My Journal

Prior to Danielle's diagnosis, I had never really written anything of substance. I never kept a diary or journal, I never really wrote letters. I had written a couple of small grants and the obligatory grant reports, some event reports required by the City of San Jose and of course, business letters to clients. Otherwise, I never consider my self a writer and I certainly, never thought that I would be blogging or writing in a public forum. Yet, here I am...I've been writing since around July 2003. I have averaged about three or four journal entries per week since that time. I probably have enough to write three or four books by now. Probably 80% of the content of this blog has come from my journal entries over the years.

  I began writing down my thoughts as a means of "self regulating" the anger, stress and tension that accompanied all of the new "unknowns" in my life. I tried counseling and it really didn't help me much. I realized that writing these things down and coming back to review them days or even months after the fact was tremendously healing and insightful. Often, I am surprised when reading something that I wrote several months ago; sometimes pleasantly, other times not so.
  When I started this blog, there were lots of things I wanted to do. However, there were two things that I said I would never do, my two blog rules

1. I would never use a blog to attack an individual or organization no matter what our differences. The key to any quality blog is integrity and if left unchecked, blogs can do more harm than good.


2. I did not want to put out a bunch of negative, unbridled emotional crap. There is plenty of that to go around. I wanted this blog to provide good information, resources and insight for people who are interested in the human condition. Not just about disabilities but about family, community, society; past and present.

 I know that I am not that unique when it comes to fathers. At least not amongst men who are connected to family and have strong family values. Perhaps my response to our situation is not/was not typical but I know the concerns, fears and questions must be the same as any other dad.
  For this reason, I am about to come very close to violating rule #2. I am going to publish part of a journal entry that I didn't think I'd ever share with anyone. Not due to any embarrassment or anything like that, but just because it is such a bummer! I was clearly at one of the lowest points in my life and I wasn't sure where to turn. I questioned everything; my love for my wife, my faith in god, my ability to lead my family, my strength of spirit, my will to succeed, my desire to parent. It was a terrible time but I got through it. I went in one side and emerged from the other, more determined and committed to the cause then ever.

Here is a portion of my journal entry from the summer of 2005:
...Danielle insisted on taking a bath so I ran her water and put her in the tub with some of her toys. Kathy was out with her girl friends so I had “Daddy Duty” for the evening. I left the bathroom, for just a few minutes, to check on dinner. When I returned to see how Danielle was doing, I found that she had defecated in the bathtub. There she was, lying on her back, floating up to her ears in her own waste.
  Of all the challenges that Danielle faces, this is clearly the most disturbing. “Disturbing?” The issues surrounding cleanliness are down right emotional for me. It brings me tears each time I witness these unconscious acts. I don’t know why it strikes such a cord with me but it is very difficult to express the feelings I experience when these things occur.
  I took her out of the bathtub and cleaned her off. I cleaned and sanitized the restroom and refilled the tub with clean water. I bathed Danielle and washed her hair twice. I drained the tub, once again, and bathed her thoroughly. Afterwards, I dressed Danielle for bed and put her in her room.
  I went back downstairs to check on Taylor and dinner. When I returned to check on Danielle, I found that she had defecated in her “Pull-Up”. She didn’t like the feeling of having soiled clothes on so she took them off and put them in the middle of the floor. Danielle attempted to clean herself with her hand and with the clothes in her room. By the time I returned to check on her, there was feces on the walls, in her bedding, on clothes that were spread throughout the room, in the carpet, on the door knob, all over her face and hands. I completely lost it, and I began to cry. I cried as I re-re-bathed her, I cried as I stripped her bedding, I cried as I scrubbed the carpets and washed the walls. This wasn’t the first time that this has happened. I really did not know what we were going to do or where we could turn for help.
  The next day, I talked to the father of a 12-year-old boy who hasn’t learned to use the restroom. “John” is a very handsome and likable young man but he just hasn’t mastered his toilet skills, yet. As I expressed my distress over Danielle’s transgressions, John’s father began to tell me his story. John is 12 years old and growing through puberty. The fact that he is still in diapers is a major obstacle to John’s advancement. There are very few Assisted Living Services or Independent Living Services that deal with adults who have this problem. John’s family is hoping that someday he will learn to use the restroom so he will have options for placement. The words of John’s father hung heavy in the room. Suddenly, my concerns about Danielle came in to perspective. Danielle was four years old and she clearly understood the concept of using the restroom. That was why I was so upset when she had these “accidents”; she knows better. She goes to the toilet 80% of the time. The 20% of the time when she doesn’t make it, the outcome is extremely unpleasant but John’s ongoing struggle brings this all into perspective.
  This is the most trying and difficult times of our lives and I know this is just the beginning. I just don't know where to turn for information or guidance. Of course, we keep hearing, “early intervention is the key to success.” But where were these “critical” early intervention programs.
Autism can be a really expensive disability to deal with. I’m sure that all disabilities can have a huge financial impact on the average middle class family. However, most disabilities have provisions in standard medical insurance policies. This is not necessarily true with autism. Many insurance carriers won’t provide coverage for occupational therapy, speech therapy, etc. Proper professional care and therapy for a child with autism can easily range from $300-$600.00 per week. Many families rely heavily upon the services provided through the local public school districts. Dental insurance can also be a challenge for families with children who have ASD. Recently, Danielle needed to have some dental work done but because of her autism, she was unable to sit for the procedure. Her dentist told us that we would need to have an anesthesiologist to assist her with Danielle’s dental work. We had no choice; we decided to pay the $1,050.00 cost and try to get reimbursed for the expense. Our dental insurer said that the anesthesiologist was a medical expense, not a dental expense therefore they would not reimburse us for the services render by the anesthesiologist. Our medical insurer wouldn’t cover the procedure because in happened in a dental office not at a clinic or hospital. Unfortunately, this is not an unusual occurrence for families like ours. For families who have limited resources, these types of expenses can be devastating. There needs to be some dialog with legislators and the medical community regarding the basic therapeutic needs of children with ASD....

Enough drama! That's about all that I'll share from this journal entry...