Mickey's Autism Journal

Mickey now has a second home therapist. I interviewed her early this week and she started today. Mickey's previous therapist will continue working with him four hours per week, and the new home therapist will work with Mickey six hours per week. The first day was uneventful, as she will just be getting to know him over the next several weeks.

The speech therapist wrote some interesting comments into Mickey's journal, claiming that he was saying several words, some spontaneously. We have not seen this at home. The cynical side of me thinks that perhaps she is documenting this so that, when the next IEP arrives, she can state that Mickey has made progress. I hope that I am wrong, of course.

It is true that Mickey is trying very hard to speak. Something seems to have "clicked" and he is getting much better at communicating his needs. He also seems very happy these days. Perhaps the two are connected. Still, I have not heard any spontaneous words, and no words at all with the exception of: bye, dada and apple.

Another new stim has cropped up over the past few weeks - pinching. Mickey has been approaching people (be they family members or complete strangers) and pinching their skin, usually on the hands or feet. It's irritating, sometimes painful, and when he does it to his little sister, she cries.

I call this a stim because he seems to do it because he enjoys the sensation of feeling the skin beneath his nails. This is clearly some sort of sensory issue. I'm not exactly sure how to break this new habit. I have tried my typical "Mickey! No!" in a very stern voice. I have tried showing Mickey how his sister cries after he does it. Still, I don't seem to be getting through. Perhaps, if I can find an object that has the same feeling, that might satisfy the need.

Thanks for the responses to my previous entry. I'm definitely sacrificing family time for money these days, and that's not a good thing. I seem to have signed myself up for more work than I can handle, and I need to find some way to bring things back to normalcy.

Some random notes from the past week follow ...

It occurred to me today that Mickey's recent string of meltdowns have mostly been confined to places that are kept very cool. Supermarkets, for instance, seem to be a major trigger. He has also been waking on the nights that my wife cranks the air conditioner.

I learned last summer that Mickey is, in fact, very sensitive to the temperature when, after waking every night for close to a month, we finally started to put long pants on him to bed and the waking immediately ceased.

Today, while at an indoor farmer's market, I was reminded again when Mickey started to "lose it" when we walked into the meat section (the temperature was very cool). He was fine once we left that section of the market (and was fine the rest of the day).

Mickey likes to have his throat tickled, and since he cannot say it, the most common way for him to express himself is to grab the hands of people and place them on his throat. People from outside the family obviously do not understand (most thing that he is trying to say that his throat is sore). Though he can't manage to say "throat", I did manage to get him to say "open", by keeping my hands closed until he asked for me to open them to tickle his throat. He got it very quickly.

Mickey has become a meat lover. I'm not a very big fan of meat, especially disliking steaks and pork, but I do like to grill. This has worked out quite well, I get to try some recipes on the grill, and Mickey likes to eat grilled meat. :)

Mickey was in a great mood today, in contrast to the past few days. I believe that maybe he had a slight cold - it's difficult to tell. We had a weekend of meltdowns, probably because Mickey was tired (he woke during the night several times Saturday and Sunday night).

Unfortunately, he now has several sores on the top of his feet. We have seen these in the past and scrambled to find him new shoes, believing those to be the culprit. However, during one of Mickey's meltdowns this week, I observed him rubbing his feet against each other in frustration. Though his toe nails are trimmed, it's still enough to rip open cuts on the top of his feet.

I'm not sure how to prevent this (other than to prevent or short circuit the meltdowns), but he has done it often enough that he'll probably have a few scars there.

Mickey's home therapist is still on a leave of absence. As mentioned previously, she is taken the divorce of her parents quite hard and had an emotional breakdown. I don't want to force her back too soon, but Mickey enjoys her company and was making good progress with her. Hopefully she can return soon.

The family had a very pleasant weekend. On Saturday, I took the family to Dutch Wonderland, a childhood theme park in central Pennsylvania.

Mickey went on a half dozen rides and had a wonderful time. Unlike his sister, he is not fond of the more daring rides. What was his favorite ride? I'd say that it was a toss-up between the flume ride and bumper cars (it was Alaina and I against the wife and Mickey - that's one of the benefits of having an even number of children - needless to say we scored some really solid hits, and a few cheap shots too).

On Sunday, we did breakfast at my parents', cooked on the grill and watched the football games, as per the family tradition.

By the end of the weekend, Mickey was thoroughly exhausted. Because he was tired, he had a rough time in school today and had a few meltdowns during the day.

Mickey's home therapist is back today. She was having anxiety problems (related to the imminent divorce of her parents) and had some sort of breakdown two weeks ago. She took two weeks to recover and seems to be putting things back together.

The NFL Football season kicks off tonight!

While I might be the only one in this household excited about the sport, everyone enjoys football Sundays. It begins at 7am when I, like a child on Christmas morning, wake up giddy with excitement. The kids usually hear me and wake up too.

I dress Mickey in his football jersey and pants (the daughter too), and scoot everyone out to the car for a trip to my parents' house. There, we idle around the house, cooking a huge breakfast (Mickey loves pancakes) and throw the football around with the family. It's a big, family breakfast with eggs, bacon, pancakes, toast, oranges juice, coffee, etc. Everyone eats until they're full, then we head home at around 11am.

When we get back, I put the pre-game shows on TV and fire up the grill! In the early fall, I'll usually grill bratwurst, ribs, or chicken quesadillas (more details about my cooking exploits to come in my other blog). Closer to winter, my wife takes over, usually with a pot of meatballs, kabasi or galumpkis. Right before the 1pm kickoff, we eat again (though we also snack the rest of the day). At 1pm, the daughter goes to bed, and Mickey joins me in the sports room to watch the games.

I have learned my lesson from throwing the ball around in the house (my house, anyway!) so there will be no more of that this year. Mickey usually hangs out with me on the couch, hitting buttons on the vending machine and bringing me soda (that I don't want!) or incessantly tapping the button on the Troy Aikman figure that I have mounted downstairs (when you click the button, a 30 second interview from Superbowl 30 plays).

I am very excited and the kids are too. Sunday can't get here fast enough.. !

Umbrellas are out, dogs are in. Mickey's fascination with umbrellas appears to be over. At this time last year, an umbrella meant that Mickey would stop in his tracks and stim around it (for hours). Now, they're completely ignored.

But lately Mickey has been consumed with his fear of dogs. He's an outdoor child, who always wants to be outside. A few weeks back, however, the backyard neighbors brought home a rather large dog. The dog is very friendly, but has a loud bark. If Mickey is outside when the dog is put out, he surges for the door to get inside.

Unfortunately, when you live in the suburbs, dogs are everywhere. Our walks now are finis, seeing as we can't get past four or five houses without someone having a dog in their backyard. Mickey's reaction is immediate, he either runs for our house (if it is still within sight) or runs to me and latches himself around my leg.

I can't imagine what might have brought this fear about. Just last year, Mickey would play in the front yard with the neighbor's dog. He liked to pet him and throw him the ball. My first instinct was that it had something to do with school, but they have reassured me that the topic, let alone a real dog, hadn't come up.

Mickey was back to school today after three weeks of vacation. He was excited and happy, and so was my wife!

There has been improvement in some areas over the past month. Mickey is using the potty, and even going on his own initiative, but only to urinate. His aim leaves much to be desired, but much to my wife's displeasure, so does mine (it's a guy thing).

We're still having problems with Mickey's overwhelming desire to be naked. I am now certain that this is a sensory issue. He does not like wearing a wet diaper, and so if he has to go, the pants and diaper come off and he is doing is business wherever it is convenient. Unfortunately, as of late, that has not only included outside but in his bed, on the hardwood floors, etc.

I bought Mickey some 4T onesies (surprised that they make those), and he sleeps in those every night. He's not happy about that, but going into his room and cleaning up the mess every morning became too much work.

In other news... it's moon cake season! For some reason I remember it being in October, but the Chinese calendar is lunar and the date does vary from year to year. Moon cakes are great.

It has been two weeks since my last update - the most since I started this journal. The delay was unintended, but as I have said ad naseum, working two jobs has cut more into my free time than I ever could have imagined. Lots going on, though.

Mickey had another appointment with his developmental pediatrician. She strongly suggested that we get Mickey some speech therapy, even if we have to use our own budget to do it. He has been making some improvements, but his speech is still lacking. He tries very hard to speak, but it always comes out as gibberish. Because he is trying, a SP can really help. Obviously money is no object here, so I am in the process of trying to find someone.

Today was Alaina's birthday and Mickey seemed to have a good time. She played with Dora toys, while listening and dancing to Dora music, eating a Dora cake with Dora utensils, and of course dressed as Dora (complete with backpack). Mickey couldn't be bothered with that, but we did dance together, and he even sat down and ate french fries with the other kids.

And, on a completely unrelated note, the hurricane in the gulf is going to heavily damage the oil infrastructure. Only time will tell how bad the damage is, but it has already cut oil output by a third. At best, oil prices are going to spike when the market opens on Monday, and at worst, well let's just say fill your tanks while you can, there may be some long lines at the pump.

Unfortunately my updates have been more infrequent. Working two jobs seemed like a good idea at the time - but since obviously family time is not negotiable, there's not much time left at the end of the day to write lately.

Being a politics junkie, "Meet the Press" is on my weekly Tivo list. This week, the second half of the show was dedicated to autism, specifically questions about whether or not there is, in fact, an epidemic and whether or not there is any connection to thimerosal.

Note - while they were debating whether or not autism is an epidemic in this country, they did not debate that the number of reported cases has risen. The question seems to be whether these new cases are the result of something environmental, or simply better standards/reporting.

The debate was civil, and inconclusive in my opinion. The guests were the president of the Institude of Medicine, Dr. Harvey Feinberg and David Kirby, author of "Evidence of Harm".

However there were two important things that I learned:

(1) Arizona State University began a clinical trial on chelation and autism on June 15th, 2005. That's great news - hopefully we can get something conclusive as all we have now is hearsay.

(2) The last stocks of vaccine with thimerosal were depleted in 2003. With statistics forthcoming in the next month, we should have something conclusive about thimerosal's effects on autism as well. Conventional wisdom would dictate that, if thimerosal had any influence on the increasing number of autsm cases, those number of new cases should decline after it was removed.

I took the family to the beach for the day today. The beach is not my favorite destination, but Mickey likes it, and this was our one and only beach trip for the summer (so I shouldn't complain).

I chose Ocean City, NJ as a destination (the #1 family beach destination, according to the Travel Channel). Again, this choice was for the kids - there were far too many people for my taste.

Mickey's last visit to the beach was in June of last year when we went to Emerald Isle, NC. During that trip, Mickey was afraid of the ocean. Most of his interaction was throwing rocks and shells into the water. He was also obsessed with umbrellas on the beach last year.

Not so, this year. Mickey had an absolutely wonderful time. He was tentative at first, but after 15 minutes he was jumping up and down in the waves, splashing water and drawing in the sand. There was lots of smiling, and it made for some great home movies.

The only negative of the trip was the grandiose meltdown to end the day. Getting Mickey out of the ocean was difficult, as was leaving, but the trigger for the meltdown was, again, that he wanted his swimmer diapers off. I wanted to run him under some water before putting his new diapers on.

And so, for the entire walk from the beach to the showers (about 2 blocks), Mickey screamed and cried. It was quite a scene, just about everyone stopped what they were doing to watch.

That didn't spoil the day, though. Both kids had a wonderful time, and that's what matters most, doesn't it?

One of the benefits to my new job is that I am working directly with publishers, and thus have direct access to tens of thousands of papers and medical journals that are not in the public domain (or, at least, are available only on a per fee basis). So, in the gaps during the day, I have taken to reading a few of the papers (and, more specifically, the studies) relating to the autism spectrum.

The most striking thing really is how little research has been done. Most of the studies have been with small, controlled groups and are inconclusive and require further study.

There were three papers that I read today which stuck out, though.

The first, titled "Intravenous secretin for autism spectrum disorder", debunked the idea that secretin is effective in any way in limiting the symptoms of autism, and even went so far as to suggest that further studies would basically be a waste of time and resources.

The second, titled "Gluten and casein-free diets for autistic spectrum disorder" reported that, in a controlled study, there was a reduction in autistic traits and a "significant beneficial treatment effect". It recommended that a larger scale study move forward.

The third, and most interesting to me was titled, "Superior visual search in adults with autism". Not to keep you in suspense, the article did show that adults with autism had superior visual skills. This was surprising to me, as my son does not appear to spend much time observing his surroundings, and in fact seems to tune them out.

There is so much good stuff to read, it's like being a kid in a candy store. I saw several studies published this year about B-6 with magnesium and autism. The abstracts seem to indicate that the results were inconclusive.

While there doesn't appear to be a large body of research, it does appear that there is some significant resources dedicated at the moment. Many of the papers were published in 2004-2005, and there are some 300+ papers written in the last year that I found interesting. I suppose I will continue to take a peek at these while watching the paint dry, ahem, I mean writing requirements documents.

Mickey was sent home from school with a fever today. Even so, he seems to be in fine spirits, just a bit tired and clingy. I do feel a bit bad for the wife, leaving her behind with two sick children.

He continues to use his potty and even at a B.M. yesterday. The stim toys really seem to have done the trick, he cannot wait to get on the potty now!

I am packing my bags and will leave for London soon. I do not expect to have Internet access while I am in the UK, so this space will be quiet over the next week.

Mickey has an irrational fear of dogs. This is new - from what I can tell, it is something that he developed over the past few months.

My wife first informed me about this fear a few weeks ago, but I saw it for myself during the week and then again today.

On Wednesday, I took Mickey for a stroll around the neighborhood. We walked by a house with a small terrier, who darted up to the fence and started barking. He was a good 20 yards from where we were (the pavement). Mickey froze with fear, then grabbed my leg and wouldn't let go. I had to carry him until the dog was out of sight.

Today, I took Mickey to Valley Forge Park. It was a beautiful day, mid-80's with a light breeze and no humidity. As we walked, we came upon a young woman walking her dog, a labrador retriever. Again, Mickey stopped in his tracks, and this time, ran away.

I cannot imagine what brought this new fear about. We do not have any dogs, nor does anyone in our family. The ones that we have encountered in the past have been gentle enough, and I had taught Mickey to throw balls to the dogs and pet them.

A potty breakthrough, anyway. I knew that we needed to reward Mickey to get him to use the potty. Toys didn't seem to work. Food didn't work (he doesn't care much for sweets). Praise didn't work either.

But today, I found an old toy - a plastic cat with a clock in the center. I hid it a few months back because it had become an obsession for Mickey, he could stim on it all day.

Suffice it to say that I moved the toy into the bathroom and now Mickey loves going to the potty. He went three times today! Each time, he went in, stimmed and played on the toy while he sat on the potty, then said, "All done" when he was done.

The other thing that I learned is that he likes privacy on the potty (maybe that should have been obvious?). He won't go while someone is standing over him.

All in all a good day!

There have been a great deal more meltdowns this week, which I attribute to Mickey being out of school. School seems to provide a routine to Mickey that gives him a certain level of comfort.

Last night was not good. I had a guest over the house for dinner, visiting from China. Mickey was not in the best of moods, and was falling asleep on the couch, so we put him to bed a bit early (8:00p).

By 11p, Mickey was back up and crying in his room. I brought him downstairs, changed his diaper, got some more food in his belly and put him back to bed. He was awake again at 12:30a, and this time it was difficult to calm him down. That meltdown lasted a full 30 minutes.

I am not certain what brought this about, but I am hoping once he gets back to school (next week), we can return to business as usual.

My wife cooked a fabulous dinner last night, incidentally. Shrimp, shitake mushrooms, ribs, chinese vegetables, steak and peppers with a tofu soup. Yum!

( An off topic rant about where I think the world is headed. Hint, not any place good )

The wife had the entire day off - went to a bridal shower with her friends, then into the city. It was thus another day of being Mr. Mom, albeit much less eventful than last time. Mickey played in the pool almost the entire evening. I did take them to visit my parents for dinner.

I decided to post my comment from the last entry into its own entry. No particular reason, really, other than to get this out in the open so that I can reflect upon it in the future.

While I was at work yesterday and the wife was on the phone with her friend, Mickey managed to find and devour Alaina's grilled cheese sandwich. I am amazed time and time again of the effect of such things on Mickey's behaviors.

Last night, we went to a discount department store to pick up some supplies, and Mickey had the meltdown of all meltdowns. It came out of no where. There was screaming, crying, tears, snot, kicking and, did I mention screaming? There is no reasoning with him during a meltdown, nothing that can be done except to get him into a more comforting situation. The screams were so loud you could hear them throughout the store. Everyone, of course, stopped what they were doing to stare. I led him down the aisle and we were the center of attention.

The wife informs me there was another meltdown today when she took the kids to the store to return an item. She was completely spent and it was only noon.

An organization calling itself Generation Rescue has launched a web site and bought some advertising space on Google. They seem to be privately funded, and are promoting mercury poisoning as the culprit behind the recent rise in autism cases. I am a bit skeptical - since they seem to be promoting a "cure" (chelation), but they have some interesting information on their web site.

Greenpeace is now selling a mercury test kit that requires only a $25 donation. More information about Greenpeace, and why to get tested for mercury can be found here.

I may order it since it requires only a hair sample. I would sure like something definitive about whether or not there is any mercury in my son's system.

Mickey has begun potty training in earnest this week. He tolerates sitting on the potty remarkably well, but just hasn't grasped the concept yet. We did get him to urinate in the potty once, and he wasn't very pleased about that. He seems to be holding it, and he has quite a bit of willpower. I'm still not sure that he's ready for this, but the wife is pushing ahead full throttle. I hope it works out.

I took the family downtown to stock up on supplies at the Asian supermarket, then we went out to eat Vietnamese food. It was very good and Mickey enjoyed it. After that, we returned home and went to the zoo (we now have a season pass).

Tomorrow there is a graduation to get to - I hope Mickey can keep it together for two hours around strange but curious family members.