Inappropriate Behavior

I’ve said it before and I’ll say it again…autism can be a wicked thing. One of the core deficits is the inability to understand social cues and norms. Throw high anxiety levels and an inability to see another’s point of view into the equation and you’ve got quite the behavioral mess.

Until recently, Alex was in a steady stream of trouble at school for inappropriately touching (little taps or pats), and in moments of high anxiety, hitting and kicking other kids.

He knows on an intellectual level that he should not hit, but his urges and impulses are strong and he has had a very hard time controlling himself, especially when under stress.

When he’s happy to see his classmates, he may pat them because he doesn’t know how else to express his excitement. There’s a positive side to this - it means he’s starting to enjoy and care for others in a deeper way. At other times, if he’s touched or brushed in to, he’ll do a “touch back” (a compulsion to make the interaction even perhaps?). When he’s in rare form, he’ll yell, start singing and refuse to do his work.

It is so very hard to separate the behavior of my child from myself. I find myself tensing daily as I pick him up from school, wondering if today has been yet another “bad” day.

Our team at school had a meeting and we came up with a plan that we hope and pray will remedy this situation. Alex has been temporarily removed from his typical classroom to a special ed class. The special ed teacher has graciously volunteered to train one full time aide to assist Alex with his struggles with behavior and schoolwork. Alex is also receiving help with self-control and we are proud of the progress he has made.

He will return to his regular ed class after winter break for short periods of time gradually increasing to the full day. If need be, he can regroup back in the special ed class.

Since Alex learned he had to leave his regular ed class for a while, he’s been very emotional. We can’t hear enough about how he wants to return and about how much he loves his 1st grade teacher. I think everyone in the entire school knows Alex loves his first grade teacher!

As much as I hate to see Alex sad, I find it wonderful that he is experiencing so much emotion and love for others. Also, his love for his class and teacher has been a good motivator for him to display self-control.

We are grateful for this new plan and pray that it, coupled with his therapy and the help and care he receives at home will turn this situation around.

Catching Up

I think I caught a bad case of bloggers block these past few months and am hoping to get back into the swing of things.

Just to catch up, Alex had his first semester break the end of September, beginning of October and we went on three family day trips - to the Sacramento Zoo, Fairy Tale Town and Apple Hill.

I think Alex’s least favorite was the zoo. He was doing fine at first (loved the giraffes) until we got to the monkey cage. There were two swingin’ kinda guys in there – a great show for we human spectators. Then, along came a lady and her daughter, approaching the cage as if they had some sort special communication powers with these creatures. The mom leaned forward and gave out a sort of chimpanzeeish kind of loud squawk. Wouldn’t you know it, the monkey’s repeated her, like in the exact pitch and everything...at double the volume!

I thought this was kind of cool until I saw the look on Alex’s face. The noise sent him on a panicked journey inside his head. Once he’s in there, it’s hard to get him back out again. Now, all he remembers about the zoo is how he doesn’t like the monkeys.

On a more positive note, both kids loved “The Crooked Mile” in Fairytale town. They ran the curvy path so many times that they were completely exhausted by the end of the day. We got them to bed extra early that night. Also, the hay and corn mazes at the various farms on Apple Hill were a big hit too. We liked Abel’s Apple Acres the best. I think there’s something to the patterns in these things that is very comforting to Alex.

We thought it strange that we didn’t eat one apple the whole day up there, nor did we take home a pie. When you have two kids and one with autism, waiting in a mile long line is not one’s idea of a good time. We did end up with an apple and berry pie for Thanksgiving via some friends. Now I know what the hype is all about. They were delicious!

Autism Meetup Group

There is a fairly new Lodi - Stockton Autism Meetup Group that has started through the networking site meetup.com. Founded on July 21, 2008, there are now 18 parents of children with autism who have become members, me being one of them.

The goal of the group, as stated on the website, is to “have fairly regular play dates for our children, and have parent activities as well where we can get to know one another and learn new things about treatments, strategies or just everyday practical advice.”

Past and up and coming events in the Lodi/Stockton area are posted with all the details.

I’m so glad I was told about this group. It’s a great way to meet other parents who are going through the same kinds of challenges. It’s also a great way to stay connected, share ideas and to be informed of trainings and other events.

Browse the site, become a member, read the message board and share your thoughts. See you there!

I Don't Get It!

You know what one of my biggest problems is with this whole autism thing? I just don’t get it! There are times when I think I do (hey, maybe I can work for the M.I.N.D some day, hmmm) but then I’m slapped back into reality right quick.

For example, we’ve tried everything we know to prepare Alex for school and to keep his behavior in check. We’ve tried showing him the daily schedule, using star charts to earn time with a preferred activity, we've tried tightening up discipline, reading him social stories, asking and implementing the expert’s advice and still, he’ll sit there kicking his desk and yelling.

Then, on another day he’ll get a glowing report and we’ll think, hey, this new idea or that new tactic worked - whoopee! Then, the very next day, he’ll be so disruptive he’ll need to leave the classroom and even be sent home. What’s up with that?

So I know his major deficit is theory of mind and language. Not having the ability to walk in someone else’s shoes coupled with having a hard time coming up with the words to express himself is a double whammy that causes all sorts of social problems. Being someone who cares too much about what other people think, I have the worst time trying to figure him out.

Then there are all the sensory issues he faces on a daily basis. Maybe the paper glares in his face too much, maybe the florescent lights are flickering or making a low buzz noise, maybe there are too many kids facing him, too many problems on a page or too many colors in the room and things on the wall and everything makes him dizzy. Or maybe he just doesn’t want to be there and would rather kick his desk. Who knows?

It’s heartbreaking and stressful because I see what his behavior is doing when he doesn't. I want so much for him to be successful, to have friends, to follow the rules, to stop driving people nuts, to be happy. Well, he actually is happy because he doesn’t get that he’s causing others to be so frustrated. His MO is, if I’m happy why are you not?

My husband prays faithfully for Alex every night at his bedside – that his brain will make the proper connections so he can be healed from this disorder.

The more we try to control his issues the more we realize just how little control we really have. Sometimes, prayer is all we have left.

Then there’s the unexpected blessing. After Alex’s last playgroup, his therapist told us, “Yesterday proved to be a very successful session. Alex's behavior was outstanding. He followed directions, took turns, participated appropriately, and was really nice to all the group members. KUDOS to Alex!!” I savored the blessing as much as I could, knowing he is capable of being an empathetic individual. At the same time, I brace myself - tomorrow is a whole new day.

Lecture Series Online

My husband, Jon, and I celebrated our 10-year wedding anniversary this past Friday. I was surprised with a new iMac when I woke up that morning, all set up and everything. What a guy!

Now I can finally watch all the touching and informative video clips about autism online without all the scrambling, blipping and choppy sounds my 8-year-old computer handed out.

This week, my goal is to watch some of the UC Davis M.I.N.D. Institute Distinguished Lecture Series presentations online. We’ve found it a challenge to make it up to Sacramento, so I was thrilled to find that I can watch them from the comfort of my own home.

If interested in attending in person, The Lecturer Series is scheduled on the second Wednesday of each month from October 2008 through June 2009 in the auditorium of the M.I.N.D. Institute at 2825 50th Street in Sacramento. Sessions are free and open to the public; no reservations are needed. Each speaker in this series will give two lectures: a technical presentation at 4 p.m. and a general-interest presentation at 6 p.m., each followed by a question and answer period.

Some online lecture topics that caught my attention are:

Can Children with Autism "Recover?
The Science and Fiction of Autism
My Experience with Autism (Temple Grandin)
Medication Treatment in Autism: What Really Works
Autism: Have Child Immunizations Created an Epidemic?

Oh my goodness, there are so many! Happy viewing.

A Regular Guy

I was given a book to read by my neighbor the other day. I’m not much of a reader, but I just couldn’t put it down. It’s called “A Regular Guy – Growing Up With Autism”.

It’s an intimate memoir of a Mom’s love, devotion and sheer determination as she brings up her son Matthew who has autism. I was taken through their lives from his birth till he was 20 years old, getting a bird’s eye view of the family relationships and support that helped Matthew survive an often-cruel environment.

Laura paints a heart-warming picture of what it’s like to wear the shoes of a mother striving to do her best for her special-needs son.

The setting is mostly the East Bay which made the story even more relatable to me.

I cried often. This one is truly a treasure!

Dinos in the Dumps

My son’s behavior in school has been pretty distracting over these last two weeks. A short way to describe it is “purposefully uncooperative”. To find something that will motivate him to behave has been one of our biggest challenges.

Well, I had this great idea. Alex has 20 dinosaurs he just loves. One day, I put 10 in a garbage bag, making a big production out of it, and threw them out in the garage. I told him he could earn them back if he’s good in school. Well, he got a glowing report one day, so I gave him lots of kisses and high fives and told him he’d get his dinosaurs back when we got home.

So everyone is all happy in the car awaiting this glorious reunion and we pull up into the garage and I notice the bag is gone. I’m thinking my husband Jon must have put it somewhere. Then, to my horror, I remember that it’s garbage day.

I got the kids inside the house and in a panic yelled up to Jon, “Where are the dinosaurs?” Jon yells back, “Ah…where were they?” I said, “In a garbage bag in the…!” It took but a second for me to realize Jon threw them out with the rest of the trash that we always put just outside the garage door.

I ran to check the garbage cans on the curb and sure enough, the truck had already come and gone.

I dragged myself back in the house to confess to Alex that his dinos are in the dumps. He insisted I call the dumps so they can find them. In my crazed emotional state of insane hopefulness, I phoned Waste Management. ”Ah, yes ma'am, we’ll check with dispatch and see if they spot a tall white kitchen garbage bag that looks like there are dinosaurs inside.” I said, “Maybe their tails punched through?”

Alex reminds me of the blunder on a daily, sometimes hourly basis. He has drawn 10 individual pictures of them and walks around with a photo of his lost friends for comfort. He told me they are visiting far off places like Sonoma, Santa Cruz and Monterey. I’ve been to Target, Wal-Mart and finally Toys-R-Us to replace the things. I got a hold of the lady who gave them to us. She said she found them at the Galt Flea Market. That’s my last shot.

I got a phone call from Waste Management a few days later. “Those dinosaurs are mixed in with pretty much all of Lodi’s trash then to land fill,” the recorded message goes on, “and for safety reasons, really there’s no way we can dig through the trash.” Oh brother, they must think I’m absolutely insane. How embarrassing!