James Short: Living with Autism

Skate Dog

2006-05-14T11:46:00.000-07:00

Skate Dog is one of James's favorites:

http://media.ebaumsworld.com/skatedog.wmv
http://www.dumb.com/skatedog.html
http://www.extremefunnyhumor.com/mov_skatedog.htm

Pretend Play

2006-03-19T07:39:00.000-08:00

James has been doing more pretend play recently.

For example, James has a Scooby-doo ghost catcher set, complete with Shaggy, Scooby, and ghost action figures. Yesterday he jabbed quite a bit about who was driving the Mystery Mobile. He gets a little scared when I pretend that a ghost is coming. When I ask him to catch the ghost, he tells me to do it and stops playing until I've locked the ghosts up.

He usually likes to pretend that one of the action figures is driving. He still prefers to manipulate the objects and gives narratives about what they are doing rather than speaking for them or pretending to be one of them. They often go to places he has been, sometimes taking actual routes that he has memorized. Still, he talks about what they are doing in a creative context, which is good. He also made the keen observation that "It's [Shaggy and Scooby are] like Wallace and Grommit."

Unfortunately, this morning I found that he had torn the doors off the van. We have boxes full of broken toy cars. I've shown him how to use transparent tape, glue, and construction paper to symbolically "fix" or customize his toy vehicles, so it's not a total loss.

I Got Smacked

2006-03-19T07:28:00.000-08:00

This page received a nice 4 out of 5 smacks from I Talk Too Much.

The Dentist

2006-03-06T15:35:00.000-08:00

Back in November I took James to the dentist because his first two permanent teeth were coming in behind his baby teeth, like a shark's.

Our first trip to the dentist did not work out. When the assistant came up, she took James by the hand, and as I followed, she said parents were not allowed to go in back. James said "Dad!" and looked at me nervously. I had a funny feeling about the whole thing, so we didn't go through with it. I think I bent their clipboard.

I found a more reasonable pediatric dentist who was willing to work with special needs. I marked the appointment date on the calendar, but James crossed it out, hoping that I would forget. I didn't. James was calm when we walked into the dentist's office. The assistant that walked us into the room was polite and even a bit attractive, but there was something unsettling about her. She sounded as if her mouth was wired partially shut, and her teeth were long and shiny. Too big, too porcelain, too surreal. I think I stared.

The dentist was friendly enough. He asked James to sit on the chair, but James refused. I had to pick him up and hold him down for about 30 seconds while the dentist looked him over. James cried, screamed, and squirmed the entire time. The dentist calmly remarked on how perfect and clean the rest of James's teeth were. (James refuses to brush.) He said that the teeth didn't look like they were going anywhere and needed to be removed. Since strapping him down for a bit just to extract two teeth might be traumatic for James, he did give me the option to have his baby teeth removed in a hospital while he was asleep. Although the procedure was more costly and would require a two month wait, I opted to do that instead.

While waiting for the next appointment I decided to check James's teeth again as he slept. After messing around a bit, I realized that his teeth were loose in a certain direction. James didn't stay still enough for the dentist to realize this. Over the next couple of weeks I wiggled his teeth at night, being careful to not wake him. Eventually his teeth fell out at school. No one noticed. When I asked James if he had swallowed them, he touched his mouth and said "no" nervously, so I'm not sure if he knows when they fell out.

Glad that's over. Two down, 28 to 32 left to go.

Good News on Academics

2006-02-26T18:24:00.000-08:00

Parent/teacher conferences were last week. The good news is that when James's teachers were able to get him to cooperate on a few standardized tests, he scored higher than expected. Bad news is that they still spend more time with his behavior than any other kid in the classroom: he is the highest functioning kid in class but is also the most challenging because of his behavior. It has also been difficult for them to find coherent patterns in his behavior, so each day is a new surprise, and on some days, maybe every fifteen minutes.

James is currently in a "functional life skills unit," but his teachers have determined that it is below his ability level. They feel that a Social Behavioral Skills (SBS) program may be more appropriate for James than the SCORES (Social Communications something... something...) program that he is currently under. He also needs more time with inclusion in the general education environment. Next week or so I'll be visiting a new school that has an SBS program with inclusion support.

This is good news. Although James has his quirks, his teachers love working with him. He'll be missed. He has a good sense of humor and can be very endearing and affectionate at times, even though he scares some of the other kids. James's age-level is first grade, but he's repeating some kindergarten material because of non-participation and behavior/social problems last year. His curriculum will be readjusted to fit his needs. If they could only just get him to comply.

Here are my notes from the meeting:

---

Brigance Tests

Word recognition:
2nd grade level. 9/10 words correct, 10th word correct on 2nd try (playing games).
3rd grade level: didn't want to participate.
Oral:
A, lower first [grade level], no errors
A, upper first [grade level], didn't want to participate
Addition: up to 18 without grouping, but with manipulatives.
Subtraction: some with help, beginning skills.

A small digression: The math skills are recent. I remember chuckling at James's daily notes the first few weeks they tried to get him to do math. There were a lot of code "1"s annotated on his daily schedule for that block, which according to the legend, stands for "ran away." The grumpy professor I had for the first semester of Discrete Mathematics was so dry and uninspiring that I wanted to run away. James's teachers are much nicer, but I can still empathize with his situation.

Behaviors of Concern

Agression/Threatening.
General Non-compliance.
Targeting the defenseless.
Not responding consistently to positive or negative reinforcement.

Positive Behavior

Works well in general education with assistance.
Can express needs and wants functionally.
Enjoys jokes and humor.
Is flexible with transition and change.

Some Observations on Behavior

Always weighing his options, talks about them out loud, planning ahead, over and over.
His autistic "obsession" seems to be with rewards & consequences rather than merely objects. Sometimes deliberate sabotage behavior.
No magic bullet, varies day-to-day, somewhat unpredictable.
He may be using rewards/consequences to establish normalcy.

Academic Areas of Concern

Generalization of academic skills.
Pragmatic use of social language.
Lack of group-work skills due to time in general ed.
(James may require extra time to complete a task because of his distractability, problems focusing on activities he doesn't like, etc.)

Positive Academic Skills

Math and calendar skills above grade level.

Another digression: James has the calendar memorized months in advance and can tell you what day of the week a special or important date will fall on. He has a desktop calendar at home that he writes in. When I got him the calendar for this year he would not let go of it. That night he went to bed with it. On several occasions he has written down the opening dates of kid movies based on previews at the theater or TV spots--this even includes long-range previews from last year. While riding in the car he blabs on and on about movie dates and special events in his own version of broken English. On several occasions he has marked out things he doesn't like, including his last trip to the dentist. (The whole dentist experience was odd so I may post about that later.)

Three months ago James finally showed interest in clocks. He already knows that at 60 minutes a new hour will begin. He is also able to associate time with posted restaurant or shop hours. Prior to his sudden interest in the clock, much of my efforts to get him interested in it failed; he picked up these skills suddenly on his own, his way, by osmosis.
Reading and comprehension near grade level.
Outstanding decoding abilities.
Good receptive and expressive vocabulary.

What teachers have tried

Ignoring behaviors.
Time-out routines.
Taking away reinforces.
Adding more frequent reinforcers (surprise box at noon, treasure chest at end of day). They had to add a noon reward because James would realize when he wouldn't have enough points for the rest of the day and just give up early--smart kid.
SCORES classroom visitation.
Increasing positive interactions and student selected activities/choices.

What the teachers would like to try

Additional time in general education.
Looking into a Social Behavioral Skills (SBS) program for James.

---

Anyway, good news.

Red Words, Green Words

2006-02-21T17:23:00.000-08:00

A couple of weeks ago James's teachers came up with Red Word and Green Word lists at school to help him with his "contracts" or token economy system. He is pretty good about communicating his intentions; they aren't merely threats, it's him talking aloud and planning out his actions. Rather than just blurting out inappropriate threats when he is frustrated or doesn't get his way, the teachers hope that they can get him to choose more appropriate behaviors.

Most autistic kids tend to fixate on certain things. Although James likes things like toy cars, it almost seems as if one of his stronger fixations involve the social system of rewards, consequences (punishment), and to a lesser extent, people's reactions. It isn't just negative attention-seeking. He tends to announce his behavior and mulls over what he is going to do, over and over again, and sometimes you can hear him talking himself in and out of behavior he knows to be inappropriate. This leads to inconsistent, unpredictable, and sometimes manipulative behavior. The following is a transcript of James's Red Word/Green Word List--a simple Social Story. He understands it quite well and is even saying them out loud as I type this. He also finds great humor in teasing that he'll "use red words in school."

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Red Word List for James

James should not use Red Words at school. If James uses Red Words, there are consequences like no WOW [recess], no lunch for with friends, thinking time [time out], more independent work and no special toys, cars, or puzzles.

Hitting
Breaking
Throwing
Touching
Hurting
Coughing
Kicking
Spitting
Biting
Pushing
Tearing
Cutting

[Consequence:] Go to Mr B's room.

---

Green Word List for James

Teachers and students are happy when James uses Green Words instead of Red Words. If James uses Green Words only, there are special prizes like surprise box, treasure chest, special treats, cars, puzzles, and extra computer time.

Be nice to friends
Say hi to friends
I need a break
I feel mad
I don't like it
Please stop

[Consequence:] Stay in classroom.

---

James has dozed off already, but he enjoyed reading this. I guess this still counts as reading or story time.

Tantrum Video

2006-02-10T07:17:00.000-08:00

When a coworker asked how bad my son's tantrums could possibly be, I showed him this video. It is practically a play-by-play reenactment.

http://www.heferito.com/coolcommercials-zazoo.asp
http://www.visit4info.com/details.cfm?adid=9115
http://www.youtube.com/results?search=Zazoo

Car Troubles

2006-02-05T08:35:00.000-08:00

During our road trip over the holidays James was usually happy. For some reason I ended up taking pictures of when he was not. Here James is crying because I wouldn't buy a crappy, "pre-broken" $30 toy car at a truck stop. Notice that he is holding another $30 toy car I purchased just three hours earlier at another gas station. It lasted less than a week.

A few hours later I had to pull over because James stuck the end of his sweatpant's drawstring through the spokes of his toy car's wheel and couldn't get it out. He began screaming, "Help! Help!"

A minute later, after Dad fixes the problem, he is happy again and laughs at his wardrobe malfunction.

Car Photography

2006-02-05T07:47:00.000-08:00

I made the mistake of leaving my digital camera in the back seat with James. Each time I caught him playing with it I made him put it back into the case. When I finally looked at the images I realized he took a lot more pictures than I had thought, across several days. I was surprised that more than half of them came out--the camera's autofocusing features are a bit tricky. I was impressed.

James Made It

2006-02-05T07:07:00.000-08:00

James plays differently than a typical kid his age. He does some pretend play now, but it is mostly scene or object-oriented rather than role-playing. He will follow some simple role-playing scenarios when lead, but would rather talk about or talk to a character rather than talking for it. On the other hand, he does use his imagination for construction and visual arts. He likes to make things. Here are a couple of quick things he's done recently, spontaneously without prompting by anyone:

One day James told me that we needed to go upstairs to room 104. When I saw what he had done, James said that he "made a hotel house."

Last year at a previous day care, James put "Men" and "Women" signs on the restrooms (they were previously unlabeled and unisex). The other kids didn't like it when he insisted that they follow his signs.

This is one of a half dozen or so configurations James has come up with for playing his favorite video games, "Midnight Club 3: Dub Edition" and "Street Racing Syndicate". Since he insists on stopping at all the red lights, he hasn't yet won many street races.

In an earlier, more elaborate setup, he fabricated a trunk using an ice chest. But the dog was missing. When I asked James where the dog was, he said, "in the trunk."

Autism and Drugs

2005-12-07T12:24:00.000-08:00

This kind:

...not this kind:
Like many parents, I would rather not use drugs on my child unless absolutely necessary. On the other hand, I believe they might be useful with some children in augmenting behavioral intervention programs, sensory integration techniques, and occupational or physical therapy. Temple Grandin, a high-functioning autistic herself, has some great advice on the use of drugs for the treatment of autism: http://www.autism.org/temple/meds.html

During James’s first visit with the neurologist, back when he was four, we discussed ADHD medication. James’s neurologist mentioned that a lot of his PDD patients that had speech delay also had ADHD characteristics; on the other hand, he thought James was too young, and I also wanted to give James a break and wait. (See the blog on “Dr. Kendal Stewart” for our experience with Valtrex and Strattera.)

Last December, when he was five, James began to exhibit more aggressive behavior. Today James is in a “Functional Life Skills” program, and we are still working on his behavior issues. Although he can academically do most of the work assigned to him, he is impulsive, “testy” or defiant, often refuses to work, needs constant redirection, and hits other children on a regular basis—behaviors that are keeping him out of the mainstream classroom.

Because I was hesitant to jump right into ADHD medications, I went to a nutritional oncologist who recommended nutritional supplements often used for increasing serotonin levels. This did not work so well. I stopped his supplementation after five months.

A few months ago James’s neurologist and I discussed using a norepinephrine antagonist, Catapres (Clonidine), as a safer, milder alterative to ADHD medication; something to take the edge off of his tantrums and aggressive behaviors. After trying Clonidine for a month, we met again and looked at James’s aggressive behavior and obsessive-compulsive tendencies.

The clonidine seemed to help a little bit. We also discussed two other stronger classes of drugs, neuroleptics for aggression and antidepressants for obsessive-compulsive tendencies. For the time being we’ll stick with Catapres because of the lower risk.

I’ll go into a bit more details on these five classes of drugs. Here they are, as grouped by lower-risk, higher risk:

Lower Risk :
Nutrients affecting Methylation, Serotonin Production
Norepinephrine Antagonist

Higher Risk:
Neuroleptics
Serotonin-Selective Re-uptake Inhibitors (SSRI), or “Antidepressants”
Stimulants (ADHD drugs)

Nutrients affecting methylation of Serotonin
TMG (tri-methyl-glycine)
DMG (di-methyl-glycine)
5-HTP (5-hydroxy-tryptophan),
SAMe (S-adenosylmethionine)

Serotonin (5-Hydroxytryptamine, 5-HT) is an important neurotransmitter that affects mood, hunger and sleep. TMG breaks down into DMG and SAMe. TMG, DMG, 5-HTP, and SAMe are nutritional supplements (therefore not regulated by the FDA) commonly used to enhance the methalation of serotonin.

Companies that sell 5-HTP claim that it “passes into the brain immediately” or “easily crosses the blood-brain barrier”, while tryptophan “must compete with other protiens [sic; amino acids] to be transported across the blood-brain barrier.” But there seems to be challenges to this claim (see http://www.ceri.com/rev-sero.htm), which makes me skeptical.

Nevertheless, after meeting with a nutritional oncologist for a couple of hours, I put James on daily regimen of TMG, 5-HTP, and “pharmaceutical grade” lecithin supplements for over five months. (Extremely low risk.) Unfortunately, I observed no significant changes. When I discussed this with our neurologist, his opinion was that 5-HTP and tryptophan simply does not work because increasing serotonin levels isn’t enough for many people. Instead, establishing the correct ratio of serotonin at the brain synapses is what is important.

Although I’m sure many people have benefited from 5-HTP, DMG, TMG, and SAMe (I’ve talked to some that swear by it), James does not seem to fall into this category.

TMG, DMG
http://www.autism.org/dmg.html

5-HTP
http://www.vanderbilt.edu/AnS/psychology/health_psychology/5htp_myth.htm

SAMe
http://www.biopsychiatry.com/sameart.html

Tryptophan, 5-HTP and Serotonin
http://www.ceri.com/rev-sero.htm

James does take two types of liquid vitamins which certainly don't hurt:
Liquid Health™ Children's Multiple and
Liquid Health™ Children's Attention

Serotonin-Selective Re-uptake Inhibitors (SSRI), or “Antidepressants”
In contrast to 5-HTP and SAMe, which work by increasing the overall amount of serotonin in the body, Serotonin-Selective Re-uptake Inhibitors (SSRI), or “antidepressants,” such as Prozac and Zoloft, work by changing serotonin ratios within the brain. Only one or two percent of the serotonin in the body is in the brain, and that amount is independently synthesized from tryptophan transported across the blood-brain barrier. SSRIs raise serotonin levels within the brain by inhibiting the reuptake (recycling) of serotonin.

SSRIs are commonly prescribed as a treatment for Obsessive/Compulsive Disorder (OCD). Many PDD and autistic children exhibit obsessive-compulsive behaviors, such as impulsiveness, repetitive preoccupations, and perseveration. James’s speech and physical/occupational therapists have noted that his obsessive/compulsive tendencies are strong, even when compared to other autistic and ADHD children they have encountered in their practice.

Unfortunately, the side effects associated with Prozac and Zoloft can be rather severe. Because of James’s age and other factors, I’m not going to try SSRIs at this point but have not ruled them out for future evaluation.

Neurotransmitter Primer
http://www.benbest.com/science/anatmind/anatmd10.html

Autism and SSRIs
http://www.childadvocate.net/autism_and_SSRI.htm

Stimulants
According to James’s neurologist, a lot of kids that are autistic/PDD with speech delay tend to exhibit ADHD characteristics. Many of these children are on ADHD drugs (stimulants) such as Ritalin and Adderall.

Although ADHD children are hyperactive, stimulants at the dosages used for ADHD can appear to calm many hyperactive children. Although how stimulants exactly do this still isn’t exactly known, many studies and a lot of research indicates that stimulants work primarily by increasing dopamine levels in the brain. Dopamine helps regulate inhibitions but also promotes feelings of well-being and satisfaction. Stimulants also enhance levels of the neurotransmitters serotonin and noradrenaline (norepinepherine), which can help regulate impulsiveness. Stimulants have been also shown to increase the blood flow in the brain and neural activity in the frontal lobes.

I have known several children and adults who have taken these drugs, and their experience varies. For example, James’s uncle said it would always have him feeling “sick” or “not right,” so he would spit the pills out; on the other hand, my nine-year-old neighbor is doing great on it. Some of these variances may be due to quality of dosing and appropriate “matching” of the drug to the individual: you’ve got to remember, except for Strattera, most ADHD drugs are stimulants. Cocaine and methamphetamines are stimulants and share some of the same pharmacological effects as ADHD medication; then again, so does caffeine.

I’ve also noticed that some of the people who complain about ADHD drugs the most are parents or kids who felt coerced somehow by school districts. Schools can no longer do this. ADHD medication isn't for everyone and should always be used in conjunction with therapy, not as a substitute for it. I haven’t had this type of experience with the school so far; they’ve been helpful in providing me with observational data and seem to respect the parents’ choices. James’s neurologist did warn me that ADHD drugs are often hit-or-miss, and it may take a few tries to find one that works at the proper dosage. We still don’t know if ADHD medication would help James or not.

Even some ADHD kids don’t respond well to any ADHD stimulant; those kids may have to try the family of tricyclic antidepressants (TCA’s) instead. (Antidepressants will be discussed later in this posting—specifically, the family of atypical antidepressants.) Another alternative to stimulants is Strattera (atomoxetine): unlike stimulants, which works primarily by increasing dopamine levels, Strattera works by increases norepinephrine levels in the brain. While under the care of Dr. Kendal Stewart, James tried Strattera for two weeks because of a study linking Strattera with improved speech. It had no effect. When I mentioned this to my neurologist, he urged me to stop for three reasons: James was only four at the time, the study wasn’t compelling enough, and Strattera was very new. Several months later the liver damage lawsuits came to light, so we won’t be trying Strattera again.

The last thing I want to do is turn James into a zombie or stress his body out at a young age. I have mixed feelings about going down the ADHD drug route, and many people have strong feelings both ways. I do not believe it is necessary for us at this time, but I have not ruled it out for future use. As James matures and progresses in school I’ll keep re-evaluating, and do a bit more research in this area. The day may come when we will have to try ADHD medication, but only for the right reasons.

http://www.pbs.org/wgbh/pages/frontline/shows/medicating/drugs/
http://www.pbs.org/wgbh/pages/frontline/shows/medicating/adhd/
http://www.pbs.org/wgbh/pages/frontline/shows/medicating/backlash/
http://kidshealth.org/parent/emotions/behavior/adhd.html
http://www.kidsmentalhealth.org/Stimulants.html
http://www.wildestcolts.com/mentalhealth/stimulants.html
http://www.ablechild.org/
http://groups.msn.com/psychbusters/addadhd.msnw

Neuroleptics
Atypical Neuroleptics (a.k.a. Atypical Antipsychotics) target dopamine and serotonin receptors, which control behavioral problems such as self-injury, aggression, hyperactivity, and tantrums. Common side effects include weight gain. Rare but serious side effects include neuroleptic malignant syndrome (very rare but serious neuro-muscular rigidity symptoms, sometimes life-threatening) and tardive dyskinesia (motor dysfunctions, such as tongue movements, facial tics).

Of the following Atypical Neuroelptics:
Risperdal (risperidone),
Seroquel (quetiapine),
Zyprexa (olanzapine),
Zeldox (ziprasidone), and
Clozaril (clozapine),

James’s neurologist recommended that if we were to try a neuroleptic, consider Seroquel because of reduced side effects. James does exhibit some aggressive behavior at school, but a lot of it can still be controlled simply through redirection and discipline. The milder Clonidine (a norepinephrine antagonist, not a neuroleptic) that James is taking seems to be helping, so I’m going to wait before going to something stronger—again, the side-effects are a big concern for me. I’m also still trying to figure out if his aggression is more related to his obsessive-compulsive traits, environment, or other social factors.

Antipscyhotics/Neuroleptics,
SRIs (Selective Seratonin Reuptake Inhibitors)/Antidepressants,
And Stimulant Use in Autism:
http://www.autismlink.com/info/autism_medications.php

Seroquel (quetiapine):
http://www.seroquel.com/

Norepinephrine Antagonist
Since norepinephrine agonists such as amphetamines or methylphenidate have been shown to worsen autistic behaviors, one rationale for using a norepinephrine antagonist such as Catapres (clonidine hydrochloride USP) is that it could reduce autistic behaviors. Several double-blinded placebo-controlled studies in the 1990s appear to confirm this.

Catapres (clonidine) is commonly used for reducing hypertension and is an extremely safe drug, easy on the liver and kidneys. Clonidine basically has a mild calming effect, and has been demonstrated to be effective also as a sleeping agent (mild sedative). The effects are short (four to five hours), so it is typically dosed early in the morning and at noon.

Although clonidine is not as strong as stimulants (ADHD medication), neuroleptics (antipsychotics), or antidepressants, the negative side effects are generally mild and low risk. (They are “easy on the organs.”) It has to be taken at reduced dosages for a couple of weeks at the beginning and end of treatment; otherwise, blood pressure will drop at the beginning or rise when abruptly stopped. It also has to be taken regularly for similar reasons. Blood pressure and heart rate should be monitored regularly, especially during the two weeks or so it takes to come on and off the drug. Other than low blood pressure, the main side effects are fatigue and sleepiness. Since the body can get used to it, its effectiveness may be reduced over time.

James has been on clonidine for over a month now (started on October 30th). Although it hasn’t given anyone a “Wow!” effect, I’ve seen a few mild positive changes: he sleeps longer at night, and goes to bed earlier; he is a little bit easier to redirect; his tantrums are shorter, milder. The change is subtle but noticeable also by his teachers, therapists, and myself. Although feedback from his therapists has been positive, his teacher at school (where he spends the most time) did say that although the intensity of his behaviors has decreased slightly, and his tantrums are milder, he is misbehaving more often. He is also coming up with progressively worse negative behaviors, such as throwing objects at the window (used to throw at wall), picking up computers (rather than just pushing them).

Oh well, medication isn’t going to solve everything.

For now, I’m going to stick with it a little longer. Even a 10% improvement is worth it, since the risks with this drug are low. Also I’ve noticed that around this time of the year—when it gets darker and the temperature drops—he can work himself into these giddy, manic fits where he won’t stay still, can’t be held still, gets into everything, and won’t make eye contact even if you’re right up in his face. It’s similar to but not quite a “glazed” look. His speech therapist summed it up rather well: “it’s as if he isn’t with us today.” Two weeks or so before we started clonidine he had a few episodes like this, and I thought, “Oh no, not again.” But this hasn’t happened since. I’m not sure if it is the clonidine, or if it’s just on his own. I’ll probably stick with it at least a few more months, until it gets warmer, with longer days (early Spring). Last Winter was especially bad.

http://www.psyweb.com/Drughtm/jsp/clonid.jsp
http://www.vh.org/adult/provider/psychiatry/CPS/41.html
http://www.pslgroup.com/dg/221262.htm
http://www.remedyfind.com/rem.asp?ID=5435
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1548248&dopt=Abstract

http://www.rxlist.com/cgi/generic/clonidin.htm
http://www.rxlist.com/cgi/generic/clonidin_cp.htm
http://www.rxlist.com/cgi/generic/clonidin_ids.htm
http://www.rxlist.com/cgi/generic/clonidin_ad.htm
http://www.rxlist.com/cgi/generic/clonidin_wcp.htm
http://www.rxlist.com/cgi/generic/clonidin_od.htm
http://www.rxlist.com/cgi/generic/clonidin_pi.htm

Other Links:

Overview of antidepressants, anti-anxiety drugs, antispasmodic medications, stimulants, neuroleptics, and other medications used in the treatment of PDD:
http://www.patientcenters.com/autism/news/meds.html

Overview of clinical trails for drugs used in the treatment of autism:
http://www.vh.org/adult/provider/psychiatry/CPS/41.html

Temple Grandin on Prozac and Zoloft (SRIs/Antidepressants) and drugs in general:
http://www.autism.org/temple/meds.html

Specific drug mongraphs
http://www.healing-arts.org/children/ADHD/medications.htm
http://www.rxlist.com/

DISCLAIMER: I am a NOT a physician and do not work in any medical profession. I’m just a parent; a layman. You should talk to as many qualified doctors as you can about drug options and decide based on your own child’s needs.

Dream of Hopes Ranch

2005-10-31T19:04:00.000-08:00

Last week we started yet another after school program.

After we were kicked out of The Children's Courtyard, I found a home daycare with a lady that worked with both typical and special needs children. (As a backup plan I had a list of daycares and home after-school programs from http://www.familyconnectionsonline.org)

Unfortunately, the after school program at this older lady's home lasted about six weeks and ended up with me writing a check for $200 worth of sheet rock damage. James did fine most of the time because they were on trips most afternoons, but there was about 45 minutes to an hour near the end of the day where he had to be indoors while parents came and picked up their kids. Although the lady that ran the home day care did the best she could (she had a physical disability), James was just too hard to handle at times. I had a feeling there would be problems. As usual, James focused on smaller kids. The first time I took James there he immediately ran to the three toddlers and yelled out "babies!" in glee. He proceeded to squeeze each of them by the wrists, and laughed while making eye contact with each one of them. Looked like something out of National Geographic.

Because of my experience with the Children's Courtyard, I made sure that both parties knew what we were dealing with. Communication was a lot more honest and direct: we talked about a backup plan just in case things did not work out. When things inevitably did not work out, this time I left on relatively good terms and I was referred to Laura Stock, who runs the "Dream of Hopes Ranch," another nearby home day care. Laura and her family works with special needs children and adults, and she even helps them train and compete in the Special Olympics. James went bowling with them last week and was very happy. All of us, including the previous daycare, feel that he's better off here for now. Although James is high functioning and is capable of learning from and interacting with typical children, being in a special needs environment that can accommodate him is important at this stage. He needs physical activity to keep busy, and he needs to be socially accepted, not shunned. So far they love him--he's the youngest kid there, and it seems to be a family environment.

We'll see how it goes, but so far I have a good feeling about the place. This Saturday they invited us to their Halloween party, and I got a chance to see the special needs children and adults James will be with. Everyone is accepting over there. They've dealt with far more challenging situations than James. At this stage of his life, I think James will benefit from this environment.

http://www.dreamofhopesranch.org

Halloween

2005-10-31T18:12:00.000-08:00

James enjoyed Halloween tonight. When we were going door-to-door he yelled "trick or treat!" in an appropriately gleeful tone. He said "Thank you" most of the time. We went through the routine pretty much like everyone else, except for a few minor things. James kept touching all the cars and tried to open their doors. He also got a little too close to people and went straight for the candy instead of holding out his bag, but he adjusted well after a few verbal instructions.

When we got back to the house he set up a little chair outside of the garage and decided it was his job to hand out the candy. He kept laughing and yelled "trick or treat!" to all the visitors, which of course, everyone thought was cute. Overall, he was very happy and well-behaved.

Earlier he said he wanted to go to a haunted house, but I wasn't so sure--he's only used to the kiddie ones at school or therapy. When I showed him the web site for a haunted house show in town he said, "too scary." It'll be a while for him.

Pimp My Ride

2005-10-17T20:12:00.000-07:00

This summer I accidentally backed over James's bike. He didn't miss it at the time because he was preoccupied with his 3-wheeler (Razor Scream Machine; looks like a sturdy Big-Wheel). But after he built up enough confidence with that, I felt it was time for him to try a bike again.

I got him a cool-looking 18" bike, complete with blinking green lights on the valve stem covers. The training wheels that originally came with his bike were sturdier than most, but still not enough for him to ride with confidence. After his training wheels were starting to bend over to one side, he fell back to his Scream Machine. I looked around for "heavy duty" training wheels, but almost everything I found turned out be junk. After some looking, I found the answer: Fat Wheels (http://www.fatwheels.com). They understand special needs and even have adult-sized models (up to 300 pounds).

Delivery was relatively quick. James was excited to see the box because he watched me order it on the Internet. When we opened it we were not disappointed. I almost wept when I saw those thick brackets. Finally, good old-fashioned American steel. I ordered the model with inflatable 12.5" wheels, good for up to 150 lbs. In about five minutes I had the old training wheels off and the new ones on. I gave James about 1/4" to 1/2" clearance under the wheels, and for some reason, he tended to stay more in the center, off the training wheels at times (better-weighted balance I suppose).

This weekend we took his new ride out at for a test drive. Although the helmet bothered James and it took a lot of effort to keep him on one side of the trail, he did enjoy himself. I find after a lot of "heavy work" James seems to be calmer, less impulsive throughout the day.

Now I want a bike.

A Token Economy

2005-10-12T21:07:00.000-07:00

James uses a simple token-economy or point system during school to help stay on track and manage his behavior. It functions as a daily report from his teachers to me and supplements his daily log from school. James has to earn so many points in a day in order to get a "treasure chest" reward, usually a junk toy. The other day I went to Michael's (a craft store chain) and bought a lot of brightly-colored, flat wooden trinkets, each about the size of a quarter. I don't know what they are really for, but for James, it's like money. (He especially likes the little yellow school buses.) I also got him some unpainted wooden shapes and unpainted letter trains which happen to also fits with his wooden train set. I've noticed that as a reward his teacher occasionally gives him a little writing booklet to write the days of the week in.

The system seems to be working. We go over the sheet at home every night, and even on days where he doesn't earn the treasure chest prize, he says, "try again tomorrow."

In the first example, James was so upset about getting no points for speech that he hand-drew a smiley face himself. He's tried other tricks, such as changing an 11 to 14. But at least he's motivated. The next example shows how the system was later adjusted so that James could understand the consequences for hitting or pushing.

All of James's teachers contribute to the report (they stamp their parts in front of him), so it gives James the sense that it's an important process that everyone follows. It's a good way to get James to talk about his day, and it gives him a sense of structure.

Camp

2005-09-18T07:49:00.000-07:00

Last weekend (10-11 September), James and I went to Camp Connection, a two-day camp for children with Autistic Spectrum Disorders and their parents. It's an annual camp, their third year. It was great. James enjoyed it, and so did I. He did get into a few things (such as microphones and locks), and I did have to chase him down a few times, but other than that, he was very well-behaved and happy. The volunteers kept on saying how much they fell in love with James. Although almost seven, he's still cute and affectionate.

The children would go off in groups for a couple hours at a time, with free time for the parents. They had an open sign-up schedule for fishing and horseback riding for parents, but activities for the children were more structured, with plenty of volunteers. I wasn't feeling very sociable at first, so I went hiking alone, enjoying the scenery. I eventually went off the map and found a watering hole with a small waterfall. After that experience I felt better and joined in with everyone else for the rest of the weekend. I met with a few parents and had an opportunity to observe how other autistic children behaved.

James is still talking about the hay ride, "puppy dog" moon walk, puzzle room, the camp fire, horses, "cabin 5," and "Texas Farm Trailers." In the evening we went on a hay ride to the camp fire. During the camp fire songs James kept yelling out "wheels on the bus," so at the end everyone finally sang his favorite song. James wouldn't eat the S'mores but he enjoyed watching the marshmallows burn. He also quickly figured out how to operate the microphone, and went around clicking everyone's flashlight.

James also loved the cabins. At lunch he told everyone he was in cabin five. Before lights out he would run over to the neighbors cabin because they had a lot of kids there. Earlier that day, the lady next door warned me her son would do exactly the same thing. It was nice to be in an environment where everyone was so understanding.

On the last day it rained in the afternoon, so they brought the petting zoo under the covered pavilion. James was scared of most of the farm animals, such as chicks, chickens, piglets, goats, and lambs, but he wasn't afraid of the calf and the pony, probably because they took him on pony rides earlier. He also liked the rabbits, but that's because he already got used to them in day care and preschool.

It was good to see James interacting with other people, adults and children. One older boy (probably with Aspberger's), wanted to sit with James during lunch. Experiences like this are great for him developmentally (James doesn't forget anything). Today James was jumping on his bed, talking, making plans about how his cousins (out-of-state) were going on a camping trip with him. Good idea. We should do that one day.

Daycare SUCKS

2005-08-27T18:10:00.000-07:00

We're getting kicked out of the new day care in two weeks. Came as a total shock, because every day I would talk to the staff and they would smile and brag about what a good day he had. Then last night the director (I think it was the director) called me on the phone and said they couldn't handle him. She said it in a polictially correct way that just made it sound worse, but I didn't get mad; however, I did push for more specifics. She was still vague, but I believe the problem is that they can't deal with his perseveration and stubborness. The staff is spending too much time trying to redirect him. On the other hand, he hasn't even thrown a tantrum there or hit anyone.

With all the positive B.S. the staff was feeding me every evening, I was actually considering keeping him there after December. I can't believe I trusted these people. Too cowardly to tell me the truth about my disabled son, and now it's to the curb for us. I knew it was too good to be true. It's not worth fighting to stay there, but James loves that damn place. I don't know how he is going to handle this. I can already hear him crying.

We've already been through this last month when he had to leave Open Door Preschool. I'm tired of being asked to leave. Anyway, my current strategy is to find an FDC home for afternoon care or get a baby sitter for the weekends/afternoons, just enough to get 40 hours a week. My problem is only for four months. I just have to make it until December, and then James will be in the special needs program at McBeth. In the mean time I've made a dozen phone calls and e-mails, so I'll probably be able to duct-tape something together.

I'll have to give up on mainstreaming in the short term. Some of the older kids at Children's Courtyard don't like him. I've overheard the things they say about him. He'll never quite fit in. Makes me wonder what those kids will grow up to be. Probably bigots and jerks, but they'll probably learn how to smile while doing it.

Settling In

2005-08-22T19:17:00.000-07:00

Life Skills Communication Log from School:

18 Aug, Thursday
James had a good day. He worked well on academics and helped make a cinnamon toast.

19 Aug, Friday
James is becoming more affectionate with staff. He gives his "hi S's" and partial hugs! He had 5 instances of threatening, 4 instances of attempting to hit and two instances of throwing rocks in class. While we are trying to figure out James' behaviors, we do appreciate James for who he is.

22 Aug, Monday (Today)
James had a good day! He did not have any instances of aggression! James had 4 property destruction and 3 verbal threats. James did a lot of work today--he completed Math and English tasks, also cooking (Jello) and social play.

James's "threats" are typically negative phrases he perseverates on, usually when he is bored, frustrated, tired, or just wants to test. (Examples: "hit," "hit friends," "hit friends at school," "break it," and "squeeze kids.") These utterances can usually be redirected.

Overall, James is settling in at school, doing better. He is an affectionate kid once you get to know him. He talks to me about kids from school that the likes, albeit in in fragments without context or introduction. It gives me an opportunity to ask questions and draw out the answers. He makes detailed observations and knows a lot more than he can express--I'm encouraged every time I hear him try to reword a phrase or splice a new one together.

He's still doing fine at day care. No major incidences, even better behaved there than at school. Some of the older kids do get annoyed with him because he'll step over their blocks or knock down their setups, but it isn't deliberate. James just ignores them when they complain. They say he does play with some of the kids there. When I pick him up in the evenings he seems happy and relaxed.

As Ice Cube once said, "Today I didn't even have to use my A.K. I got to say it was a good day."

Old Behaviors At New School

2005-08-17T20:26:00.000-07:00

Tonight I sent off an e-mail to James's teachers:

[Headers removed for privacy/spam/consent purposes]

According to James's Lifeskills logs for the last two days, it seems that James is having behavior issues similar to last Spring.

Tuesday: James participated in story time, calendar, math activities and social play. James did have some behaviors today including taking another students supplies (numerous times), throwing a chair, throwing puzzles off his desk, tearing paper off the wall, and many instances of not following directions.

Wednesday: James has several instances of aggression today. He hit and kicked a female student this morning. He also hit and pushed down another female student in the afternoon. He had numerous instances of destroying property, not following directions, and leaving his assigned area.... At the end of the day when told his computer was over, he pushed a student hard--she hit the wall.

Of course, I am concerned about this behavior, and we need to get this under control while he is still little. I'd like to mention a few things that might help:

Over the Summer James has calmed down a lot, and I don't remember getting notes about James hitting other children or throwing chairs, but ESY was shorter and probably less challenging. James's behavior in his old day care over the Summer was good (just a handful of minor incidences). He's doing well in his new day care even without a special needs staff, but it's a more relaxed (non-classroom) environment, and most of the kids are bigger than him. A lot of James's behavior problems seem strongly correlated with specific types of peers and his environment. The more James doesn't get his way or loses control of his environment, the more aggressive he becomes towards those peers. Of course, James can't be allowed to coast or vegetate in school, so I'm hoping the Life Skills setting will get him used to working in more challenging environments.

James knows better than to bother most bigger kids, kids that would hit back, "tell on him," or otherwise stand up to him. He tends to act out his frustrations on kids that seem annoyed by him, don't respond to his social initiations, ignore him, or show fear towards him. On one occasion a more aggressive kid hit James when he got too close, so James hit the smallest "whipping boy" he could find in retaliation.

The first and also one of only a few times I have personally observed James hitting another child was when we visited my father last December. He and his wife are foster parents for two severely retarded nine-year old boys. The environment was new to James, so he spent the first three hours getting into everything and slamming and closing doors. James got along fine with Terrell, the boy who could mumble, point, and follow him. After a few hours James began circling, sneaking up on, and slapping the other boy, Jeffery. Jeffery was larger but lower-functioning, and James realized that Jeffery could not react or turn around quickly enough to stop him. After a while it became a challenging game and James continued to tease him. The next day when James started to take Jeffery's French fries at lunch, Jeffery almost bit James's hand. (Jeffery will eat almost everthing, including paper and clothes if you don't watch out.) After that James was cautious around Jeffery and quit teasing him. While we were there James also grew fascinated with my father's Miniature Pincher, and tried to squeeze and "pinch" the dog. (At least James is capable of enjoying a pun.) Eventually the dog bit him--not hard, but it was enough to keep James away. For the rest of our visit, James screamed and ran away from the little dog every time he came around.

A couple of weeks ago my brother and his family came in out-of-state for an unexpected stay for just a few days. James interacted well with his smaller but "normal" five-year-old female cousin (he's only seen her twice), and he was actually better behaved than her (she threw more tantrums). When he tried to squeeze her arm once she stood up to him (snapped back) and he immediately dropped it. She had passed his test, earned his respect. He also spent a lot of time playing with his fourteen-month old cousin, Johnathan. James enjoyed walking up to Johnathan so that Johnathan could push and hit James in the face (I didn't encourage it but James still found opportunities to do this). It became a game. James would laugh and say, "Hit Johnathan," but James never hit him. When James was in day care at Open Door Preschool this Summer they had infants, and he was gentle around the babies.

Anyway, I wanted to give you an idea of my observations on James's social interaction with other children. At the beginning of this week I wrote up some notes for James's new day care that might also help his school as well:

[See the notes for Monday, August 15, 2005: A New Day Care]

Back to School

2005-08-16T21:06:00.000-07:00

Today was James's first day at his new school, Pleasant Hill Elementary. James is in three Special Education programs that are designed to more efficiently meet his Individualized Education Plan (IEP): the Functional Life Skills class room, SCORES/Autism support, and mainstream support for the regular kindergarten classroom. For now, most of James's day will be spent in the Lifeskills classroom to work on behavior issues and get him used to following instructions. At first, he'll be spending an hour or less every day in a mainstreamed classroom for socialization. As James's tolerance to the regular classroom improves, the idea is to increase his time mainstreamed in kindergarten. There will be an aide there to help him.

The SCORES program is designed to support the mainstreaming of autistic children. The program at Pleasant Hill Elementary has a full-time autism specialist dedicated to the school. He has a special room for autistic children. The autism specialist seems to be a likeable guy that can relate to children well, and the room is nice with computers and fun stuff, nothing like a detention area. The children can temporarily go to the room if they get overloaded or need a break from their mainstream environment--that way, they can still work on their curriculum. They also use the room if they need additional time to reinforce something they learned in a mainstream class, or (for older kids), have a study-hall kind of environment with an autism specialist there to help. Our goal is to get James a bit more "table ready" with Lifeskills, but then reduce the time in Lifeskills as needed while increasing the time in the mainstream classroom by using the SCORES resources.

Last Spring when James was still in PPCD/EC (Early Childhood Education for Special Education students) they didn't have this program for him. James got bored with the Special Education classroom and seemed ready to mainstream. The mainstreaming worked great for the first two or three months, but eventually his perseveration, obsessive-compulsiveness, destructive behavior, and outbursts got in the way. He also began hitting kids. Earlier I had problems with getting resources to support the type of Least Restrictive Environment (LRE) outlined in James's IEP. (I had to write a letter to the AISD Assistant Director of Special Education explaining that the school district was in violation of James's IEP--I might talk about that in another posting.) But even with a teaching assistant, James's behavior got so bad that I had to leave work to pick him up. At school he was throwing chairs, tearing up things, dropping down to the floor in tantrums, and regularly hitting, squeezing, and "gleefully" pinching kids--specific kids. Near the end of the Spring semester he had to wear house shoes in class because he got into the habit of kicking other children. Eventually the school would call me to pick him up on a regular basis, and I would immediate drive him to the day care early (instead of going home) just so I could meet deadlines at work (my employer was understanding, but still, it made things difficult for everyone, not just me). I began taking James on 15-minute walks in the playground right before school to do some "heavy work" (climbing, hopping, monkey bars, etc.) It seemed to help with his morning hours at school, but a lot of problems still continued later on in the day.

What was odd was that James was almost always well-behaved at day care. My theory is that (1) they didn't push him as hard in day care (a more relaxing environment), (2) day care was a change to his current environment, (3) the day care had a better staff-to-child ratio, and (4) the day care had more kids that would interact with him and had less kids that would respond to him negatively ("negative" from James's perspective means to ignore him, act afraid, or act annoyed). James knew better than to bother bigger kids or kids that would hit back or otherwise stand up to him. I noticed similar behavior in his treatment of cats and dogs when he was younger. Dogs and cats are simple: they either run away or they bite back. People, even kids, are more complicated, especially if you're autistic and trying to figure out how to interact with them.

Anyway, that was James was last Spring. James has calmed down somewhat over the Summer. Yesterday he did great in day care, even though he was there for the entire day. He also spent a couple of hours in day care today and did well again, despite the stress from the long bus ride; however, the teacher's log for his first day of school read as follows:

James participated in story time, calendar, math activities and social play. James did have some behaviors today including taking another students supplies (numerous times), throwing a chair, throwing puzzles off his desk, tearing paper off the wall, and many instances of not following directions.

Oh well, at least the Lifeskills program is designed to work on these behaviors, and I've heard that they've dealt with worse.

I Hate School Buses

2005-08-16T18:48:00.000-07:00

James loves school buses. I frickin' hate them.

Today was the first day of school. At the end of the day, the bus was over half an hour late reaching James's day care today, and the special instructions I gave them was lost. On the Friday and Monday before school started I called several times, left voice mail at both numbers, and one one occasion managed to talked to one person who "wrote down" my instructions who said he would pass it on to the dispatcher. Every semester they mess up the paperwork, and it gets worse. I ended up calling campus police and they couldn't get to the dispatchers either. I had a long talk with the bus driver when she finally pulled up. They really messed up her paperwork, and none of my messages made it to her. James's estimated 15-minute trip took over 1-1/2 hours. His shirt was wet because he was chewing and sucking on it--that's something he does when he is nervous or bored. Poor kid. (I canceled his therapy sessions for the day because he had enough.) There was another kid still left on the bus that needed to be on the other side of town. Worse yet, the bus driver couldn't get through to the dispatcher the entire time. AISD transportation has serious management problems.

Anyway, I'll sort them out.

A New Day Care

2005-08-15T08:19:00.000-07:00

Today James started a new day care, The Children’s Courtyard. To make a long story short, James is too old to attend Open Door Preschool, and there seems to be gap in Austin for special needs day care for five and six-year olds. We are on a waiting list for McBeth Center at Zilker Park; they take in children age 7 on up. (Later I might put up another post based on my day care search notes.)

Although the Children’s Courtyard is not a special needs school, they seemed more willing to work with him than other schools I called. During our visit last week they went over his school’s IEP and his recent clinical speech evaluation. The facilities were very nice, with many distinct activity rooms—reminded me of a daycare version of Chucky Cheese or Gatti Town. The playgrounds were nice, but James did seem more interested in the brightly colored play area for the younger kids. I mentioned to the “floor teacher” that they may need to lock it to keep him out.

The adult-to-child ratio is around 1-16 (1-20 the first week until they staff up), but they seem to pool resources, and I was told that all their workers either used to be early childhood teachers or at least have a teaching certificate. They use a zone system rather than a fixed schedule. James may not have done well here back when he was four, but I think we have progressed to the point to where he might be able to handle it. James is a lot more flexible than he used to be. This is after school care program anyway, and two or three hours of play time and socialization after school in this environment may be good for him. The day care plans to the more responsible or friendlier children to help him mainstream. I guess we’ll see how it goes. Here is an edited version of the notes I gave to the staff:

---

Social
Playing alone: I’d like to see James play with other children as much as possible. Although looking at a detailed toy and rolling it around may be calming for him, it isn’t good. Any activity that is excessively repetitive and non-social should generally be discouraged. A few puzzles or games by himself on occasion is ok if he uses them appropriately, avoids excessive repetition, and is time-limited.

James tends to do well with older or more responsible children. He does make friends. On the other hand, he sometimes finds kids that he likes to annoy.

Teases other kids by calling them the wrong name. (Becomes a game.)

James likes babies. He has never tried to hit one and tries to be gentle around them, but he sometimes scares them by getting too close and making baby sounds at them.

“Baby sounds”: There were a lot of toddlers and infants at Open Door Preschool. I have noticed that recently James may occasionally make sounds in imitation of certain babies. Although this is a phase that will probably pass, I’ve been trying to discourage this because in public it makes his disability appear worse than it actually is. James needs to be around older children to model appropriate social behavior.

Starting some simple pretend play. For example, likes to line up chairs, make other kids sit in the seats, and pretend to drive the bus. Speech therapist's report gives more details on his play level.

Behavior
May throw tantrums. They aren’t as bad as they used to be and can usually be redirected, but if handled the wrong way or left to grow, they can lead to bigger tantrums (lying on the floor, kicking and screaming). The best way to handle a bad tantrum is to redirect or distract him, change the environment, talk him out of it, etc. He won’t punch and thrash with his hands during a tantrum but will kick with his legs, so keep people and objects away from them.

If another kid hits James, he might throw a tantrum, or he might hit the nearest thing (object or a bystander). Although he may hit back once as a reaction, James has never been in a fight.

May say “Hit” when he is upset, bored, or not getting his way. He usually does not hit anyone when he says this. Can usually redirect this by getting him to express what is bothering him (e.g., “I’m tired.”)

On occasion James has hit or pushed smaller children that seem annoyed by him, ignore him, or otherwise respond negatively to him. (It becomes a game.) If they hit him back or yell at him he usually backs off.

James has gone through a five-month period at school (between December 2004 and April 200 5) where his behavior was difficult to control. Lots of hitting, throwing, tantrums, and testing; however, this only occurred in the PPCD/EC classroom, and even on extremely bad days at school, he was consistently well-behaved in day care. He seems to have calmed down over the summer and did well in both Extended Schoolyear (ESY) at Galindo and day care at Open Door Preschool.

James will do the opposite of what you tell him if he is in a “giddy” negative-attention getting mood.

Has difficulty sharing certain items at times.

Loves using the computer but gets upset if he has to wait or if the computer locks up.

Sensory
Very picky eater. I will provide lunch but also encourage him to eat snacks provided by the daycare.

Obsesses over certain things, such as the color yellow, school buses, toy cars, and doors (tries to close them).

May not respond as well to verbal instruction in a loud environment. Unlike some other autistic children, doesn’t have a break-down or doesn’t seem to directly show signs of over stimulation, but ambient noise does influence his behavior.

James likes to be squeezed. He might squeeze other kids' hands or arms because it feels good. This is usually easily redirected by reminding him that other kids do not like to be squeezed. Have him do some climbing or even give him squeezes (bear hugs). Squeezing him between two bean bags also helps.

Speech
Although James can answer who, when, what, and where questions, on occasion may need prompting for yes/no questions (say “yes or no” or emphasize the “do” part).

If James does not know the answer to a “who,” “what,” or “where” question, he has trouble saying no. (He’ll guess instead.) You may have to ask him, “are you guessing, or do you know?”

James doesn’t yet ask or understand “why” questions. With some prompting he is beginning to make and understand certain simple “x because y” compound sentences.

James doesn’t yet ask or understand “how” questions. He does understand multi-step sequences.

James still has difficulty distinguishing from "me/I" and "you" and often interprets or states the concept backwards, even when relying on imitation or pattern sentences.

James can answer and understand some concrete “when” questions. He knows today, tomorrow, and tonight. He can read a calendar. He understands what a clock is for and can compare a digital clock against something like a store’s hours of operation sign, but doesn’t yet associate events during the day with specific clock times.

James can say certain things with full sentences, so if he is using a lot of fragmented language (especially with requests), ask him to talk using complete sentences. You can also model what he is trying to say with a more complete or more appropriate sentence, and ask him to repeat it. (He usually does not get frustrated with this.)

James understands a lot more than he can verbalize, and he has a good memory. When he was two or three he learned eight colors in a three day period, memorized the alphabet in a few weeks, and memorized all the answers to computer games and electronic toys. In school last year he memorized a wall with a couple dozen Spanish words. James is now sounding out street names on his own, understands a lot of street signs, and has memorized the make and model of most cars on the road, mostly on his own. He also likes to read simple things like Dr. Seuss books, phonics books, road signs, and labels.

2005-08-14T10:09:00.000-07:00

James at the Lady Bird Johnson Wildflower Center, April 14, 2005.

Mercury and Vaccinations

2005-08-14T00:46:00.000-07:00

Contrary to what some people believe, the jury is still out on Thimerosal and vaccinations. This summer I attended an informal chelation seminar. I came in somewhat skeptical. After the meeting had a slightly more positive, yet still somewhat mixed impression about the whole thing. But after coming across this website, it makes me wonder that there might be something to this. It even offers compelling counterpoints to the Denmark MMR study.

http://www.generationrescue.org/
http://www.generationrescue.org/facts.html
http://www.generationrescue.org/mercury_myths.html
http://www.generationrescue.org/what_vaccines.html

Dr. Kendal Stewart

2005-08-13T15:43:00.000-07:00

Several months into James's occupational therapy, around June of 2003, we went to see Dr. Kendal Stewart, an ENT/Neurotologist who provided a somewhat unconventional approach to autism and other sensory processing problems: a six-month regimen of Valtrex, twice a day.

The basic theory behind his treatments is that autism and other related sensory processing disorders are actually auto-immune conditions, or at least caused by them. According to his theory (several other doctors have similar theories related to or based on his), the culprit is one of the various strains of herpes present in the environment. The virus isn't detectable in the blood stream because it hides in the nervous system. Valtrex draws it out so that the immune system can kill it. Naturally, I asked if this was directly measurable, but unfortunately it did not sound that way to me without doing a biopsy of James's brain; on the other hand, Dr. Stewart had a suite of tests. Several of them involved measuring the ear's response to stimuli, the ear itself being something of a "giant nerve" (sorry, my layman's oversimplification of things).

I was skeptical, but kept an open mind. Dr. Stewart was very articulate. Although we spent well over an hour talking and answering my questions (most doctors don't do that), had data suggestion strong correlations, and had what seemed to be a unique system of analyzing this data, there were no formal studies based on things such as double-blind placebo trials. As Dr. Stewart pointed out, "these are children--no wants to be in the control group; their time is limited." I believe Dr. Stewart claimed around five years of success with various patients. As an alternative to classic clinical trials, Dr. Stewart employed a battery of diagnostics to generate what he called "evidence based" analysis. As a software engineer, such an approach seemed familar to me (albeit not as scientifically airtight). But more importantly to any parent, it was explained to me that the dosage and treatment was low-risk. Primum non nocere. ("Do no harm.")

We did six months of the Valtrex treatment, grinding then pulverizing those damn hard, bitter blue pills into his orange juice twice a day, every day, for six months. Nevermind the double-take from the pharmacist when she realized that the prescription was for a four-year old and not me. James's mother was around for the first few months, but when she moved away to California after the divorce, I continued the ritual alone. Near the end James began to resist his drinks, blowing bubbles, throwing and "accidentally" spilling them on the ground out of protest. I don't blame him. Tasted like shit. I added more sugar, thickened the juice, woke him up earlier in the mornings to wait on him to finish--did whatever I could to get him to complete the dreaded routine. I joking asked the nurse if we could just do it as shots or a patch. Then finally, Dr. Stewart said James was ready to end the treatment on October 31st.

Did James improve? Yes. Was it the Valtrex treament? I'm not sure.

During the Valtrex treament, James was attending speech and occupational therapy. He was with other children the first time. Lots of stimuli, lots of things coming at him all at once. Impossible to know what part each piece played. To complicate things, James only participated in one of Dr. Stewart's measurements: responding to whether or not he heard an audible signal. Other tests, including one that involved measuring the ear's physical response to signals, required ear-plug devices that we could not get him to wear.

Some of the things we tried along with the Valtex, such as an HGH patch and Omega-3 oils, seemed low risk. But I had reservations about some of the drugs used in conjunction with the Valtrex, albeit in low dosages. He recommended Straterra, which I dropped after a couple of weeks. (This was before the bad press about the drug. From the beginning our neurologist disagreed with Dr. Stewart's application of the drug, and I didn't notice any positive effects.) I also could not bring myself to using Provigil on a four-year old. Although I never felt like I was being pushed, after James's Valtrex treatment was completed I decided to move on and try a different path. At least for a while.

But I will say this: each time we visited, Dr. Stewart observed James's gait during a running exercise. He made cautious predictions not only about improvements in James's movement, but also mentioned possible changes in James's awareness of the environment. Those observation generally seemed to be coming true. For example, James began to pay more attention to objects on the road while riding in the car, as predicted. Although I could rationalize this out with the fact that James was also going through occupational therapy at the time, I'm not convinced that would be enough to dismiss all of his observations. I certainly don't doubt his intentions.

Was Dr. Stewart right? I don't know, and I may never know. I deeply hope he was, but hopein' ain't believin'. I do know that James is still autistic. There was no "magic bullet" or "moment of awakening" for us. No one ever promised us that. Treatment of autism is in its infancy, and everyone still seems to be trying to figure it out. We are in a gray area, just now making movements out of the dark ages. We have a long way to go, but James is better off than before. I don't regret putting him on Valtrex for six months, because not trying anything after hearing Dr. Stewart's convincing pitch would have been something I would have truly regretted.

Link:

Web site used to be http://www.neca.us/ but it doesn't appear to be maintained any longer. I did find a profile on him at http://www.autismaustin.org/doctors.html

Dr. Kendal Stewart
Neuro-Sensory Center of Austin
6836 BeeCaves Road, Suite 180
Austin, TX, 78746

First Post

2005-08-13T08:57:00.000-07:00

My name is Paul Short, the father of James, who is now 6-1/2 years old. We live in Austin, Texas. I've started this blog for several reasons:

To organize fragmented e-mails, notes, and literature related to James's autism
To share this information with others
To try my hand at blogging

I began having concerns about James's speech delay when he was three, but had no idea it was autism. I was also concerned that "the terrible twos" had slid into becoming "the terrible threes." In January of 2003, shortly before James's fourth birthday, his mother and I decided to divorce. My lawyer filed temporary orders on my behalf and we changed pediatricians in February. Within five minutes of meeting James, the new pediatrician wrote down, "suspect mild PDD". He referred James to a pediatric neurologist. In March the neurologist diagnosed James as having "moderate" Pervasive Development Disorder (PDD), a form of autism. The divorce was finalized in July and James's mother moved to San Diego that September. With his mother gone, the only family James had left in Texas was me.

Although the divorce was traumatic for both of us--much more so for James--it forced me to reprioritize my life and put him first. Our new life began. I dropped down to a 40-hour work week, and drove James to Occupational and Speech Therapy three times a week at From The Heart Therapy Services (FTHTS). I put him in an Early Childhood (EC/PPCD) program at Zilker Elementary. For day care, James started going to Open Door Preschool, a not-for profit school in Austin designed to support up to 25% special needs children mainstreamed with other "normal" children.

With the first month of being exposed to other children and with the Sensory Integration (SI) therapy James received at FTHTS, James began to show some signs of gradual improvement.

Links (somewhat provincial):

Pro Se Litigant Divorce in Texas
http://www.tyla.org/family_law.html
http://www.co.travis.tx.us/records_communication/law_library/forms.asp

'Specially For Children
Pediatric Specialities (including Neurology)
http://www.speciallyforchildren.com/

From The Heart Therapy Services
5524 BEE CAVE RD STE M
AUSTIN, TX 78746
(512) 306-1707

Open Door Preschool
http://www.opendoorpreschool.org/

AISD Special Education
http://www.austinisd.org/academics/specialeduc/coordinators.phtml