Thursday, March 26, 2009

Stopping and Smelling the Coffee . . .

When you are facing that marathon called autism, sometimes you need to stop and smell the coffee (I have a black thumb, so roses are out!). With all the depressing news out there, stories like the Thai fireman dressed in a Spiderman costume to rescue an autistic boy stuck in a balcony add a bounce to my step! BRILLIANT MAN! Or, what about an old story that never made front-page news: the nine-year-old boy in the U.K. whose mother passed out while driving 70 mph who managed to drive the car to safety? He even had enough wits to turn on the hazard lights. Way to go, Jonathan! This week, a just-released, follow-up study on children with the autism diagnosis in Utah twenty-years ago found that almost half have a good or better outcome ["good" defined as "a generally high level of independence at work and in daily life, requiring some extra support, and a friendship or some acquaintances"]. While they observed that "daily independence" (an area in which Pamela excels) trumps IQ when it comes to outcome, the researchers have no idea what made the difference. They need to do more research to identify what services and issues affected the social outcomes of adults diagnosed with autism. They plan to follow up the entire sample of 241 adults. We have been working very hard on helping Pamela with her anxiety, and it's a good thing! Sixty percent of the participants had anxiety and mood disorders. This article affirms that we are on the right track in working on dynamic thinking skills, which lead to greater daily independence and more fulfilling social relationships.

Sweet Moments
This week Pamela gave me some moments of joy that reveal what started to happen when we slowed down, worked on non-verbals, and spoke with declarative language a la RDI. Last Monday, she turned twenty, but we postponed her party until tonight when my sister arrives in town. That morning, I woke up before Pamela did--a rare event. When she sat next to me on the couch, I wished her happy birthday and kissed her on the hand. For the first time ever, she said, "Ew! I don't like kisses! Yuck!" Instead of feeling insulted, I was glad she expressed how she felt in an honest and clear way! That night, I held her hand and asked, "Are kisses on the hand still yucky?" She smiled and said, "No, kisses are beautiful!" So, I kissed her on the hand! Now, how sweet is that?

Later that afternoon, we were sitting on the rocking chairs working. Pamela lightly ran her finger on my arm in a way that made me feel jumpy. I said, "Ew! That feels weird." I looked at her and laughed, so she knew I was not upset. Then, Pamela grinned at me, said, "Bee!!!" and started to pretend to sting me. I played along with her and said in a high-pitched voice, "Ouch! I'm stung! That hurts!!!!"

Borrowing Perspective
Pamela has learned a great deal about social referencing in the past two years, something she did not do very well for the first eighteen years of her life. One RDI consultant described it in this way:
Neurotypical children are constantly borrowing their caregivers perspective to make sense of new things. They reference their caregivers to determine if a new toy, person or environment is safe or unsafe, etc. Neurotypical children make sense of the world around them through the use of this relationship.

Last night, Pamela joined David and I for our church's Wednesday night fellowship. I brought gf/cf fried rice for her and she sat with me and some friends. While we were eating, someone was announcing the quarterly birthday party for the residents of a independent-living home. The lady explained there will be cake and ice cream, but no presents. Typically, Pamela internalizes "no presents" immediately in light of her pending birthday party and overreacts with mild anxiety. Instead, her ears perked up, she looked at me, and asked, "What about presents?" Then, I explained to her, "The church is having a party for some adults. They are not getting presents. You are having your birthday party on Thursday and you WILL open presents." She said, "Good" and went back to her fried rice. By borrowing my perspective to interpret what the lady said, Pamela remained calm.

While the pastor said a short prayer to bless the food, Pamela dug into her dinner. I whispered, "Pamela," and then pointed to all of the people in the room. She realized they were praying and then I caught her attention, clasped my hands, and looked down. She clasped her hands in respect but could not resist looking around the room to watch people pray. I loved that she responded to my guiding her nonverbally and referenced what other people were doing.

After she finished eating, Pamela sat on the floor against the wall with her journal. She verbally stimmed quietly, but I did not want her to frustrate people with hearing aids. While the pastor said a rather long prayer for the people with prayer requests, missionaries, and other special needs, I quietly walked over to Pamela and sat down. This time, I did something different. I put my finger to my mouth and pointed to the other people in the room. She realized they were praying and again became quiet. She spent the rest of the time during our Bible study, filling out more pages in the nth version of her autobiography.

Coping with a MESSIER WORLD
Yesterday was a hectic day for us. We always pick up lunch or dinner for her at the drive-thru on Wednesdays. She usually chooses a different restaurant in advance, so this time, we headed to McDonald's. I was running late for a dentist appointment, and, when I saw the long string of cars, I silently worried about being REALLY late. Pamela noticed the line too and very calmly said, "Changed my mind. I want Hardees." Yippee!!!!!! No fuss, no tears, no drama!!!!!

This flexibility and resilience in the face of change has not happened in a vacuum. Lately, whenever something is different, Pamela tells us about it. Steve drove home with a loaner on Monday since his car is in the shop. We have three cars: red, black, and gray. Pamela saw the gray loaner, laughed and said, "Two gray cars! Different one." When she decides to do something different, like stay home while I shop, she announces, "Pamela stays home. Different one!" Sometimes, she walks into a room backwards and says, "I'm going backwards! Different!" With her eye for pattern, she has always noticed differences, but now she is able to embrace them, even when that means a sudden and unexpected change about something important to her.

While we are still working through her anxiety over Steve's schedule, she continues to have milder and shorter outbursts when Steve goes to work late (usually because he gets tied up in phone calls or urgent emails before he can slip out of the house). Last Tuesday, we went to co-op, arrived home at about 11:30, and spotted Steve in the driveway, starting to back out. I laughed and passed it off lightly like we caught him doing something naughty. "Look at Dad. He is so busted! He is late for work . . ." Pamela caught my silly spirit and giggled. Steve waved to her sheepishly as our cars passed each other. She smiled and waved back.

This morning, I was cleaning the "office" where Pamela was watching television. I was dusting behind the television stand and accidentally turned off the power strip. I immediately told her, "Uh, oh! I turned off the switch. I'm sorry! It's okay! I just turned it back on!" Pamela was cool as can be. She turned on the television and cable box. Even when she saw the "No video input" alert flashing on the television, she looked down at the cable box and said, "Booting up!" It took a good ten minutes for the cable to reboot and Pamela spent that time calmly writing in her journal! Again, no fuss, no tears, no drama!


MasterpieceMom said...

I love to hear the details of how each event goes. Pamela is doing so well!! Congrats on starting Stage 3 too!!!!!!

Laughing Stars said...

What a terrific post! Your description of things Pamela's doing made me smile.

poohder said...

WOW!! Talk about an improvement in QUALITY of life. Yay, to your family's hard work and RDI! Rhonda