I have this week off from work.  I went out today with my younger two children (who are currently "off track" from school) to run errands, and enjoyed being with them; I rarely get to do that.  I contrasted that later with the feelings I have toward Anthony when he got off the bus delivering special-needs children.
When he isn't around, I am in normal mode, so to speak.  As soon as I deal with him again, I go into alert status.  Normal children won't get off the bus and immediately hit themselves in the head to show some displeasure that I can't determine.  There is no threat of being told that they bit another child on the bus.  I have yet to see my other two children come home wearing different clothes than they wore when they left because they wet themselves during the day, nor have I seen them come home wearing diapers because their teachers could not get them to use the toilet and feared just such an accident.
My other children are generally pleasant.  If they aren't, I can discuss with them their concerns and help them find resolutions.  The positive effects of Anthony's Abilify medication have been short-lived.  Although he has yet to put a full hole into a wall again, or bite or head-bang his siblings or mother, he is certainly more unpleasant than otherwise.
I am grateful for my other two children.  I am glad to be their father.  I like being in the position to try to direct them to lead happy, productive lives.
I find it difficult to say that I am grateful for Anthony.  I imagine their are better people out there in the same situation who can indeed say they are grateful for their autistic children.  I know that I should love Anthony even though there is generally no positive feedback whatsoever, but I am not that good a person.  By and large, I think I do my best to tolerate him, but little more.
I am not certain that I can explain the reason for that.  I know that there is very certainly a disconnection between the feelings I had for him when he was first born and now, and it is very difficult to think about those previous feelings.
It did not matter to me whether our first child was going to be a boy or girl.  In fact, I was leaning toward hoping for a girl.  But when I found that we were going to have a boy, I started to think about how I wanted to help him along in life.  I looked with great anticipation toward fulfilling my role as a father.  I think that made it even more difficult than it otherwise might have been when he showed signs of autism.  It was as though I was being robbed of the relationship I was going to have with my son.
When Anthony was much younger, but well after his autism had manifested itself, we became acquainted with a lady who had a temperate demeanor belying her relative youth.  After some time, we learned that she and her husband had a son before the three daughters we knew them to have.  He had died after a short illness before his first birthday.  We were obviously very sorry to hear about this.  I have wondered from time to time, however, which is worse: losing a child to death early in life, or losing a child early in life to low-functioning autism and having the reminder of what might have been constantly with you.  I don't know.  My first thought would be the former, but I just don't know.
Death is very final in mortality.  Perhaps our friend would have chosen to have her child remain alive with autism so that at least she could see what he would look like growing up.  There is a positive to that, I suppose.  And I guess that, as long as the child is alive, there is always an infinitesimal hope that things can be better.  But we have the ever-present salt in our wounds with Anthony.  If I were pressed to respond whether I would be better off with Anthony as is or if he were no longer with us, I would have to admit that I can't see myself missing this version of him very much because of the negatives constantly associated with him.  That is a sobering assessment, but it is sadly true.

I often have trouble sleeping, and a recent night was particularly bad. So, I stayed home with Anthony on a Sunday while my wife and other two children were out. We have a small TV and an old VCR in Anthony's room into which he sometimes inserts tapes he likes. However, we had just been given one of those movies on DVD, meaning he could watch it in the living room, where he prefers to be. He hasn't figured out how to operate a DVD player--it's a little more difficult than shoving in a tape and seeing the machine turn on automatically--so I put the movie in and started it for him, then went to lie down.

After a while I heard him leave the living room to come to shut doors that were open. That didn't surprise me. Later, I heard him shutting doors downstairs as well, and that did surprise me somewhat, but I suppose it indicates the extent of this obsession. It is as though a warning light comes on in his head to locate open doors and close them at any cost. He can actually get quite agitated if we try to dissuade him from doing this, but closing doors alone is generally only a very minor nuisance. He sometimes goes beyond that by opening doors that are shut, turning the lights on, then closing the doors again. He will even open closed doors to go into rooms and close any blinds that are open. Those two actions eat at me because I prefer not to needlessly increase our utility bills. But, letting Anthony know that I am upset can sometimes have undesirable consequences. Quietly turning off the lights and re-opening blinds can keep him from putting new holes in the drywall. Speaking of which, we plan at some point to buy plywood to nail over the existing walls in his bedroom. It will be extra work and expense with texturing and painting, but it will give us peace of mind to not forever be concerned about dents and holes.

I'm sick of dealing with Anthony. Admittedly, the problem isn't just with him; there are other issues we as a family deal with as well that trouble me, but they can generally be traced to his autism.

Anthony today urinated twice on his bedroom floor and again smeared feces on his shirt after being left on the toilet a short time. Up until recently, I could leave him in the bathroom for extended periods--because it has often taken him a while to do what he needed--and go to check him later. That was a more efficient use of my time than staying there with him. I don't know if Miralax has cleaned him out and he will now be able to have bowel movements regularly like most people. I suspect that is not the case, but I have certainly been wrong about the effect it would have on him to this point; Anthony has gone these many years with nothing working very well. For the time being, anyway, I will take something to read and stay in the bathroom with him.



I was working on tax returns today and was pleased with the amount we would get back. We finally bought a house this last year, having been unable to for many years due to either indebtedness or lack of income to match housing prices where we lived in one of the more expensive regions of the country. We have been finishing a basement room and are looking for appropriate flooring. I thought that the amount of taxes to be returned to us would easily pay for the flooring and additionally allow us to do some other things necessary for the house, and, in fact, it would. However, we have been dipping into our meager savings to cover common medical expenses (mostly dental), and my wife suggested that it would be wise to replenish those savings for a small cushion first.

I am weary of not having enough money. The reason I write this is that our situation is likely not unusual for parents of autistic children. We, like many others for their children, did everything we could to provide Applied Behavioral Analysis therapy for Anthony when we learned that it could make a significant difference. We diverted all the money we could, even going into debt to pay for therapists (my wife learned the therapy techniques and did what she could as well). In the end, we ran out of resources, and Anthony was not progressing so much that we could justify continuing at our minimal rate. Later, as we were paying off debts, my firm sold its assets to another and released its employees. I got a new job in another state two months after my severance had expired--we lived with my parents after payments stopped--but our income did not exceed normal living expenses to the extent that we could keep up with debt repayment. After eight long years of trying, we were left with no alternative to bankruptcy.

That choice was anathema to us. We felt we should do everything in our power to avoid that, as indicated by the length of time we spent fighting it. In the end, however, we wondered if we should have pursued that course years earlier. Not doing so has put us significantly behind where we should be with savings for our other children's future education, and for our own retirement.

I was planning to write about a more pleasant observation regarding Anthony before anything negative occurred again, but I realized this evening that Miralax, the praises of which I have been singing, is the culprit behind the disagreeable episode yesterday.

After I wrote last night, Anthony again had a bowel movement and again soiled his fingers and shirt. That incident occurred once more this evening. As I wiped him after the toilet (I imagine by now it is not a surprise to anyone that he is unable to do it himself), I noticed more and softer matter there than is usually the case. That apparently bothers Anthony, and his reaction to it is to try to clean it off himself with his fingers. It would be great if he understood what the toilet paper was for. I guess I will have to decrease the frequency of the laxative, which may mean we are back to essentially where we were before with several days between movements.

I have been trying to regulate Anthony's toilet functions with Miralax, and am finding that it works. I am not sure that I will ever find just the right schedule to use--once a day, once every two days, once every day but at half dose, or perhaps something else entirely--but it is certainly an improvement over other measures we have taken. Perhaps because I don't have it quite right yet, though, Anthony sometimes has gas that smells as though he has diarrhea. That is of course a concern; he is not someone who will necessarily make it to the bathroom if things come too quickly.

Today was such a day when he had the particularly foul smell. Thus, when I had him go to the bathroom after returning from school today, I decided to keep him on the toilet for a while even though he urinated quickly, which is usually a sign that he doesn't need to have a bowel movement. I was eventually rewarded--that seems a funny choice of words, but I will take that reward--when he did have a bowel movement after about twenty minutes.

When I checked him, however, I found the front of the toilet seat with indications that he had touched and wiped some fecal matter. I examined his fingers and confirmed this to be the case. I also noticed stains on his shirt (which is not unusual, as he often wipes food on his clothing), and their smell verified that he had touched that as well. I removed his clothes and took them to the washer after running a bath for him.

We thankfully rarely deal with this particular issue. I was extremely upset the first time it happened, when Anthony was perhaps three years old. At that time, we were of course still fairly new to autistic matters, and so had not imagined something of this nature occurring. We were unable to toilet-train him until he was five years old, so he was still wearing diapers at this time. We were eating dinner, and I noticed Anthony had something that looked like chocolate on his finger tips, and, for a split-second, I thought about licking them to see what it was. I am forever grateful that I paid attention to the worst-case scenario in my head and chose to smell them instead.