Putting Anxiety behind Us

As noted in my post on our tour of the house that Manly built, Pamela's auditory processing skills have come a long way. We took a beading class the night before leaving on a trip to Pennsylvania. The lady teaching us explained all the wonderful things we were going to do "tonight"—a word that did not sit well with Pamela at five o'clock in the afternoon. Pamela quickly corrected our teacher, "It's today!!!! You're joking!!!" After about three slip-ups, she had our guide well-trained in proper time terminology. Obnoxious outbursts aside, Pamela enjoyed herself thoroughly and required hardly any help in following directions for stringing beads.



While Pamela still has moments of minor anxiety from time to time, she has come a long way. Too many times teachers and parents address behavior from the outside in (manipulating outside factors that happen before, during, and after the situation). I have blogged many posts about dealing with her anxiety and wrote a long series of what helped the most.

About a week ago, the Wii Fit remote was acting unpredictably, so Pamela came to me for help. In the past, I was not able to troubleshoot electronics until I calmed her down (one aspect of co-regulation). When things acted up, Pamela freaked out like many children do. Because she has learned to self-regulate, I worked in peace. First, I spent five minutes playing around with it, making sure the batteries were good and checking the settings. While working, I quietly explained to Pamela my thought process. While she watched me carefully, she show no anxiety. Then, I spent another five minutes searching for the manual. Finally, I studied the manual for five minutes before figuring out what to do (synch the remote to the console). Even though she was fighting the tears the longer it took, Pamela kept her cool.

I participated in a workshop on a recent trip to Pennsylvania. Pamela kept herself busy the first day, sitting on the couch, drawing, and playing with my Nook. On the second morning, the IT people had taken down the wireless Internet. Usually, she watches me like a hawk while I troubleshoot. Watching my progress reassures her. In this situation, I worried that the uncertainty of the process might cause her to freak out. I took her out of the classroom and quietly explained the situation. Pamela seemed content. I also warned the other teachers that I might be demonstrating how to react to challenging behaviors if Pamela became anxious. Then, she said to everyone, "Don't worry! It's okay!"

Since Pamela is handling her anxieties well, I tiptoed to the edge of her competency. The other day, David's friend stopped by to borrow both Wii Fit remote controllers. Pamela was in the tub, so she had no idea of his visit. Then, we ate dinner at a friend's house, and she went straight to bed when we got home. I deliberately did not tell her about the missing items. In the past, I would have mentioned something because being unable to find the controllers would have caused a meltdown.

The next morning, I heard Pamela pacing as she searched for what was missing. She woke me (as expected) and asked, "Where's the remote controllers?" I calmly explained, "Scott borrowed them for a lock-in at his church. He promised to return them tomorrow morning." She listened and said, "Borrowed them. Okay!" No tantrums, meltdowns, or crying.

Because we decided to pick up David from college for the weekend, Scott did not return the controllers until late afternoon. Pamela did not pester me or cry during all the time they were out of sight. No tantrums, meltowns, or crying.

P.S. Since I failed to work in Pamela's play on words, I'm just tossing it here for no particular reason. She decided that a male Canada goose is a Canada gander.

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 . . .

Daddy's Girl

Pamela and Steve are sharing joint attention, a cognitive skill often lacking in autism, as they look at his Blackberry, while he checks his email. Joint attention, a triangulating relationship between two people and an external stimuli, is much more than a snapshot in time. By the age of twelve months, a baby desires "to broaden her own subjective impressions by learning those of her partners. She is borrowing the perspective of another person's mind to enhance her own ability to obtain meaning" (The RDI Book, page 120). We are using this ability to guide Pamela through three cool milestones right now, captured in a very brief conversation caught on video at Walmart the other day.

Pamela is more able to tolerate things that might be broken. I dropped the camera when I tried to turn it on. While I was picking it up, Pamela asked, "Is it broke?" A few years ago, such an incident would be cause for a meltdown. Instead of flipping out, she noticed that I was calm so she referenced my reaction and stayed calm, too.

For some reason, Pamela switched topics to Steve and his running schedule. Because Pamela did not like his unpredictable departure times for going to work she practically stalked him until he was out the door. Last January, as part of our whac-a-mole campaign, we started working on her anxieties and very slowly, but surely, she learned to embrace the idea that he leaves for work at a different time every day and some days he even works at home. Her final tactic was to talk Steve out of running because she observed a pattern between running and later departure times. We guided her out of pestering him about that too once he realized that his soft spot for Pamela allowed her to manipulate him, knowingly and deliberately.

Tuesday morning, Steve's touch pad on his work laptop died. Pamela walked into the room while he quietly tried to figure out the problem. She stayed calm as we searched the drawers for a wireless mouse, located batteries, and realized the mouse was no good. She asked, "Is it broke?" Steve calmly replied, "I am going to give it to the techie at work. He's really good. He can fix anything."

Pamela is also learning to monitor my movements. When we dropped David off at the dentist, she sprinted ahead of me into the waiting room and let the door close on me. Her cousin Jose and I stood outside the door, peering at her through the glass, waiting for her to realize what happened. On the way in to pick up David, Pamela showed much more caution. In the second and third clips, filmed the next day, we are going in and out of a new building and Pamela monitors me much more carefully this time.

Pamela shares a close bond with her cousin Jose, who is only six months older than her. She cracked up him up the other day when he was chatting with one of his friends via webcam on his laptop. Jose asked her to say hi to his friend. Feeling a bit jealous of competition, Pamela said, "P-U! You stink!" Then, she fired her magic finger (seen in the picture to the left) and said, "Shoot her!"

Three Steps Backward in the Annuals of Guided Participation

When it comes to guided participation, Steve prefers a benevolent dictatorship with Pamela in charge. He has a very hard time sticking to what he prefers and the moment Pamela senses him waffling, she runs him over with a bulldozer.

We continue to work on her desire to control him, and the lastest thing to address is iTunes. She does not want him listening to iTunes on the computer, for no good reason other than to wield power over Daddy in my opinion. We were listening to music on Steve's computer when the dragon lady emerged from her den. She started to rant, "Turn it off! X! X! X! Turn it off!"

Steve decided to placate her by playing her favorite songs: a good move if your strategy is to scaffold Pamela into accepting us listening to iTunes. I supported him by snapping my fingers and saying declarative things about the wonderful music.

After four song switches, he said, "I am tired of listening to iTunes. I am turning it off because I want to."

AAAAAAAAAAHHHHHHHHHHHHHHHH! Marshmallow man strikes again.

I fussed at him for letting Pamela win that round. He acted sheepishly and evasively about her not winning because it was his choice.

Then, he made a fatal mistake. He turned to Pamela and asked her, "Did you win or lose?"

She shot up her arms in the symbol of victory and said, "I win!"

Just now, I recorded Pamela who convincingly shared her testimony of said win (even though she is using the computer, she is cognizant enough of her victory to share this tidbit with me):

Pamela 1, Dad 0 . . .

Okay, I'm over it! Deep cleansing breathes . . . calm and neutral, Tammy . . .

Pamela's Brain Waking Up OR Terrible Twos? Part III

The reason why I have had more time to blog than usual is that David, Pamela, and I all have head colds. While David and I are more resilient and can press through conjugating denominators with the sums including imaginary numbers or radicals and conjugating Latin verbs, Pamela cannot. On Monday, she bundled herself up in her red "towel robe" and spent a good part of her day in bed. And, notice that after all the excitement of opening Baby Alive's gift, she can now tolerate having Loonette and Molly by her side.

Pamela has been making wonderful strides lately and has also been seeking greater control over her dad. We are also seeing a couple of habits making me reflect on their greater meaning:

• Pamela started this high-pitched screech on Monday (of last week), the painful day we decided to leave our church, making me wonder if my mood affected hers. The frequency of screeching has diminished since then.
• If we do not respond to her stim or question fast enough, Pamela says in a high-pitched, whiny voice, "Answer me!" I am slowing down that moment, waiting for her to reference me, and then take action. Sometimes, I make a declarative, neutral comment: "I was thinking about what I was going to say and you did not give me enough time" or "I am sorry. I didn't hear you. What did you say?" If someone else didn't hear her, I tell the person Pamela is talking to them. If I was ignoring her stimming, I try to change the conversation.
• When Pamela used to meltdown, they seemed "intrasubjective" because Pamela was reacting, not acting. Her emotions boiled over and spilled out, but she paid no attention to how they affected other people. One benefit of recording is mining an interaction frame by frame. I noticed in the video of the meltdown how Pamela's meltdowns are more intersubjective. Pamela covered her ear, closed her eyes, and screamed. She yelled at me for six seconds. Then, she balled her hand into a fist and pounded on her leg. Within one second, she stopped and assessed my reaction.

While many parents might be frustrated at this turn of events and regretting starting RDI, I am ECSTATIC! Kyra, another RDI mom, witnessed this same change in behavior in her son Fluffy and asked Dr. Gutstein about it. She wrote, "I was greatly relieved to hear him say Fluffy’s behavior is actually good news. Many ASD kids never go through this stage and they need it to develop true mindfulness. He says it’s the brain waking up."

Hurray, Pamela's brain is waking up! Her dynamic thinking is like that of a two-year-old after all of these years! Everything points to it: her interest in dolls and real babies, her ability to converse briefly converse with people unaided, why and how come questions, etc. That means she is hitting her "terrible twos" without all the excess baggage of limited language, potty training mastery, gross motor frustrations, bratty siblings, sibling rivalry, etc. Plus, Pamela has high level static skills we can tap into in helping her tap into this period of dysregulation, that is part of the development of every child.

I was reading Nicole Beurkens' blogpost on her typical daughter's development and dysregulation and it described Pamela's personality, "a very easy [child] – content to hang out with us and do whatever." When her daughter started mastering a new developmental milestone, she noticed her daughter getting mad about everything preventing her from fully exploiting her newfound mobility. Then, Nicole reflected that all of her boys went through this pattern of dysregulation prior to a developmental leap forward. She concluded, "Now I'm able to ride it out knowing that they all go through periods of time like this and it will end."

I cannot tell you how many parents of autistic children, especially homeschoolers who spend 24/7 with their kids, have noticed this exact same phenomenon. Many people I know completely agree with what Nicole observed because they have witnessed it time and time again:

Sometimes parents will call or email to say that their child is suddenly going through a very dysregulated time period – and when we look closer they have either just developed a new skill/way of thinking about things, or they are about to go through a developmental spurt. It seems to be the brain’s way of reorganizing itself - which can be a dysregulating process. Obviously not all dysregulation in children can be attributed to cognitive reorganization/developmental growth spurts, but it is something worth considering if you see it happening with your child. Considering it from this perspective allows us as parents to slow down and wait to see what happens without immediately worrying that our child has regressed or become permanently dysregulated. Sometimes in development we take a step back to take a few steps forward – good to remember for all kids!

Last week I received cards from friends, and they are great reminders to those of us mired in the terrible twos!

Handling Bad News

Before I get into my post, I wanted to share a really thoughtful post about why one mother chose to homeschool her child with autism. I have been connecting to homeschoolers in cyberspace for 14 years. I have heard many, many horror stories such as children being tied to chairs, put in seclusion rooms (but not this heartbreaking), and having their mouths shut with duct tape. Diet violations. Dehumanizing treatment. Bullying. Physical abuse. Sadly even sexual abuse.

But, not everyone leaves the school system for bad reasons. We left because we thought we had a better idea of what Pamela needed. I did not think her teachers did anything bad, but rather they could not do what I thought to be absolutely best for her. Penny wrote a very eloquent post that I could not have written in my early days of homeschooling, and I heartily agree with what she expressed.

I can see signs of our work on uncertainty spilling out into other areas of life. Earlier in the week, Pamela and I spent the day wondering what was in some packages that arrived. She did not bother much at all about opening them right away, which is a good thing. One little thing I love about this clip is how well Pamela is picking up on subtle nonverbal communication. When I was talking, she started watching television through her "binoculators". Rather than verbally prompt her like an ABA automaton, I moved in closer to get between her and the television. She got the message and responded beautifully!


Today, I had to share some bad news for Pamela. I know this sounds mind boggling, but last Friday, Steve came home from a five-day business trip to Santiago, Chile. And, on Monday, he turned around and flew back for another five-day trip. That is 20,000 miles in two weeks! Steve told me this morning that he would not be coming home until Saturday, so I had the "fun" job of breaking the news to Pamela.

One of the major focuses of RDI is social referencing. Our work on uncertainty is a form of social referencing because Pamela is learning by watching my face, tone, and demeanor, that not knowing is okay. "We'll live" when things are uncertain. Rather than melting down, she can pay attention to my reaction and, if I am calm and neutral, then there may not be any reason for her to flip out. Page 12 of Solving the Relationship Puzzle says,

By the end of the fourth month, the typical infant has learned that the soothing voice tones and facial expressions of familiar adults can serve as a reference point, bringing instant emotional relief, even when not being held or physically comforted. Faced with confusing or ambiguous situations, it becomes second nature for babies to respond to their increased anxiety by gazing at a parent's face. If their facial expressions are calm and positive, this produces a rapid reduction in the child's distress, Alternatively if the parent's facial expression appears anxious or it is blocked from view, the child's distress will rapidly escalate. This process, called Social Referencing, plays a crucial role in the further development of Experience Sharing. Through Social Referencing, the infant gains security and confidence in interacting with his world. Once it has been learned, parents can begin more actively introducing novelty and variety into the child's life. They know that, even as they make the inevitable errors in providing too much or too powerful stimulation, the infant will be able to easily recover, through gazing at Mom or Dad and using their calm and happy emotional reassurance as a reference point for his own emotional state.

In the following clip, you can see Pamela's mild meltdown. Mild because I have seen her cry for five or ten minutes over unexpected changes in Steve's schedule. About forty seconds into the clip, Pamela begins to reference my calm and neutral reaction and you can see the "instant emotional relief" she felt by paying attention to me.


Tomorrow, we will have even more practice because the hot water heater stopped working today (and thankfully, my dad, Handyman Howard, lives across the street) and I have two toilets acting up. But, first, I need to practice my own calm and reassuring demeanor (instead of primal scream in a fetal position). I guess that is what happens when you choose to live in a house that is older than Steve and my age combined! (I'll let you do the math . . .)

We'll Live!

Autism Remediation for Our Children is an email list for people interested in remediating autism from the perspective of Relationship Development Intervention (RDI), who might not be able to afford a certified consultant, who are building up confidence to pay for one, who have had one and feel they can fly solo, who are consultants, or who have one and wish to share what they have learned. In short, a mixed bag!

From time to time, someone posts great links to articles or the work of other professionals that dovetail nicely with guided participation (which is the model RDI uses). A recent post spotlighted the ideas of Dr. James McDonald, founder of Communicating Partners, who focuses on relationship over mechanics in his blog.

One post answers the chicken or the egg question, "Which comes first cognitive learning or social learning?" If you really think hard about it, the answer is obvious. Because most autistic children are static thinkers and spot patterns quickly, early cognitive learning such as colors and numbers are easy for them to master. So easy that we ought not to spend any time on them at all! Pamela taught herself to sight read by figuring out how to much videocassette tapes (even pictureless ones) to their boxes! Since static learning comes so easily to them, I believe it is counterproductive to develop that part of the brain even more. Imagine a tree in which some branches are completely lush, full, and heavily laden with fruit while other branches are nothing but sticks. Pamela's branches for patterns, numbers, and static bits of knowledge is the former, but her ability to relate to people is like the latter.

Like RDI, Communicating Partners works on social learning first. Dr. MacDonald writes,

In fact it is now evident that a child will learn more of what he needs to be included in the social world from frequent daily interactions spontaneously than he will from intensive drilling on facts and skills for school. Making a child a successful student does not make him less autistic in real life and less isolated from society. Early and intensive social relationships are needed for that.

I especially love his point that "Treatment is no longer limited to trained and paid persons, but is available to anyone interacting daily with the child." I have watched situations unfold between Pamela and cashiers, kindred spirits who instinctively know how to slow down for Pamela, my random dad and son who both create lots of uncertainty, my patient German mother who knows how hard it is to learn a second language, Steve's doting parents who think Pamela is smashing and love to see what she will do next, her loving aunts who think nothing wrong about Pamela toting around her babies (Baby Alive and Baby David), etc. Often, she applies the discoveries she learns from me in situations with other people. They unwittingly work on our objectives without even knowing that what they are doing is vital!

I used to be very skeptical about what social milestones Pamela might be able to develop since she is nearly twenty years old. Based on what I have seen her learn in the past two years, I completely agree with Dr. MacDonald's assertion that, "contrary to the belief and practice of many, most children diagnosed on the autism spectrum can become much more social and genuinely communicative than they are." As you know we have been working very hard on helping Pamela to feel okay about uncertain situations. The following clip demonstrates two very exciting discoveries Pamela is making (1) we can feel comfortable about not knowing exactly when Steve (her dad) will return from a long trip and (2) we do not have to be upset about broken things (Opa's truck and the radio).


Last week, the radio station really did go out the day we had a tornado watch and Pamela cried and cried for about five minutes. Anyone who has watched an autistic person meltdown over broken things knows how heartbreaking it is to see these very real tears. The cool thing is that I did not spend the week getting Pamela used to walking in the kitchen with the radio on static. Instead, we practiced Pamela seeing my calm, neutral face when we were in the middle of uncertainty and Pamela knowing that, as long as I appear calm, then things were going to be okay in the end.

I will close with another lovely conversation--and Dr. MacDonald wrote a neat post on that topic, too. Steve was out gassing up the cars (an enjoyable task now that the price of gas has dropped).

Pamela asked where dad was. I told her, "I don't know!"

She said, "I don't know!"

Then she asked, "Is it gas?"

I just smiled and shrugged my shoulders and said, "It's okay."

She nodded and told me, "We'll live."

Yes, indeed, Pamela! We'll live.

RIP: The Sacred Hour 4/6/2007 - 11/13/2008 (Click Picture for Background)

Youtube? What Youtube?

At exactly 9:20 AM, the Glaser household weathered a Youtube crisis of epic proportions. While my friends in cyberspace have stared down the jaws of tornadoes the past two nights, hurricane Pamela nearly struck our home all because Youtube had the audacity to be down this morning! Whenever she tried to access the site, the words "Internet Explorer cannot display the webpage" appeared after Exploder tried to load it for her.

My first line of defense was to try Google Video but she would not accept any substitutes! Then, I decided to try tossing Pamela a softball by introducing her to the wonderful world of Mapquest. Pamela loves maps. When we lived in St. Cloud I bought a 1992 Hammond Ambassador World Atlas for only two bucks. Whenever we read books, we consult the atlas and mark all over it! On Thursday's trip to Wal-Mart, Pamela asked for a Large-Scale, Spiral-Bound Rand McNally 2008 Road Atlas. For the past four days, she has poured over the atlas, mapping out fantasy road trips!

I figured it might be worthwhile to try Charlotte Mason's idea of changing your thoughts. Pollyanna did this with her being glad game. In The Sound of Music, Maria chased the fears of thunderstorms away with a song about her favorite things. Anne of Green Gables diverted her thoughts to her favorite tragical scenes from literature. Perhaps, Mapquest might help Pamela forget the tragical loss of Youtube for a little while.

I spent a few moments showing her how to navigate through the site. The waterworks stopped. Pamela's face lit up as the magic of Maquest swept away her disappointment. Before long, she was planning trips to our old homes in cities like West Newton and St. Cloud. She mapped out trips to Detroit and Nashville, two places she has never been. When I came to check on her, she sat in rapture with the atlas in her lap and Mapquest on the screen!

Thank Goodness!

Like all autistic people, Pamela goes the cycles of being intensely interested in one thing and constantly asking the status to verify nothing has changed. She tends to ask repetitive questions about schedules and certain topics. Temple Grandin explains in Emergence: Labeled Autistic,

Constantly asking questions was another one of my annoying fixations, and I’d ask the same questions and wait with pleasure for the same answer—over and over again. If a particular topic intrigued me, I zeroed in to that topic and talked it into the ground.

Pamela gets the same pleasure by asking the same question and hearing the same answer. I suspect the predictability of the process provides more security than rabbit-trail conversations much like flicking light switches comforts Donna Williams as described in her book, Nobody Nowhere,

Switching lights on and off . . . the clicking sound is an impersonal and graspable connection with things outside oneself, like bells and music. It gives the pleasure of sensation denied by almost all touch, and provides security. The more patterned and predictable, the more reassuring.

Right now, the "annoying fixation" is what we call the "sacred hour". For some unknown reason, she has claimed the television room (Steve's office) for herself every weekday at noon. Her brother David must leave the room for an entire hour. She will ask me several times every morning to confirm her sacred hour to the point of being a nag.

My parents-in-law and sisters-in-law visited over Easter. One, who specializes in autism because of Pamela, is co-author of the book, The Sensory Connection and usually has neat ideas. She suggested we try writing a contract. I wrote a contract with Pamela's promises and my promises. I dated it, and the moment she saw it Pamela exclaimed, "Thank goodness!" We both signed the contract, and then she added the words, "I watch video." to the contract.

Pamela did not stick to her promise as diligently as I did, but I think she nagged less. I plan to do an experiment and keep track of how many times she nags on days with and without the contract. One benefit is that, instead of repeating myself, I can simply hand it to her and have her read it aloud.