Ann:   I had to structure Robin’s environment. She could not occupy her time in a positive way so I had to occupy it for her. Otherwise, that’s when she’d have a meltdown or get into trouble.
I had to be consistent in occupying her time because she did not understand change. I could not allow her to be confused. If I said we were going to eat lunch and the phone rang, she would scream because she wanted lunch. Everyone’s heard the phrase, who has a child with autism: “She wants what she wants when she wants it.” Well, to help Robin learn to control that mindset, I had to be consistent. By the way, it took years to change that!
 

Ann:   I had to control Robin’s thinking pattern and get her to pay attention to me. Robin would much rather stay in her own little world of autism doing her own thing.
To do this Robin’s language therapist implemented positive behavior modification in the therapy environment and I carried it over into my home schooling. This structure with charts and rewards, focused on the positive things Robin was doing and I kept stretching her limits, when she’d achieve specific goals.  
Kathleen, I am a very dramatic person, I’ve been told. Rewards, praise, even panic or anger at times, was very verbal with full body movements. We laughed a lot and I made a big deal out of the smallest things.
I had to be very dramatic for Robin to keep her attention focused with me.

Ann:   Attitude - that’s what I’m trying to say. Thank you. Friends and relatives today tease me about things I used to do: 1) I always stood at the reviewing stand in parades ringing a cow bell to get the girls to smile for the judges. 2) Evidently, with overnight guests, I used to play John Phillip Sousa’s Washington Post as their wake-up call. Today, I laugh when I hear those involved sharing these stories. I guess I was a little dramatic!

 
Ann:   I have a video attached today using the clicker.
 

  

Ann:   Yes. I needed to move past the paperwork so she’d concentrate more on the assignments. Even with the clicker, there were times she’d say, “You forgot to click” and she was right. This told me she was very aware of her behavior and I think the sound of the clicks was a reassuring measure for her.
 

Ann:   Oh, thank you Kathleen. That’s very nice. Trust me, I thought of it many times. I do feel I have a wealth of knowledge to share - hence the book - however, I’m starting a blog on my website to have parents and professions come together to share ideas. Many parents and professionals do want to learn and many, not just myself, have incredible experience how things work for our children.  
 

Ann:   Yes, it can be used on the web site now by contacting me. You know, I listened to a podcast (www.autismpodcast.org) this morning about autism and employment. They were generalizing about the importance of transition into adulthood. Employment starts with behavior, involvement with family, and wanting to be employed. All that happens in childhood, not teenage or adult years! Parents of ten year-olds need to know this NOW.
The second video today and the pictures, Kathleen, show what I’m talking about. I was very fortunate. I was referred to a psychologist when Robin was ten that pushed my priorities for community inclusion. Robin joined a majorette corps (I knew the instructor) and a 4-H club. Details how this happened are in the book but the point is that Robin’s life was inclusive even though she couldn’t relate to her peers . . . because her behaviors were appropriate. Twirling did not require language skills. Presentations were rehearsed word-for-word as part of our school assignments daily for months before the event.
All the background preparation required for Robin to be successful didn’t matter. What mattered was that she felt successful. Our family worked hard for Robin because we could see her success. Our philosophy was to keep moving forward. We never said “can’t”

 

Ann:  You know, parents don’t usually see the progress - it’s so slow and sometimes seems so insignificant. It is important for people around them to give praise and encouragement. Just last month Robin had her annual visit with Dr. Bradstreet. He raved about their conversation and how much better it was than the year before. Parents know how important that feedback is. I beamed and well as Robin! Of course, he pushed too. He told Robin he wanted her to make the long drive next year. Oh, well, another goal!
 

Ann:   Yes. Also in the book you’ll see I had charts for myself to keep me on task. Instead of getting frustrated she wasn’t doing something I expected, I’d chart the goal and write baby steps to make it happen.
 

Kathleen:    I can see where this would have the added benefit of ‘normalizing’ the process of charting (from Robin’s perspective)....charting the process of goal progression becoming more of a typical practice than if she were the only one in her experience utilizing the process.
 

Ann:   Yes. I remember I had a chart on the back of the bathroom door for the other girls. Wash hands, flush, put the towel back, etc. We had company and our friend, Tom, came out of the bathroom laughing. He said, “I did everything on the chart!”
 

Ann:   Most individuals with autism learn through their vision. Auditory is weak. People use too many words in a sentence, muffled, whatever. To keep Robin’s vision on the task I needed objects, i.e., charts. The charts were visually simple, my sentences were short and to the point, and I got “in her face” to make sure she was looking at me.
I am amazed at teachers . . . and parents who give these long elaborate explanations, expecting understanding. A therapist told me one time that Robin probably gets the first two words of a sentence and the last two words. So, obviously, that wasn’t working for her. Reinforcement, reinforcement, reinforcement is what worked.
 

Ann:   Good question. Actually the chart I used for myself sounds like the Reggio Emilia protocol.
For Robin’s charts, we did them together. They were always on the table and the assignment focused around the behavior. She could see me chart something each time. She then grafted the points onto another chart, colored it and they all went on the refrigerator.
Example: I started charting basic behavior. Good feet on floor. I showed her my feet on the floor, she copied me and then I gave her a check mark for doing it right. I kept my feet appropriate and each time she was appropriate, I gave another check mark, smiled and said good. (Robin’s feet were always moving randomly in the past.) When this was 50% during a lesson, I added another goal on the same chart, Good sitting straight. Then another and another.
I focused on appropriate body movements, then internal behaviors like Good frustration, Good staying on subject.
Robin was proud of her charts and showed them to everyone who came into the house. She did get rewards but the charts were the real focus.
 

Ann:   Robin had trouble with journaling. She was more concrete. She couldn’t express herself without my prompting and direction, partly because of her limited language and partly because of her academic ability. She did not recognize emotions or feeling or wants or consequences.
 

Ann: Yes. But more than that, it was my way of helping her to be acceptable by the people around her. She couldn’t have outbursts in 4-H or majorettes. She had to behave to be accepted. I was ALWAYS there. She was appropriate because I was her reinforcement. I never charted in public but she KNEW I was watching.
Some parents will say, I can’t do that (NO CAN’TS, remember) or that’s not .................... I say, it worked and I needed progress for Robin. Enough said!
 

Ann:   Exactly. You know, that word ‘self-regulating’ even today keeps creeping up. Obsessive Compulsive Disorder, spending money you don’t have, living in deplorable conditions, keeping a job, making friendships. These are all lack of self-regulating in adulthood. All of which many people, even without autism deal with on a daily basis.
 

Ann:   I’m looking forward to next week. Thank you for allowing me to share.