Memory Tale: Peanut Butter Kisses

Christmas is my favorite holiday. I decorate for days, and bake for days. When the boys were quite young - perhaps 2-1/2 - I still put cookies out on the table. (Now the cookies get "put up" because it just doesn't work to tell Mikey to stop.) The usual holiday madness was going on.

As I passed by the cookie table, there they were - 8 peanut butter "kiss" cookies - minus the kisses! I guess someone liked the chocolate best of all.

Tidbits

Negative consequence

For a moment, I couldn't tell if the shriek was a person or a cat. We all stopped talking, and my daughter-in-law went toward the bedroom where the boys were supposed to be sleeping. "What's wrong?" she asked.
An agitated David - the originator of the scream - responded, "Mikey turned the night light off!"

[Mikey likes dark; David doesn't. But they want to sleep in the same room.]

"If you turn off the light, you won't be able to read your books," Mom said. End of this story. Except for this tag: I am most pleased the boys consider being denied books is a negative.

Algebra, Aleks and Pie Pieces

David's automated math program, Aleks, presents sets of concepts as wedges in a pie. Each pie section has a number of lessons, not always the same number. Completing a lesson is usually referred to as "completing a pie piece." After a couple of weeks, there is an assessment test. It is generated by time. One of the options for an answer is always, "I haven't learned this yet." If you click that button, and you have completed the work, a pop-up says, "Are you sure?"

David just lost 50 pie pieces during his last assessment test. He does not like having to do problems. I talked to him about this, and said, "David, I know what happened. You didn't want to take the time to do the assessment test, and you clicked the "I haven't learned this yet" button a lot. Right?"
"Right."
"Well, David, all that means is you have to do the work again."
"But I didn't remember."
"No, you didn't take the time to think." I know this is true because when we start doing the work again, he correctly solved problems that he had solved before. One of them he did not remember, and one of them is some of the beginning algebra. More on that in a moment.
"If you keep doing that, you'll be in 7th grade math forever. AND have to keep doing the same problems over and over again. Here's what I'm going to do. I'm going to keep a list of the concepts we learn this week, and next week, before we start doing anything online, we'll review these concepts on paper." He agreed to this much more readily than I thought he would.

Last week, we started working on slope-intercept. Except that all that he's asked to do for now is to graph linear equations (y=mx+b). David is very good at pattern matching and I could tell that he was not really "getting" the notion of solving for sets of answers.

Grandpa got us some graph paper. This week, before going online, I had already told him we were going to do some review.

So, first I had him solve y=x. Yea, I know it's silly; but last week, when this concept was first introduced, he had trouble understanding what to do with something like "y=2x+3" and was trying to find (2,3) as a point on this line.

So he found 3 points and drew the line. I followed this with "y=x+2" and had him put that line on the same graph. Also, "y=x-2." Negative numbers are not concrete - hard for any kid but especially for someone with autism.

"So David, what can you tell me about those lines?"

He looked at them for a second and said, "They are parallel."

I started to talk about it a little and he interrupted, "I GET it." We did do another set of similar equations, just to make sure. And we'll see how it looks next week.

GAN picnic

There is a local group called, "Grandparent Autism Network," (http://www.ganinfo.org/) that I joined sometime this past year. One of the ladies organizes an annual picnic at a part in South county that has a pool. I tried to volunteer to help, but they meet in the daytime, and I have a full-time job. So I brought cases of water and purchased one of the craft items that was used.

Neither of the boys knows how to swim. Both of them are sort of learning. Mikey has a life jacket that he wears, and he's willing to put his head under water - although we have to tell him not to breathe under water. So we were a little unsure about how long we could last at this. I don't swim either, although Marc does.

For the picnic, I made some chicken, deviled and hard boiled eggs, corn bread, brownies and brought some grapes.

The lady who organizes this gets lots of help from her church, and there were several adults dressed as clowns who were doing things like directions, handing out snacks, running the face-painting and [temporary] tatoo tent and the craft tents, signing folks in and tracking attendance at the pool. They did an extraordinary job.

David is "afraid" of many things. We are all working to try and expose him to some of these things in safe environments and trying to talk him through. And one of them is clowns. He didn't want to walk by them, park near them, etc.

And Grandpa said, "I don't think they are real clowns, just some people in face paint and funny hats." Bingo - that worked. David decided that scary clowns only came out on Halloween (we didn't argue the point).

Mikey wanted the pool. Period. He was willing to sit and eat, once we told him he had to do that before going to the pool. He was mostly pretty good; he got a little huffy when I told him to finish his chicken, but he didn't fuss too much. And he was antzy but didn't run off when we took the time to clean up our mess.

I did get to meet - briefly - the lady who organized the picnic, but not to really talk to her. Guess that will wait for another day.

Oh, and P.S. - the pool was fine. We had a good time. It was large, there were plenty of life guards, and the pool was roped. Mikey made comments about jumping off the board into the 12' water, but we told him he had to stay on this side of the rope; and that if he went past the rope, we would immediately go home. He understood and we were all fine.

I like to sleep at Grandma's house

From time to time, we have the boys overnight. (It generally means grandpa and I go to bed a little early, and the boys a little late.) And of course, Grandma - who is always up first - fixes breakfast.

So one bright Sunday morning, Grandpa asked David, "Do you like to sleep at Grandma's?"
"Yes!" came the reply.
"Why?" Grandpa asked.
"Because it smells good!"
"What," asked Grandpa, "does it smell like?"
"WAFFLES!"

OK, I admit it - I make homemade waffles when the boys stay over ;-).

More Harness

We went to the Aquarium yesterday and Mikey agreed to the harness. We are members and go often - it's less expensive than paying admission for the 1 - 1.5 hours we are likely to be there. The boys are very familiar and comfortable with the space. We do try to go when it's likely to be "less" crowded.

There are two floors of indoor exhibits and several outdoor exhibits, and a play area. Grandpa went off with David and Grandma took Mikey in the harness.

The tiniest improvements in Mikey do my heart such good.

He spent time, voluntarily, at many of the exhibits.

He didn't fuss when I needed to use the rest room; and, with only a few reminders, did not open the door until I was done.

He was cooperative when asked to stop for a few moments, or a few extra moments, at an exhibit.

The harness has one additional side-effect. When Mikey has the harness on, people do not question his "odd" behavior. Autism is not a disability that is obvious physically, so when the person's behavior is "off" a little, most people think the caretaker is incompetent or lazy. (In the autism community, we refer to kids without neural disabilities as "Neuro-Typical," or "NT", and not as "normal.") Even when they have major breakdowns, some people don't understand that autism (or something) is the source of the behavior.

When we go to the playground area, he asked, "Harness off, please." I took off the lead but left the harness on, and reminded him to play in the play area. He did.

He keeps looking at us when we are watching him, which we do all the time now. It really bugs him, I can tell; but not watching him could result in disaster. [sigh]

The setup outside is that the play area is adjacent to two of the large, shallow touch pools. These abut the top side of the "large" tank that houses giant (6') rays and sharks. The top side has a railing so a person can look down into the tank; there is another view with a glassed wall where a person can look inside the tank. It's pretty spectacular.

Mikey started to walk around one of the touch pools: up one side, around the edge next to the large tank, and back down to the playground. All highly visible and I followed him. About the 4th time, he stopped to look into the touch pool. Next thing I knew, he had slipped off his sandal and was putting toes into the touchpool.

"No, Mikey! I said, pulling him back. "Fish only! Lie on your belly and touch them." He did.

The next time around, he stopped at the large tank. Suddenly, he threw his leg up onto the rail, as in, he would have jumped in, had I not stopped him. "No, Mikey!" I grabbed him and hugged him tightly -- "Do you want to go home?"

"Yes! Store!" he responded, indicating he was ready for Softie Grandma to buy him something at the Aquarium store. I called Granpa and told him we were ready to go, and to please meet us at the central area.

We stopped at Rubio's (fish tacos) on the way home, and - miracle of miracles - got parking right in front! The boys both did very well, particularly David, and we had a nice meal together, in a public place. Now that's progress.

Forehead?

Small muscle development is delayed with autism. Lifeskills are too. We still help the boys with baths. David is pretty much ok except we help him with his hair. Mikey gets more help than that.

So, last Saturday, in the shower, Mikey started talking about his head and hurting. I probed, "Mikey, does your head hurt?" (no response) "Mikey, where does your head hurt?" No response.

I tried a couple of variations. No response.

Finally, Mikey:

looked me in the eyes

put his soapy arm around my neck

touched his forehead to my forehead

pulled back

with his index finger, touched my right temple and said, "One."

He then proceeded, dividing into roughly four pieces, touch spots on my head. (Jab) "Two." (jab) "Three" (jab) "FOUR-head!" said he. :-) One never knows with Mikey. Well, sometimes one figures it out after the fact.

Caretaker burnout

This is a hard blog to write. The boys' mother is burnt-out. Since Friday, a week ago, here are some of the things we have done:

Friday, a week ago, my daughter and I took Mikey to a local amusement park. We picked him up at school and took him for about 4 hours. (see prior blog for details)

Saturday, a week ago, grandpa and I had the boys for our "normal" day (11 am to bedtime; we take them home clean and in PJs)

One day during the week, Grandpa performed about an hour of remote computer tech support

Saturday (yesterday) we had the boys as usual

Both of us work full-time in fairly demanding IT jobs (that is, more than 40 hours a week is often expected). Our daughter-in-law is in the middle of doing IEPs (Individual Education Plans, for those who may not know, are plans that consist of individual goals and - after the first one - evaluations of outcomes from the prior IEP period. Their theoretical purpose is to design an appropriate education for a special needs child, and include educational approaches and services in support of the appropriate education.) She is also in the middle of working with the Regional Center to try to get help for Mikey's elopement behavior. She is "frustrated" (=angry) with us that we have not done more research on GPS and other tracking devices in advance of her meeting with the Regional Center next Tuesday.

We are at a loss as to what to do. Grandpa observed that there are two things we can throw at the problem: Time and Money. Time means I would likely speed up retirement plans (my current plan had been to retire from my current job at the end of this year, and try to consult for the next 4-5 years on a less-than-full-time basis), which is also the same as money of course. Some money is less problematic; it means deferring some already-deferred maintenance on our home.

I'm not trying to go anywhere with this; just putting it out to the Universe in the hopes that something creative and wonderful will drop like guano onto my thick head. I wouldn't even care if it messed up my hair.

On a happier note, we had a pretty good day with the boys yesterday. Mikey didn't try to escape at all. We had a brief problem at a local zoo that has a farm/petting zoo component. We went late in the day - we have annual passes - and several of the cages were open for cleaning. Mikey of course tried to go in them. We stopped him, but one of the caretakers let him in to pet a large pig. A little later, he spotted an open gate to a maintenance barn, and ran right in; Grandpa caught up with him and brought him out. HOWEVER, apparently (Mikey's actions are often apparent after-the-fact), he had decided it was appropriate to pet the horse and cow (apparently based on access to the pig), so he started to climb over the double-fence that separates People and Animals. Another man who was there (closer) and saw/heard what was going on grabbed him and helped get him back out. Mikey never quite settled down; we left after giving them about 20 minutes in the play area.

David and I worked on math later that day (see earlier blogs for details of why I am tutoring him and the ALEKS program he uses). Having just barely graduated sixth grade, he is most of the way through seventh-grade "math concepts" and will likely move on to pre-Algebra in the Fall.

He worked through several things pretty quickly but we spent some real quality time on raising a negative number to an exponent. It took a little while - and this is true for NT kids as well - to explain the difference between 4 * 3 and 4^3. What is more obvious as we move along is that we really need to get some multiplication flash cards and learn our Times Tables, through 10 at least. He relies totally on a calculator. Although he is perfectly capable of multiplying 4 * 4 * 4, his initial - dramatic - reacton is that he "needs a calculator" and this is "impossible!" [About 2 minutes later, 1.5 minutes being pure tantrum, he figures it out on paper.]

What is more, ah, interesting and challenging is the concept of "negative" numbers. I did leave him with the rule-of-thumb about multiplying negatives, but it's going to take some creative thinking to explain it beyond the rule.

I left him with the notion of flash cards - he said, "OK." and the promise to explain the "secret" of multiplication by 11 - but that he'd have to anticipate and enjoy the anticipation of knowing he'd find out about it next week.

Mikey's Surprise - A Visit to an Amusement Park

Mikey has often expressed a desire to ride roller coasters. (David wants nothing to do with them. Grandpa has some minor middle-ear balance issues, and cannot ride things with two axes of motion without suffering ill-effects.) So yesterday, Aunt Evie and I took Mikey to a local amusement park.

Preparation

- Determine day and schedule time off
- Reread directions for harness
- Advise school that we would pick up Mikey after lunch
- Prepare name badge (autism ribbons above "Mikey" on one side; cell phone numbers on the other)
- Prepare story-with-pictures for Mikey, outlining where we were going and The Rules
- Check Web site of park for accommodations - if any - for special needs kids
- Take shorts and BRIGHT t-shirt

The Big Day

Drive to school; sign in. Mikey knew only that he was getting early dismissal - it was very important that we not promise something, on the off-chance it would not be delivered.

Signed in at desk. School got Mikey ready to leave. Mikey sees us for the first time.

"Hi, Grandma! Hi, Aunt Evie!"

"Mikey, say, 'Good-bye.'"

"G-Bye!"

"Good-bye WHO? What's my name?" (try to get eye contact)

More tries; finally, "Good-Bye, Danielle."

"He's dressed pretty warmly." "That's Ok; we brought shorts and a t-shirt." Shared name badge, harness. School asks if we want to start work there Thursday? :-)

Change Mikey's clothes - he gets in the car and puts his seat belt on - he is really good about that. "Mikey, do you know where you're going?"

Hand him page 1 of the "story" about this trip. He reads thru Page 1 (which ends with "Mikey gets his surprise."); he grabs page two off the front seat and exclaims, "[name of amusement park]!"

Off we go! "Mikey, [repeating from the story], first we stop at the rest room; then we go to the gate to get tickets; then we go in the park; then Mikey can ride!"

First challenge: althought there is a stated policy for "special assistance passes," the policy is that if there are more than 2 people, it constitutes a "party" and at least one person must wait in the regular line. The "special assistance" guests can go in the exit and join the person at the front of the line.

We go to the log ride; Evie waits in the line and I take Mikey on a mine train ride. Mikey clings to me as we go through one area - but I am not sure if he was afraid of the dark - he likes the dark - or if he was just trying to block noise by putting his ear on my shoulder. He was very good; did not try to stand up or anything.

Back to log ride; took him up exit. Wait. Fuss. Pull. Tug. "Mikey, wait for Aunt Evie - there she is!"

Climb in; very cooperative.
Up-up-Whoosh (small).
Around, around; faster, faster -- dark cave! Whoosh - II (medium).
Around "mountain" scenes. "Wolf!" "Bear" "Fox!" (just the animals; not the people-figures)
Climb. CLIMB. CLIMB! WHOOSH! (the big one) and SPLASH at the bottom.

"Did you like it, Mikey?"

"AGAIN!!!" We go to the "rapids" ride - Mikey keeps asking for the log ride. 90 minutes. Evie in line; Mike and Grandma wander.

Younger childrens area with cartoon theme; Mikey wanders; asks for grocery store (? never figured it out). Take disappointing "balloon" ride.

Text Evie - almost. Wander back to rapids.

OOPs line longer than was obvious. Try to wait. Mikey fusses. People stare. 20 mintes. Ride breaks down. AARRGGHH!

Back to Log Ride; Evie tried to leave rapids ride.

"Log Ride!"

"Long line, Mikey - can you wait?"

He tries to go in the "short cut" (exit) but I make him wait in line. 45 minutes. Lots of fussing; no screaming or other issues. Finally! We make it.

On the last high climb, he holds his hands up above his head; on the way DOWN he grabs the rails.

Evie had gone to wait in a different line for a free-fall water ride "plunge." She was most of the way through. Neither of us had been on this ride before.

Relatively short wait.

Get in.

Rigid shoulder harness comes down, over shoulders, to mid-riff; strap from the floor, between legs, locks in. We are stripped of anything that is not fastened down, including glasses. Evie and I are anxious (anxious? "What were we thinking!!!")

Ride starts. Up, up, UP (inside my head "LEMMEE OUT!")

Closed my eyes. Listned to rider Screams. PLUNGE. My (personal) bottom is not touching the ride seat!! Harness holds. S P L A S H . Drenched.

... and the voice beside me says, "AGAIN!!" We go off the ride - Evie and I still catching our breath. Mikey asks for horses. We go towards a Western museum in the park and I realize I can't find my phone. It had been in my pocket. Did it fall out in the "plunge"? Did I leave it back there?

Evie goes to look; I keep Mikey at the museum.

Mikey wants to leave, and we can't. Work with him. Lady in the museum gives him a souvenier coin, after asking if it's OK.

Shift change; older gentleman who has no idea what to do or not to do with an autistic kid ignores us totally. Mikey fusses. Tries to leave. Starts to scream.

More screaming. Tries to get away. Harness holds.

Tries to get on floor to hit his head on the floor - it's concrete. I hold the harness so his head doesn't touch.

Gets up. Go just-outside the museum. He tries to go. Screams for 2 minutes. Body slams me; 2 times hits his head on my chin - I can see the bruise today.

Finally, Evie is back - no phone.

Mikey has decided it is time for "Truck. Mama's house." We agree.

Mikey is calm and cooperative. We stop at a store; Mikey picks up 2 stuffed horses. "Pick ONE, Mikey." Aunt Evie buys it for him. We go out of the park and spot an "ice cream dots" vendor and get Mikey a cup.

Mikey is calm and happy. Kisses and hugs. Off to truck.

Mikey gets in; sits down; puts on seat belt.

On the way home we call and cancel the phone service.

Home. "What was your favorite ride, Mikey?"

"Log Ride."

We spent about 4 hours total in the park. More than we thought we would and all things considered, this was a highly successful adventure.

Evie and I go to dinner and both order a drink.

Later, Evie calls. "Mom, I have your phone! It was in my bag!"

I guess we put it in SOME TIME and just both forgot.