What’s good for the (Spruce) Goose isn’t good for the Connor

At an early age he was reclusive and had a strong fear of germs. This strong fear developed into one of the most well known cases of Mysophobia. He is Howard Hughes, inventor, aviator, billionaire, and quite possibly Autistic.

The world renowned aviator and inventor of the Spruce Goose became so encompassed by his phobia of germs that in his later years, he would seldom leave his room which he deemed as clean. When he did leave, he wore gloves on his hands and facial tissue boxes on his feet. His servers were provided with complex instructions on how to prepare his food without a (perceived) possibility of contamination.

“Will I get sick if my straw touches the table and then I drink through it?” he asked his mother for the third time since sitting down to eat. Unfortunately, this “he” I is not Howard Hughes, not Michael Jackson (another famous person with Mysophobia), nor is it Tony Shalhoub’s character Adrian Monk (from the hit series “Monk”). It was, in fact, my 7 year old Autistic son Connor.

I wish I could say that Connor’s concerns over his straw touching the table was as simple as a child being conscious of cleanliness, but it is merely the tip of a much larger iceberg. My only hope is that we are able to slow the engines and turn the rudder hard enough before this iceberg has the same tragic impact on Connor as another did on the Titanic.

Warning: Some may find the next section to be disturbing or disgusting. I know I do. So if you are easily offended, be forewarned.

I imagine that it might be helpful at this point for me to describe all of the new (having started within the last 2 months) actions Connor has started to do that are signs of Mysophobia. The most pronounced is his spitting. While spitting may seem to be the vilest and dirtiest thing possible, Connor perceives it as a way to rid his mouth of germs. It is not that he spits like a grand champion expectorator, in fact the spit just sort of dribbles out of his mouth, only to be wiped onto his shirt. In a matter of minutes, Connor can completely drench his shirt with his own saliva. Besides the wet shirts, this has caused a rather ill effect on Connor’s health, as the acids in his saliva have created sores under his lower lip.

When ever we have asked Connor about the spitting, he tells us that his mouth touched something, such as a garbage can, the floor, his feet, etc… and he is concerned that if he swallows he will get sick. I could probably understand wanting to spit if my mouth touched the floor or a garbage can. But for Connor, these things never really occurred. If we point out to him that they incident he described never occurred, he simply replies with a question of what would happen if he did do it.

Other signs of his developing Mysophobia can be seen in his recent obsession with using utensils to eat his food. While on the face of it, Connor using utensils is a good thing, it has gone to an extreme in which he refuses to eat common finger foods such as chicken nuggets without the use of utensils. When asked why, he states that his hands might be dirty from touching his pants or the table.

Connor has also become gradually more and more obsessed with washing his hands. At first, I linked this behavior to his love for water and water associated play, but in looking at the frequency and manner in which he washes his hands, it is clearly associated with his feeling dirty or germ laden.

My wife and I have a difference of opinion on the severity of this problem. I believe that this is the start of a rather debilitating downward spiral while she feels that this is simple another passing obsession of Connor’s. It is my hope that I will be shown to be wrong. For the second time since Connor’s diagnosis, we are going to look to an outside source for help in dealing with a behavior (the first was with his eating habits). I will post updates about our progress.

Oh my!

Has it really been since February? Oh my!

Well, a lot has happened since February, including a trip to Walt Disney World, a swimming pool, fear of the color blue, and germs. There is so much I have to say!

Over the next week, I will work on putting together a couple of entries about each of these items, so be ready for an onslot of posts.

Zombie Juice!

Influenza! Yes, that time of year has come to our neck of the woods when influenza, also know as the “flu”, is making the rounds. Unfortunately, this year I was the only person in my household that received the vaccine, so the rest of my family has been suffering for the past 2 weeks. This year’s strain is a rather nasty one which includes a fever, congestion, coughing, and even an upset stomach.

The path of travel started with my oldest son, Aiden. After knocking him down pretty well, it spread to my wife. As bad is it was for Aiden, it was about 5 times worse for her. The last stop on the infectious disease railway was Connor.

Connor first started to show signs of influenza late last week, I think about Friday. Overnight, it turned into a full fever. Saturday was not the best of days for anyone, as my wife and Aiden were struggling to get ahead of the evil virus and Connor was running head long into it.

Now one of the most interesting aspects of the human mind is the ability to find humor in some of the most miserable of times. Saturday was no exception to this. In the midst of it all, Connor’s nausea got the best of him and the un-natural upward flow of stomach contents associated with it played out. As I was cleaning up the mess that unfortunately comes with such an unexpected moment, Connor announced that he knew what had happened.

In particular, he stated that his orange cup was broken and needed to be thrown away. At first I was a little confused, but he continued on and clarified it for me. “My cup is broken dad, it must be dirty or something because it made me sick to my stomach!” he explained to me. I laughed to my self at the simplicity of his deduction. It was simple really, he drank from the cup and then vomited… it was cause and effect.

I tried to explain to him that the problem wasn’t the cup, but was related to the virus that was plaguing him and the other members of the family. He seemed to accept that answer after a little coaxing… or so I thought. I was proven wrong when later that day he accused my wife of replacing our water with Zombie Juice, thus causing him to vomit. My wife and I had a good laugh about that as we, once again, explained that this had nothing to do with the undead and was merely a side affect of the influenza virus.

The good news is that the family is finally shaking the last few symptoms of the virus and getting back to our daily routine of abnormality, with the addition of a new term for a drink that is less than desirable… Zombie Juice!

The Wanderer

According to my family, the first incident for me was at about 30 months of age. My parents were out and had left us with a babysitter for the afternoon/evening. Somehow I managed to leave the house and walk 3 blocks to the near by elementary school. Once there, I found an open classroom where a PTA meeting happened to be going on. After some franticness, I was returned home later that evening with the help of the local police department and many concerned parents.

That was the first sign to my parents that I was a wanderer. As I grew up, the question of “Where is Brian?” was repeated over and over. There were the numerous times that I disappeared in a busy mall, or wandered away from home, only to be found at a neighbor’s house. I never really thought about letting someone know where I was going, as the idea that they would worry when they couldn’t find me was a foreign concept. I knew where I was going and that I was safe so, by proxy, they knew that as well.

I never did outgrow the desire to wander. As an adult, I have developed the capacity to understand why people became so concerned. That is probably the only reason I don’t wander to this day. Every once in a while, however, I will take a day for me to go do those things that I need to do to pacify the wanderer in my.

Connor’s first sign of being a wanderer was at about 20 months. One fun day he managed to defeat the deadbolt on the screen door and started on a journey. When my wife caught up to him, he had already made it around the corner and was heading along the sidewalk of a rather busy street. After bringing Connor back to the house, my wife set about trying to figure out where he was heading. With a little bit of creative parenting, we finally determined that Connor was going to Disneyland. He was obsessed with Disneyland at the time.

Learning from this first incident, we started to pay close attention to where Connor was at all times and also to how we could secure the area to prevent his escape. Less than a month later we were attending a birthday party in my Great Aunt’s back yard, our attention waned for just long enough… and Connor escaped again. His absence was noticed almost immediately and “Where is Connor?” was on everyone’s lips. I suspected that he had left the “controlled” area and checked the driveway. That is when I spotted him. Connor was in the street and a car had just come to a stop… less then 1 foot from hitting him. I dashed into the street and scooped him up in my arms, trembling with fear.

When we moved into our new home in Stockton, we were very concerned with him wandering off again. Our home security system had the option of announcing when ever a door was opened… so we set that feature to at least offer us warning. Even with this in place, Connor wandered. After a few months in the new home, Connor went out the front door and down the street… heading for Disneyland again. We added security to our house, in the form of a swing latch bolt on the front door. To this day, that seems to have curtailed his leaving the house.

The one incident that really opened our eyes and helped us to tye the wandering to Autism came in January of 2004 when we took a trip to Disneyland to have fun in the “Happiest Place on Earth”. This was nothing unusual, as we (my wife and I) had been making trips there since before the children were ever born and we usually made 2 or more trips a year as a family. Remembering that Connor is a wanderer, my wife and I have always been careful to keep close tabs on him when we are in such a crowded place as Disneyland. Unfortunately, it only takes a moment for him to disappear. That moment came while we, as a family, were enjoying looking at the funny hats at the front store of Disney’s California Adventure. Connor and Aiden were trying on different hats and being all around silly. I looked away for a moment to tell my wife something and when I looked back, I saw two boys with silly hats on… unfortunately, only one of the boys was mine. Connor was off! “Where is Connor?” Those words once again started to tumble from our lips as we searched the store and the immediate area around it, trying desperately to find him. Leaving the store, I glanced towards the front gate and realized where Connor had gone. I rushed through the turnstile and found Connor half way across the walkway to Disneyland. Yes, once again Connor was heading to Disneyland and actually stood a very good chance of making it there this time.

After the incident, my wife and I reflected upon all the times he had wandered off. It was finally starting to click with all of the reading I had done over the previous six months on Autism. It was only two months later that Connor was officially diagnosed.

Unfortunately, this is not one of my blog entries where I am able to offer a great nugget of advice, a strong opinion, or other useful bit. To this day we are still trying to find new and creative ways to keep Connor from wandering off. With his latest obsession being the Pokemon Center in New York City… we are frightened that he will end up on a plane or bus traveling there. For now, all we can do is keep our eyes open and continue to defeat his attempts to wander off.

It is tough having a wanderer.

The Frenzied Holiday Season

The message boards and news groups dealing with Autism tend to be filled at this time of the year with messages from parents on how frustrating their holiday celebrations were. Between the rushing around to visit with families, the crowds of people that fill every inch of the shopping centers, and the overall frenzied pace of getting ready for visitors, it is no surprise that many Autistics tend to spend the entire month of December in an over-stimulated state of anxiety. Our household was no exception to this.

Between traveling to my parent’s house, entertaining in our own home, and the simple expectation of opening gifts, Connor was a hand flapping wreck. Unlike pervious years, however, I spent as much effort as I could muster (between my own episodes of hand flapping) to watch what was causing the stimulation and stress for Connor (and myself).

So, here are a few of my observations:

Santa Claus – Beyond the bright red suit and snowy white beard (I think those alone are enough to cause most neurotypical peoples eyes to be over stimulated) we have the threat to behave. In the classic song “Santa Claus is Coming to Town” we are warned that we had better watch out, better not cry, and better not pout because Santa is watching us all the time. I am not sure who decided long ago to portrait Santa as a member of George Orwell’s “Big Brother” government from the novel 1984, but I know I find it creepy to think that someone is always watching me, even when I am sleeping, and is going to make a determination of if I am bad or good. Of course in modern child psychology we learn that the old style of discipline through negative reinforcement is no where near as effective as discipline through positive reinforcement.

The lesson learned, for me, is that next year I will have a talk with Santa and instead of warnings about bad behavior and a lack of presents; there will be positive letters of encouragement saying things like “You have been very good about ____, I am looking forward to bringing you a gift!” While this may seem a subtle difference, the way it is received, either by an Autistic or a Neurotypical child is so much more positive and effective.

Scheduling – One of the things that seems to happen in homes around this time of year is that scheduled are thrown out the window as we try to do last minute shopping or realize that we need to do some last minute furniture rearrangement to accommodate more people in our home. Once the schedule is gone, all that is left is a confusing state of anarchy accentuated with frequent surprises. Scheduling surprises are, generally speaking, BAD.

The lesson learned, for me, is that next year, I will have to be extra diligent in scheduling things out and sticking to the schedule. Even making changes to the schedule the day of is better than waiting for the last moment to say “OK, we need to run to the store!” For us, this means we need to be better about keeping a schedule throughout the year… perhaps that can be our New Year’s resolution.

Parties – With the Christmas season comes a myriad of holiday parties and family gatherings. This year we hosted a family gathering of 12 people on Saturday (December 23rd,) traveled 1.5 hours to my parent’s house on Sunday (December 24th) to attend a family gathering of about 30 people, and traveled that same 1.5 hours on Monday (December 25th) to attend another (smaller) family gathering at my parents house. I am not even sure when we found time to sleep. The over the top social interaction, combined with the general noise that accompanies a house full of people causes most people a heightened level of stress… for an Autistic that can not filter out all the sounds, smells, and visual things… it is completely overwhelming.

The lesson learned, for me, is that we need to think about ways to allow the over-stimulated to be removed from everything… a bedroom or even a quiet seat in a corner. On this we did pretty well this year, but there is always room for improvement.

That is about all of the pearls of wisdom I have realized from this year’s holiday season. If I think of more, I will most certainly post it.

I hope that everyone had a good Christmas (if you celebrate it) and I hope you all have a wonderful and safe New Year celebration!