Life With Anthony: Experiences With an Autistic Child

2012-02-05T19:59:00.006-07:00

The Big Bad Wolf has a kindred spirit in Anthony. Both are equally adept at destroying building materials of less hardness than brick. For Anthony, though, there is none of this namby-pamby huffing and puffing. No sir, his weapons of choice are his head, elbow, and occasionally knee or foot.

Ironically for us, part of our problem is a desire to work more with Anthony. My wife was recently told by those working with Anthony at his school of his ability to communicate through pictures. This concept is by no means new to us; we have tried more than once to help Anthony in this way. But we thought we should try again, and also try to do more with him to help him to grow. My wife bought him more puzzles--he had torn up most he had--and some cheap earphones to listen to music, which he has unfortunately already broken. She is also trying to let him choose what to wear in the morning instead of grabbing something and giving it to him.

As a humorous aside, my first recent attempt involved our dinner of Mexican food with tortillas, rice, chicken, guacamole, chips, et cetera. We were nearing the end of the meal, and had Anthony choose on the sheet of pictures between "all done" and "more". He chose "more", so we gave him more chips since we were out of tortillas. After he was done with that, he still seemed interested in eating, so we showed him the sheet again and asked if he was "all done" or if he wanted "more". He surprised us by picking a picture that said "different". I didn't get it immediately, but my wife laughed and realized he wanted more food, but not the tortilla chips. That meant I had to give him some of my remaining dinner with tortillas on my plate. We jokingly said perhaps we needed to ensure certain choices were not on the list to prevent him from taking my food.

But many of our attempts to engage him aren't so benign. For instance, at any time I try to get him to wash his hands the way it needs to be done--wetting his hands, putting soap on them, rubbing them together before putting them back in the water--he is liable to go into a rage for up to twenty minutes. I keep wondering how many blows from his head the thin wood table in his room can take, and the same goes for countertops in the bathroom. The panel on the bathtub has already started to break and come away from the tub, and new holes in the drywall are produced in one shot instead of after multiple attempts. These episodes can easily happen two or three times a day.

At this point, we want to keep trying to work with him to do what we can to help him grow, just as we do for our other two children. But we may be forced to accept less than that if it means we continue to go on this way.

2012-01-30T19:36:00.003-07:00

We went recently to a concert by the local symphony and opera. They do this annually for families with special-needs children, recognizing the difficulty these families have of attending such events otherwise.

This was the first time, for a number of reasons, that we have been able to go. We're glad we did. I don't know if Anthony enjoyed it, but we were moved at the sight of other individuals with special needs clearly enjoying themselves and expressing it in a way that would normally not be acceptable in such a venue.

The picture above is of our daughter, Anthony, my wife, and our younger son apparently urging us to live long and prosper. As with so many other pictures we take, we try to use the one in which Anthony is both looking at the camera and smiling--a rare combination.

2012-01-07T14:16:00.002-07:00

Sometimes I think Anthony could well be the Devil incarnate, especially recently. We are not sure if his marked increase in violent behavior is related to a change in medication unless there was a month lag time, and the medication we changed to is one we used before without noticing a difference. We changed because of the prohibitive cost of the one we had been using.

Anyway, Anthony regulary goes off over the littlest things, and then even sometimes when there appears to be no trigger whatsoever. We can deal with new holes in the walls here and there, but he gets even more upset if we do not allow him to dig his fingernails into us or otherwise engage him. To be on alert so often with him is emotionally draining.

2011-12-18T18:46:00.007-07:00

I had an observation today--nothing earth-shattering. But I have noticed recently that when people ask me or my wife how our "son" is doing, they are invariably referring to Anthony. But when I mention "my son" to others, it could be either Anthony or our younger son, and it is frankly often the latter.

I think I have mentioned this before: I don't actively think much about Anthony. Yes, there are *always* issues with him, but they usually fall within known parameters. For instance, today he urinated on the bathroom floor. It's no big deal in our lives because we know that's a possibility. We clean things up and move on.

But the topics that are generally on my mind regarding our children are our daughter's academics--because she is struggling a bit to find the necessary balance in her life right now, and it's a concern going forward given the things she hopes to accomplish--and our younger son's soccer. My wife would likely be more concerned with his violin. The difference in our viewpoints is that my wife focuses on how to help him with his violin, and I focus on how to help him with his soccer. Because he wants to go as far as he possibly can as a player, I work with him every day, even bundling up to go outside in our currently cold winter temperatures. My wife spends even more time with him daily on the violin than I do with soccer.

So, as I said, this is not a major observation. But it is interesting to me how our family situation seems to be viewed from outside, and how we may look at it differently from within.

2011-09-10T15:30:00.002-06:00

Anthony unleashed a new tactic recently for putting holes in our walls. Because my wife has covered the wall in our dining room that he most frequently targets with his head, he sometimes goes out of his way to find another wall to damage. However, he created a new depression with his elbow in the dining room below head-level when he was upset earlier this week.

I realized that he often does not create a full-fledged hole on his first try, but rather finishes the job shortly thereafter on a subsequent attempt. So, I have decided to be proactive and apply drywall compound as soon as reasonably feasible to any new indentations I see. I know it won't look very good, but neither do holes.

2011-08-25T19:58:00.002-06:00

Anthony still surprises us occasionally with violent outbursts that we don't see coming. He was fine this afternoon--making goofy noises as he often does when he is in a reasonable mood--when my wife gave him some potato chips, which he likes. Shortly thereafter, he went off. First he put a new hole in the wall. Then, as my wife attempted to give him medication to calm him, he slammed his head into hers. She described it as "EXTREMELY painful". We wish we knew what to do in these instances, or how to prevent them. He got upset again this evening while I was trying to ensure he had enough to eat. Hmmm. As I write that, I wonder if perhaps he has a tooth that is bothering him. I don't want to think about more medical visits.

I wish I could work from home. As Anthony became angry again this evening, I was reminded that he knows better than to come after me. He tries little things like digging his fingernails into my hands, but he frankly knows that head-butting me will produce a response he doesn't like. None of our other family members are strong enough to hurt him back--and thus get him to stop--when he goes after them.

2011-08-10T19:44:00.004-06:00

Our doorbell rang tonight, then the person at the door knocked fairly vigorously. I suspected it was our neighbor's daughter, who frequently shows up to ask if our younger son can play. Since he has other things he wants to do if he is not practicing the violin or playing soccer or doing homework, we don't rush to answer the door. In this case, however, Anthony was nearby and opened it!

The visitor was instead a girl from church in our daughter's age group, inviting her to tonight's activity. I had to hurry to the door because she started talking to Anthony, apparently unfamiliar with his lack of cognitive skills.

I am not quite sure how to tell Anthony he can't open the front door. He is used to us telling him to unlock the side door from which family members enter upon returning home, especially because he insists on locking the door in the first place. Perhaps I will have to put a sign on the front door telling people we will answer soon enough if we are there, so they don't have to pound on it to get our attention.

2011-07-26T20:06:00.003-06:00

We can see that Anthony has not yet fully recovered, but there are clear indications that he is getting quite a bit better. First he started becoming much more animated and making noise, to the extent that there have been times when we have wanted to say, "Just shut up already!" The other major sign is much less welcome: he nearly put another hole in the dining room wall this evening when he got inexplicably upset. We certainly did not miss that while he was ill.

2011-07-20T19:32:00.003-06:00

Anthony is back home. We had hoped he would be released yesterday, but they kept him for a second night and were talking about a third because they wanted to ensure his oxygen level would be high enough without supplement while he was asleep. We could already tell he was feeling much better without the readings; he was to the point where it was impossible to keep the monitor on his finger or even his toe for any length of time.

2011-07-18T21:18:00.002-06:00

Anthony is in the hospital this evening, at least overnight. He has not vomited--I misread him in that regard--but because of further incidents with diarrhea and looking very pale, my wife took him to the doctor thinking perhaps he would need antibiotics. To her surprise, the doctor said he had an unacceptably low oxygen saturation level, and that he needed to be hospitalized immediately. The doctor there confirmed that he has some kind of pneumonia, and further tests are being done tonight to determine whether and what kind of antibiotics should be prescribed. My wife is staying at the hospital with him.

2011-07-16T20:38:00.001-06:00

How do you deal with a child that acts like he is going to throw up, but doesn't have the cognitive ability to do so in the toilet? I tried holding a bucket in front of Anthony, but he doesn't like me doing that.

2011-07-15T18:37:00.009-06:00

I have intentionally refrained from posting for some time. While I still think there is value in writing about Anthony--and have had several episodes in the last few months that would previously have spurred me to action--I know that anyone who has read through this blog by now has a reasonable understanding of what he is like. I am to the point where the many other projects awaiting my attention weigh more heavily than documenting yet more variations on a theme. I have decided that any posts going forward will be short unless something unprecedented happens, even if they suffer for readability as a result. My apologies in advance.

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We have had a rather malevolent virus run through our house, first affecting our daughter for about a month, then recently hitting our younger son, my wife, and, surprisingly, Anthony in short order. Anthony has not been sick since the last post in December while others in the family have been, and we still are not used to the idea of him being ill.

We have been caught off guard with Anthony's reaction to this virus, however. In addition to the continuing fever and cough the other family members have experienced, he has also been hit with diarrhea. My poor--and also sick--wife dealt a couple of days ago with the ramifications of him not making it to the bathroom. We hoped that was the worst of it, but yesterday morning had my wife dealing with an even more severe case without him getting out of bed. She made a quick trip to the store for Imodium and adult diapers. I guess we should have expected that no amount of coaxing would persuade Anthony to put the diapers on, so we are trying to monitor him more closely.

2010-12-05T19:22:00.009-07:00

I have mentioned that Anthony does not get sick very often. He did get sick this week, however.

We have difficulty knowing when he has had enough to eat. If he is not full, he will disrupt our sleep by either not going to sleep himself or waking up in the middle of the night. And, he sometimes clearly does not eat enough to be full if he is uninterested in the food for whatever reason. So, we tend to err on the side of feeding him too much and occasionally feed him ourselves to ensure we will not be paying for it later.

In this instance, when we were trying to get him to eat because he was not doing it on his own, he started to make sounds that indicated he might throw up. We stopped feeding him, and he seemed all right. However, he vomited later after we had sent him to the bathroom. Since he does not know to vomit in the toilet, we had quite the cleaning project.

We had the door between the bathroom and our bedroom slightly open, so some of the contents of his stomach ended up on our carpet. However, the bulk of it was on the floor and the door--and surprisingly high up the door at that. I never really thought about the force behind a regurgitation until I realized the distance it would have traveled had the door been fully open. Maybe this will teach me to keep the door completely closed.

I suppose I spent an hour getting the floor, door, hinges, moulding, and carpet cleaned, plus getting Anthony washed off, and my wife spent some time on the carpet as well. He has still exhibited signs of an unsettled stomach in the two days since, but we are trying to watch him more carefully to prevent a recurrence.

2010-11-22T20:51:00.000-07:00

"My dog ate my homework." That's the classic excuse for schoolwork being unfinished. But how about, "my brother ripped up my homework"? Our daughter was privileged to use that one recently.

Anthony is going through a stretch of shredding most any paper or cardboard he finds. Unfortunately, his room has contained several items that fall into that category. It is one thing to try to rid the area of stacks of unwanted telephone books, but another to replace cardboard boxes storing various items. Even more aggravating has been discovering old videotape boxes--that we did not know existed--torn to pieces and lying all over the bed and floor.

In addition to this compulsion, he also lately takes articles of clothing off the hangers in the closet and drops both clothing and hanger to the floor. I never knew how much was actually in one closet until I tried picking everything back up.

I imagine neither of these activities, either by themselves or combined, sound particularly distressing, and, certainly, picking paper off the floor or re-hanging clothing do not of themselves really test our patience. We are probably just tired--tired of one more thing he does that depletes our time and energy, tired of seeing him doing it several days in a row, and tired of knowing we will likely be cleaning up again and again until we can find resolutions to prevent him from doing it.

2010-11-08T21:12:00.000-07:00

I am not in the mood to write, but I would be remiss to not record today's events.

I had been at work for a little more than an hour when my wife called. After some agitation and resistance to getting ready to go this morning, Anthony slammed his head into her and bit her finger as she tried to take him out to the school bus. The bus driver was brave enough to venture letting him board, but her courage was rewarded with a laceration to her face when he went after her as well.

The driver called the police to intervene--I am guessing that is standard procedure. They came and handcuffed him temporarily to subdue him. When my wife told me that over the phone, the dark humor in me produced the thought, "my son is a criminal, " but I knew the police did it only as a precautionary measure. Paramedics also came, and one of them actually remembered Anthony from the events of a year ago and was quite understanding. I of course hope there are no future incidents for Anthony to be remembered yet again.

Anthony was apparently hitting his head so hard inside the bus that the paramedics were concerned for his own safety, and asked my wife if she wanted him taken to a hospital for examination. Our own view of this is that he is probably not hurting himself. We have noted in the past that if he causes himself enough pain, he stops.

My wife asked me to come home, but not so much because she thought she could not deal with Anthony. She had actually scheduled a training she was conducting for parent volunteers for the elementary school art program she co-ordinates, and simply could not reschedule because the first class teaching sessions start tomorrow.

By the time Anthony calmed down, his school principal and primary aide had arrived on the scene as well--I am increasingly convinced there is not a more thoughtful special-needs school staff to be found anywhere. They determined that Anthony was past the stage of being a significant risk at school, and his aide agreed to sit by him on the bus--another had come to take the other children--so he could attend.

However, the resolution seemed a little quick for my liking and, since I already told my boss I was taking the rest of the day off, I thought it appropriate to pay the staff a visit to discuss the situation. I am glad that I did. Although Anthony's teacher agreed that he is often fine after a major incident, there is always the chance that whatever is pent up in him has not been exhausted.

There were no further outbursts after I collected him, but that might be attributable to him being with me. He was clearly still a bit worked up. Sadly, the difference between whether he ultimately goes off is sometimes dependent on his perceived ability to injure: he may act as though he wants to hurt someone, but if he doesn't think he can do it (or if he knows that person can retaliate), he does not attack.

2010-10-31T20:57:00.001-06:00

An aspect of life with Anthony that is perhaps not as difficult to endure as some but is nevertheless wearisome, is that the scope of activities available to us as a family is limited to those where Anthony's antics will not draw undue attention. That generally means looking for outdoor venues with either a fair amount of ambient sound or plenty of space between people. More often than not, it means we simply avoid going out together. Or, we sometimes end up doing things that are ultimately uninteresting, like navigating a corn maze as we did yesterday.

We tried going to see Toy Story 3 at a second-run theater recently, thinking that if a large tub of (inordinately expensive) popcorn plus soda did not keep Anthony quiet enough even for a building likely filled with smaller children, we could at least take him to stand in the back for the balance of the movie. That turned out to be precisely what happened, but I discovered the extent to which I apparently no longer notice the noise Anthony makes when a younger father sitting in the back row asked if we could be quieter.

Our daughter was disappointed later because she has also tired of the trouble we have in finishing activities together. Whether it is a movie or one of our children's individual recitals or orchestra performances from which I must withdraw with Anthony, we are accustomed to the improbability of having a normal outing.

We of course have asked family members in particular to stay with Anthony while the other four of us go out. That duty has usually fallen to my long-suffering mother, who has endured bites and head-butts too numerous to count. Naturally, we don't want to ask her any more than absolutely necessary, and we try to take him to my parents' house (some distance away) only when my father is available as well.

The ideal situation would be to have an adult male watch Anthony, but we don't see that happening any time soon. We live in an area that has little in the way of public services in that regard, and asking acquaintances would present another set of problems because of concerns about liability if Anthony does happen to attack--unlikely with a male, but not impossible--and reticence of others in dealing with the unknown. I myself would be hesitant to sit with someone else's autistic child despite having one of my own; it is understandable that our friends would be even less comfortable with the idea than I am.

2010-10-13T20:00:00.014-06:00

Our younger son started playing soccer about a year ago, and immediately displayed something of a knack for it. His defensive play in particular compares favorably to that of the rest of his competitive league team, to the extent that we frequently see the opposing side score as soon as he is substituted out. That proficiency has come with a price, though; the coach abandons assurances to let him play other positions whenever the team falls behind.

I write this in a blog about Anthony because, although I mentioned in my last post that I don't compare him much to his siblings, I have wondered if Anthony also would do well at soccer if he were normal. I once, a few years ago, tried to have him kick a soccer ball at a park. To my surprise, he started kicking it with his instep. Most children kick initially with their toe--I still have to coach my younger son against that. Being a dad who loves sports, and hoping for anything that might engage an autistic child, I encouraged Anthony to keep kicking it. Alas, he became upset rather quickly when I tried to persuade him to continue.

I had not attempted to get Anthony to kick a ball since then, until I recently took him with me to his brother's practice. There, to keep him occupied, I passed the ball with him around the field while I simultaneously monitored the team's activity. Once again, he kicked reasonably well with his instep, and even sometimes with his outstep. But, he clearly had little comprehension of why we were doing it, and did not care for me urging him on.

Incidentally, I had taken Anthony with me so that my wife could volunteer at a school function. However, he made enough noise at practice that, even trying to keep him a distance from the action, he sometimes distracted the players. It of course didn't bother our younger son, but his teammates would stop what they were doing to look curiously. That's not what the kids need, and I might not welcome it if I were the coach. So, Anthony now stays home.

2010-09-20T20:23:00.001-06:00

We recently took our family to a fund raiser for Anthony's school. Although I am certainly supportive of the idea of bringing in money for the school, I have to get past my own reluctance to attend.

I am of course used to being around Anthony. I deal with him all the time, and I frankly don't think about him very much. I suspect that sounds somewhat unfeeling, but I don't know another way to otherwise cope with this human being that should have had his place in our family as the eldest child.

I try to let his birthdays slip by without notice. I avoid associating him with life events that other boys go through, and I minimize any time spent comparing him to his siblings. I no longer have a dream I wrote about previously, by the way.

But when I go to Anthony's school, I see many other children for the first time, and I have two emotions. The first is, perhaps surprisingly, sadness for the parents of those children. This is a circumstance in which I think misery does not love company. The second, however, is a resurfacing of buried feelings toward Anthony. It took a few years to get over the realization of what we had with him; seeing others similar to him only provides me with an unwelcome reminder.

I suspect that I am not the only parent with these issues, because my wife and I have noted that the attendance at these events falls far short of reflecting the number of children at the school.

On a slightly different but nevertheless related note, though, I am extremely impressed with the capacity for caring that the administrators and staff at this school have. I am also aware that there are those who work with special-needs children because they have one or more such children themselves. I don't think I could find it within myself to regularly deal with others in addition to my own.

2010-09-12T20:13:00.000-06:00

Anthony gave me two writing topics in one day recently, although I had not originally planned to write about the second because of its unpleasant nature.

The first incident came after I had gone to work. It was our daughter's birthday, and she had opened presents in the morning. My wife called me a couple of hours into the day to tell me she found that Anthony, who had been left unattended briefly while she did laundry, had apparently dumped out a small sample bottle of perfume incidentally included among our daughter's presents. Since the perfume had been free to us, cost wasn't the issue. However, our daughter liked the fragrance, so we felt sorry for her. It is one thing for adults to deal with frequent aggravation of this sort; we wish Anthony's siblings didn't have to go through it as well.

The second incident began with Anthony in the car after my wife picked me up from work. I noticed that he was passing rather foul-smelling gas. I customarily take him to the bathroom shortly after returning, but I realized the matter was unusually pressing this time when I saw him get out of the car with a wet spot at the back of his pants. I got him to the toilet quickly, but suffice it to say I thought it necessary to give him a bath afterward.

I wondered aloud to my wife about the cause of Anthony's extremely loose bowels. He has for two or three months reverted to infrequent movements, so I have occasionally given him stool softener or Miralax. Nevertheless, it had been probably a week since the last dose of anything in that regard.

We puzzled over that question, but had forgotten about it to an extent when we were later again discussing Anthony disposing of the perfume. What had he done with it? The scent was still lingering in the room, but nothing indicated he had poured it out in the sink or on the floor.

Then came the moment of clarity: Lack of evidence and loose bowels meant he had viewed the bottle of liquid as something to drink.

2010-08-31T17:35:00.000-06:00

Something is eating the tomatoes in our garden. Fruits that are reasonably ripe end up half-eaten before I can gather them. So I have decided to pick tomatoes at the first signs of ripening while still intact, and bring them inside to more fully mature. I anticipate they won't taste quite as good, but they will be preferable to being beyond salvaging.

However, "something" is eating the unripe tomatoes in our kitchen as well. I realized a couple of days after bringing in the first batch that they were gone. Did my wife or other children know what happened to them? No. Anthony was likely the culprit.

I brought in a second bundle a few days ago, and they were again gone the next day. That presents a little more concern than previously, because this group also contained a tomato with blossom end rot that I was specifically saving only for its seeds to plant next year. I don't know if there is any harm in eating such a fruit, but I think I would find it fairly disgusting myself, and would certainly dissuade Anthony from eating it if I were aware.

I am trying once again with more tomatoes. We have put them in a thin white paper bag on the counter. Anthony apparently has not noticed them yet.

2010-08-22T16:22:00.000-06:00

Having Anthony change his clothes can be a perilous undertaking. I have to ensure I get the match right the first time; if one article of clothing is too small for him, for instance, removing it in favor of another is certain to set him off. He usually does not become violent enough to put holes in walls or turn aggressive toward others, but I don't care to take that chance.

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An event outside recently gave us little time to eat dinner, so we stopped at a fast food restaurant to buy a bucket of fried chicken on the way there. I guess we have never actually had Anthony eat fried chicken, because I did not know that he would eat the bones. Chicken leg bones. We tried to get him to stop and instead eat only the meat, but that of course made him angry as well.

2010-08-07T10:43:00.005-06:00

My wife works part-time at an elementary school which uses a year-round format. Anthony's school is on the traditional schedule with a long summer break. Because our daughter is now out of elementary school and subsequently also on Anthony's schedule, we are having her stay at home with him while my wife goes to work.

We would not be able to have this arrangement if my wife's work did not allow some flexibility, however. She has already had to return home a couple of times to deal with him being violent. Then, yesterday, she had to return to attend to Anthony in the bathroom.

My wife had to leave for the day before Anthony got out of bed. We can ask our daughter to tell Anthony to go to the bathroom when he wakes up, and we can ask her to wash his hands when he is finished. Yet, for reasons we don't understand, Anthony will often not urinate even though sitting on the toilet unless someone is standing in the bathroom with him, telling him to go. And if he does not go, he will likely become very upset later before relieving himself on the floor. We cannot ask our daughter to stay with her brother in the bathroom. So, my wife had to excuse herself from work for a time to come home and make him go.

2010-07-27T19:38:00.007-06:00

It is our intent at some point to do . . . something . . . with the interior walls and doors in our house to keep Anthony from damaging them when he has a tantrum. We learned early on that repairing drywall was a futile exercise because Anthony targets again the same spots. To spite us, perhaps? It seems that way.

My wife came up with the intermediate strategy of covering holes with pictures, paintings, and--to create balance where it would otherwise not exist--handmade wall coverings and organizers.

We have new holes in Anthony's bedroom and door today, however, after a particularly bad stretch wherein he was determined to not only pull stickers from library books but rip covers off some of our own nicer books as well. My wife dragged him to his room and managed to keep the door closed for a bit against his wishes. She could hear him banging his head against the door and wall, but decided that was temporarily preferable to the alternative.

He turned his pulling and ripping obsession toward his wall after creating holes. We now have a few swaths of drywall with multiple layers pulled off. At least they are not visible to the casual visitor.

2010-07-10T17:18:00.003-06:00

Anthony has a skin fetish. I have had this on the list of writing topics for perhaps a year now, and have avoided addressing it to this point partly because I know I will not begin to do it justice here (and partly because there are things I really don't want to write). But, briefly, he often wants to touch bare skin. We have learned to keep him a safe distance from girls or younger women wearing lower-cut shirts, but both his sister and brother also have to deal with him aiming for their armpits and legs when they wear short-sleeved shirts and shorts in warmer weather.

Our younger son was practicing his violin on the scheduled day of his lesson recently when Anthony again tried to bother him. Son number two tried to move away quickly, and ended up cracking the neck of his instrument. My wife thankfully had the foresight to buy insurance with the violin. However, she found the dealer would not provide a replacement while they fixed it, so she went elsewhere and rented another so he could go to his lesson and continue practicing.

2010-06-21T19:45:00.003-06:00

I wrote in April that my wife and two younger children would be traveling overseas to see my wife's parents. They left at the end of May while I took time off from work. We had scheduled those vacation days prior to plans for the trip to cover some of the time Anthony would be out of school.

I have often recognized that I am probably very fortunate to have the association of my wife and other children to balance the strains of dealing with Anthony. We have wondered aloud how a family friend with an autistic son manages her situation with neither a spouse nor other children around. During the time by myself with Anthony for most of the 11 days until my wife and other kids returned, I received a taste of what her life must be like.

I am certain that my woes were aggravated with the abrupt and virulent onset of seasonal allergies, as well as my inability to get our clothes dryer to work after considerable time and energy spent on its repair in lieu of minimally enjoyable pursuits. Nevertheless, I had not anticipated the rather extreme stress from being with Anthony--and only Anthony--day and night.

All of the issues we commonly face with Anthony were suddenly compounded and magnified. No one around, for instance, to rely on momentarily so I could relax a bit and ensure he was not peeling stickers off library books. Or having a human being nearby but only receiving reciprocal communication similar to the head-nodding and teeth-baring of a horse if I ever said anything directly to him. It's slightly amusing, but not so much so if one starts to crave a spark of intelligent companionship.

I believe I made an egregious tactical error in not actively seeking out opportunities to be around others. If my wife ever needs to go away again for any stretch, I'm holding at least one of our other two children hostage. Or I will accept any and all invitations to dinner.

2010-05-16T19:05:00.004-06:00

I was pulling weeds outside yesterday when my wife, who was inside with a project requiring more focus than mine, asked if she could send Anthony out to keep him from disrupting her work. She cautioned me to keep an eye on him occasionally so that he would not pull the registration number stickers off our car's license plate. That didn't sound like too much to ask.

Of course, Anthony managed to remove a sticker without me seeing it. After some worried searching, we located the sticker on the ground, put it back on the license plate, and went back to our activities.

During my next stretch of weeding, I saw Anthony twice approaching another car parked on the street near us, and warned him away. Then I began to suspect I might have again missed seeing him near our own car, and went to look once more at the license plate. No sticker. I called in to the house to my wife, who wasn't immediately nearby, then frantically scoured the surrounding ground and even the garbage can, to no avail. When my wife came out after a few minutes, I asked if perhaps she had taken the sticker inside to ensure it stayed out of Anthony's hands. Thankfully, she had. Now we are hoping that the glue she used to re-attach it will hold.

2010-05-09T18:01:00.007-06:00

Anthony is unable to communicate with spoken language, and for the most part does not show an ability or interest in otherwise actively expressing what he requires. So, we are left to interpret other cues. It is an ongoing education for us.

Perhaps because I usually accompany Anthony to ensure he uses the toilet, he frequently chooses to enter the bathroom when I am using it myself. He was rather agitated in one instance recently, but I did not discern the reason until it was too late, and he urinated on the floor.

I was a bit more fortunate yesterday. He came in and soon began to hold his fingers over his ears, which I have seen him do when he is using the toilet. He was also touching the front of his pants, and generally acting in an unusual manner. I quickly had him sit on the toilet, and he had a bowel movement within seconds.

2010-04-18T20:02:00.002-06:00

My wife, daughter, and younger son will be flying overseas in a few weeks to see my wife's parents. My wife's father developed a degenerative disease a couple of years ago, and there has naturally been an increased emphasis on meeting her parents since then. We did so twice at a geographic middle ground for both sides, but his condition is now such that we need to travel to their home to meet them.

As implied above, however, Anthony and I will be not be going. Earlier airplane flights with him led us to realize that, even with medication, he will not make it very long without becoming disruptive or at least making his presence unwelcome to other passengers. Anthony is also far too much trouble to ask relatives to watch for more than a few hours, and none have the time available to deal with him for several days regardless. We considered looking for a group home for him so that I could join my wife and other children. If we successfully placed him, though, we would not be in the position to return quickly to address potential issues such as Anthony seriously hurting other people or himself. Perhaps more importantly, a normal child would not be happy being handed over for a period to people he doesn't know. Maybe Anthony's cognitive ability is sufficient that he would not be happy, either.

2010-04-05T18:45:00.011-06:00

My wife and I occasionally browse a local thrift store in hopes of finding the odd gem. We particularly favor shopping there for Anthony since he is hard on his clothing, and does not express preferences about what he wears. Because he is also considerably more corpulent than he should be, we were grateful recently to have the idea of women's jeans with elastic waistbands recommended to us. They fit him well where we otherwise have trouble finding suitable men's pants, and they have the added bonus of costing less.

On one of our trips to this store not long ago, I found a sweatshirt that I particularly fancied for myself. The color was right, the fit was right, it clearly had not been worn much, and it felt good. I wore it a few times, and each time had that singular feeling of satisfaction that comes with paying $3.00 for something I would not have considered buying at retail price.

It now belongs to Anthony. This sweatshirt was of sufficient quality that my wife matched it with a turtleneck for him when we were going out for a formal event with extended family. We went for pizza afterward, and Anthony used his shirt as his napkin as he customarily does. The result is about what it would be if I had worn it while changing an oil filter. Easy come, easy go. I went to the thrift store a couple of days ago with the hope of striking gold again, with no luck. I did, however, find several more inexpensive sweatshirts for Anthony.

2010-03-06T19:36:00.009-07:00

I was home alone for a while with Anthony today and went outside with the intent of, among other tasks, planting some radish and spinach seeds, hoping that is was not too early in the year to do so. I was addressing some other matters first, then realized that Anthony was traipsing around in the small area I had intended for planting, apparently enjoying the moist soil sticking to his shoes. I shooed him out and proceeded to painstakingly plant my seeds. Satisfied with the job done, I moved on to work with my compost pile. When I finished there, I went to put away my shovel and--naturally, I suppose--saw Anthony returning to his "stomping" grounds, where I had planted my seeds.

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Our 12-year-old daughter saw Disney's "Pinocchio" being shown on a television at a discount department store recently, and wailed, "Not Pinocchio!". She told me that, despite the volume being turned down, she knew exactly what the characters were saying. Later at home, she displayed for my wife and me a knowledge of script and scene that might not be matched by the original screenplay writer. She proceeded to duplicate that performance with dialogue from "101 Dalmatians". I ribbed her about the pathetic nature of her existence.

She has been subjected to viewings of certain movies to the point that she has memorized them because Anthony has watched videotapes of them at the exclusion of anything else. He rarely wants to sit down and watch movies anymore, but he was recently loitering in our family room near the TV, so my wife opened a drawer of DVD's for him. He specifically chose "101 Dalmatians".

2010-02-23T19:53:00.005-07:00

Anthony sneezes more often than the rest of our family. Now that I take the time to think about it, I realize that the cause may be our inability to teach him to blow his nose. Whatever the reason, we try to take precautions to keep him from spraying us, food on the counter, or our meals at the dining table, including when we do go out as a family to eat.

My wife created what we, for lack of imagination, refer to as the "sneeze blocker" for use when we eat. She bought a cardboard tri-fold and covered it with fabric. The inside material is a pattern of ladybugs, butterflies, bees and daisies originally meant to be used for a dress for our daughter when she was younger. The outside has caricatures of all the states with their capitals, chosen for the benefit of our other two children. Unfortunately, despite the inside material having no "up" or "down" that we can discern, Anthony invariably turns it upside down, diluting the educational value to his siblings.

We put the "sneeze blocker" in front of Anthony's place setting and hope that he will not be leaning around it when he does sneeze. He is also large enough now physically that we do have concerns about him sneezing over the top, although that has yet to happen. Because he doesn't care for having his view obstructed, however, he bends down the corners of the tri-fold, reducing its potential effectiveness. Having it in front of him also makes it difficult to know what he wants when he sticks his hand around the side toward us, since we can't see his plate or cup.

We went to a church dinner function a few months back, expecting to find a section of seating we could stake as our own to ensure that Anthony would not sneeze on us or anyone else. The event was apparently a hit, to the extent that nothing was available in that regard. My wife found a little table that was holding a display of some sort, and Anthony and I sat there. At a subsequent church dinner, we actually took the "sneeze blocker" with us to be safe.

If only we could teach him to cover his mouth when he sneezes. We tried some years back, and he actually did it--once. We were quite happy to see that, and were hopeful of more to come, but that has not materialized. Following the recent IEP wherein the school staff said they could see greater intelligence than we knew, I have put more effort into dealing with Anthony as though he really understands what I tell him. Without getting upset at him (because that approach hasn't worked in the past), I am telling him that he MUST cover his mouth when he sneezes. He seems to be developing a rudimentary understanding of the concept. He isn't yet covering his mouth, but he does sometimes put his hand over his mouth AFTER he sneezes and we look at him. Perhaps perseverance on our part will improve his timing.