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!

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.

Some DVD's Worth Ordering

I’ve come across a few DVD’s this past year that have either shown me fun ways to teach Alex life skills or have allowed me to be a fly on the wall and observe other's challenges and victories with their children on the spectrum.

The first DVD I think is worth purchasing is a series titled Bounce!. The description reads, “Bounce is an award-winning DVD series for early learners to play, interact, have fun and practice the building blocks of life. Bounce explores the developmental steps that all children take up the ladder of life."

The DVD series includes five volumes: Emotions, Movements, Let’s Talk, Routines and Let’s Go. Each volume comes with a CD of the program songs that are pretty good! You'll be singing along to them in no time.

Alex was watching the “Emotions” DVD and witnessed an animated character named Balloo crying a shower of tears to demonstrate sadness. After a moment, Alex formed the most pained expression on his face. He was truly moved by Balloo’s emotions and he started to cry too. It took me over an hour to calm him down. It was as if this new feeling of empathy frightened him and the emotion was too hard to control. As much as I don’t like seeing Alex sad, I saw his ability to be empathetic to others as a huge victory.

You can order the DVD at www.SpectrumConnections.com.

I was in the hotel room on one of our experimental family vacations, when I saw the tail end of what seemed like a documentary about autism on HBO. I got home and googled on some names I jotted down while watching the credits.

Turns out the special was a docudrama titled Autism: The Musical. The website reads “Following five Los Angeles children over the course of six months, director Tricia Regan captures the struggles and triumphs of their family lives and observes how this musical production gives these performers a comfort zone in which they can explore their creative sides.” The DVD contains special features, video, interviews and information.

I’ve had my fair share of excitement being a part of plays and musicals when I was younger and I wondered if my son would ever be able to be a part of such a fun activity. The docudrama gave me hope that it’s possible - the challenges are there, but they can be overcome.

You can order the DVD from Docurama.

A few days ago I ordered a DVD titled Recovered: Journeys through the Autism Spectrum and Back. The website states, "The film presents documentation of therapy sessions along with interviews of the children who are now teenagers, their parents, therapists and the founder/executive director of CARD. Their combined stories illuminate both their struggles and triumphs while providing hope to families of newly diagnosed children that recovery is indeed possible. Each child received services from the Center for Autism and Related Disorders Inc.(CARD), including assessments, supervision, parent/teacher training and one-on-one behavioral therapy.

This 2 disc set includes over 60 minutes of Special Features designed to educate families who are navigating the world of autism and autism treatment."

Seemed too good to pass up. I can't wait for it to arrive in the mail!

Dr. Nancy Hoff

What pained me most about Alex’s autism was the lack of connection between us. I remember complaining to my husband when Alex was just a baby that he didn’t seem to need me the way other babies need their mothers. The eye contact, the caring to please and the enjoyment of sharing ideas and experiences together were lacking. How do you teach these innate desires - things that are naturally a part of typically developing children?

I had received a FEAT Handbook from the UC Davis M.I.N.D. Institute and searched under “Social Skills Groups/Therapy”. Dr. Nancy Hoff was listed with the description “Dr. Hoff is a board certified pediatrician who provides services for children with behavioral, developmental and learning differences.” It went on to say that she works with children ages 2 – 13 on the autistic spectrum to teach experience and emotion sharing socialization skills.

I’d heard of Dr. Hoff years earlier from some parents I met when we first moved to town. The general consensus was “She’s a great pediatrician – my child loved her!” Unfortunately, she wasn’t practicing pediatrics anymore so I couldn’t take Alex to see her. Little did I know he’d be her client a few years later.

Dr. Hoff provides play and behavior therapy based on the principles of Relationship Development Intervention (RDI). After a long phone conversation with her, I was convinced this was the program for us. My husband and I both agreed that having Alex develop the motivation and tools needed to have meaningful relationships was our number one goal.

The RDI program's core philosophy is that individuals with autism can participate in authentic emotional relationships if they are exposed to them in a gradual, systematic way. The goal of treatment is to systematically build up the motivation and tools for successfully interacting in social relationships, to correct deficits in this area that are thought to be common to all people with autism.

RDI identifies the core deficits of autism as rigid thinking, aversion to change, the inability to understand other’s perspectives, failure to empathize, and “black and white” thinking. Through therapy, parents are provided the tools to teach their child flexible thinking skills and motivation.

After a few meetings to assess Alex through parent interview as well as a few video taped sessions, we were in regular therapy with Dr. Hoff – once a week for an hour at her office in town.

I’ll never forget, after just a few sessions, Alex giving me intentional eye contact. I wasn’t seeing his usual blank gaze but a purposeful glance. He was interested in ME. I know this sounds strange, but it almost scared me. I had gotten so used to him not making eye contact with me that this spontaneous connection was a shock.

I learned so much about what motivates Alex’s behavior and how he is processing his world from Dr. Hoff. I also gained a well-experienced advocate and even mentor who has helped me navigate through the myriad of choices and issues that surround having a child on the spectrum. My learning curve was large and my confidence was low. She worked with my husband and I to obtain the skills we needed to help Alex connect.

At times I felt like we were taking two steps backward. There were some therapy sessions where he’d be so uncooperative – I mean, we’re talkin’ playing cards and plastic fruit thrown all over the place and his body plopped on a beanbag for what seemed like an eternity. Dr. Hoff would point out the positive in even these situations and would be very patient and wait for Alex to come back and reengage. I’ve had to remind myself several times that it’s a marathon more than a sprint.

Alex has been seeing her for a year and a half now and has grown in so many ways. At first he was barely making eye contact, was demanding, uncooperative, disengaged and pretty rigid - it was his way or the highway. Now, he’s wanting to play and share experiences, he takes turns, stays pretty flexible, coordinates so much better that he used to, communicates his needs, laughs and enjoys the play and he’s showing glimmers of caring about what other’s think. At home, he and his little sister are playing well together and truly enjoy each other’s company. The best part is how he wants to connect with others and, of course, that spontaneous hug.

I am awaiting the day when Alex will have such an understanding and compassion for others that he will gaze into her eyes and tell her "Thank you Ms. Nancy...for everything" with a big, genuine smile.

That First Year

About 2 ½ years ago, a well-meaning friend turned to me in the middle of a Bible study and asked if I ever thought of checking my son out for autism. Little did I know that question would send me spiraling into a whole new world.

I had never been asked about Alex in this way before and I froze up in defense. We suspected he was developing at a slower pace language wise and was a bit quirky, but hey...so was Einstein. The question stunned me. I felt as if I was caught in the act of being unaware of my son’s problems. Over the next few days I would well up with tears at the most inconvenient moments.

I searched the web, going over the autism checklists to see if Alex matched up to the criteria. Every time I wasn’t sure how to answer, I thought, “See, he doesn’t do that! Maybe he’s not.”

I spent the next few days asking people in very indirect ways if they thought he could possibly have autism. I was hoping they would say, “No, are you kidding, he’s fine.” But they didn’t. A good friend got silent, nodded her head in agreement and, with pained eyes, admitted, “I just hate to say it…I know how much you love him.”

How could it have not been clear? I wondered just how many other people thought there was something wrong with him. “Who else knows?” I thought with thick paranoia. We were so fearful of him being labeled that we thought keeping it a secret would be helpful for his future. The only problem was, it appeared everyone was in on the secret except us. It may seem absolutely insane to think not telling anyone would be helpful, but please understand, I wasn’t dealing with a full deck. A year and a half prior, both my parents died three months apart from each other and in between, my precious daughter Shannon was born.

In retrospect, being in denial and trying to cover up the obvious can be pretty embarrassing.

I remember one of the first times I saw it for myself. I had given Alex a time out and when he had finished his sentence, I asked him if he knew why he was in trouble. His big blue eyes were blank and transparent. He mumbled something that didn’t make an ounce of sense and his eyes gazed off in different directions. He knew it was his turn in the conversation, but hadn’t a clue what to say. He wasn’t present and connected – he just didn’t get it. It became obvious just how much my mind had been filling in the blanks where his communication and social abilities lacked.

Did I create a sort of imaginary relationship with my child to buffer the pain of the truth? Was the connection I thought I had not really there? Perhaps this is why people could see something was wrong with Alex before I could: they didn’t have anything to lose with the truth (except maybe a stunned friend, temporarily).

As the truth sunk in, it didn’t take long for my husband and I to see that we needed to act quickly to figure out what exactly autism was and what we needed to do about it. I felt as though I were in quick sand. My grieving process was moving at a slower pace than his need for help. It’s like I was on the wrong side of the people mover.

As I juggled through the myriad of websites and books I set out to fix him, even before I was completely convinced he had autism. There’s a tremendous amount of pressure to get your child intervention early and I felt that time was running out. I had to steel myself and get to work, viewing this whole thing as a project to get him where he needed to be.

A friend, trying to respect my secretiveness, handed me a slip of paper with the phone number of the Valley Mountain Regional Center on it. I contacted Soledad Gutierrez-Cabral, Intake Coordinator at the VMRC (209-955-3330). She answered all my tear-couched questions with kindness. We set up an intake meeting and Alex was put on a wait list to be officially diagnosed. By Soledad’s recommendation, I contacted the LUSD School Psychologist Mary Caruso (209-331-7298) to receive initial evaluations and to see what options were there for him through the school district.

Mary treaded lightly and was very sensitive to our situation. She came to our home and spent some time observing and testing Alex. I remember watching Alex sit next to her and pull out an entire mound of tissues from a Kleenex box, one by one, and throw them everywhere. We would usually allow this to keep the peace, but boy did it seem weird and inappropriate all of a sudden. I was getting increasingly frustrated with him and completely overwhelmed with what was becoming more and more clear. I remember getting choked up, wanting to break down and cry, scream and possibly throw something.

I guess, in my selfishness, I was thinking everything was a reflection on me and who I was as a mother and a person. I so needed people to show me that we are both loved, in spite of this disorder. I remember Mary letting Alex keep a cute little black and white kitty puppet she used during evaluations after seeing how much he adored it. It’s those little acts of kindness that get you through.

At the end of the home evaluation, Mary suggested we meet again. She said she wasn’t completely convinced he had autism, but after the next set of evaluations she’d be sure. I was still secretly hanging on to the hope that perhaps everyone was wrong.

After the next meeting my hope ran out and it was clear that my little boy had autism (or should I say “autistic like behaviors” because the school district can’t officially diagnose). I resigned to the fact...what else could I do?

We had an IEP meeting (which I’d never heard of before) and he was placed in a preschool class using the TEACCH program at Nichols Elementary School. He did well and was then placed in a special day class with speech and language emphasis at Lawrence Elementary School. Under the tender direction of Mrs. Diane Baker and her ever firm, ever loving cohort Cher Bear, Alex improved greatly.

I would grovel in thanks to everyone who would care and help him, being so relieved that we weren’t alone.

A breakthrough for us was when we joined a few clinical research studies at the UC Davis M.I.N.D. Institute. I filled out an online form from their website showing my interest in their CHARGE and Phenome studies. To my surprise, I was phoned the very next day. Our understanding of Alex and autism was certainly illuminated at the MIND. What a blessing to go where he was fully welcomed and wanted, where we could pick the brains of the experts and where there is solid, up to date knowledge of the disorder and hope for breakthroughs in treatment options.

He received another unofficial diagnosis from the MIND and then finally he got his official diagnosis through the VMRC’s designated psychologist.

Over time, it became obvious that he needed additional one on one behavior intervention. We were blessed with discovering Dr. Nancy Hoff who performs play therapy based on RDI principles. (I will write about what an incredible help Dr. Hoff has been to all of us in a future blog).

It took about a year to complete all the evaluations and feel like we had a solid program set up for him. If I had to answer one more multiple-choice question about his behavior I was going to implode.

We continue trying new things to increase his ability and will to connect to others. Over this past year, we’ve tried a social skills/parenting combo class at UOP, enrolled him in a play group at Speech Therapy Associates and have tried a few other activities such as swim lessons, basketball and movement class. We've had the wonderful help of Steve Taylor, our Behavior Specialist who, among other things, had Alex and his little sister potty trained in two days! We are interested in trying out a Therapeutic Riding Program and perhaps an art class in the future. Then there’s the whole biomed thing…

All along the way, we’ve been on a learning curve, trying to mimic all the various techniques of the professionals at home while continuing to learn how Alex sees the world.

There have been so many wonderful people who have and continue to come along side us and have helped Alex in so many ways. What a blessing to watch grace in action.

I did thank my friend who asked me that monumental question. Turns out, it was the nudge we needed.

The journey continues…

Back to School

Alex started first grade last Monday. His backpack looked huge – like he was going camping for a week. Why didn’t I get the smaller size?

My husband takes him to his line, says good-bye and then hides behind the dumpster, spying to see if he stays put. I’ve gotten positive daily reports.

I’m learning to relax, to “let go” (like that’s ever really possible) and to trust that God is looking after him. I try not to inquire on a daily basis about how he’s doing, but it’s hard. As his behavior specialist once told me, “Just drop him off, smile and wave bye-bye…they’ll let you know if there’s a problem”. If it were possible, I wouldn’t mind a hidden camera so I could monitor his every move.

I’ve realized my need for feedback can get me into trouble. When I receive positive feedback about his behavior, it’s as if we received a seal of approval for all the wonderful things we’ve done to help him. When I get a bad report, all my confidence circles down the potty and I wonder if I’m doing anything right.

The reality that early, intense intervention begets the best outcomes can leave one quite stressed and overwhelmed. When he’s not doing well, I fear our “early” is too late and that perhaps the program we have set up for him isn’t working. Then the panic really sets in and I want to sound the alarm, “Call out the specialists, call out the experts, call 9-1-1, get the fire hose…this is an emergency here people!”

The truth is, he has received wonderful help by many talented people over these past few years and has made great progress. He continues to have a team of caring teachers, therapists and specialists in his court who have set up a solid program for him.

This doesn’t mean that every day is going to be sunshine and lollypops or that something doesn’t need to be tweaked. At the same time, bad behavior doesn’t equate to me being a bad mother, he being a bad kid or that the plan isn’t working.

He’s going to get stressed and buck up to the demands at times, his lack of a need to please will get him into trouble with others and he may line up the balls at recess rather than play with them. He’s a work in progress just like me.

Therapeutic Riding Program

Many parents who have special needs children are looking for a permanent therapeutic horseback riding program to help their child develop better motor and communication skills, strengthen their bodies and give them an opportunity to interact socially with children like them.

The closest up and running program, Project R.I.D.E. is located in Elk Grove and has a year-and-a-half waiting list. The other local riding program TREC (Therapeutic Riding for Exceptional Children) closed down over 4 years ago.

Parents, community members and Karen Schauer, Galt Joint Union Elementary School District’s superintendent, are working to start a pilot program for children in the Galt area. Schauer said she’s ready to get some kind of riding program rolling, even if she has to do it on her own property. “I’ll do whatever I need to do,” Schauer said.

For more information contact Karen Schauer at 209-744-4545. See the Lodi News-Sentinel for the complete story.

The New Normal

I find comfort in the idea that I’m living in a “new normal”. I went from thinking my life was pretty normal, to it being quite abnormal then finally realizing that my new normal is as normal as it’s going to get, get it?

I think I need an example. We went on a short family trip to Santa Cruz this past week. I envisioned my children enthralled with all the fun and excitement of the Boardwalk with its rides, food and attractions, not to mention the free Chinese Acrobat show we could view from the beach. Pretty normal, right? Well Alex wasn’t having any of it.


He loved watching the sky ride with the gondolas that slowly go round and round above our heads. That was it. We now know that there are 42 gondolas in an assortment of pastel colors and number 1 is orange. He talked about them over and over again, drew them at lunch and still wants his little sister to ride in number 1 even though we’re back in Lodi.



Sometimes I feel like we’ve been visited by an alien. He has come to live with us, learn our ways then depart to report back to the mother ship.

With two young children, one typically developing and one with autism, my husband and I transport back and forth from one world to the other, taking turns in our parallel universes.


I get into the most trouble when I try to force the old normal back into our lives. Life is still blessed and enjoyable in my new existence - in an odd sort of quirky kind of unconventional way.

I’m a wanderer, yeah I’m a wanderer…

I dread going to the park, the store, the mall or even having my child play in the front yard.

I see other parents unbuckling their children from car seats and turn their backs while the child gets out and waits close by.

I’ve seen parents who sit on park benches and watch their children play while they read a book.

I’ve even seen, if you can believe it, kids actually hanging out on the front lawn while their Dad mows.

Over the summer, my son attended a school that had both a front and back door to the bathroom. Guess which door he decided to escape out of?

I lost him at Kindergarten orientation. I was talking with a friend and saw him walk down the hallway. He turned the corner and “poof” he was gone. I tried to play it cool - smiling at the teachers as I broke out in a sweat frantically going up and down stairs and around corners trying to find him. You’d think I just ran a marathon. I could almost hear their thoughts, “Oh there’s Mrs. Bjork, losing her child again”.

When we took my kids to Micke Grove Zoo a few years ago, Alex literally took off along the path and ran by every exhibit without even a glance at the seals. I think we were done in 15 minutes.

People in my neighborhood wonder if I even exist because we are often sequestered to the house or backyard.

I just read a story on CNN.com about an organization called “4 Paws for Ability” that trains service dogs a variety of methods to help keep kids with autism safe. “Since many children tend to wander away and get lost, 4 Paws uses a technique called "tethering," where the kids are tethered to their dogs while in public.” Hmm, not a bad idea. See CNN.com for the full story.

It’s not that I never let my son go to the park or play out front. It’s just that it’s not one of my preferred activities...and I may tantrum.

Some Helpful Books

Below is a list of some books I’ve read on autism (when I’ve had the time!) that have educated me and have given me clarity, direction, understanding and hope. I hope they will benefit you as well.

Helping Children with Autism Learn – Bryna Siegel, Ph.D.
A Psychologist at the MIND INSTITUTE recommended this book to me. It’s very lengthy and a bit dry, but boy does it cover just about everything there is to know about autism and current treatments in great detail.

Facing Autism – Lynn M. Hamilton
A Mother’s journey to helping her son. Lots of detail on where to go and what to do. I related to a lot of her experiences.

Emergence – Labeled Autistic and Thinking in Pictures – Temple Grandin Ph.D.
Temple Grandin, Ph.D. is one of the most accomplished and well-known adults with autism in the world. She is known worldwide for her work on the design of livestock handling facilities. She has written a number of books about her life and how she sees the world. Check out www.FutureHorizons-autism.com for a complete listing of her books and other resources.

Ten Things Every Child with Autism Wishes You Knew – Ellen Notbohm
The first book I read on autism. Great initial explanation of how your child views his world.

The Science and Fiction of Autism – Laura Schreibman
I have been so worried about whether or not I’m doing everything possible for my son. A report from the Interactive Autism Network states that there are over 300 treatments for kids on the spectrum. How do we make the right choices? This book wades through the sea of misinformation and conflicting reports in an effort to help you think critically and make informed choices of treatment for your loved one.

TalkAbility – Fern Sussman
People skills for verbal children on the autism spectrum – a guide for parents. Clearly written with lots of pictures and examples to guide you on how to teach your child to navigate the demands of everyday social life.

Play Groups to the Rescue!

Soon after his diagnosis, I was faced with the daunting task of teaching Alex social skills. (It’s like teaching a fish to sunbathe.) I can pick up the phone and schedule a play date like the next parent, but what to do once the kids arrive is a bit of a head scratcher.

Well, like a little blessing from God, there was a flyer in my son’s school bag from an organization right here in town called Speech Therapy Associates.

It read, “Building Blocks Language Playgroup...a unique educational playgroup designed to help your child develop the speech, language, literacy and social skills they’ll need to be successful in school”. There was more… “Children of all abilities are welcome!” Still more…4:1 teacher child ratio, only 8 children per class and your 3 – 5 year old can attend once or twice a week for 2 hours a pop!

Needless to say I signed Alex up and he really enjoyed it and grew from it. I was comforted knowing that Alex was learning social skills in a structured environment by highly trained, caring individuals in addition to the help he receives at school and home. I was also comforted in knowing that I have the option of zoning out in Target for almost 2 hours twice a week.

Well, just when I thought it couldn’t get any better, another flyer shows up asking the questions: “Does your child have difficulty making friends, asking and answering questions, have repetitive speech, limited attention…?” Speech Therapy Associates was announcing the launch of another social skills playgroup called “Circle of Friends”.

This program is different from Building Blocks in that it’s for kids ages 5 – 12, has only three children per group and goes twice a week for 1-½ hours. “Circle of Friends gives children the opportunity to build social and language skills that will help them initiate and maintain peer relationships. We make communication experiences functional, positive, and fun!”

Did I hit gold or what? Alex’s group is working on turn taking, attending, following directions, asking and answering questions and interacting appropriately in various social situations. We receive video clips of the session periodically and were given a social story to read to our child before he attends to reinforce good behavior.

The team is just wonderful: very knowledgeable, always kind, supportive and present for any questions I might have.

In addition to their preschool language and social skills play groups, Speech Therapy Associates also offers complete speech and language evaluations, individual speech and language therapy, and school and agency staffing,

They also offer Parent education classes where Parents learn about communication and language so they can help their child’s communication develop.

For more information on how Speech Therapy Associates can help your child, call Sara Peterson at 209-334-0830 and visit www.staspeech.com.

Gene Discoveries Yield Autism Clues

I saw an encouraging article on CNN.com about gene discoveries and autism. I’ll admit I had to read it a few times to really grasp it.

What I find hopeful is that, for some children, therapy can “turn on” genes that were stuck in the “off” position. The article states: "There are ways that are being discovered to activate genes...This might be an unanticipated way of developing therapies in the long term for autism: Identifying these kids where all the right genes are present, just not turned on in the right way."

CNN.com has all the details.

Interesting Article on Proposed Chelation Treatment Testing

A front-page article in the Lodi News Sentinel on July 9th stated that Government researchers are pushing to test chelation therapy on children with autism. Chelation is a process that removes heavy metals from the body. The treatment is based on the fringe theory that mercury in vaccines triggers autism.

The article states this theory has never been proven and is rejected by mainstream science. Still, many parents feel the process has saved their children and are pushing for the study. The director of the National Institute of mental Health supports testing it on children as long as the tests are safe.

The article goes on to say, “Despite lawsuits and at least one child’s death, several thousand autistic children are already believed to be using chelation.”

For now, the study has been put on hold because of safety concerns.

The Associated Press story has all the details.

Tips of the Trade

I’ve come across some tips over the past few years that have spared me from what could have been some pretty unpleasant outings with my son. I hope some of them will be helpful to you as well.

During Christmas time I read an article about how to keep your child with autism calm during the holidays: a calculator! I cannot tell you what a miracle that little thing has been for us. We’ve been able to go out to dinner, visit friends and make it through a long shopping spree while he sits punching away at the numbers. Yes, it’s stimming, but hey, if it works…

Some restaurants have ceiling fans going that have kept his attention through an entire meal! Promising to go by the fan section at Lowe’s has made a trip to get some light bulbs tolerable as well.

During car trips, Alex stays calm while watching the track numbers on the CD player while listening to his favorite music. Beware the person who dares to play a song out of order.

Alex used to fight holding my hand in the parking lot or while crossing the street. I heard that asking him to hold on to my shirt, pant belt loop or other piece of clothing might work. I’ve almost had my jeans pulled down while dragging him into the store, but by golly he was safe. I’m happy to say that we’ve graduated to finger holding.

This might not be earth shattering, but a Ziploc bag filled with his favorite treats and a juice box has done wonders in Target.

Binoculars can make the time spent in the shopping cart an adventure. Bringing magnetic letters and a board or a magnadoodle has been helpful as well.

Then there’s the tried and true, “I’ll take you by the dollar section and buy you another calculator if you’re good”.

Boy with Autism on America's Got Talent

This 7 minute segment of a 9 year old boy with autism singing on America's Got Talent 2008 will touch your heart. His mother's reaction to her son is precious. Have a box of tissues handy!

A Successful Plunge into Swim Lessons

I finally took the plunge and signed my kids up for swim lessons. I was so concerned about Alex’s sensory issues and his reluctance to follow directions that I haven’t looked into lessons until this summer.

I thought private lessons would be best and was pointed in the direction of John Griffin, the Lodi Swim Team head coach. My hope was to receive some referrals from him, but instead, I was thrilled to learn that he was giving private lessons through a program called “Swim America” with his crew of talented teens at Tokay High.

He offered 3 sessions; each consisting of eight 30-minute lessons over a two-week period…and the price was reasonable too!

Thank goodness for experienced instructors, because, if it were up to me, I would have rescued my kids from the terror of the initial plunge once the cries came – and they came. John just pulled Alex right into the water and started going. Wouldn’t you know it – the crying eventually stopped!

John has been wonderful with Alex, singing to him the whole time in the pool and having him count his kicks to keep him distracted from his fear. He slips in the next challenge so seamlessly that Alex doesn’t have time to object (or at least, not too strongly).

At the start of the second lesson, John picked up Alex in his arms and jumped right into the pool. I almost had a heart attack, but I could tell Alex liked it. In fact, every day his enjoyment is increasing.

I so value teachers, therapists and instructors like John who have come into Alex’s life with a talent for knowing when to ignore his complaints and keep pushing him and when to slow down. It’s an art I haven’t quite mastered yet. All I want to do is take him right out of the uncomfortable situation and feed him his favorite hot dog sandwich.

I must be getting better. At the last lesson I was filming my kids as they cried and bargained for their lives. I just gave them a big thumbs-up and said, “You’re doing great honey!”

For information on how to obtain swim lessons for you child, contact John Griffin at 209-368-8475.

Circus Lessons

Speaking of sensory issues, we visited the San Joaquin County Fair a few weeks ago. Alex was in extended year at Beckman and his class planned a field trip there. I came along to share in the special moments with my son.

There was excited anticipation as the children went to experience first-hand the clown and circus acts that would further enhance their "circus" summer school theme. It was a great idea, but we were soon disappointed with what was actually presented.

First on the venue was a “clown act” which turned out to be two jolly, well meaning adults dressed in full wacky attire blowing up animal balloons in the 100-degree heat. Unfortunately, the sight of the balloons sent Alex backwards a good 15 feet with hands in perfect over–the-ears position. The threat of a balloon popping drained the joy right out of him. We backed right next to a father and his daughter who were having similar issues.

I don’t wish sensory problems on anyone, but I did appreciate being around others who share in the same challenges. It helped me to realize we weren’t alone.

There was a small circus performance a little later with the main act being two clowns blowing up balloons and popping them. Oh great! Half the class had to escape to higher ground.

We survived and that’s probably the positive take-away point. Alex has to live in this world and there are going to be unpleasant experiences. He made it through and the memory of his success will serve him well next time around.

Kudos to their teacher Mrs. Hazen and the instructional assistants for going above and beyond, ending the summer session with a fun classroom circus performance. There was a magic show, juggling, tumbling, stilt walking and even a flying Alex (see photo). It was wonderful to see the children do so well despite their various challenges. They each received a certificate at the end, highlighting their improvement over the past two weeks. My husband and I were two of the many proud parents attending that day.