Saturday, August 27, 2005

Daycare SUCKS

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.

Monday, August 22, 2005

Settling In

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."

Wednesday, August 17, 2005

Old Behaviors At New School

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]

Tuesday, August 16, 2005

Back to School

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

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.

Monday, August 15, 2005

A New Day Care

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.

Sunday, August 14, 2005


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

Mercury and Vaccinations

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

Saturday, August 13, 2005

Dr. Kendal Stewart

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

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