If there is a purpose

I am amazed at how long Ben sat at his yard sale table Saturday! Patience usually isn't his strong point, unless HE assesses an activity to be important enough.  After Matt and I helped him take his toys and books outside and set up a table, plywood on saw-horses, he sat in his chair(the one that's not worn and fuzzy against his neck) and waited for three hours while cars drove past him down the road to the neighbor's yard sale and then back up past him without stopping. 

Money is a definite motivator for Ben, mostly because he wants to buy Legos. There are sets that he has started that must be completed! But still I expected him to come in for a break at the half hour mark...hour...two hour. But no. I brought him a Nutty Buddy cone at eleven and told him that most yard salers stop coming at noon. After he ate his treat, he decided it was time.  We put books in a box to take to Wonder Book and Video, and toys in two different bags; trash and Goodwill. He never complained, not even when he gave back the fives and ones we had given him for change at the beginning.

At Derby Day on July fourth, Ben agreed to keep score of each race. With his notepad in his lap, positioned closer to the bottom than the top of the section of Main Street cordoned for the race, he wrote down the winner of each race...for four hours! He did have his chair...could that be a factor? It does sort of cradle him like a hammock, which has always helped him be calm. He ate his pizza, delivered to the chair, but never missed the results of a race. Three quarters of the way throught the event, when Thomas asked for his opinion of who would win, he said, "How should I know!". He wasn't being smart alec; he was confused as to how he was expected to know what was going to happen. He could tell exactly what HAD happened. That was fact. Ben didn't really like estimating in math class either. 

Ben knew we were probably going to stay for the whole race, since Matt and I were there to give out free water from the church. Maybe he figured he might as well do something to pass the time. But we have gone to the race most years,  and he normally didn't enjoy it enough to stay till the end.  He resisted making any social connections, even though in the past couple years there were drivers who were his age. But having a reason to watch each race he was content to sit there for four hours.

 Can I learn something about how to extend the amount of time he will be patient in a situation that doesn't have an obvious purpose for him or isn't entertaining to him?  It's hit or miss though, since I have to sell the idea as his own....

importance of music

Our home has always been a place of music: I can function better, I think, with music in the background if not the foreground. I sing going about my day or have music playing. Our girls have the passion and talent for instrumental as well as vocal music. Ben seems to be no different in that respect. We expect he has a better sense of pitch than we do.
I remember when he was just learning to talk(that took a long time, which I'll explain in another post), Ben at two would sing with me as he took his bath. I started out by singing "Old McDonald" and other preschool songs to him. He picked them up more quickly than he was learning to speak. He watched Veggie Tale shows which had catchy tunes. Those became some of his favorite songs to sing. One of his special teachers who came to the house a couple times a week to work with him told us a funny incident related to his singing. She was listening to her pastor one Sunday tell the story of Daniel being required to bow down to the idol. She almost started laughing because she kept thinking of , "The bunny. The bunny. Oh I love the bunny!", a line from a veggie tale song about the same story that Ben had repeatedly sung to her.
Ben doesn't usually want to sing with others or want others to sing with him. We often wondered if he just had sensitive hearing/sense of pitch so that when he sang with others he could hear the out of tune singers and it bothered him. Recently, he has watched(over and over and OVER) a video of instrumental music "played on" computer graphic instruments(animusic). One tune only was not written for the project and Ben insisted that he recognized it. So everyone he knew who might be musical he hummed the tune to and asked if they knew it. His voice is dropping into a more adult range at this time, so he was having trouble humming in the key in which it is played on the video, but he would not change keys to make it easier on himself. He sings it like he hears it.
This morning on the way to church he started singing words from several of our worship songs to one of the animusic tunes.
His music teachers have consistently reported that he can keep a constant beat; helpful since he played percussion for 5 years, only opting out of band this year to continue taking French( a story for another day also). Either he will incorporate music into his career or at least into his life as an adult I am sure.

and the journey began...

The longest document on my computer is the journal that I started soon after the specialists from Allegany County Infants and Toddlers Program told us that they were 98% sure that Ben had a form of autism: PDDnos, a wierd abbreviation for Pervasive Developmental Delay not otherwise specified. It begins something like, "A bombshell hit our family...", and it was an emotionally devistating explosion. Our sweet little boy, we were told, was going to need lots of extra help. But since he was talking even a little, they felt confident that with early intervention, ie; special teachers coming to our house, speech therapy, and even a special preschool, he would slowly gain more typical speech.

Ben had seemed a typical baby. He smiled, seemed happy. It wasn't until he was passing the point at which we figured he should be babbling, trying to say words, that we started to suspect. At 18 months, he wasn't talking. By the time he was almost 2, he didn't look when we called him by name. He didn't come show us things, reach for things, try to communicate much at all. Ben had a particularly funny habit of lining up small objects along the edge of the coffee table, and then moving each one an inch or so forward, one by one, like they were in a parade. Once they had all advanced, he got down eye level with the table to make sure they were all perfectly in line.  I had never seen that in a child: and I was a trained preschool teacher!
We had his hearing tested, as best we could since he was not cooperative or even verbal. The specialist felt his hearing was fine. At last, I took him to have the Infants and Toddlers ladies look at him. They were in the building where my girls went to school. They watched him in thier office, asked questions, came to my house to observe and even made another appointment for a school psychologist to observe him....That's when they ever so gently gave thier opinion...

Research! That's what I advise, because that's what we did first. Internet searching, asking questions, making contacts were the activities that kept our minds occupied until we could get our world back to some order. The more we knew about why he acted the way he did and what was being tried to  help others, the better we could help him and help others understand.
 We had two other children, our lovely, bright girls. How would we do what needed to be done for Ben without denying Erin and Elizabeth all the things we thought they needed and we wanted to give them.

Pray! At first the  prayer was a reactive, "How, God? Why? What do we do?"  And He didn't answer all those questions, but He didn't punish us for asking. He had already put in place many friends and family members who became supporters and cheerleaders for us. He also sent us along the way many compassionate and passionate teachers and specialists. Oh, there were the teachers who couldn't see why they should be bothered to try to understand Ben's outbursts. And every year we had to "retrain" a new teacher or new batch of teachers and administrators. But, every year he grew,learning and talking more.