Foxy

The boys were, at one point, afraid of animals. All animals, except possibly small fish in bowls. Their mom got a kitten and that helped - along with some therapy on the topic. Thinks got a little better. But dogs were still an issue. At one point, David wouldn't even walk to the local park, for fear that there might be a dog somewhere in the area; even a dog barking behind a locked gate made him almost hysterical.

Well, my daughter got a dog. A chocolate lab puppy. This seemed like an opportunity to work on this issue. Of course, we waited a bit, until the dog was familiar with her surroundings and had started learning some basic commands. My daughter is an excellent, stern-but-fair, alpha-dog, owner. (Actually she's amazing.)

So the fateful day came when we went to her house with the boys for the first time since the dog. She lives in a condo with an enclosed patio area, so the property is not big. The boys were jumpy. The dog was too. It was very funny - Mikey would run from the dog, and she'd assume he was playing. We kept a very close eye on them all. David tended to run UP away from the dog. Eventually, David was willing to pet her, and Mikey loved her.

The dog is a chocolate lab, named (this is a groaner), "Foxy Brown." Labs grow fast to be fairly big, in case you didn't know ... We determined to make sure the boys saw her at least once a month, so her growth would be familiar to them. A few weeks ago, for the first time, she came to our house to visit. We have a large (by California urban standards) fenced back yard. Suffice it to say that everyone had a blast, and Mikey wore Foxy out!!!

Two weeks ago, Mikey said, "May I have Foxy, please?" Unfortunately, our daughter was working on a fund-raiser for the local no-kill shelter where she volunteers, so the request could not be accommodated. But yesterday, Foxy came over again. It was really funny - after having asked for her, at first, Mikey stayed in the house and did other things. "Mikey, don't you want to play with Foxy?" (no real response).

After about an hour, he decided to come out and play. He is doing very well with her. He now will hand her food without pulling his hand back at the last second and throwing it at her.

So there he was - running around with the dog. He stopped. He got down on his knees, his face next to hers. Slurp, slurp, slurpy kisses, all over his face ... Mikey got up and started running, "Yuck! I've been kissed by a dog! I have dog germs!"

Although he doesn't make sentences like that all the time, he can repeat them when he's heard them. And at least it was situationally appropriate to quote Lucy. We think he wanted Foxy to "kiss" him just so he could say those lines. He repeated this several times during the afternoon.

Another issue for Mikey is verb tense, and time in general. However, last week we went to the local Aquarium. On the way home, he said, "We went to the Aquarium" [emphasis mine] all on his own. It was very exciting to hear him do this - it's something that needs to be reinforced.

David did not play with Foxy. He loves his cats but just isn't into dogs. We did make sure he came down, greeted and petted Foxy.

David is just starting 7th grade this year. He has been home-schooled, through a District program, since 6th grade. He completed both 6th and 7th grade "regular" math using the ALEKS (http://www.aleks.com) program and is now (at the beginning of 7th grade) working through pre-algebra. It's starting to get hard, as it is moving into more complex and abstract concepts - tough for many kids, but especially for literal-minded autistics. We did get through some lessons this week, but he avoided the harder (for him) ones. I said, "OK, David, but next week we do at least one hard one."

"O - Kay" he responded, sounding rather like Eyore.

Memory Tale: San Diego Wild Animal Park

Mikey loves the San Diego Wild Animal Park. We've taken him there most years since he was about 6. He loves the animals. The park is big, and even when there are a "lot" of visitors, it seldom feels anywhere near as crowded as other theme parks.

First Visit - Grandma Learns A New Animal

We started down the KILIMANJARO SAFARI WALK, which is a faux African trail adventure. (There is a well-marked concrete path the whole way, and a guide book.) There are animals and vegetation from Africa. I was trying to make sure Mikey looked at all the animals and knew their names. Ahead, I saw a black-and-white striped, hindmost part of an animal.
“Zebra.” I said.
Mikey muttered something in response, which I thought had “cop” in it.
”Zebra,” I said again, pointing to the animal.
Again, Mikey uttered the same thing, and I struggled to listen.
”Ze-bra,” I tried a third time.
Mikey raised his voice, too, and said, ”OH – COP –EE.”

It was then I saw the sign for the Okapi.

Screaming in the bathroom

Mikey was not potty trained until he was about 9 years old. Up until then he used disposable underwear; and his caretakers would help him clean up as necessary. This is not atypical for an autistic child; I've heard that some don't train until they are nearly adults. So our trips, of necessity, included carrying supplies and extra clothes in case of accidents.

Even more challenging, Mikey hated to be cleaned up after a BM. He would rather run around with the messy pants - it was as if he didn't even feel the mess - than have someone clean him up. (We've never figured out what the sensory issue was.)

So this particular trip, mid-day, the inevitable happened. Marc took Mikey into the public restroom, and he started screaming in protest. I stood outside the men's room, just in case he bolted in the process.

A women, a little older than I, stood nearby, obviously distressed by what she heard, and not quite sure what to do. She chose to speak to me.

"I wonder if that little boy is OK?", she ventured.

"He's my grandson. He is autistic, not potty trained, and doesn't like to be cleaned up. My husband is with him, and he is fine." I responded.

Oh, the things that go through your head at a time like that.

WhatIF:

The police or security come, and think you are harming the child? He won't tell you his name. Even if he did, our last name is not the same.

The police, security or social services don't believe we're his grandparents?

And worst of all, what if they separate us from him? He would be totally frantic.

It is very different to take care of a special needs child than a neuro-typical child. It's not that other people don't understand; it's just that there is no frame of reference for understanding, until and unless someone cares for that special needs child. With autistic kids, each experience is different, so it's not totally possible to use the same strategies or techniques from one child to another. There is no end or conclusion here, just another non-ordinary day.

Just an ordinary Saturday

Yesterday was a good day. That is, issues were minimal.

We went to the zoo. Mikey actually spent a lot of time with the primates in the "main" zoo. He went from exhibit to exhibit, pronouncing the name of each animal, mostly correctly. He did take a while with "margay" - it came out "magray" several times, but we got it right in the end. (David went off to other parts of the zoo with Grandpa.) He went back through all the exhibits about 4 times. The last time through, he climbed up on the fence and reached over to touch the sign with the animal names. This is a behavior we see various places - on TV especially. He'll watch and rewind tapes and rewatch, touching a particular character, and pronoucing its name.

On the way to the zoo, we observed an airplane takeoff, and it started a conversation that David wanted to join. I asked him if I could take him on an airplane someday.
"No, thank you," he said.
"Ah, please?"
"No. The airplane might crash." [David has gotten over many but certainly not all of his fears.]
"Even if we get to go somewhere fun?"
Pause. "No. I'm actually more of a Hobbit," he advised me.

Happy Birthday!

The boys' birthday party is always at our house. In years past, we have invited some folks we know, with neuro-typical (NT) kids, to join us. Over the years, they have kind of dropped off.

We have always encouraged David, who is much more social than Mikey, to invite friends from school. [In fact, when he was in 2nd or 3rd grade, he did invite folks; but when Mom tried to probe into what he told them, he responded, "Well, I told them it was Saturday, at Grandma's house."] Over the last few years, we have sent invitations to a few kids from the public school he had been attending; none ever came.

This year was different. Two of the home school families joined us for the party. Now, an NT party for 12-year-olds would involve dropping off kids at a house or some place like Chucky Cheese, an arcade, a miniature golf place. But when you have kids on the spectrum - let's just say, it's different AND the whole family comes. The count this year was about 11 kids and 15 adults. Several of the kids were on the spectrum.

Observation: Good parents make all the difference in the world. Both my husband and I were apprehensive when we realized how many folks would be around that day. To our very pleasant surprise, the children were polite and kind. Our friend with the most severely impacted child, a charmer named, "Beau," gives hugs and kisses, and has older sisters who are generous and engaging, not only with their brother, but with all the kids. At one point, I saw one of the girls in the bounce house with Beau and Mikey, jumping to a nursery rhyme. I have seen groups of NT kids who could not hold a candle to the positive and polite behavior of all the kids that day. And all the adults helped with all the kids.

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.

"40 millimeters does not equal 6 meters!"

David was interesting with math this week. One set of problems we worked on related to proportions and used the notion of map scale. David uses an online math program called ALEKS. He read the problem, said, "I don't understand" and pushed the "Explain" button. He went right to the mechanics of doing this problem - I could see he didn't really understand. He (and his brother) are very good with patterns, so he can learn "how" to do a problem without learning the underlying concepts. The Evil Math Grandma made him stop looking at the screen so we could talk about What Was Going On in this set of problems.

Starting out with 40 millimeters = 6 meters caused him enormous angst and discombooberation. He raised his voice (not yelling; this is his I'm-going-to-talk-fast-and-loud-because-this-disturbs-me voice). "Forty millimeters is not 6 meters! That's stupid! I don't get it! You're trying to make me to busy work!"

I tried, "David, do you know how wide the United States is?" "No." "About 3,000 miles. If we were to draw it that big, you wouldn't be able to see it. So when we draw it, we ...." Let's just report now this approach did not work.

This did - well, it did enough for today. I have a sneaking suspicion this is a concept we'll go through again.

"I'm going to draw a picture of David. [standard stick figure here; I'm not an artist, and won't pretend to be one!] Does this look like you?"
(Giggles) "Yes!!"
"Let's see, this figure is about 1-1/2". How tall are you?"
"Five feet."
"Ok. This 1-1/2" represents th 60" tall that you are. How tall is Mom?"
"She's 5' 10"."
"Ok. So if I want to draw Mom in the right proportion to you, how tall would she be?"
We then went through the example and drew "Mom" and were able to understand the math problems.

After Memorial Day

When the boys got to our house, Mikey:
a) Ran out the front door - Grandpa chased him and caught him right next door (in front of our next-door-neighbor's house) and brought him in [we have a special lock but hadn't set it]
b) Opened the front window and was going to try to pop the screen - we closed it and said, "No" and he didn't try again.

He was pretty much OK - we did watch him - until later in the day.

c) While on the porch (out of our 2nd floor bedroom) he made moves like he was going to climb over and jump down. Talked to him about it and said he would break his arm, leg or head and that it would hurt. This was followed by several faux attempts that he stopped himself with comments about "break leg" and "hurt." I'm not sure but think we made progress on this one.

d) Tried to get out the front gate of the yard by climbing under. We have deadbolted, wrought-iron 6' gates. There is only about 4" underneath, and he couldn't fit. The gate is too tall (and flat) for him to climb over it. He got his shoes* and tossed them over the gate, and then tried to move a chair up to the gate. We of course did not let him.

*Did I say he was smart? What is the one thing about the Memorial Day incident that's been mentioned multiple times? The lady in the white truck saw a boy WITHOUT HIS SHOES crossing the 8-lane road ...

Also, I wrote a picture story and we had him say many times:
"I will stay in the yard."
"I will be safe."
etc.

Needless to say, he continues to be locked in or monitored at all times.

Memorial Day - Mikey escapes again

I flew several states away to visit my best friend. While there, I got this email from my daughter-in-law:

You need to make sure that harness works really well. Mikey escaped again yesterday. I went in the house to get him crackers, and that quickly he jumped the fence. I went out, he was gone, I looked down the street and didn't see him, grabbed David and got in the car while calling the police. The police found him about 5 minutes later - ON THE XXX FREEWAY. He is safe, but I'm a wreck.

Mikey had gone 1.4 miles, crossed a 6-lane street and an 8-lane street near a major amusement park. He was spotted crossing the 8-lane by someone who called 911 because he was barefoot. It was only because the woman noticed him that he was found - likely right before he would have started walking on (or across???!!!) the freeway.

Needless to say, we spent most of the day looking for resources for elopement behavior (that's what this is called, and it applied to Alzheimer's, autism and any other condition in which people run or wander off). There is very little out there to deal with the behavior although there are studies. A lot of them reference using GPS tracking to recover individuals who have wandered. There are also service dogs. I saw at least one group using electric shock therapy.

Also, as is typical, these kinds of things are cheaper for pets than for people. We are still looking for our best solution. In the meantime, every second of every day, Mikey is either a prisoner in his (or our, or Nana's) house, or is monitored by an adult.

Oh, and a side note: Our regional center has *denied* GPS tracking support because, "it won't stop the elopement behavior" but they have not offered anything to change the behavior! They won't consider placement because he's getting services, which include minimum-wage funding for people to help monitor him, and no help to find such a resource. (and don't get me started ...)

David and the "Important .5"

David is being home-schooled. He is learning math from an on-line program called, "ALEKS." It's a pretty decent program with a lot of interactive / response code built. For example, if he fails to get a problem right, he will have to practice the problems associated with the concept more times; if he gets it quickly, he will only be required to do 2 exercises. There is an "Explain" option that explains the concept and walks through how to solve the problem.

The issue with David is that he learns the steps and does not always get the "concept." This is where Grandma comes in.

On this particular day, the program wanted David to calculate the surface area of a prism. He wanted to jump right in.

"David, how many sides does this figure have?"
"I don't know," was the immediate, frustrated response.
"Well, let's figure it out."
"One, two, three ..." he started counting, "... four, five, six, seven, eight, nine ..."
"David, don't count the edges [at least, I think that's what he *might* have been doing], count the sides. What shape is the back?"
"A square." [It was a rectangle but he knew that.]
"What shape are the sides?"
"Triangle." Etc.
"So, how many sides are there?"
"Five."
"So to get the area, we add up ..."
"The sides."

Ready to start the problem. He uses the calculator way too much for my liking.

Open paren. '9' '*' '5'
"David, HOW MUCH is 9*5?"
A glance. A momentary lull. "45!" he announced. Backspace, backspace, backspace ... "45" gets typed.

Perhaps I should have let that one go. As he started entering information about the five sides, he had to stop and figure out which sides he's already done. Had he left the "9 * 5" it might have been more obvious.

As he got to the triangular sides, he announced, "... and the .5, that's important."
"What?"
"The .5. You have to use it."
"Why?
"I don't know."
"OK, David, do you remember we talked about this before ... [drawing paper] Suppose we had a triangle with 3", 4" and 5" sides. If we complete a square using the two shorter sides, what is the area of the square?"

(3" * 4") = 12"

"And if we cut it in half with a diagonal line, that forms the traingle. See? That's where the .5 comes from."

Had to repeat it a couple of times, and may have to again. But he gets it. Score one for David (and for Grandma) today.

Harnessing Mikey

This is a follow up to "Mikey Escapes."

A while ago, we bought a harness for a large child. It looks pretty much like the fancier rigs that get used with dogs - the ones that go around the body, not the neck. We hadn't used it. However, my daughter (boys' aunt) and I are planning to take Mikey to a local amusement park in a couple of weeks, and I decided it was time to make sure he *would* wear it.

It took a while to get it on him, and - let's just say I plan to RTFM before putting it back on him.

"Mikey, do you want to go for a walk?"
"Yes."
"OK, you have to wear this harness."

He was very cooperative.

"Do you wear a harness at school?"
"Yes." (I'm not really sure he does - he goes to a special school for autistic kids. They do go on field trips.)

When it was on - still didn't quite feel right, but it was on - we went out the front door. He was actually very cooperative; and, unlike other times on walks when he's get too far ahead, now he simply slowed down when the lead "tugged" on him.

"Right," he said, indicating he wanted to go down the sidewalk.
"Right."
"Left."
"Mikey, what does the light show?"

We were at a street corner. Mikey doesn't "get" lights.

"Push the button, Mikey."
"Left!"
"Yes, Mikey, but first we go to the right to push the button so we can walk."

We did. He is very bright - the next light we came to, when asked to push the button, he did. I am hopefull this will eventually sink in.

"What do you see? Stop? Walk?"

Getting similar attention at a non-stoplight street corner, or by a parking lot driveway, is nearly impossible. But -- as we approached one parking lot driveway, and a car was coming, he did stop and wait. This is a major advance - he doesn't stop if a car is in the distance, but he was apparently aware of them close by.

"Right."
"Straight."
"Mikey, do you want to go to the park?"
"Yes." Quick turn of the head. "Thackerberry Farms!"

Thackerberry Farms is a strawberry stand. It's MILES away - like 3-5 miles.

"OK, Mikey, let's go home. Grandpa will take you to Thackerberry Farms to get strawberries."
"Straight!"
"No, Mikey, let's go back to Grandma's ..."
"Straight! STRAIGHT!"

Tantrum.
Pulling.
Attempt to run - harness is a good thing, and holds up against the struggle.
Drop to the ground.
Screaming.
Tries to get harness off. (Will he resists wearing it again?)
Pounds his head on the ground.
More screaming.
Rolls.
(Quiet voice here, continuously) "Mikey, we are going back to Grandma's house." (Repeat)

OKay, kids, today's lesson is ... the same one we always learn. Or refine: Set expectations with Mikey.

Later in the day, he wanted to go for a walk again. He agreed to the harness.

Grandpa says, "OK, Mikey, we are going to take a walk AROUND THE BLOCK."

Everything goes well and cooperatively. I have high hopes for the amusement park; and yes, we'll try this harness thing again next week in preparation.

Water Balloon Baseball

David is "high-functioning." He and his brother, Mikey, both had the same kind of behavioral therapy; we assume Mikey is more neurologically impacted than David. David is completely verbal - in fact, he "topped out" his latest assessment tests on verbal ability; that is, they can't find his "top." He has been home-schooled since this past Fall; he has completed 6th grade math and is 3/4 of the way through 7th grade math.

David's autistic issues are behavioral - his own, and understanding other peoples'. He has an almost-photographic memory, and can tell you all about a story - but doesn't understand things like irony or motivation. David's world is pure: he has no capacity to understand why someone would be anything but truthful or do anything manipulative.

David lives a lot in his own world. He is not "into" sports at all. However, this weekend, we had a little bit of sports activity.

Near record breaking highs brought us close to 100 degrees F. this weekend. We got out the "pool" - an 18" X 8' pool. Both boys played in it for quite a while. After it was full, I took on the task of creating water balloons. The boys both like water balloons - Mikey loves to make them splat on the ground. He asked for one "untied" - I made him say a whole sentence to get one like that - and he either drinks or squirts the water, but never at other people.

David, OTOH, has learned that they can be tossed at PEOPLE.

Anyhow, David brought a paddle in the pool - it is plastic and came with a ball; it is called a "Sonic Paddle" because it makes a lot of noise when the ball is hit with it. He was sortof "air batting" with it, so I asked him to try to hit a water balloon with it when I tossed it. He did!

He loved this game. He even decided, on his own, that he would run "bases" in the yard - home being back in the pool.

He had a pretty good hit ratio, and the balloons against the Sonic paddle made a weird noise and a splash. When he hit one, he would run the bases, and I'd grab another balloon and try to hit him with it to tag him out.

The funny part came when he missed one. When he missed, the balloon fell into the pool and did not break. He decided the appropriate thing to do was to pick it up and toss it at me! He demanded I "freeze" (i.e., hold still) so he could hit me - and he did!

Mikey escapes

At home, there is our daughter-in-law and our two identical twin autistic grandsons, David and Michael (sometimes, "Mikey"; David is usually, "David). There are deadbolts on all the doors and locks on all the windows. It's probably not the best from a fire-safety perspective, but it beats the heck out of the safety perspective of not letting Mikey get out on his own.
The boys are 11. David is (now) high-functioning; Mikey is not. Mikey is intelligent. At his school, they had to create special curriculum for his highly autistic behavior but just-about-grade-level work. Mikey does have language - he talks like a 3 year old: always present tense; one to three word utterances with an occasional short sentence thrown in. He can speak longer sentences if he is repeating something that interests him - like the dialog from a show or the words from a favorite book. He has reasonable receptive language, as long as you discount that he has no concept of time or tense.
Saturday is "our" day with the boys. Mom drops them off around 11 am - Noon, and we take them home in their PJs. This Saturday was no exception.
Our house doesn't have as many locks as their house, and there are two of us. We have cast-contcrete (decorative - looks like stone) 6' fences around the yard and locking (deadbolt) cast-iron gates. We recently added a lock to the front door since the lock only locks from outside; inside it doesn't need the key.
Saturday evening, after dinner, David on the computer upstairs with Grandpa, Mikey running around the back yard, and grandma sitting overlooking the back yard.
All of a sudden ... too much quiet. Look around the yard - no Mikey.
Call upstairs, "Is Mikey up there with you?" No Mikey. We double-checked. We looked over the fences into the neighbor's yards - no Mikey. One neighbor had the side door to her garage open - no Mikey.
Split up - get in cars. Go around neighborhood; look at parks we visit.
Mikey is very autistic - he has no sense of things outside who he is and what he wants. He doesn't, "Stop, Look and Listen" - for cars or anything else. He is 5' tall, slender and fast as a whip. We call him "the stealth kid."
Where is he? OMG, there is a house under construction and all I can see is the frame - is he there? Driving slowly past the park - probably caused the other folks there to wonder what the heck I was doing - nope, not there either. Could someone have? no, can't think that - "God, please..."
Grandpa (Marc) was back at the house and called me to see if I'd had any luck - no. "Call the police. I'm coming back to the house."
Marc called me before I got back - and said, “They have him – well, they know where he is.”
The local police have joint communications with the next community and the road behind my house is the border between the two. Across the street is the edge of a joint forces training base. They rent out a lot of the space to companies that grow strawberries. Our grandson was with the soldiers who found him on the base ...
He crossed a ususally busy, 4 lane road with a divider to get to the "other" side. He went about 4/10 mile up the street and then went back a road. At some point - obviously we don't know exactly where - he must have squeezed through a gate to get in - because the cyclone fences around the base have barbed wire. He was barefoot.
The soldiers found him on some farm equipment where the road ends. They - fortunately - recognized the autism - remember, Mikey doesn't really talk unless you have some clue how to talk to him - and took him to the guard shack at the entrance to the base. They must have contacted the local police.
More on David in another post; however, he did provide one small spot of comic relief: On the way to pick up Mikey, David said, “I wonder what they’re doing with Mikey??”
Marc and I both cracked up – Mikey is on drugs so strong for the hyperactivity that, when David – who is fairly active himself – accidentally took ONE of his pills, he was groggy for two days. It takes two of us to take him anywhere "special" just to keep up with him. Yea, I wonder what THEY did with Mikey.
When we picked him up, and got him back into the car, he said, “Farm!” Earlier in the day he had come to me and said, "Plant beans." We seldom know where Mikey gets his ideas from, although we do sometimes figure it out after-the-fact. We did plant beans last year, but he lost interest in them right away. He had asked me right before dinner, and we were busy fixing food - so I had tried to tell him, "Next week." Not that he understands time, but he's been a little better about, "not immediately but later."
From our back yard, we can see the "farm" at the base. We *think* - because there is no way of knowing - that he used a Step 2 slide we have in the back yard to get over the top of the fence, and then just dropped - bare foot, mind you - to the sidewalk to start this journey.
After questioning, we took Mikey back into the car. As we got on our way, he said, "Farm!"
We said, “Home.”
He said, “FARM!!”
We finally got him to say, “Farm is closed.” That's his way of acknowledging, sort of, that he's not getting something Right Now.
ANYHOW – got them back to our house and completed our ‘regular’ bath routine, then took them home and told Mom. On the way back, I said, “I don’t care what the house looks like; I’m going to bed.” But this was not to be. I thought it was the toilet running. It was not. Suffice it to say that the plumber looked at things today and we are turning the water off except to shower. The plumber will be back Wednesday.

FAQ / In the beginning

Labor Day, 1998

"What did the doctor say? I was waiting for your call and didn't hear from you."

"Well, Mom, we were going to wait until you were back from vacation ..."

"Tell me now."

"The doctor said the boys are autistic."

Autistic. Rainman. Can't be ... Why them? Why us? What should we do?

Hours of searching on the Internet and a flight to catch in the AM to start ... a VACATION?

ABA .. behavioral diagnosis .. diet ... vaccines .. sleepless night.

Alarm. Get up. Get to airport. Catch plane. Labor Day weekend, 1998. Delayed landing. Moving in a fog between the disbelieve and exhaustion ... dinner ... bed .. woke up at 10:30 am EAST coast time (1:30 pm Pacific)

The beginning.