Scribblings

In An Emergency...

I'm worried about our little T. Linda took him to the doctor yesterday because he was wheezing and his breathing was labored. It turns out one of his tubes fell out and that ear became infected. The scarier part was that they did a pulse-ox test and his O2 level was only 90%. They had to do a nebulizing treatent. Up until that point, Tomas was very cooperative says Linda but when the nurse came at him with a mask, he began to fight and scream.

It got so bad, Linda says, she told the nurse to stop and leave. Linda held the mask by Tomas's nose and the nurse kept haranging her, saying you're not doing it right! Linda felt that at least this way, Tomas was getting some benefit although the nurse was saying you're wasting the medicine. Okay, now, by then Linda had told the nurse that T is on the autistic spectrum. Aren't pediatric nurses supposed to know what to do when they have a special needs child? Surely there is another way to do this. Tomas has never allowed anything on his head or face, no hats, fake noses or what have you.

Anyway, after 3 hours, they were finally able to come home. By then T's pulse-ox was up to 93%, still low. Linda told me they would have to return in the morning (this morning). So they've been gone almost 3 hours again and I'm wondering what's happening. Will they have to send T to the ER? I'm very worried.

Tomas At Play

Today when Tomas sat on my lap and watched me play Chuzzles, I heard him say, "blue, blue!" Oh boy, was I happy! I'd heard from Kennan that Tomas can run and jump over an object and that he was saying blue and yellow but hadn't seen or heard yet myself. But as I moved my cursor over a blue Chuzzle, he said it and it was clear as a bell, "Blue, blue". His teacher has written us notes that he is progressing quickly through his program and can match colors and shapes. He's still fairly "self-directed" but he's getting much better at complying with requests we make of him.

At dinner time, I was remembering what the early intervention teacher said once about having Tomas sit in a booster seat so that his feet would touch the chair. It's supposed to help a child feel centered. Tomas doesn't like his booster seat but he does like his little chair and table so we moved it close to the big dining room table and it seemed to work. He had both feet on the floor and his own table to sit at and he just seemed much more comfortable.

For some reason, putting on his pants and/or shirt remains an issue. We haven't quite figured that one out all together. I know he prefers his pants to have snaps and zippers. Maybe that's why he's reluctant to put on jammie bottoms or track pants. As for the shirts--we also know he does not like button down shirts. Polos and tee shirts are fine but not always. We are all a work in progress.

I took pictures of Tomas at play the other day. Click the picture to get the rest of the album!

A sign for autism

What a coincidence! This morning, I was talking to TB about how--when we thought Little T wasn't talking because of a hearing loss--some things just seem to fall into place and out of bad/sad things can come some good. One thing we talked about was that I grew up with Deaf parents and how that sort of set me apart. When we thought T couldn't hear, I realized that once again having Deaf parents and fluency in sign language was going to be helpful. Even when we learned that T's hearing was normal and that he was diagnosed with PDD-NOS, the sign language still was beneficial.

Okay, so today I checked my email and there was an update in a newsletter I subscribe to about Deafness and Deaf Culture. And what do you think I saw? "Acceptable sign for autism?" I clicked on the link and brought up a post, a question posed in the sign language and Deaf Culture forum. It was from a hearing person who said she was autistic and was offended by the sign for autism:

My ASL dictionary gives the sign as two 'C' hands covering the face, to show being 'cut off from the world'. I find that sign offensive, because autistic people are not cut off from the world. This is a common misconception, based on the fact that a) many autistics don't have the same kind of signals for showing that they are paying attention - for example looking at things out of peripheral vision is common, and b) autistics are often interested in different things, so for example they may be noticing a pattern on the floor while ignoring a person nearby.

Wow, she has a point, I thought. The next poster agreed. The poster after that, however, totally astonished me by the attitude taken. First off, the responder doubted the original poster was autistic--saying something to the effect of if you are really autistic then I am a monkey's uncle. What insensitivity! I thought. And if this responder is Deaf, how ironic--Deaf people have been misunderstood and stereotyped by hearing people, you'd think there would be more sensitivity and awareness for other disabilities.

You'd think so.

Well, it turns out that the first poster has PDD-NOS ... the same diagnosis as Tomas. The "Doubting Responder" (I'd say Tom but don't want to associate this person in any way with my little grandson) doesn't think that PDD-NOS is autism, although it's on the spectrum. The Doubting Responder repeatedly referred to PDD-NOS as a "mental illness".

I think there is a lot of ignorance going on around here and it all has to do with how we perceive others. In 20 years, I could imagine our T writing such a letter as the first Poster did. I certainly hope we have a better understanding of what autism is and isn't and how widely different we all are on the human spectrum, never mind those on the "autistic spectrum".

And yeah, let's come up with a better sign for autism!
Here is the first in a series of youtube videos that totally blasted away any stereotypes I had about what it means to be autistic. Watch this and then click on others by the same person, silentmiaow. You'll be amazed!

Some Days Are Very Hard

Some days are harder than others when I'm taking care of Tomas. I knew this morning would be rough because he's had a spring break and so he'd be transitioning back into a schedule of eat, get dressed, get on the bus, go to school after more than a week off. The Nor'easter we had yesterday closed the schools and threw everyone off too. I'm not even sure T understood why he wasn't going to school last week.

Anyway, everything was fine until it was time to get dressed. Tomas wanted me to raise and lower the blinds in my bedroom. This is a game we've played for several months now with variations on the language: the blinds go up, the blinds go down, open the blinds, close the blinds, pull the cord, etc. He was still in his jammies and needed to have a diaper change. Again, I'm not sure how much of the behavior is related to PDD and how much is related to just wanting to get his own way. I can't think of any 2 or 3 year old that responds well to "not now" or "later".

Tomas took it very badly. He would not allow me to change him and when he does not want something to happen, it usually can't because he fights like his life was in danger. I stayed calm and said we couldn't play until he got dressed. It takes him a while to process things and so I let him alone for about 10 minutes before broaching again "Let's get dressed." I added that when he got dressed, we would be able to open and close the blinds. He didn't like it.

Now, Tomas slept in this morning. Normally he's up and around by 6:45, just when Linda leaves for work. Today he'd slept until 7:30 so I was working with less time than usual to get him ready. On the other days, he'd be ready so fast we'd have an hour to kill before the bus came. It was still rotten outside so I couldn't use "let's go for a walk" to coax him.

I thought, okay, well, let's at least get him out of my room so he won't be tempted by the blinds. He did not want to go and kicked me several times as I carried him into the hall. I closed the door and right away he began fighting me to re-open it. "Tomas, stop" and "we can go back in when you get dressed" didn't penetrate. Heidi heard the commotion and came down to help.

He's learned to open the door by turning the knob and so he was trying to twist my hand and fingers so that he could get to the knob. I had Heidi go into my room and lock the door from the inside. That stopped that skirmish but then came the diaper battle which left my nerves raw and rattled. He's got to have one particular type of diaper and if it's not there he becomes very angry. Of course, the diaper he wanted wasn't there. He didn't want the diaper or the pants...I was thinking I ought to just send him in his PJs and dirty diaper but I just couldn't. He'd been in that thing all night and needed to be changed.

I called Kennan to see if he had some good ideas to calm T and it was right about then everything seemed to go through the baby's brain. It was like flipping a light switch on. All of a sudden, he was all smiles, cooperating with the diaper change, trying to put on his pants...???? Is it the processing time? Was it that I called his dad? I am not sure he was even aware I'd called.

Well, I won't go on and on about it except to say that I really need to learn how to cope with all of these behaviors. I am okay with sending him to school in his PJs if he won't get dressed but not in a dirty diaper. How do you get through to a child with the issues Tomas has? That's what I need to know...

Humanizing Anxiety Disorders

At 16, I had my first memorable panic attack. What was I doing? Just watching Ben Hur with my family. It's a very emotional story about a wealthy Jewish man, Judah Ben-Hur, who thought he could be friends with a childhood friend who'd become a Roman soldier. Well, it turns out he couldn't. This soldier did his best to destroy Judah's whole family -- and he couldn't. The movie was subtitled A Tale of the Christ but Jesus only put in an appearance a couple of times. This was more like the affect Jesus had on Ben-Hur's family. Okay, well, but that has nothing to do with what happened to me. I think.

As I was watching the movie, all of a sudden the room began spinning. My heart started pounding and it seemed like there was a loud whooshing rushing sound in my ears. I almost felt like I was outside myself, watching myself, thinking that I was going to die or something awful was going to happen if I didn't get up and move right now and so I jumped up and rushed into the kitchen. I got myself a drink of water. It was dark in the kitchen and I drank the water slowly, waiting for my pounding heart to slow down.

When I went back to the living room, no one noticed anything and I was relieved. If I was going crazy, I didn't want anyone to know--especially not my parents!

It kept happenening, though, and I wondered how long it would be before everyone found out and I totally lost my mind. I'd get locked up in some institution, for sure! I'd be sitting in class listening to a lecture and wham! "It" would happen to me again. "It" would sneak up and take my by surprise and I never knew when or why. All I knew was that I was sure something terrible was going to happen to me. "It" would last for minutes or hours and the feelings of dread and fear were just pure agony. And no one knew what was happening to me.

I guess I mask well.

I did try to find out what "it" was by trying to explain "it" to my psychology teacher. My words were barely adequate to describe what I was feeling. She looked at me sympathetically and said, "don't worry about it. It's an identity crisis. We all go through it."

So I did feel better about that. It wasn't just me. When I was eventually able to confide in my best friend though, she looked at me with a sort of horrified expression. "Maybe you should see a doctor," she suggested. "It" had never ever happened to her. That scared me enough to keep my mouth shut and suffer in silence for the next few years.

When I did go to get help, I was scared by what the therapists were telling me. They used words like dissociation and fugue to describe what was happening to me. My gosh, did I have multiple personalities?

I read up on it and realized that those terms didn't exactly fit. I mean, I could remember everything that happened when "it" would come upon me. It's just that it seemed like I was watching it happen to someone else. I wasn't becoming anyone else and I sure did remember every agonizing second! I referred to "them" as "my spells". Therapists would give my anti-anxiety and antidepressant medications for about a year until "my spells" would go away and then I'd go off the medication.

I'd be fine for a year, maybe up to 5 years but then "my spells" always came back to haunt me. In 1980, I finally found out what they were really called: panic attacks. Over the years, I've learned that I do not cause them to happen to myself, that my inability to control them doesn't indicate a weakness of will, and I'm most definitely not crazy. For many years, there's been a stigma to having any mental illness or disorder.

Once a doctor compared disorders like panic to diabetes I finally "got" it. It's something biologically and has nothing to do with my character at all.

Now, here is this article:

The Mystery Behind Debilitating Phobias

NEW YORK, March 4, 2007
--------------------------------------------------------------------------------
(CBS) David Hoberman is obsessive-compulsive and has more phobias than you can count.

"I always go to the right of anything," he told Sunday Morning correspondent Martha Teichner. "I will not go under ladders. I don't like to fly."

From the very first episode, Monk, USA cable's star detective, was meant to be the walking definition of anxiety disorder — but funny. The back-story is that Monk and Hoberman, the show's creator, have a lot in common.

For the 40 million Americans who have an anxiety disorder, fears from ailuraphobia (a terror of cats) to aphenphosmphobia (dread of being touched) are not just funny-sounding crossword solutions, as actor Tony Shalhoub discovered.

"People's lives can be, you know, shattered," he said. "I realized we really have to tread lightly here, because it's a serious problem."

Jerilyn Ross, who runs the Anxiety Disorders Association of America, said that people who suffer from obsessive compulsive disorder are being sent the wrong signals about what they should fear.

"Something is telling your body that there's danger, but there isn't any danger, and so what happens is the person is totally aware that this is irrational," Ross said. "Even people with the same, exact anxiety disorder can have very different symptoms."

Jennifer Reines was 15 and at a party when her first panic attack came out of nowhere. Suddenly, her body felt very hot and the room began to spin.

"I felt like I was having a heart attack," she said. "It was probably the most terrifying experience in my life, and then after that I started to get them every single night before I went to bed."

Stephanie McKee has a fear of elevators and has been in therapy for years. She can remember walking up 19 flights of stairs rather than taking an elevator.

Emily Ford was afraid of talking in public. It got so bad that at one point she eight months living by herself in a cabin with no electricity in the Vermont woods.

"I'd sweat," she said. "I'd just be terrified that I was just gonna say something wrong or foolish and I couldn't talk, so I just wouldn't go out."

All three of these young women have been struggling to overcome what they consider the living hell of their anxiety disorders at the treatment center Ross runs outside Washington, D.C.

"A lot of people think that, 'Oh, you're not really sick,' or you know, 'It's just in your head and you can just get over it,'" Reines said. "But it is a disease."

Scientists have found that there is usually a genetic predisposition to anxiety disorders and they can be triggered by a physical or emotional trauma. Caffeine can even set off the accompanying panic attacks. Twice as many women have anxiety disorders as men, and sufferers can't turn their fears off because their brains function abnormally.

Dean of the Mount Sinai Medical School in New York City, Psychiatrist Dennis Charney studies anxiety disorders. He said the amygdala, the part of the brain that registers fear, seems to be overactive in the brain of a person who suffers from anxiety disorder. The cerebral cortex, the part of the brain that tells you to calm down, appears to be under-active.

"For the patient, many times it's gratifying to know that it's not a weakness, that this is a brain disorder that scientists are learning more about every day, so we can develop better treatment," Charney said.

Phobias, like the fear of heights James Stewart experiences in "Vertigo," are the most common of the many anxiety disorders. In "The Aviator," Leonardo DiCaprio plays reclusive billionaire Howard Hughes, who had among other things a germ phobia. Hollywood seems to love fictional anxiety disorders — remember Jack Nicholson in "As Good as It Gets?"

But real performers get them as well. Donny Osmond and Barbra Streisand both have suffered from social anxiety disorder, which led to debilitating stage fright. Streisand didn't perform in public for years.

Because of 9/11 and the Iraq war it would be hard not to have heard of post traumatic stress disorder.

Composer Allen Shawn suffers from agoraphobia — a fear of being unable to escape, and a fear of being anywhere outside his personal safety zones, including Bennington College in Vermont, where he teaches. Cars, elevators, airplanes, open spaces and closed spaces can all frighten him.

"I have turned my car around many, many, many times," he said. "I'll literally have the feeling, you know, I don't deserve to live. It's a terrible, terrible feeling."

He called the memoir he's just written "Wish I Could Be There." His father, William Shawn, the longtime editor of "The New Yorker" magazine, had multiple phobias and the magazine was his safety zone.

"The New Yorker made it possible for him to engage with everything and with all kinds of people, without you know, going to Mt. Everest," Shawn said.

Shawn believes that his phobias were triggered by the institutionalization of his twin sister Mary who was autistic. He said he internalized the shock of what he saw as a banishment of his sister. His feelings were then compounded by the fact that his family never discussed what happened.

"We didn't process it as a catastrophe," he said.

Shawn believes years of treatment, medication and psychotherapy have helped him battle his fears and to accept that his achievements, even his music, may be a response to them.

"In music I can actually go down the lonely wooded road and not, you know, bolt from it and turn the car around," he said.

Monk, the TV detective, may also benefit from his phobias. Monk has become the stand-in for millions of Americans, who want people to realize that for them, just getting through a day can be an act of courage.

"The crime solving is related to his obsession with orderliness," Shalhoub said. "I just focus on what's off."

"The fact that Monk is so brilliant, and the fact that at the end of the episode he is able to overcome his issues, to solve the murder, is heroic," Hoberman said.

What I like is that a character like Monk puts a sympathetic, human face on a sometimes disabling disorder.

Fog of Confusion 2

One reason I had to make another entry was to get rid of that second explorer page. I was having too much trouble trying to go back and forth. I have only just figured out moving from tab to tab on a single page--which I really like now. Anyway, the other article on fibro fog was on the Arthritis Foundation website and I found it to be helpful and hopeful.

Clearing the Fog

Excerpted from Good Living with Fibromyalgia Workbook.

Many people with fibromyalgia experience unclear thinking or cognitive dysfunction. They become forgetful, lose their train of thought, forget words or mix them up. This is what is popularly called fibro fog. There's no known cause for it, and the only treatment for it is following some basic memory and communication tips.

Below are some common-sense pointers that can help you clear the fog.

Repeat yourself. Repeat things to yourself over and over again. Repetition will keep thoughts fresh in your mind.

Write it down. Whether you write in a calendar, in a notebook or on sticky notes, if you're afraid you won't remember something, putting pen to paper can help.

Pick your best time. If there is something you need to do that requires concentration and memory, such as balancing your checkbook or following a recipe, pick your best time to do it. Many people with fibromyalgia say they perform best early in the day.

Get treated. Depression, pain and sleep deprivation can influence your ability to concentrate and remember. Getting your medical problems treated may indirectly help your memory.

Engage yourself. Reading a book, seeing a play, or working a complex crossword or jigsaw puzzle can stimulate your brain and your memory.

Stay active. Physical activity, in moderation, can increase your energy and help lift your fibro fog. Speak to your doctor or physical therapist about an exercise program that is right for you.

Explain yourself. Explain your memory difficulties to family members and close friends. Memory problems often result from stress. Getting a little understanding from the ones you love may help.

Keep it quiet. A radio blasting from the next room, a TV competing for your attention, or background conversation can distract your attention from the task at hand. If possible, move to a quiet place and minimize distractions when you are trying to remember.

Go slowly. Sometimes memory problems can result from trying to do too much in too short a period of time. Break up tasks, and don't take on more than you can handle at once. Stress and fatigue will only make the situation worse.

Some of these I do already--I know I focus better in the mornings. I read and do puzzles. Other things I need to start doing.

And here's the lyrics for "Ball of Confusion" while I'm at it. I always did like this song.

Fog of Confusion: That's What My Mind Is Today

My title is a take-off of the Temptations song "Ball of Confusion" but that's not what the post is about. I was looking for information on the ball of confusion from an episode of Sponge Bob. You flip the switch on and immediately all intelligence is vacuumed out of your brain and you stand with with a vacant expression, drooling all over yourself. I feel like that many days, like everything's drained out and I can't put two thoughts together, can't seem to do the simplest task (like heat up an already cooked pork roast), and just generally feel like a sack of jello. Most of the time I get really mad at myself when this happens, which does absolutely nothing to help.

What did help was doing a google search of brain fog, all in fun, and coming up with some useful information. Now, here is the problem I'm confronting at this very moment in time: where did I put all that information? I installed Explorer 7 not long ago and it's great because of the tabbing ... except ... if I click on one of my toolbar icons, a whole nex Explorer page opens up. That's what my problem is right now. I have two explorer pages open and trying to process and find all the information I want for this post is sizzling my brain.

On one explorer page, I have tabs for Stumbleupon.com (which looks really interesting!), the lyrics to the Temps' song, my entry and an article called "FIBROMYALGIA AND BRAIN FOG OR FIBRO FOG". However, I remembered also finding an article from the arthritis foundation about fibromyalgia fog. Where did it go? No tabs...had I closed it by accident? And then I realize there is yet another explorer page open. That page opened because I clicked an icon for our photo gallery. And on that page is the tab for the other article.

I am totally blown away. I sit staring at the screen wondering what to do next. I feel a vacuous expression coming over my face. Next I'll start drooling. But wait! This second page has some really helpful information so that I can try to cope with what's happening.

Here is the first article:

Fibromyalgia & Brain Fog or Fibro Fog

Brain fog aka fibro fog is a commonly reported symptom of fibromyalgia. Fibromyalgia patients often describe multiple sensations of fatigue and listlessness combined with transitory states of confusion, poor attention and concentration, and short-term memory loss. This fibro fog tends to exacerbate the deficits in daily functioning that a fibromyalgia sufferer must deal with.

What causes fibro fog? There's no conclusive origin for this symptom of FMS, nor an explanation as to why it exists in varying degrees for different fibromyalgia patients. Sleep deprivation and significant difficulty in achieving and/or maintaining deep level sleep, however, may very well point to the answer.

It is at the deeper levels of sleep (delta wave sleep) that a person's mind conducts its internal "housekeeping". During this phase of sleep, newly acquired information is assimilated and integrated. The inability to get enough restorative deep-level sleep may have an impairing effect on an individual's ability to recall information or operate at a normal level of mental efficiency.

The thing about sleep makes a lot of sense. I didn't sleep well last night and was up really early so that Heidi could go on a field trip to Mt. Laurel. She still has a driver's permit and so I needed to go with her on the drive. Anyway, after I got back home I felt increasingly sleepy so I took a long nap. Instead of feeling refreshed when I woke up, I felt drugged and confused. Then the fog descended.

Next article: Dealing with fog

"Jersey scientists find a possible key to autism"

TB shared this article from The Star Ledger with Linda and me. Wouldn't this be something if this turns out to be a big break through? Thank God for dedicated scientists who research!

Jersey scientists find a possible key to autism
Sunday, February 18, 2007
BY PEGGY O'CROWLEY
Star-Ledger Staff

A team of New Jersey scientists believes it has found ways to detect biological risk factors for autism through simple urine and blood tests, a discovery that could lead to groundbreaking medical treatment for the neurological disorder.

The team of 16 scientists, mostly drawn from the campuses of the University of Medicine and Dentistry of New Jersey, say their findings, the result of more than two years of study on how the body breaks down fatty acids, could be a breakthrough for what is the fastest-growing developmental disorder in the nation, with no known cause or cure.

The UMDNJ researchers say they have found that children with autism are unable to metabolize key fatty acids that help the body fight inflammation that causes damage to the brain and other organs.

"It's an exciting story that's unfolding," said George Lambert, coordinator of the 15-member research team.

The potential treatment, members of the team say, is a kind of "therapeutic cocktail" tailored to each child, which would give them a dose of a "good" fatty acid that they are not able to make on their own. Team member Bernd Spur of UMDNJ-Stratford created the chemical process to replicate one of those good fatty acids.

"The pathway doesn't work (in the body), so we circumvent it," said Spur, a chemist.

Currently, the only way to diagnose autism is by a clinical assessment of symptoms, which include difficulty with communication and social interaction, as well as obsessive behaviors and interests. New Jersey has a high incidence of the disorder, affecting 1 in 94 children in the state, compared with 1 in 150 in the U.S., according to the Centers for Disease Control and Prevention.

Researchers say that in the future a person's risk for autism could be measured with a simple urine test that would look for high levels of "bad" fat molecules, or a blood test that could reveal genetic problems, including the absence of a key gene, called GSTM1, which is responsible for metabolizing good fats. Many people with autism do not have this gene.

Xue Ming, a neuroscientist and a founding director of the Autism Center at UMNDJ-Newark, discovered that children with autism have higher levels of bad fat molecules in their urine than typical children.

No one understands yet why it is that so many children with autism have such metabolic differences, but Ming suggested it might be caused by an interaction between genes and the environment. It may be that having less of these key fats reduces the body's ability to deal with environmental and metabolic stress.

Since the 1990s, scientists have known about the potential for good fatty acids to treat inflammatory diseases such as Crohn's disease, ulcerative colitis, even asthma and Alzheimer's.

That potential has spurred a frenzy of research into lipids, the fatty compounds that include fatty acids. Studies at the University of Pennsylvania and Vanderbilt University have confirmed the New Jersey group's findings, said Spur.

At Harvard University, researchers are working on treatments for asthma and periodontal disease, while researchers at Louisiana State University are focusing on stroke.

Team members have been meeting every week for more than two years to discuss the results of their experiments. They include Lambert, a pediatric toxicologist who looks at the impact of the environment on children; Spur, the chemist who replicated the fatty acid in the lab; neurologist William Johnson, who associated the missing gene with autism; and Ming, a neuroscientist who tested for the presence of bad lipids in children.

So far, the scientists have obtained six patents for their research, Lambert said. They soon will meet with the Food and Drug Administration to discuss the requirements for producing and testing their substances, he added.

"Metabolic issues in autism are entirely understudied," said Sophia Colamarino, science director for Cure Autism Now, a major advocacy and research group in Los Angeles. "It's a very exciting area. There is accumulating evidence that would clearly tell me this is where I should look."

The New Jersey scientists are cautious, however, about their preliminary results, and warn families not to expect a miracle cure. Testing on humans, they say, could take a few years.

Meanwhile, the researchers are preparing a preliminary study to begin in September. Lambert hopes to work with 5- to 7-year-olds at the Douglass Developmental Disabilities Center in New Brunswick, a school for children with autism run by Rutgers.

Lambert will be giving the children doses of a good fatty acids to see if they have any noticeable effect on the children's cognitive, social and behavioral states. The study will use a control group of similar students.

"New Jersey is the perfect place to do this," said Lambert, director of the EPA-funded Center for Neurotoxicology. "We have a high incidence (of autism), a long history of activism and a strong community."

Peggy O'Crowley may be reached at pocrowley@starledger.com or 973-392-5810

© 2007 The Star Ledger
© 2007 NJ.com All Rights Reserved.

Posted by Cassie at 12:10 PM | TrackBack

Diagnosis: Autism II

When Tomas first began to visit us on weekends, TB and I were alarmed by behaviors described in the previous article. Like the little boy Christian, Tomas would have long, violent tantrums because we couldn't communicate with each other. We didn't have to bolt things down but little T would throw himself against the wall and onto the floor and it was frightening. It was also terrible because we knew he wanted or needed something we just didn't know what. He had no words. He didn't point at what he wanted. And like Christian, Tomas didn't have any real play skills.

It's all so different now thanks to the early intervention program which taught us skills to help Tomas communicate.

I knew from playing with my 3 kids that it's important to get down on the floor with the child. It's more meaningful that way. So right from the beginning I was always getting on the floor to play with Tomas. In many ways, his responses were sort of inconsistent like Haydn's in the previous article. Sometimes he'd turn and look when I said his name. Most of the time it was like he didn't hear. Yet, he would consistenly make eye contact...not looking at my mouth or away, but directly into my eyes. He laughs. He enjoys praise. I suppose that this is why he has the "not otherwise specified" diagnosis. He's not "typical".

Other changes and strides Tomas has made since moving in:

He points at what he wants
He says a few words
He signs "more"
His play is much more imaginative than it ever was before
He enjoys interacting with us
He will interact with strangers--he's shaken hands with Heidi's DVR counselor, given a doctor a hug, given the new teachers hugs
He's able to do more things independently--now he can put on his shoes, socks, pants (with help), shirt (with help) and is trying very hard to master snaps and zippers

With all the intervention, Tomas has new connections in his brain and it's very encouraging!

There's no cure for autism but the encouraging thing is that some behaviors can be reduced to the point that they're not noticeable anymore.

It sounds almost like the diabetes I've got--I'll always have it but with intervention I can get it to the point where it's about unnoticeable.

Diagnosis: Autism

This segment appeared on Sixty Minutes and I'm so sorry I missed it.

Diagnosis: Autism

Feb. 18, 2007 -------------------------------------------------------------------------------- (CBS) The government recently announced that autism now occurs in about one of every 150 American children—a new number that is adding to what was already a raging controversy: with parents groups arguing with scientists over what causes autism, and with politicians over funding for research.

In the meantime, behavioral scientists are trying to identify the early symptoms so that a diagnosis can be made by the age of one. As correspondent Lesley Stahl reports, today most children are left undiagnosed until they’re five years old.

Researchers at the M.I.N.D. Institute at the University of California in Davis believe, if they can catch it early, they can change the way a child’s brain develops. They have started testing their theory in toddlers like Christian Heavin.

Psychologist Sally Rogers, a pioneer in the field of autism treatment, started giving three-year-old Christian intensive therapy about a year ago, hoping to alter the course of his autistic behavior.

Asked what his behavior was like before she met him, Rogers says, "Well, when we first met Christian he didn't have any words."

"He didn't really have any play skills. He mostly threw things on the floor," she adds.

And she says he would throw 20-minute temper tantrums because he couldn’t communicate. "He was really out of control," Rogers says. "They had to bolt the furniture to the walls because this two year old was in danger of pulling furniture down on himself."

Dr. Rogers worked with Christian one on one—on her hands and knees, in his face, teaching him new words and forcing him to interact with her.

She believes that if treatment can begin this early, while a child’s brain is still malleable, the results can be dramatic.

"Do you think that you're actually re-wiring the brain? Do you think you're setting up new wires that wouldn't be there?" Stahl asks.

"I think we certainly are creating new connections in the brain. That's what learning is," Rogers explains.

Asked if she is suggesting that autism can be cured, Rogers says, "We don't know how to touch the biology of autism. But I do think that the behaviors that are associated with autism can be reduced to the point where they're not obvious anymore."

"Now, you can’t make that promise to everybody, can you?" Stahl asks.

"No, you sure can’t. There’s a huge range of severity in autism. There’s a huge range of reactions to treatments," Rogers acknowledges.

Christian is now able to talk with his mother Jennifer, and even a stranger like Stahl, in multiple word sentences.

Valerie Arias often wonders what her 13-year-old son Teddy’s life would be like if his autism had been treated earlier.

"When Teddy was about six months old, I had him in his car seat, and he just kept flailing his arm over his head," she remembers. "My mother looked at him and she was like, 'Val, I think Teddy has autism.' At six months old, my mother told me that my son had autism. And I said, 'No, he doesn't. There's nothing wrong with my baby.'"

"I was very angry at my mother," she adds. "I didn’t speak to her probably for about a year."

What her mother saw was that Teddy never babbled as a baby—he just screamed and grew increasingly violent.

Valerie may have been in denial, but even doctors didn’t diagnose Teddy's autism until he was four years old.

By that time, Michael, who is now nine, had been born. In all, she and her husband Aaron have four children, including Paige, 14, and one-year-old Haydn.

Right after Haydn was born, Valerie heard about a study at the M.I.N.D. Institute on early detection of autism. It was focusing on so-called "baby sibs," children like Haydn with an older autistic sibling. So she signed him up.

"Did you know at that point that autism did run in families, does run in families?" Stahl asks.

"I knew that the chances of having another child with autism were greater," Valerie tells Stahl. "But, I figured since Michael didn't have it that everything was okay."
When psychologist Sally Ozonoff, vice chairman of research at the M.I.N.D. Institute, started the study three years ago, she was hoping to drastically lower the age of diagnosis.

She says she is aiming for a diagnosis age of 12 months. Ozonoff is tracking 200 babies from birth, like Gabe, a normal 12-month-old, being tested for his reactions to a new toy.

"He's very interested in it. And he communicates that to her with that great look, big eyebrows raising, smile. And then he asks for it without language—he’s 'Ah, I want that,'" Ozonoff observes.

This behavior, Ozonoff says, is typical of a healthy one-year-old.

But when a boy named Jacob is shown the same toy, he stares at it in silence, never reaching for it, never looking up at the examiner.

"There's no communication at all with the woman," Stahl remarks.

"That’s right. It's as if she isn't there. Like she’s an object-handing machine," Ozonoff says.

Jacob was later diagnosed with autism.

Ozonoff also uses high tech methods, like eye tracking. A normal baby looks right in mom’s eyes when she talks to him. But children who are autistic avoid eye contact, looking more at the mouth.

Like most autism researchers, Ozonoff believes children are born with the disorder. She went into her study convinced she would spot the symptoms as early as six months.

But so far, researchers have not been able to see the symptoms at such an early age.

Diagnosing one year olds has proved just as perplexing. Repetitive behavior, like the way Jacob plays with a lid for example, looks like a clear symptom.

"All he's doing is the picking up and watching it wobble, over and over again," Ozonoff observes.

But Ozonoff has found that not all one year olds who do this end up with autism. Her "most reliable" test so far is surprisingly simple.

"Starting about six months maybe even a bit earlier, if you say a child's name, they quickly turn and look at you. And you’ll see this with Gabe," Ozonoff explains. "Say his name, his head whips around…makes eye contact and smiles."

When the same experiment was done with Jacob, the result was different.

"The experimenter's gonna walk behind him. Call his name three times at normal volume," Ozonoff explains.

Jacob didn't respond to his name.

But even with this test, only half the children who fail it end up having autism. Haydn was six months old when he was first evaluated and, to Valerie's relief, he tested on par with children his age.

On one of her visits last year, Ozonoff gave Valerie a copy of her book on Asperger’s syndrome, a high-functioning form of autism.

"So I was reading this book. And through the whole book I just cried because I felt like I was reading this book about Michael," Valerie remembers.

Michael is her nine-year-old. Through years of speech and occupational therapy, no one had ever suggested that his problems, including his struggle to make and keep friends, could be Asperger's, until Valerie began asking questions.

"So now you're basically told you have two sons with autism," Stahl remarks.

Valerie admits she was reeling. "I was. You feel like you should, you should have pulled your genes out of the gene pool a little sooner you know, at that point," she says.

And there was still the question of Haydn: his 12-month visit a half-year later was distressing. He wasn’t smiling anymore and he seemed to be regressing into his own world. And then, he stopped responding to his name.

"I knew my son wasn’t hearing me. Everyone around me was saying, 'Oh, he’s just stubborn. He doesn’t want to listen to you.' But I knew that wasn’t it," Valerie recalls. She says she knew it wasn't a hearing issue.

Despite Haydn's symptoms, Ozonoff felt it was still too early to tell.

"I would hate to cause the pain…and anguish of having another child diagnosed on the spectrum and then be completely wrong," she explains.
More and more parents are worried about the chances of having an autistic child, with some autism groups saying there's an "epidemic," claiming a 60-fold increase since the 1970s.

Dr. Stephen Goodman, an epidemiologist at Johns Hopkins University in Baltimore, has reviewed autism statistics for the past 30 years. He says, "The explosive increase that has been claimed is almost certainly not true."

"The numbers, if they're rising, are not rising very quickly, if it's going up at all," he says.

There’s no question more children are being diagnosed with autism than ever before. But Goodman, other respected epidemiologists and autism researchers says that’s because of something that happened in 1994, when the definition of autism was greatly widened. Since then, Asperger’s syndrome and other brain disorders that were not included before have become part of the autism spectrum. On top of that, Goodman says there are no reliable numbers from the past to support claims of an exponential rise.

"Have you ever seen a 60-fold increase in any disease?" Stahl asks Goodman.

"Not that didn't have a recognizable agent, like an infectious disease…like AIDS," Goodman says.

Asked if there could be a hidden source, that has yet to be identified, Goodman tells Stahl, "Many people have looked very hard, and they haven't found one."

One hypothesis has been that the mercury in childhood vaccines causes autism, but Goodman himself served on a national medical panel that found no evidence of that, though more research is being done.

For researchers, like the M.I.N.D. Institute’s Sally Rogers, autism remains a daunting adversary.

Despite Christian's gains from early treatment, children with more severe forms of the disorder often don’t make the same kinds of strides.

And Sally Ozonoff is not yet able to identify definitive, unmistakable early symptoms, although she still has 18 months to go in her study.

When Valerie brought her son Haydn back for another exam at age 14 months, Dr. Ozonoff and Stahl watched through a one-way mirror. After testing normal at six months, and showing symptoms at 12 months, Haydn had changed again.

He was making more eye contact and interacting with the examiner and he was laughing.

"This is very reassuring," says Ozonoff.

But not entirely: it took three tries to get Haydn to respond to his name. And he became fixated on a lid, the kind of repetitive behavior that sets off alarm bells in Ozonoff.

With such a mixed picture, Ozonoff told Valerie it was too soon to call it.

"There are some encouraging signs, but there are some mildly concerning signs and what we really want to do is join with you to keep monitoring him as closely as we can," Ozonoff says.

Asked how she is feeling, Valerie tells Stahl, "Well, I'm still leaning for optimism because, you know, he's such a good boy. He's a good kid."

Valerie had hoped to know by now if she has a third son with autism. But Dr. Ozonoff says she probably won’t be able to tell her until Haydn turns two next October.

My reaction in the next post.

Posted by Cassie at 10:26 AM | TrackBack

Room Nana & Other Stuff

Schools reopened for the first time since our ice storm of a couple of days ago. Tomas's class was supposed to have a Valentine's Day party Wednesday. I volunteered to be the room "nana" and was planning to bring in paper products and goodies for the parties. I wondered if the party would still go on and in elementary school, kids still come first! We all had a great time!

Of course, Tomas had a total meltdown. I wasn't too surprised having been through the preschool years 3 times already but Heidi (who didn't have any class and wanted to come along) was shocked. At first, T was very delighted to see us but his mood began to go south when he realized we weren't going home. Setting up for the party totally threw him. He didn't want to sit down at the table with everyone and Heidi was whispering, "What's wrong with him? Why is he in such a bad mood?" I said it's because his routine is different: we are there, they aren't doing what they usually do, and he can't handle it all. Heidi worried that somehow she'd set the little guy off but all the teachers reassured her that this is what kids do under these circumstances and it's perfectly normal.

Tomas didn't want to do the craft, either, and threw the picture frame on the floor. We spent about 10 minutes trying to get him to pick it up but he steadfastly refused. He wanted me to pick him up and hold him and I kept saying I would after he picked up the frame. Then I felt him falling asleep and scooped him up. It's okay, said the teacher. He didn't have a nap before and was tuckered out.

I learned that this the teacher's first job and that is cool. She is very motivated and has lots of good ideas to stimulate the kids.

Tomas is going through some other changes which are kinda normal but yet not. What I mean is, he wants to dress himself independently and I remember my kids' early attempts. The difference is that T will get upset about something and we don't always know what it is. Then he refuses to let anyone put a new diaper on him or he refuses to wear pants or a shirt ... Trial and error, I figure out that there are three different patterns on the diapers and he prefers one over the other two. He wants pants that snap and zip, not track pants or pants with elastic waistbands. Shirts cannot have buttons down the front or turtle necks.

The communication issue makes it very difficult. I didn't envy Linda the last couple of days. Since school was closed, it didn't matter how long it took for T to get dressed but boy! It sure was frustrating! The socks have to be just so on his feet, have to match, and cannot be colored. The velcro straps on his shoes have to be aligned just so.

As I watch all this happen or experience it for myself, I wonder to myself how much of this is typical 3 year old stuff and how much of it is PDD-related?

I'm really glad I posted about that useless book I read because I got a comment from someone with another title to try:
Pervasive Developmental Disorder: An Altered Perspective by Barbara Quinn and Anthony Malone. This is the next book I'm going to read.

Late Talking Preschool Children

One reason it's taking me so long to read All Quiet on the Western Front is because I've been reading relevant non-fiction at the same time.

I ordered Late Talking Preschool Children from Amazon because I wanted more information about PDD and how to deal with it. I was hoping I'd get some good information from this book. It certainly was expensive enough, almost $30.00. What I got was a cheaply bound thing similar to what you might get at a conference or something. As if that wasn't annoying enough, more than half the book was devoted to teaching reading readiness. If I'd known that was going to be the bulk of the book, I would have skipped on buying it.

Here are a couple of lines from the opening chapter:

Children who don't seem ready to talk when their peers talk are often a challenge.

No! Ya think?

It is our experience that these children have very worried parents.

And worried grandparents--but there's good reason to be worrying, right? So far I'm learning nothing here.

Finally, something new:

Most of the late talking children we see have a characteristic in common. It is our experience that the late talking or PDD children...are risk avoidant. They fail on purpose, even when it is apparent they can do the challenges presented to them...

I remember thinking that some of the tasks Tomas was given to do during his psychological evaluations should have been easy because I'd seen him do them before. Yet he not only refused to try, he wouldn't even look at whatever it was. The book says labels like PD, autistic, and retarded are applied "when the child in a new situation (the testing situation) refused to do much of anything, pretending to be totally inept."

Interesting.

There was a good suggestion for how to deal with a risk avoidant child. The author recommended that the child be given 9 tasks he or she can succeed at for every challenging one. That makes sense--if the child can complete a task easily then he or she is more willing to take on more challenges. This short chapter was followed by a huge chapter about flash cards and reading readiness.

At the very end, there was a redeeming chapter that provided some more insight into what Tomas might be thinking or feeling. For example, the author described children who have a hard time separating from their parents--i.e. to go to school. She gave an analogy that made plenty of sense to me:

Imagine how easy it would be for you to attend an obligatory cocktail party (or more exactly, months of cocktail parties) where no one but one friend was speaking the language you speak, and then your friend decided to leave. You would not want your friend to leave. This may help you to empathize with the young child who cannot unscramble the words of all the unfamiliar people...

A new situation would mean something like--a new place, new people, and demands for new behaviors. The author recommends that a child be exposed to not more than two of the 3 situations. How to do that? Well, in Tomas's case, we visited his class before he started school and met his teacher and classmates. Before he rode the bus for the first time, he met the driver. Yes, he still had meltdowns afterwards but I sort of suspect if he'd had more opportunities to visit and maybe a trial run on the bus with his mom or me present, it would have gone a little easier for him.

So the book wasn't a total loss. But there have to be much better ones out there so I'll keep looking.

First ride on the school bus!

Today was another special morning for Tomas! Yesterday he met his school bus driver and we talked about how he'd start going to and from school on the bus. He seemed really excited about it yesterday.

This morning, right on time, here comes the bus.

Tomas was totally delighted. I started taking pictures.

Linda was working a later shift today and so she was able to walk T to the bus. It worked out great because this way I could take pictures!

That came to an end when T realized he was actually supposed to get on the bus today. "Uh uh," he said. I helped Linda get Tomas buckled into his seat. He was NOT a happy little guy anymore but I'm happy to say that his bus driver called and said as soon as we were out of sight, he was fine. Also, his teacher called and let Linda know that he was all smiles when he got off the bus. Whew!!!!!

All Those Tests & Procedures...

When the team came from the early intervention program, they guessed that one reason Tomas wasn't talking was because he'd had so many ear infections he probably hadn't heard speech normally in a long time. That seemed plausible and that's what I suspected at first. I also thought that all the trauma of his early months might be having an affect on him.

I don't want to get into issues that will cause more hard feelings so I'm going to leave out the whys of some stuff and just say that T didn't get to his post-op appointment when it was originally scheduled. TB and I made an appointment with the surgeon in August. Poor Tomas--as soon as we got in the door, he put his hands over his ears and was very anxious. I can understand why! Lots of times he'd go to the doctor with an ear infection and he'd be in pain so that couldn't be fun! Also, his eardrum ruptured in May because of an infection and the doctor at the ER had to cauterize it--that must have been an awful experience too.

Happily, the surgeon looked at Tomas's ears and said they were fine, the tubes were still in place and there was no fluid. When we explained that Tomas wasn't talking, he thought it would be best to test the little guy's hearing. We scheduled another appointment but it didn't work out. Tomas didn't want to have anything to do with the booth and hadn't begun pointing to body parts (like eyes, ears, nose, mouth) yet and so the doctor said we'd have to take him to a pediatric audiologist.

TB and I took him twice. The first time, the audiologist was able to determine through a tympanic test that everything seemed to be working in the outer ear and we were happy to hear that. When we went into the booth, though, Tomas became very anxious. He cried and fought to get out, calming down when the audiologist brought in toys. The thing was, the little guy put on his blinders again and wouldn't respond to sounds. He'd look around sometimes when the audiologist talked to him. Then he began to hide his face. The audiologist suggested we wait 2 weeks and try again. Sometimes, he explained, the child's anxiety level goes down when he knows what to expect and then they're more successful...

Except that they weren't. If anything, the audiologist got less information from Tomas than before. His gut feeling, he told us, is that Tomas could hear but he couldn't document that based on the inconsistent responses. What's next? I asked. The audiologist said the only thing left would be an automatic brain stem response. Tomas would have to be anesthesized, there would be an IV involved...and I just shuddered. No way, I thought. I was convinced that Tomas could hear, too, but I didn't think he should be subjected to trauma like that.

After that second test, I called the early intervention program back and told the director what happened. I expressed my worry that Tomas had some autistic characteristics. She was a little taken aback by that but she said it was possible and the next step should be to have him evaluated by a pediatric psychologist or neurologist. She gave me a list of names and numbers.

Every single hospital program I called had a long waiting list for an initial appointment. The shortest was 7 months and the longest 18. I couldn't believe it! I called the audiologist and he gave me the name of a psychologist who'd been affiliated with Children's Hospital in Philadelphia (CHOP) but was now in private practive. Ah, much better luck there! I got an appointment for November. The one down side was that the practice did not accept any insurance. We'd have to pay $1200 in cash up front and hope to be reimbursed later. Linda had just started a new job and couldn't take time off and so Heidi and I drove T to Pennsylvania for the appointment.

Wow, was that ever an experience! Tomas was a happy little guy on the trip, had no problem going into the office and began playing with toys. The psychologist, a very kind and knowledgeable woman, talked to me for about a half hour and then I brought Tomas in. He carried in a little playhouse and readily sat down at the little table across from the doctor. He even smiled at her and made eye contact. Things went well until she took the house away and put the first test task (a picture book) on the table. He had a total meltdown and threw the book across the room. I got him calmed down and he did come back to the table but he absolutely refused to do any language tasks. Anytime the psychologist showed him a picture or tried to use the flip book, he pitched a gigantic fit! Puzzles were a different matter. He loves puzzles and did them quite readily. He even strung beads on a string, something I'd not seen him try before.

The psychologist said to me, I don't think he's autistic. He makes good eye contact, interacts with us, and seeks out our approval for tasks completed. Her theory was that something was wrong with his hearing. I told her about the failed audiological exams and she strongly urged me to get him scheduled for that automatic brain stem response. She didn't feel comfortable making a diagnosis until she knew the results of that test because the services he qualified for would be approached in such a different manner if he was hard of hearing. I asked, what if his hearing is normal? She said she didn't think that would be the case but if so, T's delays might be emotionally based.

We got an appointment for this ABR test at CHOP for the day before Thanksgiving! That was a total nightmare. This time, Linda took the day off to come with us because the procedure was so much more complicated and involved anesthesia. You would think that being a hospital specifically for children would mean that the place would be warm, friendly and comforting. It was, sort of, except from the child-friendly waiting area we had to go to 3 different areas for one test after the other. Tomas was tired and frustratred by the time we were led back to the outpatient surgical unit. We were assigned a stark, cold room. Although Tomas was given a sedative to help calm him, when the folks came in to hook up the IV and administer the anesthesia, he began to fight like a small tiger. With six people holding him down, it took 3 big doses of anesthesia to get him under completely.

The audiologist came in after he'd fallen asleep and did the test. His hearing is perfectly fine and in the normal range.

Afterwards, the staff seemed in a hurry to get us out of there. As heavily doped up as Tomas was, they wanted him waking up after an hour--and they didn't want to take out the IV. Well, the little guy sat up abruptly, didn't recognize Heidi or me (Linda had gone out for a smoke, the first time she'd left the room since the ordeal began) and began trying to tear the IV out of his hand.

Clearly, Tomas wasn't able to walk and whenever Linda tried to carry him, he'd begin fighting and thrashing. A nurse said, this is normal, it's the anesthesia wearing off. She wanted to show Linda how to restrain Tomas and carry him out--but we thought it would be better if Tomas rested longer. I guess the insurance company must have a limit or something on how long you can stay in the room because the nurses were just determined we should go.

Tomas screamed for 20 minutes and then fell back asleep. It was one of the worst experiences I've had. The only good to come out of it was that we knew for sure that Tomas's hearing was fine.

But now what?

The school district preschool team came to the house to evaluate Tomas the end of November. I gave their psychologist a copy of the doctor's report (from PA) and she took it. Still, they tried to evaluate Tomas on the same things...and had the same results. He'd do the puzzles and toss the ball but anytime they tried to get him to get him to do a language task he'd pitch a fit. That team told me candidly that they felt T was, indeed, on the autistic spectrum and that he'd be placed in a preschool classroom with other children who have pervasive developmental disorder.

Ah well. I'd been suspecting so for a long time.

There was one more test after that, in January, and this time with a pediatrician specializing in developmental disorders and other special needs. He barely looked at Tomas, just going with the answers he got from parents Linda and Kennan. He diagnosed Tomas with pervasive developmental disorder not otherwise specified.

More later.

Since June...Part II

Once Linda gave her permission, a team from the early childhood intervention program at the hospital was able to come out and evaluate Tomas. They made observations mostly although they did ask Tomas to do some tasks. I noticed that he mostly ignored them at first. It was as if he put on blinders and turned his hearing off. At that point, it was hard to know if he was having residual hearing problems or not. When he did engage, he was so sweet and made lots of eye contact.

The team found Tomas eligible for services based on the fact that he wasn’t speaking. They also found delays in socialization skills and cognitive skills, especially since he was stuck on one type of play. He could use any toy to play this way, blocks, cars, it didn’t matter. What he would do is slide two objects open and closed and have a third pass between. After a while, TB figured out that he was mimicking automatic doors, like those at the grocery store. Those doors were a big issue—we’d go shopping and the little guy would get “stuck” at those doors. He wouldn’t want to leave them and he’d pitch a screaming tantrum when we had to move him. He would also actively resist us, TB and me, whenever we'd try to change the game. I'd build with blocks and he would scream and knock them down. He didn't want to build, he wanted to play the doors game.

The team explained what would happen next. The family would meet with members of the early intervention program and we'd come up with an individualized family service plan (IFSP). I was an interpreter in a school district for many years and so I knew this was the precursor to the individualized education plan (IEP) used for school age children to determine their needs, how to meet them, and to set goals so they could achieve. The nice thing about the infant-3 program was that the providers would come right to our house. Also the providers would be able to work with all of us and teach us how to best help Tomas. We also learned that as soon as Tomas turned 3, he'd no longer be eligible but could get into a preschool program with the school district. At the meeting, the team decided to send a teacher for Tomas twice a week and a speech therapist once every 2 weeks.

I would have preferred he get more services but hey, we'd take what we could get.

The team evaluators came in August, the meeting was in September, and services began in October.

Meanwhile, I'd done some reading up on autism and although I didn't think that was what was happening with Tomas, I had a nagging feeling that was part of it. I was signing with him but he wasn't responding. When we'd watch a TV program together, it would be "Go Diego Go" or "Dora the Explorer" or "Blue's Clues" which is interactive. And I would participate. Sometimes he didn't mind but other times he'd yell at me.

Our grandchildren from Tennessee came to visit and we were taking them places. Right away I could see that Tomas disliked Chuck E. Cheese and all the noise and commotion. He refused to try any of the rides and the only thing he seemed to enjoy was a slide in the infant section. If we went to the playground, Tomas didn't want to go on any of the equipment. He had a sort of parade route he wanted you to follow. He didn't want to get in the kiddie pool with his cousins and didn't want to go into the sandbox. He did enjoy playing with his cousin Taylor--our granddaughter is the closest to him in age.

What a dramatic improvement once the teacher began coming to the house! Nancy is a retired preschool teacher and she started out coming once a week while the program tried to find a second teacher. Nancy was scheduled the rest of the time with other kids but when December rolled around and there still wasn't a second teacher, I asked if she could come twice a week once one of her other kids "aged out". At first Tomas ignored Nancy but after a couple of sessions, he began to warm up to her.

By the time the holidays rolled around, Tomas was pointing at objects, was moving to music, somewhat interacting with “Go, Diego, Go” (the shows have the child get up and point at objects on the TV, etc) and was making some sounds that could be "yeah" and "hey". I was doing a lot of the modeling for that behavior because Linda and TB were at work and the kids were in school. Tomas would copy things if I did them first and he’d make eye contact and clap for himself. Nancy was very happy with all that and so were we!

Next: More tests for Tomas to determine a more accurate diagnosis

Since June...Part 1

Now I finally feel I can talk about what’s been going on all these months.

When we first began to visit with Tomas again over a year ago, we were kind of concerned that he wasn’t talking. He also was very reserved with us but I thought that was from the long separation. After all, he’d been through a lot emotionally and although I was hurt that he didn’t seem to remember our closeness from before I tried to understand.

The talking thing…that’s something else. Tomas had frequent ear infections during the time he lived away from us. Linda told us the doctor said his ears were filled with fluid and that’s why he couldn’t talk…because he couldn’t hear. Well, I have a nephew who had a lot of ear infections like that as a toddler and it’s true the hearing becomes impaired. Sean had tubes placed into his ears—what about tubes for Tomas? I guess they couldn’t do that until the infections cleared up and this just dragged on and on and on throughout the winter and into the spring.

Now T was over 2 years old and could not communicate with us. He would look at what he wanted and we’d try and guess what it was. If we didn’t guess right he’d become frustrated and start to tantrum. He would have some mighty tantrums, too, throwing himself against the wall and onto the floor. Now, I would have thought he would try to gesture or point to what he wanted or grab our hands but he seemed to avoid any other attempt to communicate with him. Meantime we were hearing some horror stories about what might be happening at the dad’s house and we were very worried about that.

By the time Linda brought T to live with us, he’d had tubes placed into his ears and the fluid drained away. Still…no words forthcoming, no attempts to communicate and although he could be very loving and affectionate he was also very withdrawn, rigid in his play and routines, and seemingly distrustful. I began to think, if it’s not his hearing that is keeping him from speaking obviously there’s something else going on. Could it be autism?

During this time, there was no contact with the dad. I wanted to call him but was nervous about it because of the way Linda had described him…that he hated us and wanted nothing to do with us. She said he never called her to see how his son was doing and so I wondered if he cared what was going on? Still, I often wondered what he thought about his son’s reluctance to communicate.

Over the summer, as Tomas became more used to us he became more outwardly friendly although he was still very reserved and sometimes unemotional. It was like he was wearing blinders sometimes or deaf/blind to what was going on. Communication wasn’t much better but the intensity of the tantrums decreased...

I contacted early childhood intervention programs and most were unable to act without Linda calling to make the initial request. However, I did finally get in touch with a program at a hospital that could take intake information from me. They still needed Linda to call to send an evaluation team so when she got home from work I gave her the phone and the phone number and she called.

Busy Day For Tomas!

Today was a very special day for Tomas! Not only was it his birthday, it was also his very first day of preschool! He and I went earlier in the week for a visit and stayed all morning, meeting the teacher, assistant teachers and other classmates. There are five other little ones in the class, a very nice size! Of course, we had to make a new photo album for the big event! Just click on the picture for the rest of the pix!

Linda took the day off for this special occasion and so I stayed home. The teacher told me on the phone that T had a great day today. The only down side was the reason the teacher called...Linda was a half hour late picking the little guy up! I have NO idea what that was all about.

It was such a busy day, the little guy opened just a couple of presents from Linda. He loves the play food set! He went to his daddy's for more presents and ice cream cake and we'll probably be celebrating all weekend because he hasn't opened all his stuff yet!

The Explosive Child

I bought the book to better understand how to deal with some of Little T's explosions. He has come such a long way since he first came to live with us but every once in a while, we'll still have a major meltdown. When I get a chance I'll set down and do an update on what's going on with our Tomas.

Anyway, the basic premise and theme throughout this book is: "Children do well if theycan"

In other words,when some kids have these tremendous tantrums it's not because they are trying to get attention or are spoiled or are obstinante or rebellious or possessed or what have you. It's because they are not able to comply for some reason. What reason could that be?

Maybe the brain hasn't developed pathways for executive skills--like being able to transition from one activity to another smoothly or to organize thoughts and actions.

Maybe there's a language processing delay.

Maybe they are developmentally delayed in the ability to control their feelings--especially to frustrations.

Maybe they are not able to "see" gray areas yet and everything is black or white.

Maybe social skills are delayed.

The idea is for the parents to act like the child's frontal lobe (what a concept!) to teach them how to develop and use pathways that will help them solve problems and communicate without exploding.

Does it sound like giving in to the child? It's not, not if you read the book all the way through.

It makes perfect sense for a parent to try and stay calm and teach a child how to work through an issue. The plan -- it's actually called "Plan B" -- involves 3 steps. All 3 steps have to be completed and in order for it to be Plan B. Everything is explained and there are lots of examples and sample conversations using Plan B.

I found it to be very informative and I think it could be an effective tool dealing with these kids.