seriousness of the situation with Ben, and wanted to do her part to halt it)!
Maureen is real interested in Ben again, and talks to him and works with him. There again, the change in him this week has been “spectacular.” She worked with him one day at the pool trying to get him to jump in the shallow end. He never would jump standing up, but DID sit on the edge of the pool and jump slightly. The next day, we saw him standing on the edge of the pool studying it and thinking …and pretty soon, he jumped in…all of his own accord. Then, it was jump, jump, jump! He is watching the other kids now and studying how they do things, and copying them (a first)!
I took them to the park the other day and Maureen climbed up on the jungle-gym made like a tugboat, and asked Ben to come sit up on it with her. He studied its structure and figured out a way to get up there, and sat with her. Then, when it was time to get down, she got down and he watched her closely, and got down EXACTLY the same way.
Maureen is beginning to notice the “little” things about Ben just like we do. She wanted to read their baby books and wanted to know what he was like when he was little…how he changed, etc. After helping clean for ONE week, she has been so much more understanding of my role. The other day she asked, “Mother, do you lead a boring life?” I told her that, “It wasn’t exactly exciting sometimes, and could she understand a little bit better now why I get cranky sometimes?” She said, “YES!” She has been sticking so close to home that she can get the REAL low down.
Maureen is still playing with Ben a lot and yesterday and today, she got him to sit down at the piano with her. He would play some notes on the bass treble while she played the song up above. She showed him how to play a scale up and down from middle C to the C above middle C. He now plays each note and turns to her to see if she approves. For his birthday, she gave him a good tickling and chasing. He liked that!
Ben-10 (Excerpt from a letter to my parents)
Now, I want to tell you about Ben’s birthday on the 4th of July. We made him a chocolate cake with white icing and put candy flags on it…with red candles in blue holders. We put white balloons with flags on them up on the light over the table. Ben ate a real good dinner and thoroughly enjoyed us singing to him and blowing out the candles. Then, we just got him one present–a talking view master. He really liked that. All in all, his reactions were very normal. His eyes even sparkled and looked excited when he saw that his present was a view-master. He seemed to know for SURE that it was HIS birthday, and what it all meant.
1976–Ben-13, Johnny-8 (3rd grade)
Ben went (moved) away! Ben had always been in Johnny’s life. Johnny knew no different, and missed him terribly (as did we ALL)! John’s grades went down, and the teacher said he wasn’t seeming to pay attention (and he was a GOOD student). I explained to her what had taken place, and then talked to him again to find out if he truly understood why Ben had to move away. I didn’t want him to think that if he did something considered “odd” or “wrong”–that he would have to go away too! SO HARD! (It was Ben’s periodic behavior at puberty that made it necessary! Read more detailed account in “My Christian Testimony Concerning Autism”).
1976–Maureen and Johnny went with us several times to see Ben–Again…SO HARD! He then came home for visits, and did GOOD! SO good to be a family again. Read, “Pioneers in the Wilderness of Autism.”
John said, “All Ben ever says to me is, “Dana isn’t here!” (Dana was a little boy from Ben’s childhood, and that was a phrase he repeated over and over…even at age 26.) John was upset that THAT was all he ever said to him. I tried to explain that all he ever said to Maureen was, “Creep Mousie” (she had chased and tickled him when he was younger, and he liked that so much). I told John that BOTH those things were special things Ben enjoyed (he loved playing with Dana), they were HAPPY MEMORIES to him…a way to relate to them. John hadn’t thought of it that way!
Maureen’s husband mentioned Ben’s calf muscles (how big they were). She laughed and said, “It makes you feel funny when people mention Ben’s muscles and you have to say, “Yeah, he gets them from pumping himself while swinging!”
Maureen invited us up to their house for Ben’s Birthday, and to watch the fireworks. She made little cupcakes with flags on them. Ben loves going there. Her husband accepts him like he is. The movie “Rainman” helped Maureen and John see themselves–we didn’t meet another autistic child (or parents of an autistic child) until Ben was seventeen!
Ben’s Birthday (Ben, 47)–4th of July, 2009–John (42) had us to his 14th- floor condo to see the fireworks all over the city. Ben was SO happy to be there. At first, he wasn’t sure about going out on the balcony with a “see-through” railing. But, he “braved it”…and really had fun (he doesn’t express himself in words, but the look on his face was “telling”)!
August 3, 2012–In all honesty, I will have to tell that as Ben ages (just turned 50 on July 4th, 2012)…his siblings have mentioned that they worry over his care if and when something should happen to my husband and me. Ben has a place to live (at the present time anyway), and his needs are taken care of medically and financially…but there still remains that question of who would be able to give him the emotional support that loving parents can and do give. We bring him home for one week to 10 day visits several times a year, and he goes everywhere with us during those times. Siblings do not have the experience of helping with his personal needs, nor the time or “know-how!” They have their jobs and families to consider. They have never had Ben in their home for an extended period of time, nor taken him for an outing like we have. They love him, but aren’t as familiar with all his idiosyncracies…like how to determine his wants and needs (by a look or action), etc. It is HARD…thinking what will become of him, and how the siblings will rise to the occasion should “us going first” ever be the case! The only answer is that God knows Ben’s every need (and his sibling’s too)…and HE will have to work it all out. As my husband says, “You could drive yourself crazy trying to figure it all out!” I agree, and have turned it over to the Lord. We have done all we humanly know to do to provide for Ben, and God will have to complete that work in the best way HE knows for ALL!