Wednesday, March 25, 2009

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.

No comments: