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 ...)