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!

To Infinity and Beyond

I read the most touching story of a boy with autism and his father struggling to survive after being swept out to sea by a rip current while swimming. The father attributes his boy’s autism and love of water to their survival.

You can read the full story at CNN.com.

Our Little Angel Girl

Almost 4 years ago a little angel came to live with us. From day one, our daughter Shannon had a perpetual, contagious smile and a sweet demeanor. I remember looking at her pretty long fingers, full lips and big brown eyes and thinking, “Isn’t she lovely…isn’t she won-der-ful.” She was so feminine – go figure, being that she was a girl. It was such a blessing to have someone so pleasant and unique join our family.

She was born at a very turbulent time in my life. I had just lost my Dad to colon cancer and my Mom was suffering from lung cancer and had only weeks to live. It was as if God blessed me with my second pregnancy to have a new life to look forward to and to ease the pain of loss. We didn’t know at that point that Alex had autism.

I’ll never forget the day Daddy brought Alex to the hospital to introduce him to her. We tried to prepare Alex for months, pretending with a doll and all that. He wasn’t very interested in his "new baby sister seminars" and much preferred lining up his letters.

Alex walked into the room and over to the hospital bed where Shannon and I were lying. I said “Hi buddy, look who’s here…your new little sister! Her name is Shannon…” He started sobbing and backed up into the corner. He looked absolutely devastated. He kept saying “Mommy go home”. The invitation wasn’t extended to Shannon.

Alex’s anxiety escalated and my husband had to take him home. I just laid there and cried. I was elated to have her and sad that my little boy was so confused and didn’t approve of a new baby joining our family.

When we got home, it didn’t get any better. Alex would try to sabotage my nursing sessions with Shannon by getting too close and swinging things around. I remember having to keep him back with my feet while trying to feed her. He would say that he wanted her to go away - to go home. I remember Alex falling asleep that first night on his bedroom floor and me laying down beside him sobbing. I just lost my Dad, my Mom was sick and now my son is distant from me.

Alex and I were close. We did everything together and I enjoyed just waking up every morning to see him. I remember pushing him around Food 4 Less in the cart while I talked and sang to him and just acted silly. He’d reach out to touch passers by and they’d greet him with a smile and kind words about how cute he is. I’d ask him for his opinion on what Gerber jars I should buy, not really expecting an answer. He was my little buddyinski. I wondered if we were ever going to have our special moments together ever again.

It was a hard first year and a half. Alex was a threat to Shannon, not understanding that she was just a baby. I could never leave them alone for long for fear he’d harm her. Within minutes Shannon would start crying because Alex pushed her down, hit her or bit her. His behavior wasn’t malicious, he just saw this wiggly little being as something that scared him and hurt his ears when it cried. As much as I loved Alex, no one harms my little girl, and I don’t think I’ve ever been so angry.

When she started to crawl and walk they began to connect in small ways. We’d tell Alex to touch her gently, to give her a kiss. He’d do it and be nice, then shove her down when we weren’t looking.

Then, when Shannon was close to two, I saw them pretend playing and giggling in a tent together with stuffed animals. I was so thrilled. I took tons of video footage. Things continued to get better from there.

Shannon has learned to speak her mind and defend herself. She has been known to hide his favorite stuffed animals and blame him for things she actually did. Her acting job is so convincing, De Niro would be proud.

This last summer they were inseparable. I could actually clean house and talk on the phone while they remained entertained with just each other. Alex seeks her out to play and asks about her when she’s gone. He has admitted that he loves her.

Shannon is very patient and forgiving of her brother, often coaching him on how to play and be a good friend. The other day at the dinner table, Alex was acting up and Shannon said, “That’s a bad attitude…you should say your sorry”. Other times, she’ll shake her head and shrug her shoulders as if to say, “There he goes again.”

Shannon joins Alex in his therapy sessions. She’ll wait for her turn to be included in the play and will barely get the chance if Alex isn’t cooperating. She’ll look at me with her soft brown eyes and patently whisper, “Mommy, do I get a chance to play now?” She once asked me why Alex gets to play so much more than her on these occasions. I told her that Alex needs to learn how to play so he can make friends. We are helping him learn how.

I’m so amazed at how she just accepts without question. She is his best friend and a fine therapist – helping him along with how to relate to others, play nice and use his words. “Talk to me! Say something!,” she’ll demand. She goes along with what he wants to do mostly without question and is patient even when he’s not sharing or including her like he should. “This one’s mine and that one’s yours, okay Alex?”

She doesn’t know just yet that Alex is different. To her, Alex is her quirky brother whom she loves and can play with.

I’m anxious for the day when the questions about him are raised and when he’ll get teased in front of her for the first time. She has inherited a wee bit of an Irish temper. Maybe I should be more concerned about the sorry little lad who dares to mock her bro!

Those Wacky Fixations

I have to laugh when I think of all the fixations Alex has had over the years. He started off spinning wheels on a little plastic dump truck I bought at the 99¢ Only Store. Then, he forever lined up letters and numbers. He actually slept with the foam bathtub ones.

Allergies coupled with a cold kept Alex wiping his nose for weeks at a time. This eventually turned into a sort of sensory comfort obsession and he never goes anywhere with out a tissue - EVER!

Grandma came for a visit one day with a gangly Lemur that you can wrap around yourself for a hug. If you squeeze his hand just right he would say, with his best Brooklyn accent, “Hi, I’m Londo the Lemur” and squeal like, I guess, a Lemur would.

Alex was glued to Londo for a few years. Mommy had to throw him through the laundry many times to get out the stink from being chewed on constantly right after a jar of Gerber and dragged all over the place. Londo has no nose to speak of now.
Londo got dumped when I put him through the dryer at too high of a temperature. He came out rather crusty. I was devastated. Alex tossed him aside for his new love, a stuffed deer he calls Bambi. It wasn’t the official Disney Bambi, more like the department store deer they try to pawn off on you at Christmas time as a “with purchase” item, but whatever.

This went on and on until he had an entourage of past and present favorites. They experienced his world with him and Alex would greet each one individually when he got home from school with squeals and kisses. He still needs to sleep with all of them close by.

I never thought they’d be replaced for anything in the world – no way, no how. But, then along came the dinosaurs.

There were 20 of them of substantial size, hiding in my closet, waiting for just the right time to have their coming out party. I decided to clean out my closet for once and thought I’d let them see the light of day. They had scary expressions and lots of teeth. I didn’t know whether Alex would warm up to them or be scared half to death.

He came home from school, saw them and it was Kismet.

Now we hold a dinosaur carnival, they play duck duck goose, hide and go seek, jump rope and they dine with full plastic place settings. After dinner, Alex reads them “Go Dog Go” and puts them to bed in a sleeping bag and they say their prayers. My husband even drew up a “Dinosaur Daily Schedule” to keep them busy and to delay Alex’s constant inquiry, “Mommy, what can dinosaurs do next Mommy? What they do next, Daddy?” We are running out of ideas.