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:


Day Four:


Journal Entry:

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.

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:

Wordless Wednesday: UnBelievable GF/CF Bread That Doesn't Have the Density of a Brick That Our Neighbor Brought from England

Hopefully coming to a Starbucks near us . . .

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.

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?

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.

The Anatomy of a Meltdown Part I

You're in Wallie World and you see this. What is your first impression?
Spoiled brat!
He needs a good spanking.
What a terrible mother!
Can't she control her kid?
My angel would NEVER do that!


Pamela's last big public meltdown Pamela was at the Wallie World in St. Cloud, MN when she was fifteen years old. Meltdowns are bad enough, but the spectators make it worse. Even though we know we have more tools in our parenting tool bag, folks like me feel mortified, clueless, and inept. A friend of mine told me that people reacted much more kindly right after her autistic son had surgery. His scar smoothed things over with the general public until his hair grew back. People usually judge us because they don't understand why a kid that old is behaving like a toddler. It's simple! They have the social and emotional skills of an infant, are easily frustrated, and don't handle change very well.

Over the years, we have developed a thick skin. Pamela gets stares when she says something odd or laughs really loudly in her chortling way. Back in the day, when public meltdowns were like imagining I was in the Calgon take me away commercial. While I love creating autism awareness, trying to get Pamela calm trumped that goal when she was melting down. I blocked them out of my mind because they had no idea how to handle her. I ignored the ignorant for they didn't know how lucky they were.

These pictures depict children the world would judge as spoiled brats. The girl on the left is clearly referencing the person making their life miserable, trying to get her way with the "I hate you mom" scowl. Without footage, it is hard to know if the boy on is doing the same. If he cries and stops to peek at mom, well, he's no different than the girl. Crying and screaming without knowing who is watching, reacting, or judging is a typical autistic meltdown. A meltdown makes people feel like no one is in control.

A child with this level of distress doesn't consider the safety of himself or others. He has no clue about the social context and what is changing or staying the same. If he suddenly quiets when given a treat, it wasn't a true meltdown. Trying to stop a meltdown midstream is like trying to stop a stick of dynamite from exploding after the flame has hit the blasting cap.

Children with autism don't mean to meltdown. Because they have such difficulty with filtering in what is important and meaningful and filtering out what is not important, they have a hard time understanding what is going on and knowing what to expect. For example, suppose mother had promised to take the kids to the park after shopping. Baby brother sees the dark clouds before arriving in the store. Thunder starts to rattle and the rain begins to pour. While in the check-out line, he casually says, "I guess we won't be going to the park."

Big sister, who has autism, never anticipated that the dark clouds, thunder, and rain canceled the outing. She is already worn out from the fluorescent lighting and the noise of the store. She is too big to ride in the cart, which used to calm her down with its vestibular motion. She was already a bit freaked out about having to take a detour to get to the store because of a traffic accident. And, now, more unexpected surprises create the perfect storm.

Why should we be surprised that autistic children have more meltdowns than other children? Many deal with sensory issues, allergies, gut issues, neuro-chemical anomalies, inflexible thinking, difficulty connecting the dots, communication challenges, and problems with emotional regulation. Back in 1995, I attended a three-day workshop on Sensory Integration put on by Bonnie Hanschu (a wonderful woman who died in 2004, doing what she loved most). She gave us an inventory that helped me figure many things out about Pamela--this was before readable books existed on the topic of sensory integration (yeah, I feel old).

Anyway, Bonnie explained why meltdowns are such a problem for our kids. Suppose the green line represents the stress level of an NT, who doesn't even notice little things that affect an autistic person. Something happens and stress hormones flood the body of the NT. Once the situation ends, hormones that decrease stress help the body regulate and the NT recovers. Little things begin to upset an autistic person, and they gradually begin to build up as shown in the blue line. Their bodies are slow to release the anti-stress hormones and, without help, they quickly reach the threshold of meltdown (the red line) and you know the rest . . .



Our children face physical, mental, and emotional dysregulation. It requires a lot of detective work to figure out what creates stress. Physical issues include sensory over-registration (and under-registration because not knowing what is happening may lead to mental dysregulation); sensory overload; and being tired, hungry, sick or itchy. Sometimes, just having to behave like a good boy all day in school is enough to cause meltdowns at home. Mental stress is often caused by feeling confused or incompetent, not being able to understand what is happening, seeing the world in black and white, and finding only one response acceptable. Emotional dysregulation is caused by feelings of anger, sadness, frustrating, and fear, by having mood swings, or strong desires to win, control, possess, respond, etc. It takes many years to figure out what sets our children off.

But, what can be done about meltdowns? Stay tuned . . .

Movie Review: Adam

Disappointing!

I wanted to like Adam so much, and for the first half of the movie, it charmed me. Hugh Dancy did a phenomenal job of portraying Asperger's Syndrome: his shyness, his love of talking about his favorite topic (space), his inattention to the needs of people, his loneliness, his desire for companionship, etc. I "bought" into his character as real and authentic, even though one Aspie bluntly told him his was "competent"! That is what we love about our spectrum kiddos: they are quite truthful. Painful doctors of the unvarnished truth. I also liked seeing him grow and learn to be his own person, especially after having lived with his father for so many years. I loved how he found the right job that suited his strengths.

His love interest, Beth, was trying to help him get a job. His father, who had recently died, greased the skids for the last job. On paper, Adam looked great--a whiz kid. His difficulty in social situations typically became apparent during the interview process. Beth gave him a book on Asperger's and employment and Adam read it faithfully from cover to cover. They even practiced doing interviews so that Adam could feel more competent. All of that is well and good.

One moment broke my heart. It wasn't the obligatory bedroom scene that every romantic comedy must have and thankfully was mild, but gratuitous. It wasn't the two women who adopted a baby girl from China that gave the movie the politically correct stamp of approval. In case you doubt me, I dare you to read Under the Tuscan Sun and then see the movie without coming to the same conclusion. Both movies incorporated both formulas and ticked me off royally. Speaking of which, I hope The Young Victoria, which just arrived from Netflix, doesn't fall into the same mindless trap to widen its appeal. Does Hollyweird underestimate our intelligences that much? Uh, yes. Have you watched television lately?

What broke my heart was when Adam read that most Aspies get around eye contact, which we "evil" neurotypicals demand, by looking at a person's forehead. Do Aspies do this in reality? Yes. In fact, I do this sometimes. When I sing at a funeral, I look at the tops of peoples' heads, even if they are total strangers, because I will fall apart if I see someone tear up. What saddened me is that people completely miss the point of eye contact, which is really a terrible word for what it really is.

We call it social referencing, more than eyeballing someone to death. It means looking to another person for their perspective in unclear situations and interpreting their nonverbal and verbal communication. Even children as young as one year old can do this as evidenced in the classic visual cliff experiment. Even though these babies cannot say one word, they will study, literally study, their parent's facial expression.

While I am not saying all people in the spectrum can master this skill, I know for a fact that at least one has. In fact, Pamela was only a couple of years younger than Adam when she learned to do this. It broke my heart that trying to teach this pivotal skill wasn't even considered as possible.

The Saga of the Sock Box

Last Monday, I had some friends over to discuss The RDI Book. Pamela usually spends that time watching television, using the computer, or listening to her i-Pod Touch. We were talking about how to set up an activity, like cleaning the stairs, with your objectives in mind.

At one point, I talked about the sock box and how we are transferring responsibility to Pamela. I mentioned that I had put socks in it on Saturday and told Pamela, "The sock box is full." Then, I stood up and went to her room, which is near the living room, to check her progress. She hadn't done a thing in the past two days.

Pamela was watching television in her room at the time, and the sock box was right beside her. It would have been a perfect time to roll socks. I mentioned something to her and she snottily said, "Put it away!" very loudly. Rather than get upset or embarrassed because of how she screeched at me in front of my friends, I asked her, "When do you think you can do the socks?" She quietly said, "Tonight."

Why didn't I get upset at her insolence? If we were running out of socks, then I would have pressed her further. If I had spent all weekend nagging her about her chores, then I might have been ticked off. If the house was going to explode if she didn't roll socks, I would have told her what to do and make her do it immediately. There are times to pick your battles. This wasn't even a skirmish.

I walked back to the living room and explained what had happened. As if they couldn't hear! We wrapped things up and, as my friends were leaving, Pamela called out, "I'm doing my socks!" Sure enough, we peeked in the room, and she was rolling away. My heart melted because, in the end, she decided to do what I had asked and took care of fourteen pairs of socks. Fourteen!

If this sounds like a parable, it is not. What I just related is a true story with eye-witnesses! However, it does remind me of the parable of the two sons that Jesus shared:

"There was a man who had two sons. He went to the first and said, 'Son, go and work today in the vineyard.' 'I will not,' he answered, but later he changed his mind and went. Then the father went to the other son and said the same thing. He answered, 'I will, sir,' but he did not go. Which of the two did what his father wanted?"

"The first," they answered. Matthew 21:28-31

I never understood the parable until last week. I always wondered why there wasn't a son who answered yes and then obeyed. Wouldn't it be even better to do both? It never sat right with me that the mouthy guy did what his father wanted. He sassed his dad.

Our church's five-month Bible study on Tim Keller's book The Prodigal God prepared me to finally understand the point of that parable. The parable of the two sons and what we call the prodigal son has many similarities. In both cases, the pharisees are questioning Jesus for the sort of people he serves (tax collectors--the kind of IRS agent who steals above and beyond what the politicians are trying to grab). In both cases, you have a son who disrespected his father and later repented and came back and another son who seems obedient on the surface but in his heart is quite the opposite. In both stories, the sons miss the mark of being a good son: showing respect and doing what they are asked to do because they loved their father.

Why didn't Jesus include the model son in either parable? I think because only one exists. Rather than give false expectations that one of us could be like that, he didn't even mention it. Jesus is the true son. The rest of us fall into one camp or the other. Up until last week, I understood this in my head. Now, my heart is starting to take a few steps in that direction. Pamela is really good at quick responses that require no thought. She said the first thing that popped in her head. It wasn't very respectful. After she thought about my observation more carefully, she realized folding clothes while watching television wasn't too much to ask. When I saw the smile on her face while I was counting the fourteen socks, I knew she did it out of love.

If that doesn't sit right with you, then I have to ask. Do you think she would have rolled the socks out of love for me had I added fuel to the fire? I think not. Feel free to disagree!

A Video Is Worth A Mega Byte of Words

Before you watch this "mega byte of words," here's the context. Pamela attended a non-categorical preschool class for special needs children at LaPlace Elementary School from the ages of 2.5 to 5.5 years old. During her last year there, we started the rotation diet and sent food to school. Up until that point, Pamela ate whatever parents brought for special occasions and snacks. I am not crazy about the sticky gooeyness of Crispy Marshmallow Treats and only made them for the first time last week. We followed the recipe on the Fruity Pebbles box and used a gf/cf version of the butter and marshmallows.



Now, is her memory sharp, or what!

This Is Your Brain on Netflix

One of my listmates compared executive function challenges like to having a Netflix brain. No matter what happens the Netflix brain will take the next step, just as the movie provider will send the next DVD in the queue. In real life, events happen that cause us to shuffle our priorities. Suppose you are reorganizing the garage and you managed to clear off one shelf. A huge rainstorm comes and you notice a leak that drips on boxes of clothes on the other side of the garage for the next yard sale. You are going to move that box, get a bucket to catch the drip, and, if the leak is severe, take steps to make the repair. A person with a Netflix brain would continue to clear off the shelves and take care of the leak last.

Beyond planning and prioritization, many aspects of executive function affect how children in the autism spectrum perform life skills. For example, they have a hard time estimating how much time something will take and how to split their time to finish the job with good enough results: if they have 20 minutes to do the bathroom, a 30 minute job, then they have a hard time appraising the areas that look the worst and hitting them first. They have a hard time inhibiting impulses so, during the transition from the mirror to the sink, they become absorbed in flicking the light switch off and on for ten minutes. Since cleaning the bathroom is the most boring thing on the planet, they pay attention to something they enjoy instead: replaying a video in their head. On the other hand, they get in such a groove trying to clean every impossible spot off the ancient bathtub that they fail to turn their mind toward the toilet. The CEO in their brain has a hard time with monitoring, either paying attention to too much or to too little, not knowing what to filter in and what to filter out, and setting up new priorities when new information arises.

The other day, I walked our local RDI discussion group through the process of thinking through how to set up an activity like cleaning the stairs. One thing to consider are issues that get in the way. One parent is due to deliver her baby next month, so working on the stairs with her very active son is out. One boy had brain surgery last winter and the stairs are a no-go. We're the only family with stairs, so the others wouldn't be able to do the activity with their kids anyway.

That doesn't matter one bit! The activity itself is not important! The secret is how you frame it for your objectives. Since my friends are in the early stages of RDI, they would focus on parent objectives like going slow and using lots of nonverbal. They might spend the entire time working on head nods and shakes. My objective is focusing in encouraging both of us to listen, process, think, and formulate a meaningful response. The key is how you structure the activity in a way that spotlights your objective.

Tools are one thing to consider. The larger vacuum cleaners would be too much to handle for all of the kids. While the Swiffer wet-vac is light enough for Pamela, it is still too much for the little kids, some of whom fear the noise. They would need to use cloths. The first time we used a Swiffer, I made sure everything was ready to go: it was fully charged with an empty bag and a brand-new wet cloth. Down the road, I will leave it uncharged, full, or dirty for variation and problem solving.

I figuring out roles you need to consider the skills your child has. You wouldn't try the Swiffer out for the first time on stairs: the floor would help build competence. You could still use the Swiffer by having the parent get the big stuff with the wet-vac and the child mop up stragglers a wet cloth. If the child is adept at the Swiffer, then you could switch roles. Attention span is another issue. If your child can only handle an activity for five minutes, then you may want to have three different five minute activities to lengthen attention span or start adding variation or switch roles to spice things up. Novelty freshens the mind as long as it doesn't induce a core meltdown!

Our stairs provided a great set-up for easing into novelty. We started at the top and worked our way down. Every step was the same until near the end, where a wicked turn, odd shapes, and curves came into the mix! If the natural structure of an activity doesn't provide variety and novelty, it helps to think it through in advance: I can miss a spot, drop the cloth, notice that the cloth is dirty, get a new cloth, sneeze because of my allergies, etc.

The video clip of what we did the next day is below. At the top of the stairs is a hallway that makes a great reading nook. Steve sat there while we took care of the steps and observed how much Pamela smiled while we did what is typically a dull, tedious chore. Under the window is a table with family pictures, which were covered in dust. Rather than simply spray and wipe, we talked about every photograph and even had a moment where tears of joy rose up in me. I realized later that we had never had a conversation about these pictures and saw how to elaborate dusting by talking about knick-knacks as we went.

Pamela and the Three José's

Once upon a time there was a girl who lived in the Kingdom of Carolina. Her loving parents told her they were going to Charlotte for José's graduation. The girl, whose name was Pamela, woke up early in anticipation of seeing her cousin José who attended his first year of college at UNC Charlotte. Later she ate a very big breakfast, that was just right by the way, before she put on nice clothes and got in the gray horseless carriage. The journey was long and Pamela grew tired. She took a very long nap in the carriage.

They arrived in Charlotte and met with her father's friend José. He was too old and too tall to be her cousin José. She politely shook his hand and said, "You're the wrong person!" Her parents tried explaining that we would see a different José, not her cousin. She bravely kept her disappointment quiet.

Then, she met another José who was the tall José's father. He was as old as her grandfather. She shook his hand and only said, "Hola." She was getting used to seeing the wrong José. She bravely kept her disappointment quiet.

Then, she saw a young man who was her age and only a little taller than herself. His name was José too, but he was the wrong José. He was not her cousin who liked to play shooting games by pointing their fingers at things. She asked, "Where's cousin José?" It turned out that the two José's were roommates at the college in Charlotte. The young José said, "He went back to El Salvador on Wednesday." Even though she was sad to miss her favorite cousin, her parents were not surprised. They were happy to see the three José's and the rest of this unfamiliar family. She bravely stayed quiet and decided to go with the flow on this very unusual day, full of unexpected surprises.

The first surprise was that they skipped lunch! Her parents did not seem worried, and she was still full from breakfast. Pamela stayed calm and cool. They were in stop-and-go traffic for a long time and then had to walk a long way from the parking lot to the arena for the ceremony. Her parents did not seemed worried, and she was not too tired because of the nap. So, she stayed calm but cooled off after getting inside. After all, it was a very hot day.

Pamela enjoyed the band playing, but the long speeches and the time it took for 1500 students and almost as many professors to file in seemed to take forever. She looked over at her parents who enjoyed chatting with the family of three José. Little did she know that even her own mother was getting antsy and light-headed an hour into the ceremony and secretly hoping Pamela would ask about lunch or beg to get out of there. Inside the calm and cool presence of mind of everyone in the party led Pamela to believe that they were fine with skipping lunch and watching a very long, somewhat dull ceremony. [Note: The planners did a fantastic job of herding the students and faculty in and out very, very quickly, and our slight boredom was no fault of theirs.]

Suddenly, things began to liven up. First, they spied the lady two rows down with foot-long, shiny, pink nails. I, the narrator, am not exaggerrating--those babies were L-O-N-G! Then, they heard a graduate announced whose name was David Joseph, just like Pamela's brother. They searched the program and found another graduate with the name Pamela Ann, which surprised Pamela to no end and caused her to exclaim, "What the heck? That's not Glaser!" Pamela relaxed and began chatting with the youngest José's mother and even held her hand, which caused all to pronounce her a dear, sweet girl. In a quick chain of events, they witnessed the ringing of the bell (eight dings only), the running of the mascot which looked strangley like a dumpy witch, and the turning of the tassels, which was topped off by a very loud boom and firing of colorful streams and gave Pamela a feeling of fireworks.

The two families headed out. They located José the graduate and his friends and posed for some pictures. To pass the time while José and his friends were saying their good-byes, which take forever with Salvadorans, Pamela wowed them with her calendar trick: the eldest José thought he would trick her with a date from the 19th century, but she knew that September 18, 1898 and December 6, 1931 were Sunday (domingo) and May 10, 1932 was Tuesday (martes). After a few more pictures, Pamela's patience was wearing thin, so we all headed to the hotel for dinner, or was it lunch?

Pamela finally ate a bunless burger and fries at six o'clock! Her parents were amazed beyond belief that she had held out so long without even one hint of a meltdown. She chatted a little bit with the two mothers and even clicked her tongue and sang snatches from the songs Lollipop and My Boy Lollipop for the ladies.

Moral of the Story: Kids are a lot more resilient when we don't tell them what they are supposed to be missing!

A Woman's Prerogative

She may rant and rave. She may try to manipulate you. She may even tell you to shut up! But, it's always a woman's prerogative to change her mind.



The TAG concert band performed a medley of John William's movie scores. Some you will recognize. The sad thing is that, when the Jaws music started, the younger people in the audience did not get why we old people were laughing! David is playing the timpani.

Fuzzy Food . . . Fuzzy Logic

Fuzzy logic, one skill under the umbrella of executive function, is quite a challenge for folks with autism that static therapies find hard to teach. Claire LaZebnik explained about her eighteen-year-old son, who graduated from ABA years ago,

"My son who's on the spectrum is a very rigid thinker. He needs clear-cut definitions of right and wrong. Anything hazy or gray confuses him. For instance, if I try to get him to see that a friend behaved badly, he'll often get upset with me because a friend is a 'good guy' by definition, in his book.

While I respect her experience as a parent, I disagree with most of Claire's opinions in the rest of the article. I agree with her that fuzzy logic affects how our children (adult or younger) interact with people and make decisions that affect their employment or level of independence. The lack of it holds many of our kids back. We are helping Pamela learn fuzzy logic while working on her ability to restate what another person says in a way to show she agrees or disagrees. We came to this conclusion after seeing a new habit of saying "Yes" or "Right" or "No" in our work on slowing Pamela down long enough to listen, process, and think.

The first time we tried the plan, my camcorder botched the recording. I made a list of topics, one per index card, picking things in which we had clear opinions: favorite rock band, favorite rock song, favorite classical composer, etc. We took turns making a statement (P for Pamela and M for Mom). The listener reframed the sentence to be in agreement or disagreement. I wrote the sentences as we went to spotlight the pairs. Pamela caught on quickly and, since then, I have been working that in our conversations. In fact, on the way to watercolor class today, I carried it too far and Pamela, who had her music on the car, put her fingers to her lips and said, "Sh! I'm listening!" I loved it because she was being a typical teenager in that moment.

What is fuzzy logic? Well, the best place to start is the fuzzy food lurking in the back of your refrigerator! How do you decide what to keep and what to toss? There are no hard and fast rules. For example, if you go by the expiration date, what about organic milk opened a week or so ago? The date says it should not go bad for another month if unopened. Has it been long enough to be bad? Most people try the smell test at that point. What about stuff in containers? In our house, palmitos are safe because they don't sit in the refrigerator long enough to go bad. What about other stuff? Look at it suspiciously for any mold. Smell it if there's none. Think about when you originally cooked it or opened it. Another good rule of thumb is that the further back it is in the refrigerator, the more cautious you ought to be. When you come right down to making that hard decision to toss or keep, it is hard to explain. Unless it's fuzzy or smelly, you apply fuzzy logic.

This lively topic gave Pamela scope for the imagination. The act of investigating foods by smell and by looks naturally slowed us down. Some of her reactions were quite comical, and she was very much living in the moment and making declarative comments. A few times, Pamela tried to get me to stim on David's favorite show (King of the Hill) but I ignored her. I tried to encourage fuller sentences by my reactions, saying the wrong thing or giving background ("It says December 2010" or "I don't know what's in here" or "I don't know how old it is" or "I bought this yesterday"). Sometimes, I stalled by pretending to struggle with formulating my words. She was an active listener for she filled in the blanks or reframed my comments. We had plenty of chances to give agree or disagree statements.

We cleaned out the refrigerator too! P.S. For more food for thought that is fresh and not at all moldy, check out Laura DeAngelo's post on the compensation trap and how to guide a child into becoming a competent communicator.

Practically Perfect in Every Way? Not!

When the children were younger, I lost every round of the "Well Begun Is Half-Done" game (otherwise titled "Let's Tidy up the Nursery"). We never had a nursery, and the kids' rooms never stayed tidy. David could destroy a room in one minute flat, searching for that one elusive Lego piece (he had several plastic bins of these). While listening to a read aloud, he would suddenly dart off to find the perfect costume, leaving a mess in his wake. Steve traveled a lot, and I was too tired to juggle everything. As much as she adored The Big Comfy Couch, Pamela never rose to the occasion of the ten-second tidy ("Who made this big mess?"). Nor could she point things into their proper place as the Banks kids did in Mary Poppins. Neither child of ours could ever find an element of fun in cleaning up.

Today, our house stays fairly neat. We moved into a house large enough to have a room or two that stay presentable and a large closet upstairs and outdoor sheds for boxes and junk. Steve stopped traveling so much, the children grew up, and their toys learned to stay put. David started keeping his room straight after he learned to read books to himself and outgrew Legos. Now, he is able to clean most anything in the house, especially when he's saving up money for a new gadget or a trip. Now that we are focusing on executive function, Pamela is starting to understand chores.

"First of all, I would like to make one thing quite clear . . . I never explain anything."

Fortunately for you, I am no Mary Poppins! However, I will leave explaining executive function to a another blog post.

Chores provide opportunities for us to work on our relationship while we do things that have to get done anyway. Because I seek dynamic situations that teach her brain how to monitor and filter (an RDI Stage 3 and above ability), I avoid schedules, to-do lists, reminders, rewards, etc. These compensations take the place of the executive function milestones I am trying to achieve. Ideally, I would like Pamela to learn exactly how to clean her bathroom in less than 30 minutes. However, if I friends will be over in twenty minutes, I would rather her appraise what needs to be cleaned, take only ten minutes in the bathroom, and spend the rest of the time tidying up her room. Context often changes our priorities and a job well-done can mean different things, depending on the situation.

Every day, I try to spend up to an hour working on different chores, focused on the RDI objective du jour. I pick different tasks like folding clothes, taking care of the pets and wild birds, baking, filling out paperwork, processing mail, etc. The other day we matched and rolled socks while I focused on giving Pamela opportunities to listen, process, think, and speak. I assessed that she was ready to take full responsibility for the sock box. She possessed a lot of knowledge: she recognized matches by color and by size, saw the difference between inside out and right side out, monitored their location, and accepted that socks might have no match. She had applied knowledge too: she rolled the matches she made. She turned inside-out socks right-side out. She picked up any socks that fell to the floor. She put the loners back in the sock pile and could even carry on a conversation while working, as you can see in the following video:



I plan to transfer responsibility for the sock box in two stages. First, we will work simultaneously: I will fold clothes while she works on her sock box. I will come up with different ways of appraising whether she should roll socks: "The sock box is full" or "Dad is running out of socks" or "I only added four socks to the box". That gives us the opportunity to work on our current RDI objective by having a conversation and gives her the opportunity to think about when she should fold socks. Once she understands when she needs to fold and willingly does it, then I will start keeping the sock box in her room and she can fold socks while she watches television.



It can be very frustrating that our children have a hard time with chores. It looks so easy. How hard can it be? Can they really be that lazy? How can they be so smart and so disorganized? When you find yourself asking those questions, it helps to remember that autism means that parts of the brain don't talk to each other very well. The boss of the brain has such a hard time managing the workers that what seems simple is really difficult. A friend forwarded a quote from Heather T. Forbes that puts it all into perspective:

Raising children is a process, not an outcome.

If you stay focused on the process (staying centered on the development of the relationship, staying in a place of love, and accepting your child's own organic process), each step of the journey will be more enjoyable and more rewarding.

If you stay focused on the outcome (worried about the future, staying rigid, and expecting an attainment of predetermined goals) you'll be parenting from a fear-based paradigm that will ultimately compromise the relationship with your child.