Tuesday, January 04, 2011

New Year Reflections

Here is the only math I will put in this post. My next post is another matter. To celebrate the New Year Pamela style, I printed out a dodecahedron calendar from RightStart on cardstock for her to cut out and put together. Pamela loves calendars and she can tell you the day of the week you were born given your birthday and year. A cyber friend emailed me to ask Pamela if when she could "recycle" her 2003 calendar because of the repetition of the fourteen different kinds of calendar. In five seconds, Pamela told me 2014. She loved kicking off the first school day of 2011 making her own calendar.

Cutting out this calendar appeared quite complicated and, at first, Pamela looked overwhelmed. Then, I guided her into breaking down the job into smaller steps:
  • I picked up my scissors and snipped off one edge. I handed it back to her and she realized that the job becomes less intimidating when you focus on one corner.
  • At first, she focused on edges while I snipped out the corners. Once she was comfortable, she cut both edges and corners too. When she felt stuck, she passed it back to me and until we cut out the entire outline.
  • The next phase was cutting the solid lines joining two calendar pages. Pamela caught on right away. She cut and I "cleaned up" any sloppy cutting--her fine motor skills still need sharpening.
  • Then we took turns folding along the dashed lines.
  • Because glue is just not her thing, I glued and taped the insides until the calendar was finished.

This process reminds me of how we have taught Pamela many things that seemed impossible at first. At first, I feel overwhelmed and then I think about what small things can she do to get the ball rolling like I did with having her work on the outer edges of the calendar first. Sometimes, seeing her do some thing small helps me see that she can do more than I expected. Then, I slowly work in something more difficult (like snipping off the corners). Sometimes, she figures out what to do by watching and imitating my actions. Pamela also knows she can turn to me for help when she is stuck, making her more willing to try something new. When an expectation is beyond her reach, I quietly step in and take care of those things (cleaning up sloppy cutting and gluing and taping) without making her feel incompetent for not being able to yet. YET!

Knowing that today's "yet" is tomorrow's milestone keeps me positive as we slowly plod along.

Speaking of milestones, the other day, we had the most delightful little conversation. To give you some perspective, at 10, Pamela had LOTS of words, mainly nouns and phrases, but could not put them together in a sentence because of her aphasia. We had tried autism programs like Teach Me Language off and on, but they were not effective. By 14, not much had changed in being able to put words together so as to make sense! Then, we found the association method, which is for kids with aphasia and other severe language disorders. By 18, she could speak in very short, limited sentences. That's when we stumbled on RDI, which gave her a newfound ability to communicate without words (reading facial expressions and body language, having the desire to communicate, sharing experiences, etc.). Being able to fall back on nonverbals smooths her path to communication when she is having glitches with her verbalization.

Last year, Pamela turned 21 years old. We continue to work on her nonverbal and verbal communication in context, focused on full meaning, without direct prompting, and without constant corrections. Yes, you read that right--WITHOUT. She can relax and trust me that sharing what she thinks is not going to bring out the drill instructor. If she makes herself clear enough for me to understand, then we continue the flow of conversation. I don't worry if she has a grammar glitch or a wrong word or even an invented word. While she is not having a back and forth exchange of ten perfect sentences, she is up to two or three turns when the moment is right. Here is a recent short conversation:

Me: "Pamela, you were right!" (I intentionally left out information to see what she would do with it. It is a way of encouraging her to communicate without prompting.)

Pamela: "Right about what?" (Don't you love that question? She cared enough to ask!)

Me: "Burger King" (She noticed the Burger King sign coming down the other day; I thought they were fixing it.)

Pamela: "Is it closed?"

Me: "Yes!"

Pamela: "Is it moved?" (Earlier in the year, the McDonald's closed for two weeks while they were moving into a new building.)

Me: "No. Burger King didn't build a new building."

It is never too late to try something new. But, it's important to find things that are small and slow and steady. Sometimes, I think LF children have been bombarded with too much and they shut down and give up. Sometimes, we feel overwhelmed by too many things to do and too many decisions to make. Autism is a very complicated thing, and, sometimes, no matter what parents do, the child struggles. We need very slow, gentle learning situations where we all can process and think before interacting. Speaking without thinking, speaking automatically, speaking without ideas and connections and meaning is just talk. Communication is more than words.

Yesterday Pamela asked one simple question that revealed a sophisticated train of thought three steps ahead of us. Even though she doesn't always participate, she pays attention to our conversations. The black car is in the shop, so Steve borrowed the van at work to get home the day he dropped it off. The van has been sitting here since then. Steve left it at the office today and got a ride to the airport for a business trip. He asked me to pick up him on his return later in the week. He also mentioned that he was picking up the black car before the weekend. While he and Pamela were running errands last night, she asked, "Where am I going on ___day?" Steve had no idea what she meant. Then, she added, "Get the black car." Suddenly, Steve realized that he would need me to go to Charleston with him to pick up the car. Pamela had reasoned all that out in her mind, and clearly a great deal of thought went behind her simple question. While she probably lacks the ability to explain her logic, her question is evidence of her ability to reason.

Last Sunday, we saw evidence of more milestones in the making. Her first experience with death was when her great-grandmother died in 2004. It upset her greatly and we weren't allowed to mention the "d" word. Over the years, she started asking questions. Where is her body? Where is her soul? Does her soul have a mouth? Is her body a skeleton? In 2006, my great aunt died and Pamela wasn't ready to face it. We all drove to North Carolina, and Steve dropped David and I off at the funeral and took Pamela somewhere to kill time. In the past year, Pamela has seemed less fearful and asks questions from time to time.

When we learned of Uncle Jerry's terminal illness, we told Pamela about it. She first said, "It's alright. He'll get better." We told her that wasn't going to happen. His body was too sick. She asked, "Pass away?" We confirmed the truth for her. We visited him a couple of times and she never acted fearful around him and interacted with him like she always did. When we told her he had died on Christmas Day, she said, "He's in heaven with Eugenia. What about the babies?" I had no idea what she meant until she started talking about Baby Alive. Pamela wanted to know if she could bring her three babies to North Carolina. And, she did!

When she first asked about going to the funeral, we left it up to her. Aunt Edna had the body cremated and planned a memorial service on his birthday next September. So, all that Pamela would need to experience was visitation with family, friends, and friends of friends at the funeral home plus a short ceremony with military honors. We hoped she would try because it would be the least intimidating way to approach this. Pamela joined us at the funeral home and spent most of the time sitting in a comfortable arm chair, watching everything.

When the Air Force airmen started the flag folding ceremony, I was on the other end of the room. Since Pamela had been fine up to this point, I figured she would be okay. And, she was. I had forgotten this little thing called a gun salute, which happens before the bugler sounds "Taps." I hate to admit it but I jumped at the first shot. Then, I worried about what Pamela would do? Would she notice? It was so loud. How could she not notice? Would she get upset and freak out? I didn't hear a peep until after the second shot. Then, a calm voice asked, "What are they shooting?"

I quietly moved next to Pamela and explained that they soldiers were honoring Uncle Jerry because he was a soldier too. Her serenity surprised me because clearly she knew those were not fireworks. I think Pamela noticed that everyone in the room was standing still and calm. She didn't panic because nobody else was.

So, Pamela has reached another milestone: saying those cute things that kids say in public that make people chuckle. Okay, so she's about twenty years late. Who cares! A milestone is a milestone!

The other new thing is emphasizing her words by spelling it out. "I said 'Now, N-O-W, Now'!" This evening, Pamela and I were at my parents' house. She was tired and wanted to go home. After we ignored her first two requests, she said, "I want to go. G-O, go!" And, as she was saying the letters g and o, she was signing them with her hands using the manual alphabet!

Pamela definitely made her point!


Anonymous said...

Lovely post, thank you! It is beautiful to hear about these developments, and to learn about some different perspectives/methods for encouraging language development!

Anonymous said...

Great Post. sincerely, DianeG.

Lisa Neal said...


A friend referred me to your blog. Love it! I have home-schooled my 11 yr. old son with autism for 3 years. He shares Pamela's "calendar memory", and can tell you what day of the week a past or future date was. If you tell him your birthdate, he'll remember it forever.

I have always promoted speech & conversations with him in the exact way you describe (i.e. your Burger King conversation with Pamela). I call it Floortime Speech when I try to describe it to others. Driving's the best place for it with my son, as he's interested in all the visual stimuli that we see, yet he's not overwhelmed by noise or crowds when we're in a car. He has made huge progress in conversational speech over the years through this intervention.

I'm going to take a look at RightStart on the web. Always looking for appropriate educational materials for him. Right now, I create a lot of his work by taking "typical" curriculum of a 3rd to 5th grade level (depending upon the subject) and then modify it visually plus condensing or adapting the contact to suit his needs and interests. It's very time-consuming.

Math's a particular challenge right now, because he has hit a mental block with the double-digit multiplication algorithms (forgets the order to multiply each number, then gets confused when you add the products to get your final answer). It frustrates him, so I'm just skirting around it, and dabbling with other math concepts that he enjoys more.

Welcome any suggestions of resources that you have.

God bless you & your family.

Anonymous said...

Thank you for so generously creating your blog. I just read your post regarding RDI and episodic memory. A therapist gave me a link to your site. I can't wait to read more. I have three disabled children 5yrs, 4 and 3. My 4 year old is autistic. The other two have other issues. Im just learning about RDI and it makes sense. Thank you you are an inspiration.