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 . . .
Monday, May 31, 2010
Thursday, May 27, 2010
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.
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.
Wednesday, May 26, 2010
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:
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!
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?"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.
"The first," they answered. Matthew 21:28-31
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!
Thursday, May 20, 2010
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!
Now, is her memory sharp, or what!
Wednesday, May 19, 2010
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.
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.
Monday, May 17, 2010
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!
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!
Thursday, May 13, 2010
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.
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.
Wednesday, May 12, 2010
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,
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.
"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.
Tuesday, May 11, 2010
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.
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:
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.
Tuesday, May 04, 2010
Magical Microphone
A couple of weeks ago our consultant figured one reason Pamela speaks in power words (one or two meaningful words). She responds so quickly that she has no time to formulate more elaborate sentences. Amy suggested we find a way to slow Pamela down by pausing three to five seconds before I speak and encouraging her to listen, process, and think before she speaks. I recalled an idea shared by Julie B in which she passed around a ball to signal whose turn it was to talk. I decided a more expedient way would be to hold a pretend microphone, withholding it long enough to build think space. As we progressed, I found the following elements helpful in scaffolding Pamela:
The video below represents our first attempt. Even though it looks (and felt) awkward, Pamela formulated much more meaningful communication once we slowed her down. The different between her immediate response and her thoughtful response is quite striking! I loved how Pamela leaned into the microphone as if it were real.
As we have worked on this consistently for the past two weeks, we have relaxed more in our conversations. Since meals on wheels provides so much "scope for the imagination," it afforded ample opportunities to work on this objective because so many unpredictable things happen. If you don't believe me, check out the pictures of the fox I pulled of the recordings I made during our delivery!
The first novelty was having more items than usual to grab: five instead of three. I wanted to comment on the animal statues after the first place, so I stopped. Pamela kept heading to the car but caught on fairly quickly that our paths had diverged. Then, we read a note and had to alter our usual actions. Before we made it to the third place, we saw an airplane AND a gray fox (the real deal, not a statue). We talked about hearing a rooster (happy emotions) and then talked about a dead dog (sad emotions). We noticed the new house being built (an old house had burned down awhile back). Then, we discussed the great grandbaby visiting one of our folks. We talked about a cat sitting on the porch of the cabin where one very poor woman lives. It was almost time for lunch, so we talked about that. Pamela sneaked a mint out of my purse, more fodder for conversation. We also noted the horrid construction on the roads, while we were waiting at a light.
The new issue is Pamela's tendency to say, "Right, right" or "Yes" when she agrees. Yes, we have a plan for teaching her to elaborate when you agree or disagree . . .
- Giving indirect cues to encourage her to pause (the microphones and vocal sounds).
- Providing direct cues to encourage her to pause (hand gestures and "I have the microphone" or "It's my turn").
- Modeling listening while she speaks (nodding, smiling,and watching her).
- Modeling processing and thinking before I speak (looking up and hand gestures).
- Encouraging her to listen and think (gestures pointing to her head or cupping my hand around her ears, telling her to listen and think).
The video below represents our first attempt. Even though it looks (and felt) awkward, Pamela formulated much more meaningful communication once we slowed her down. The different between her immediate response and her thoughtful response is quite striking! I loved how Pamela leaned into the microphone as if it were real.
As we have worked on this consistently for the past two weeks, we have relaxed more in our conversations. Since meals on wheels provides so much "scope for the imagination," it afforded ample opportunities to work on this objective because so many unpredictable things happen. If you don't believe me, check out the pictures of the fox I pulled of the recordings I made during our delivery!
The first novelty was having more items than usual to grab: five instead of three. I wanted to comment on the animal statues after the first place, so I stopped. Pamela kept heading to the car but caught on fairly quickly that our paths had diverged. Then, we read a note and had to alter our usual actions. Before we made it to the third place, we saw an airplane AND a gray fox (the real deal, not a statue). We talked about hearing a rooster (happy emotions) and then talked about a dead dog (sad emotions). We noticed the new house being built (an old house had burned down awhile back). Then, we discussed the great grandbaby visiting one of our folks. We talked about a cat sitting on the porch of the cabin where one very poor woman lives. It was almost time for lunch, so we talked about that. Pamela sneaked a mint out of my purse, more fodder for conversation. We also noted the horrid construction on the roads, while we were waiting at a light.
The new issue is Pamela's tendency to say, "Right, right" or "Yes" when she agrees. Yes, we have a plan for teaching her to elaborate when you agree or disagree . . .