Sunday, May 14, 2006
Sunday, March 19, 2006
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
Monday, March 06, 2006
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.
Sunday, February 26, 2006
Good News on Academics
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:
- 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.
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
- General Non-compliance.
- Targeting the defenseless.
- Not responding consistently to positive or negative reinforcement.
- 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.
Tuesday, February 21, 2006
Red Words, Green Words
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."
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.
[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
[Consequence:] Stay in classroom.
James has dozed off already, but he enjoyed reading this. I guess this still counts as reading or story time.
Friday, February 10, 2006
Sunday, February 05, 2006
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.
James Made It
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."
Wednesday, December 07, 2005
Autism and Drugs
...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
Serotonin-Selective Re-uptake Inhibitors (SSRI), or “Antidepressants”
Stimulants (ADHD drugs)
Nutrients affecting methylation of Serotonin
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.
Tryptophan, 5-HTP and Serotonin
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.
Autism and SSRIs
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.
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:
Zeldox (ziprasidone), and
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.
SRIs (Selective Seratonin Reuptake Inhibitors)/Antidepressants,
And Stimulant Use in Autism:
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.
Overview of antidepressants, anti-anxiety drugs, antispasmodic medications, stimulants, neuroleptics, and other medications used in the treatment of PDD:
Overview of clinical trails for drugs used in the treatment of autism:
Temple Grandin on Prozac and Zoloft (SRIs/Antidepressants) and drugs in general:
Specific drug mongraphs
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.
Monday, October 31, 2005
Dream of Hopes Ranch
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.
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.
Monday, October 17, 2005
Pimp My Ride
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.