Wednesday, June 30, 2010

A New Word

Last week, we received four caterpillars, which quickly pupated. We spent the next two days studying the chrysalises. I was thrilled on the third day when Pamela remembered the first syllable of her new vocabulary word chrysalis and on the fourth day she remembered the entire word! Years ago, when we developed Pamela's language with the association method, we learned that multi-sensory methods worked best for her. Pamela listened to me say the word, and she repeated it and used it several times when sharing her observations. She watched me write it and saw how it was spelled. She wrote it in her nature journal, saying each letter as she wrote it. Most important of all, she tied it to a previous known (cocoon) and had personal experience with a chrysalis. All of these factors enabled her to learn the word more quickly than usual.



Day Three:
video

Day Four:
video

Journal Entry:

Monday, June 28, 2010

Anatomy of a Meltdown Part III

I am sorry to interrupt this nature study but there was a loose thread from my series on meltdowns that is hanging and must be wrapped up . . .

I pointed out in my previous post how many of Pamela's meltdowns revolved around fear, anxiety, or unexpected change. Parents have to develop their own set of priorities in handling meltdowns. One reason why we focused so heavily on prevention was to avoid harming others (or ourselves) with an out-of-control child. We chose to leave an event early rather than ruin the enjoyment of others. When prevention failed, people generally welcomed us back because they saw how hard we we worked to avoid meltdowns in the first place. While it seemed unfair that we missed out on so much at first, in the long run, our efforts worked. Pamela has lived a rich and interesting life, including travel to some unusual places.

Another priority was to build up a bridge of trust between Pamela and us, so we picked our battles. Pamela was five the last time we rode an elevator in her early childhood. When forced, she not only cried, screamed, and fell onto the floor, but she also grabbed the doors as we hauled her inside. Not a pretty picture. Since every building with elevators must also have stairs, we opted to for the latter. It was inconvenient at times but offered us exercise. Rather than destroy her trust with unnecessary tests of the will, we tried to compromise when it seemed reasonable. We could have forced the issue but we hoped to avoid filling Pamela's memory with the two of us digging in our heels over something insignificant. Why build the habit of obstinacy when it might be unnecessary?

Sometimes, I had to trust Pamela. During a field trip exploring a grocery store, she refused to go to the storage areas that customers never see. She was absolutely adamant. I passed David off to one of my homeschooler friends, and, when they came back, my friends told me that a huge box-crushing machine made an awful racket and they wished they had stayed with Pamela! After that incident, nobody questioned Pamela's sensitive hearing. When we couldn't avoid a situation, I focused on calming her and consoling her.

In retrospect, I am glad we didn't force her into scary situations. In time, she learned to conquer her own fears. Toy Story 2 helped her learn to ride an elevator back in 2003, and she has had no problems ever since. Last spring, she desensitized herself to balloons. Because Pamela learned to trust that we would only push her through fearful situations when we couldn't avoid it, she willingly followed our lead. I think it is one of the reasons why Pamela is a really good apprentice. In fact, the first time we saw our RDI consultant she said we were the first family to walk in her office with solid co-regulation and a working master-apprentice relationship. What does that mean? During activities in our first assessment, Pamela modified her actions based upon my actions, even if they changed or seemed unexpected, and followed my lead in learning new tasks without trying to control the situation or refusing to try.

When facing meltdown central, it can be hard to decide whether to prevent, guide, or persevere. For us, it boiled down to context. If we had control over the setting, we focused on prevention. If we had plenty of time and flexibility, we tried guiding her thoughts and calming her fears. If we had no alternatives, then we did the best we could and let go of the guilt. Sometimes, we assessed the cause and focused on Pamela's needs. Does she need more structure? Is it too noisy? Is there an easy way to set limits and boundaries? Does she need time alone in a quiet place?

Another thing to avoid is adding fuel to the fire and making it worse. When eyes of the nosy people of Walmart are glued to you, it is easy to flip out and join in the meltdown. It's not fair and you didn't ask for a child with autism, but those busybodies are too ignorant to get it even if you had all day to explain it. While remaining calm may not calm your child, losing it usually increases the heat. Since our children are not processing very well, talking, asking questions, and threatening punishment are typically ineffective. Demanding eye contact is also a waste of time because they won't be able to understand your nonverbals either.

Over the weekend, I had explained to David that it is like when he was a little boy and used to argue for the sake of arguing, even when he was spouting nonsense. If we try to explain, discuss, or console with words, Pamela ends up shooting off her mouth without saying much, "Super spies! Be kind rewind!" He was skeptical until today. Pamela started blubbing about something really minor and rather than engage, I let her vent and looked at her calmly with my eyebrows arched, waiting for her to finish. She stopped after fifteen seconds and, at that point, we had a conversation. Typically, an episode will last five minutes because David tries to reason with her, which only adds fuel to the fire.

Once the firestorm is over, it is perfectly alright to give authentic and consistent feedback about the situation. "I was so sad about your crying at Wal-Mart. People were staring at me. Next time, I can take you out of there if you need a break." Tone, facial expressions, and gestures ought to match what you are saying. If your child is verbal, after they have calmed down and recovered, you might talk about what happened to find out how you could have prevented it.

Our children can learn from these situations when everyone is consistent in setting limits. In our case, Steve has a soft spot for Pamela, who can be sweet and charming when she's not acting like Fidelita. When she wants to test limits, she invariably hits him up because she knows that I am the iron lady. Both children knew my shopping rules when they were little. The cart stops until the whiny "It's taking too long" child zips it, thereby making the long trip even longer. All requests for candy, toys, videos, etc. must be negotiated before we leave the house. If a child comes close to embarrassing me, we will leave a full cart at the store and said child will miss the next couple of outings. My tough love policy only worked with Pamela because I coupled it with prevention.

Here is a quick summary:
  • Know your child: social, emotional, and language abilities; what causes physical, mental, and emotional dysregulation; difficulty filtering in what is important and filtering out what is not; what triggers outbursts.
  • Be prepared before you walk into a potentially volatile situation: have a plan of action; locate an escape route or a quiet room; come in two cars; bring a bag of special toys to keep your child preoccupied; preview the setting with the child in advance to help you develop a plan.
  • Take steps to prevent a meltdown: avoid potential triggers if it’s one of those days; watch for stressed-out body language; leave the setting; apply any sensory strategies until you and your child relax.
  • Understand what a meltdown means: lack of awareness of others; overwhelming stress; inflexible, confused thinking;
  • Stop, look, and listen; breathe; ignore the bystanders; apply any sensory strategies that you know calm your child down.
  • Do a post mortem on every meltdown to figure out what happened and what you can do in the future. Keep what happened in perspective: autism isn’t easy on anyone.
  • Think about what your child may be like in ten years when he is bigger and stronger. Focus on teaching self-awareness, self-calming strategies, and prevention.

Thursday, June 24, 2010

Do Caterpillars Have Antennae?

When we were in Boiling Springs, I had to sneak off to an outlet mall because David, who is quickly approaching Goliath-size, had outgrown yet another pair of running shoes. While there, we checked out an education supply store, chock full of twaddle, completely devoid of living books. Since I figured we wouldn't escape without buying something, I decided to be proactive and lure Pamela with a butterfly hatchery kit. It worked!

After we got home from the conference, I ordered the coupon for live caterpillars that came with the kit (costing three dollars for shipping and handling). As promised, a box containing a sterilized food cup in which four painted lady caterpillars lived arrived. (You can order the caterpillars without the hatchery too.) Because it is so stinking hot right now (my pink ball cap which no male in my household dare touch had salt rings from my hour-long walk this morning), they arrived completely grown. We missed the molting cycles leading up to the final one unfortunately.



Day One:
Many education theories assume that children are little bags into which you pour knowledge. If you clothe the facts with enough entertainment and fun, children will learn everything that must be known for the test. Of course, that kind of learning is usually short-term and doesn't ever make it to long-term memory. Charlotte Mason and RDI both focus on the process of making discoveries and observing carefully, not the product. In the first video of our day one observation, I go at a slow pace and guide Pamela into making discoveries. In talking about what we saw, Pamela made several discoveries: how many caterpillars we have, how long the caterpillars are, what the brown stuff was, what was wrong with Eric Carle's caterpillar, and what is special about the lid. I let Pamela initiate how to do the drawing and I didn't start drawing until she was well into her picture. We left many questions unanswered, but, as my ultimate hope is to hatch eggs and watch the life cycle from the beginning, I think we will eventually figure it out together. After we wrote our observations, we talked about what we might expect the next day. And, boy, were we wrong!



Day Two:
On the second day, Pamela focused on coloring first. I guided her to study the caterpillars first because something was different today. All four caterpillars had moved to the lid and one was already hanging upside down in its characteristic J formation. At first Pamela didn't observe carefully, but once she did, she quickly concluded they were making cocoons. I didn't correct the word because I knew it would stick with her better by mentioning it while doing our nature notebooks. Then, we colored yesterday's drawing and, by the time we finished, another caterpillar hung itself upside down. We wrote our narrations and, at that point, I taught Pamela a new vocabulary word, chrysalis. Because of her aphasia, I limit flooding her with a bunch of words and deliberately chose to introduce only one word at a time.




Journal Entry:

Tuesday, June 22, 2010

Absorbed in Minutia

Most people vacation in the summer, but we typically don't. We pick the oddest times of the year to travel. In the fall, Pamela and I will join Steve for his high school reunion with lifelong friends in Central America. (Don't feel too sorry for poor David who will be holding the fort and caring for pets when he is not attending school: he went with Steve two years ago.) Since Steve has a mandatory meeting in Chile the following Monday, Pamela and I will join him for that trip too. He really had to twist my arm to convince me to go. (Maybe not.) In the winter, we are pulling David out of school for a week for all four of us to take a cruise to the Bahamas. Spring is way too far out to consider, although technically ChildLightUSA's Charlotte Mason Conference occurs in that season.

This summer, we are quite busy--almost too busy to take a vacation. Steve works hard selling toilets, runs, keeps up the yard (a monumental task in the summer), and forces himself to relax (a full-time job because he is one of those people who feel guilty for chilling out). David is studying for the written test to get his driver's permit and doing more ACT preparation (our motto is that you can never take it too many times). He is also preparing for a mission trip to Haiti next month. Besides hanging out with his friends (think: jam sessions), he practices the drums and guitar in his free time, helps his dad with the yard work, takes care of the bird and fish, and reads (he just finished Animal Farm right before we saw Toy Story 3, which should have been called "Toy Farm").

I am absorbed in minutia. Thinking through everything going on next year, I need to get some things done this summer or winter will kill me. I'm also trying to keep up my habit of sticking to a Bible reading plan and walking the dog for an hour while listening to books on my MP3. Unlike my husband who is the king of endorphins, I never feel fantastic after exercise, even when I was in the Navy and physically fit. Audio books motivate me to get out of bed and face the heat. I loved Little Dorrit and am finally getting into The Mysteries of Udolpho now that the heroine is developing a backbone and has stopped fainting everywhere--I thought she had a serious case of hypoglycemia. I am also planning out Pamela's school year by piloting a Charlotte Mason curriculum that is a year or two from being released. I get to pioneer how to adapt it to a person with special needs.

As for Pamela, we are working on an RDI objective (noticing whether a person is available to speak with her--especially important when I am on the phone). She enjoys spending time outdoors, waiting for the mail, and occasionally getting on her swimsuit and playing with the hose outdoors. I also have her working on a special project which I will blog over the next month or two. She is still keeping up the sock box, which overfloweth at present, requiring me to extract a promise that she would attend to the matter tomorrow.

Monday, June 14, 2010

Treasurin' and Ponderin'

For the past five years, I have connected with kindred spirits at the Charlotte Mason Conference headed by ChildLightUSA. Last year David joined me and had a blast making friends at the Teen Conference. Pamela must have felt left out because she asked to make it a trio this year. As she isn't autonomous and can't keep the hectic pace of the teens, she hung out with me.

We arrived Tuesday night for dinner with the Smiths, caught up with old friends, made new ones, and listened to music. I spent most of Wednesday in meetings, so Pamela and David hung out at the apartment until dinner, when the conference actually began. Because of Pamela's greater need for downtime, I embraced the idea that "slow is the new fast" and carefully selected what we attended together. I made every plenary session that I really wanted to attend. When I wasn't presenting, we picked Pamela-friendly workshops on crafting and sci-fi movies.

Pamela even had opportunities to practice our current RDI objective (appraising whether someone is available to speak and waiting if they are not). Leading up to the conference, I explained that I would be doing presentations and how I wouldn't be available to talk then. I even brought my laptop and let her play on it to keep her happy. I know, not very Charlotte-Mason-like to encourage your kid to have two straight hours of screen time. That's the real world.

For my first presentation on mathematics, I got turned around trying to find the stairs to the third floor of a building in which I had never been, only to find that (a) the name and password I needed to log-in to the computer didn't work, (b) the room was eighty degrees, and (c) it would only get hotter as the morning progressed. Then, I learned that someone from the math department at Gardner-Webb was at my talk (gulp) while I hoped and prayed Pamela would kindly let me finish without asking if Julius Caesar drove a car or a chariot.

God answered that prayer! Pamela was a doll. I made it through the three issues I wanted to address on Charlotte Mason's thinking about mathematics. I think the mathphobes sensed the awe and wonder of the Fibonacci series, which pops up in the most surprising places. A couple of people had "aha!" moments, and we even had time for questions.

Friday night was the highlight. After a full day, I dropped Pamela off at the apartment with David for some downtime. I facilitated the special needs processing session with a headache and, after we finished, I made it back to the apartment with a blistering headache. I laid on the couch to rest, only the hear Pamela pester me with her request to stay put for a long, dull evening rather than explore Broad River Greenway. All head-pounding aside, I truly wanted to relax with friends in a beautiful setting, but my head hurt too much to argue. I resigned myself to my fate and told Pamela I was disappointed, but that I understood she was tired.

After a good nap, I sat up and munched on some pretzels. Pamela asked, "Where are we going?" I didn't know. Then she announced, "The park!" I smiled and grabbed her hands and kissed them in gratitude. Then, I did the Snoopy dance around the apartment while Pamela smiled in amazement at how easily she could amuse her mother.

We arrived at the park to see two displays by an astronomer with cool-looking models and pictures of the stars and a collector of bugs who had all kinds of creepy crawlers on display. Pamela was not at all afraid of the tarantula crawling up his arm. We started walking down the path and Pamela loved being in the woods. "It's a forest," she said.

We stopped at the cabin where musicians, including our very own Janet Pressley blew us away with her gift for the blues. Pamela said the cabin reminded her of Little House in the Big Woods and asked if it had electricity. She went inside to explore while I chatted with friends for a little while. Pamela got bored, so we continued down the trail.

She said, "Just like The Children of the New Forest."

"I loved that book!"

Pamela added, "Father died. Jacob died."

I added, "The kids were all alone."

We arrived at an overlook with a splendid view of the river. I wanted to take a picture of Pamela. She refused, saying, "No electricity." I realized that using a camera might spoil her imaginative mood, so I suggested that I was a time traveler from the future and wished to take a picture of the river to show my friends. Pamela was cool with that, so I snapped these shots.




Pamela wanted to head back so she said, "Let's go to the man village!" a la The Jungle Book. I suggested animals we might see on the way, like panthers, bears, and pythons, and she laughed. We spent a few more minutes hanging out with friends near the cabin and then Pamela spotted the wooden playground and explored that too.




We drove back to the apartment and, along the way, I treasured and pondered that lovely night. If I had forced her to come, would her mood have been as sweet and magical?

Wednesday, June 02, 2010

The Anatomy of a Meltdown Part II

We all know what meltdowns are, unfortunately. What can we do about them?

Back in 2006, the kids and I spent three weeks living in a high-rise apartment in Santiago, Chile while Steve worked on a computer project for his parent company. Pamela, a veteran traveler, had a blast riding the Metro, eating at different restaurants, sampling sorbet, walking in the beautiful parks along the river, touring museums, attending a rodeo, and riding a cable car to the top of Cristobal. Because she enjoys the adventure of exploring a new place, she adapted very well. We were very careful to space out our activities enough to give her downtime and suffered no meltdowns until the night we were supposed to leave.

It happened at the airport. Because Steve was traveling on business, he took a different airline and his red-eye flight left an hour before ours. No problemo, right? Wrongo! We waited and waited and waited for about five hours before they finally told us the bad news. At two o'clock in the morning, the attendants announced the cancellation of our flight and began herding us to the hotel where they were putting us up. While Pamela didn't become completely unglued, she cried and cried loudly for about twenty minutes. David and I knew how difficult this was for her to process, so we weren't angry. It truly was understandable, especially because it was way past our early bird's bedtime.

Something else happened that put the whole thing into perspective. About two hours before the bad news hit, an ugly American had spent way too much time pounding the brewskies in the lounge. He showed up belligerent and behaving very badly. He completely lost control of himself and very quickly a crowd of twenty people surrounded him while someone called security. They hauled him out of there in a straight jacket. His outburst showed us that Pamela's little crying spell wasn't all that bad.

Moments like these are not fun, and families of children in the autism spectrum face them more often than most. We accepted them for what they were--extreme frustration--knowing that, if we learned from them, we might become better equipped to prevent them down the road. The more we know about Pamela and how she thinks, the better we are able to guide her through the challenges of life, whenever and wherever they may occur.

The key to handling meltdowns is preventing them in the first place. How? By putting out the flame before it hits the blasting cap. It is not as impossible as it sounds if you understand your child and what to expect at her level of development. When Pamela was under the age of six and highly volatile (imagine the stick of dynamite sweating nitroglycerin), I practiced the same skills that a child learning to cross the street uses: stop, look, and listen. When she was four, we were at Tulane Medical Center and Pamela had a meltdown. Although I avoided the elevator, she still freaked out when we reached the waiting area. I was puzzled because she had no problems during an earlier visit the previous winter. After she calmed down, I noticed an usual sound and asked the receptionist what it was. An air conditioner! I added low-toned rumbling to the list of noises that frightened Pamela.

The first step of prevention is to become aware of the triggers of meltdowns: physical, mental, and emotional issues that add to Pamela's level of stress. Being aware of potentially explosive situations gives you time to anticipate: think of a back-up plan or an alternate strategy, locate an escape route, remove her from the setting, calm her down to lower her level of stress before taking another step, etc. When Pamela was very little, we expected to leave events early if things proved too much for her. We looked for a quiet room where she could hang out before getting overwhelmed. If one of us had to stay, we came in two cars. I brought a bag of things to keep her preoccupied. We took the stairs instead of the elevator. Occasionally, she surprised us and stayed for the whole enchilada.

Understanding Pamela's sensory needs was my most effective tool. Every autistic child is different, but I learned early on that Pamela craved and loved vestibular stimulation. When she was four years old, I noticed she cried every time I tried to skip an aisle at the grocery store. I didn't let her box me into a routine or listen to her crying all the time by counting, "One, two, three! WEEEEEEE!" Then, I zipped past the aisle, pushing the shopping cart just fast enough to put a sparkle in her eye. Years later, when I enrolled her in a homeschooling co-operative class, I was her aide, looking out for signs of increasing stress. By reading her body language, I knew when she was growing more frustrated. Rather than wait for the explosion, I put out the flame by walking with her into the hall, spinning her until her body melted, giving her some deep pressure hugs, and getting her a drink of water. The first year she needed that about once an hour to last through a five-hour day once a week. After three years, Pamela could handle the whole day without any sensory breaks.

Sometimes, previewing a situation in advance helps. When Pamela was four-years old, we flew to Germany to visit my parents. She threw a major fit walking through the jetway to board the plane. Once aboard, she calmed down immediately. Getting off the plane, I noticed that the sound of the engines echoing down the hall had bothered her. Five years later, we were planning a trip to see Steve's sisters in El Salvador. Between two rounds of Auditory Integration Training, her own maturity, and our improved ability to guide her, we weren't sure how she would react. Two months before our trip, we had to pick up my mother from the airport. In that pre-911 world, we got permission to walk in a jetway with Pamela for a dry run. She had absolutely no problem, and I was so relieved.

Sometimes, no matter what you do as a parent, no matter how capable you are, there is nothing you can do to prevent a meltdown. Sometimes, the burden is too much for our highly sensitive children. It helps to know what to do when your child has totally lost it.

Stop.

Breathe.

Slow down.



I know. People are staring. They think you are the worst parent in the world.

Get over it!

They are in the dark and are completely ignorant about what you and your child face every day. If they had to walk a mile in your combat boots, they would wilt under the pressure. They really don't know much as they think they know.

I have been there. We were new to a church right after we put Pamela on the gluten-free, casein-free diet. She was six-and-a-half years old. Steve was traveling on business that weekend, so I had the kids with me. We arrived early, so I could practice with the choir, which sang in the front of the church. I had arranged for a friend to watch the kids for me, but she was late. Fifteen minutes before the service, we quickly rehearsed two songs. The choir director turned on the microphone to the new sound system and Pamela went berserk. She began doing the Indy 500 around the altar. The people who came early to pray before the service were appalled at her behavior.

I stopped, looked, and listened. The only thing that was different was the sound system. Turning it on triggered the meltdown. I became mindful of what I could control. I asked the director to turn off the microphone; then I grabbed Pamela. Since I had already lost my chance to win the mother of the year award in that church, I did the unthinkable. I sat down on the steps of the altar, took Pamela in my lap, and rocked her until she could stand up and walk out of there with a little bit of dignity.

I know I must have looked like some crazy hippie mom. I didn't care.

Pamela was growing bigger every day. Her autism wasn't going away. By then, we had decided to avoid hauling her out of ugly situations. Some day she would be stronger than us, and we wanted to teach her to do two things: (1) recognize when she was getting frustrated and take steps to avoid a meltdown and (2) calm down quickly and walk out on her own two feet. Fourteen years later, Pamela has accomplished both goals.