The Good, the Bad, and the Ugly

On Friday, I saw all the triplets together for the first time in a while. And since I can’t characterize the whole evening as either successful or awful, I thought I would offer the break-down.

The Good

    Lawrence was in a great mood on Friday. We went to the pool where we have been working on a particular phrase weekly since the school year started. He climbs on the ropes that separates the shallow and deep end and I bounce him in the rope. When we first began in September, I would say “Bounce, Bounce, Bounce…” as we bounced. Then I began to prompt him to say it, touching my finger to his cheek, and saying “Larry, use your words. Say “Bounce.” We continued this process and faded the prompts for the last three months, and now he’ll bring me to the rope and say “Bounce Please” without any prompting, which is awesome.

Now that this one is established, we’re going to work on adding “come please” to his repetoire. Since so often he grabs our hands to take us places, I have a feeling this one will catch on quite rapidly, provided his parents and other caregivers are consistent.

The Bad

Aaron, the neurotpyical child, has completely ceased speaking to me. I tried to explain to him that once I was Larry’s TSS, I would need two hours of just “Larry and Cale time” each day, but that we could have some “Aaron and Cale” time afterward. This arrangement does not sit well with him, and he is using a vow of silence to express his point.

The Ugly

Friday evening hurt my heart when it came to Josh. First, on the way to the swimming pool, he escaped his seat belt, and when his father told him to sit back down he lunged at Lawrence. In order to protect the now whimpering Larry, Josh’s TSS and I had to physically restrain him. I held his forehead and one arm while his TSS had a hand on his chest and one on his arm. Josh looked terrified, but when we let him up he immediately made another lunge. So we had to hold him in that position for five minutes until we arrived at the pool. Although no one was hurt, it felt awful.

The next three hours went really well, and Josh was really cooperative and pleasant and his usual fun and non-aggressive self. So when the parents asked if I could babysit Josh while they took Lawrence and Aaron to a party, I readily agreed (after establishing that I had all the important phone numbers immediately accessible). Our first twenty minutes went quite well, but then he wanted to go play in the hose outside which had frozen on this winter evening. So I took him into the jacuzzi to play with the water there instead. This also went quite well, until Josh got out of the bath and began to pee on the floor. As I grabbed a towel, he began to lick the pee that was now all over the floor, and, stupidly, I yelled, “Josh, STOP!” which made him really upset (he hates being yelled at). He ran from the room and I chased after him with a diaper. When we got back to the living room (this is a house with several winding hallways), Josh curled up on a couch, which is usually a sign that he wants someone to sit neck to him. I went to get his diaper on and he screamed and kicked over the coffee table with his feet. When I turned to right it, he reached out to pinch me and I jumped out of the way, onto the stones piled next to the fireplace. He then tried to bite me and I was forced to (gulp), push him over, so that I could avoid being bitten. I ran up the stairs and hid behind a barrier to call his dad while Josh destroyed the living room beneath us. For fifteen minutes we stayed in these positions, me perched on the balcony watching as he poured out his juice, pulled lights off the Christmas tree, and threw his shoes at the television.

The night ended with neither of us hurt in any physical way, but mentally and emotionally exhausted. I never want a night like that again.

Thoughts: I need to A) bulk up because one person restraining is far less scary than two, so it would be far better if it were just me, B) Learn safe (for both of us) ways to deal with Josh’s aggressive behavior. I think a course offered at the agency I TSS for would be a great idea, but I have heard no mention of any plans for this as part of my training.

An ant in the toilet

I got out of the shower today, and saw an ant sitting on the edge of the toilet seat. Without thinking, I flipped the insect into the bowl. He began to swim around, first in circles, then in a straight line. Eventually he made it to an edge, crawled up about 6 inches, and fell back into the water. The more he fell in the water, the more slippery he became, and the harder it was for him to climb the edge of the bowl without falling back down. The ant climbed again and again, but never suceeded, so eventually I sat him on the edge of the seat, dressed, and left the bathroom.

I’ve been pondering, since that event, whether or not I should have helped the ant by moving him to the seat. Bear with me for a moment: a house ant lives an average of 6 weeks, or 42 days. 42 is half of 84, which is the average number of years for a white female human. So for an ant, one day is the equivalent of two human years, so every hour is a month, and every two minutes a day. Let’s say I watched the ant for about 15 minutes before I gave it a hand. That would be the equivalent of nonchalantly doing for a person what they had been struggling to do for themselves for over a week. I imagined being that person, struggling and struggling to do something, and then watching someone do it for me without a second thought. And I felt crushed. I felt like all my self-esteem rushed out of me in an instant, because someone could, without even thinking about it, do something which despite my best efforts I couldn’t quite manage to do. I also felt insulted at the presumption of the person who reached in to help, thinking that I wanted the assistance in finishing the task, because if I had tried for a week and had yet to succeed, it must mean I would never accomplish my goal without help.

And then I got to thinking about Charger. Every once in a while, he and I do a puzzle together, usually one with 9 or 12 pieces. Yesterday, he went and grabbed the 24-piecer off the table, one which he had never attempted before. I spent fifteen minutes watching him work with the puzzle. I guided and turned a few pieces, and encouraged the work he had done thus far. But once he had 12 pieces in, he couldn’t seem to make a match with the remaining 12. He worked and worked and worked, but got nowhere. So I, thinking he must be frustrated by all this work going nowhere, reached in and put most of the pieces in their place, letting him finish the last two or three.

In my mind, at that moment, I thought I was doing the right thing. I thought that the endgoal was completing the puzzle, seeing the picture the jigsaw would produce. I realize now that the picture was irrelevant. What was important about the experience was trying something which hadn’t been done before, and working on it to prove to yourself that it could be done. I missed the boat. I stepped in when I should have stepped back.

I went back  to check on the ant. He was again sitting in the water, struggling to find a wall that would lead him out. And though I watched with interest, I didn’t step in to lend a hand. I knew the ant would do it on its own, or die trying.

The quest is complete!

Which quest?, you might ask. The quest for the complete, nonecholalic sentence. Yes, today, Charger, for the first time in my memory was able to give a complete sentence without first being told each word to use. How did this miracle occur?

Our session was winding down, meaning that DDD time was fast approaching. So I told Charger he could go and get the book while I cleaned up the mess that was left over from last week’s babysitting nightmare (perhaps more on that later).

He walked up to Amy, our front desk attendant, and asked so sweetly, “Can I have Deisel’s Devious Deed, please, Amy?” My jaw dropped, as, I imagine, did hers. I opted to see how far we could push it. “Hey Charger, don’t forget to say _” But he beat me to the punch line. “Thanks, Amy.”

Somebody’s been taking etiquette lessons. He’ll have to teach me sometime.

Some ideas for working with echolalic speech

When your child’s speech consists almost entirely of delayed echolalic speech, life can be frustrating. You know he is physically capable of speech, so why is he talking at you instead of to you? You hold on to any single word that you cannot pin down to a video and cling to it like a life raft. You go to bed each night praying that tomorrow he will say a spontaneuos sentence, or even just one self-initiated word.

But what can you do to ease the transition from echolalic to spontaneuos speech?

One suggestion is to slightly veer off the script and see how your child will react. Be wary though, as the child may not respond well to an alteration in the script.

• Good experience: Charger was talking through a Leapster game where you sorted food products based on the first letter. We did three food items directly out of the game. Then when he paused, I threw in a food item that wasn’t in the game, for example saying “papaya”. He took the change in stride, going through the script until he got to the naming the letter part and said “p” which is, in fact, the first letter of papaya. This was a successful off-script moment.
• Bad Experience: Charger and I were examining animal cards. He was scripting from one of his many wildlife videos. One line from the film says “Three baby ____ and their mom, a ______ family.” Once we got to the seventh or eight animal, I added “and dad” to the line when I repeated it back to him. He responded “and Mom”. I responded “and dad.” He began to get worked up and I had to back down before he reached the point of no return.

A second option is to provide a physical representation of the scripted line.

     For example, when Charger scripts from his Ratatouille leapster recipe game, we make the recipe out of playdoh. This way I know he is connecting the words to a function, and not merely verbally stimming. We’ve been doing this for several months, and yesterday, he actually initiated his own activity based on a script. He was playing with a whale and a dolphin in the pool, and he placed them on a boogie board. He then scripted, “Get Ready, Get Set, Get Wet!” and dumped them into the water. I was as excited as if he had used some natural speech, because this was pretend play he had initiated all on his own.

I’m always looking for new ways to use his echolalic speech to create meaningful activities or conversations. What strategies do you recommend?

Stumped

Charger and I have developed a pretty solid routine over the past several months. We tend to spend 15 minutes on each of eight different activities, usually three of which are 2-player games.

So Monday, I went in expecting to do the same. Charger, however, had other plans.

Last week I brought in a copy of “Deisel’s Devious Deed”, a Thomas the Tank Engine story my library was selling for a nickel. Charger went wild; he loves the story in side called “Duck’s Close Shave” which he knows from a video of his.

So Monday, he begins by running over to the book shelf and grabbing this book. One time, he reads me the story. The rest of the time he either quotes from the video or recreates his own version. Because he’s showing some spontaneous creativity, I let this go on for two periods (one half-hour). By the end of the half-hour, we have read the story together 11 times.

• So I take the book, and say, “Okay, all done Thomas the Train. Let’s find a new game to play.”
• Charger: “Not!”
• Yes, you need to come into the main room (where we keep all his supplies,) and pick something else.
• “Deisel’s Devious Deed.”
• No. Deisel’s Devious Deed is all done. We will read it on Tuesday.
• “Duck tried to stop. But it was too late. He crashed into the Barber Shop….” (quoting from the book).
• Charger, listen to me. We are all done Deisel’s Devious Deed. You need to pick something else.
• Not!

I walk from the room and give the intern secretary the book to place in her desk. I figured out of sight out of mind. I walk back in to the play room.

• Charger? What are you doing?
• Deisel’s Devious Deed. I remember seeing this one. Was it here? (now scripting from a memory match game)
• Charger, you will not find the book. The book is all gone for today. It will be back on Tuesday. (I write on the board: “Tuesday, Cale and Charger read Deisel’s Devious Deed.”) There, now we won’t forget.
• I remember seeing this one. Was it here?

He spends the next hour and a half opening every item in the playroom and main room looking for the book. I try and get him interested in play-doh, Uno, Robot Race, a different book. I offer M+M’s, toy snakes, toy cars, pencils with Lightning McQueen, anything I can possibly think of but he keeps on searching until his father arrives to pick him up.

When I tell his father about the day, he simply responds, “Sometimes Charger perseverates on things.” “So what should I do?” “I’ll be darned if I know. I’m as stumped as you.”

So readers, I present this issue to you. Tomorrow I will see Charger (today was cancelled due to previous engagements), and I know he’s going to want to read DDD. Do I let him read it or keep it hidden? If I do let him read it, at what point should we be “All Done DDD?”

Who am I to you?

One of the big differences between the 3 ASD boys I’m working with this summer is the way they respond to me as an inividual.

Charger: Charger “likes me for me” as the song goes. When I get in the car he yells “Cale! He came back!”. We have certain rituals that he only does with me like the Ratatouille Recipe Script and the “Whomp”- Thank-You hat game. He can identify a picture of me on his mom’s computer and regardless of where I see him he’ll come up to me with my name on his lips.

Lawrence: To Lawrence, I am known through context. I am the babysitter who does nights. He enthusiastically greets me when I get to his house and we have a few special activities, but most of them only occur once a day because they are nocturnally based (bathing rituals, pajama games, etc.) Seeing Lawrence out in public, out of context, there is no response.  Even when I walk up to him and say my name, there isn’t a flash of recognition.

Josh: To Josh, I am mostly a tool. Other than Mom, Dad, and his siblings, all people seem to blend together for him. If he needs something, he will grab the nearest adult to get it for him, regardless of if it is a stranger or someone he knows. If he wants cuddles or jumping, if you’re in the house, you’re fair game. He seems to have begun to connect me with my camera (which I have on me at all times at his house), but I can’t really tell.

This phenomenon seems interesting to me. I’m not sure if it is a personality trait, an effect of IQ or level of autism, or if perhaps Josh or Lawrence have prosopagnosia. It’s certainly something to ponder.

New torture device by the name of “Go Fish”

My big objective for the summer is to teach Charger board games and card games that his peers at kindergarten will be familiar with. This way, he has a strong base upon which to build a friendship.

Charger goes through a set-process with each new game. First, he’s intrigued. New cards means new things to look at and ask, ‘What does that say?” even though he already knows. Then, he hates it. Exploration is done and it is time to learn new and frustrating rules. At this point, he needs to be coaxed into playing it and reinforced for every attempt. Next, he sort of likes it. He’ll play when the game is an option, but he won’t actively seek it out. Finally, he becomes obsessed. He carries the game around at all times and ask everyone he walks into to play with him.

Charger’s current obsession is with Thomas the Tank Engine Uno and a dollar tree game called “Robot Race”. He’ll probably even attempt to take them with him to the game farm today.

But evil Cale is making Charger learn a new game, with the very sinister title of “Go Fish.” In case you are unaware of the rules:

1. Each player gets seven cards. This is good; it is familiar. Uno also requires seven cards.
2. You look at your cards to see if you have a match. This is not good because your favorite card might not be in your hand. Then you want to look through the deck for it, and evil Cale says “No.”
3. You have to ask the other player if they have a card you need. This is totally bogus. Why waste all the energy on speech when you could just look at their hand to see if they have the card. But evil Cale won’t turn his hand to face you, so you have to ask.
4. If the card isn’t had, the other player says “Go fish.” This is just plain illogical. There is no fishing in the game, and youi aren’t a fish so it isn’t like “Go, fish!” Which idiot thought this line up?
5. When you Go Fish, you pull one card from the deck. This doesn’t make any sense either. You’re looking for a certain card (the one you asked for). So why can’t you just take the deck apart to find it? Instead, Evil Cale puts his hand on the deck and says “Just one!” Who made him boss?
6. When you run out of cards, the game ends. This is good. This is just like Uno.
7. The person with the most matches wins. Hey, wait a second. If I ran out of cards first, why don’t I win? This whole game is bogus!

Hopefully Go Fish grows on Charger. Otherwise it is going to be a long six weeks of “No Fish! No Fish Cale! Noooo FIssssshh!”

How big can we dream?

As most of you know by now, I work with two families in my college town, Charger and his parents, and the triplets and thir parents. One big difference I’ve seen between the two is the way they react to how I speak to their sons about the future.

When me, Charger, and his mom are driving by my college, I talk to him all about the school. I wax poetic about the computer department, and how he’ll learn all these different programming languages and make all these cool games. I tell him about how much he’ll love the dining hall that always has milk and pizza, but he’ll want to avoid the one better known for its juice. I explain the dorms to him, and inform him about how much he will not want to live in the freshman dorm, because it is simply too loud and has too many people. Yes, he’s only almost six. But in twelve years he might be going to the college I attend now.  I think its worthwhile to plant the seed in his head, get the thought going. Charger’s mom loves it, and she encourages me to tell him all about the wonderful things at the school.

At the triplets home, there is a far different atmosphere. One day after 45 minutes on the trampoline with Josh, I finally had to get off. As I picked him up to put him on my hip to carry him back into the house, I said, “Bud, you have a vestibular system of steel. The ladies are going to love you one day,because you can stay out on the dance floor all night. You could be Joshua  (last name), prom king  of  (town name) High.”  Once I had him all set up in front of the DVD player, his mom came over to me. “I’m really uncomfortable with the way you talk to him like that. It’s like you’re mocking him. He’ll probably never have a girl friend.”  I think that’s a hasty conclusion. Yes, he’s six and still wears a diaper and has only three signs. But who are we to put limits on what he can do with his life? So now I still offer the same praises, but in quieter tones  and when the mom isn’t in the room.

What’s your opinion? Do you talk to your children about life opportunities they might never have?

An Update on Four of my favorite Gentlemen

This week I was doubly blessed in that I was able to see both Charger and the triplets. Both sessions went quite well and I even got paid for working with Lawrence, Josh, and Aaron (sweet deal!).

Charger: Tuesday Charger was in a bad mood as the session started. He wanted to watch “Baby Bumblebee” and did not want to play. After about ten minutes he finally calmed down enough to put the train tracks together. He was pretty babbly throughout train time, and I kept saying, “Charger, I love when you use your words. Could you use some words for me?” His first real words in the session, “Welcome to Remi’s kitchen”. This didn’t make a ton of sense to me so I repeated it back to him. He laughed and responded, “Can you put the ingredient into the right bin?” and waited for me to repeat him before going on. This expanded into a half-hour exchange where we played his Leapster game without the actual game. At first glance, this seems sort of pointless, but it actually served a variety of purposes. Charger was able to practice: articulation, good listening skills (he had to make sure I repeated back what he said before he could move on), and breaking the script (every few minutes I would throw in a product not in the game and we would play the round with that ingredient). Plus it kept him amused, and it was far preferable to babbling.

On a side note, his mom shared this story with me: Monday, Charger and his mom had to go to the outreach center where we do playtime so his mom  could grab some stuff she forgot. Charger thought he was coming to see me, and told his mom, “I love Cale!”

Triplets: Last night I went to see the triplets again for the first time in three weeks (no wonder I was going through triplet withdrawal). Aaron (the NT one) was going on a trip with his dad for the weekend, leaving the house to me, Lawrence, Josh, and the mom. Josh had ABA for the first hour, so me and Lawrence hopped on the trampoline. He jumped me straight out of breath and we switched to bubbles, which was a ton of fun. He kept wandering over to where I was holding the bottle and dipping the wand in deeper and deeper. “More bubbles please. More bubbles please”, and then he’d laugh. He has an amazing laugh. It doesn’t sound natural, more as if it were pulled off of a television show. But at the same time, it is so him, as if a real sounding laugh just wouldn’t fit Lawrence. I could listen to his laugh all day. He also loved being spun. He would walk over to me, put his fingers on my neck, and I’d lift him up and spin him in circles until we both fell down dizzy. Then we’d roll around on the floor laughing our heads off until he decided he wanted to spin again.

Finally, it was bathtime. They have a giant hot tub rather than a traditional bath so that they could wash both Lawrence and Josh together. The bath experience is less like a way to get them clean and more a war of epic proportions. The bath ends with water covering all sides of the bathroom and both the boys and their mom. Lawrence likes to pretend to swim and Josh likes to dump the water again and again. They both like to shove each other in a fight to get the best part of the tub.

All in all it was a great time. Tomorrow all of us are heading to the autism carnival the local teen autistics put together with their mentors. Should be a great time.

Just a Babysitter?

Sometimes, when I’m thinking of the activities I’m doing with Charger, I feel a bit guilty. I told his mom originally that we would be doing an ABA-based program, but I haven’t run a discrete trial since the second session. I have no detailed data on Charger. I can’t write down sentences like, “Charger has had a significant increase in knowledge of verbs from session 1 (M=7.2 SD=2.3) to session 10 (M=20.1, SD=2.0), p<.001.”
At this point, most of what we do is play, and talk, and laugh, and play some more. I can say things like, “Charger has the brightest smile I’ve seen in a five-year old. Each week he takes less time to switch from train time to table time. He loves flour and lizards and scripting from his leapster games. His tummy is ticklish, but his feet aren’t, and he prefers chalk to crayons.” In the words of my mother, all I’m really doing is “glorified babysitting.”
     When she first said that, I was offended. I was not just a babysitter. I was…well I’m not sure what I am, but babysitter doesn’t seem to do it justice. But the more I started thinking about the term, the more comfortable I was with it. Even if I was a babysitter, being a babysitter isn’t such a bad thing. I had an amazing one in 4th grade who had a profound impact on my life. Twice a week for a year she came over while my mom was at college classes. And twice a week for a whole year, we watched the movie Heavyweights, ate marshmallow taffy, and then acted out our (my) favorite scenes until my mom came home. A teenager devoting all her attention to one my special interests? I was in heaven! In my christmas and birthday card she included quotes from the film, and I can still open them and giggle at lines like, “It was Seymour Buts.” Seymour Buts? Who’s Seymour Buts?” “Nobody’s seen more butts then you uncle Tony.” Okay, yes, it’s preteen boy humor. But the fact that she was willing to share that with me was amazing.

    So if all I am to Charger is a babysitter, that’s okay by me. Because being a babysitter can be a pretty awesome thing too.