An affliction desperately seeking acceptance/Tick-Tock

Through facebook and the autism speaks page, it had a link to a blog by a mom describing a typical day for her autistic child at school. Her husband taking their son to a typical school event like every school. It is a sad state of affairs in our society, what we as parents of autistic children can so clearly see, intolerance by unknowing /indifferent adults. This childs classmates were being cruel and the teacher was sure it was because of what they learn and emulate of their parents.

We have had a particularly hard week or two. The DAN! doctor has us doing another round of diflucan along with some enzymes and fiber. We are playing ring around the rosey trying to get all of the meds, supplements and vitamins in him at the "appropriately" effective time of the day. You can mix this with that we are told ... you have to wait at least 30 minutes to eat after this then a certain amount of time after that ... our son is only interested in a limited diet so we cant mix his meds with other stuff (thank the Lord that he will take all of his meds, etc... through an oral suringe with minimal resistance otherwise all of this would be impossible).

We are trying the GF/CF diet as best as possible on top of the limited diet and he barely will sniff any of this horrid food. We have determined that there is a reason gluten is used in food ... IT MAKES STUFF TASTE BETTER!!! My wife goes to a TACA meeting last night and proceeds to hear why we should not let our son eat the few things that he will eat, because the natural sugars are bad for his yeast levels. We also hear another dose of why this should not be given the same time as that, etc... etc... etc...

Now, as an engineer, I have a reasonable amount of skepticism. All of the most opinionated stuff comes from moms of autistic children. I know everyone is well intentioned, but like all parents of autistic children come to learn ... what works for you may not work for us. You always have to take things with a grain of salt. However, that being said, there is nowhere to turn. No "credible" traditional professionals know anything. Our pediatrician is a great guy. He is clueless about autism. We have heard things and felt things that make us wonder if our DAN! doctor is all she is cracked up to be. I also did a little research yesterday and she is not an ARI recognized DAN! doc. She may follow all of the protocols to the letter, which she said she does, but the very small amount of baseline/watchdog there is, she does not have to answer to.

I sat there and listened to my wife cry last night after this long meeting of feeling like we still don't know what the hell we are doing. I don't have any good answers for her. I am supposed to be the "Man" of the house who has answers or at the very least is the rock that things can be bounced off of. Steady, steady ... isnt't that what a husband and father is supposed to be. I am at my limit. My wife and I had our 16th anniversary last week. One of our daughters is acting out. The other is drawing in some. There is no one thing that I can point to that is the overriding family challenge, other than autism. I covered in an earlier post all of the life difficulties, those are still the same. But I have finally discovered the largest and scariest black cloud over our family. The ever present tick-tock, tick-tock, tick-tock, tick-tock of autism on our 4 year old son and what the daily "lost" production means to our son's future years from now.

This blanket of burden to find the right med/supplement protocols, the correct foods/diet, the correct therapies, the correct everything to clear some of this fog from our precious son is draining our family and our marriage. Autism sucks. I hear people say that some day later in their families life autism was a blessing to them. I am not going to wax poetic, as if I had the capacity, but excuse me ... autism flat sucks.

I fear for our family. I fear for the future of my son. I fear for my marriage. I have a history of dementia and heart disease in my family. My mother had early onset dementia and guess what ... some studies indicate that is directly hereditary. Am I going to start fading away at 59 like my mom. Hell, that is 20 years from now. Am I going to be worthless to my future 24 year old son??? Will the daily lost time now make him less capable 20 years from now. If so, who is going to care for him??? His sisters, who have an extra weight to carry, already, from now till then.

No one truly understands what it is like to have an ASD child other than the parents of one. The therapists come and go. That is part of what has led me to this rant. One of our ABA therapists quit her job. My wife is getting an uneasy feeling about that establishment and if what they are doing is the correct kind of ABA therapy. All of the therapy costs a bloody fortune and after you drop between $60-$130 an hour on uncovered therapy, when do you determined that it is not the correct place for your child. Drop money on GF/CF foods that turn out to suck to the point of non-description. Meds and supplements that you hear conflicting opinions on.

I am feeling pressure like I have never felt before in my life. I would love to try it all, but there are so few options and so few dollars. When reality and life hit head-on to wants, dreams and desires ... what wins??? Unfortunately we are starting to change over to reality and life hitting head-on with desperation and fear. I am afraid that is a horrifing mix. Only a roll of the dice will determine the outcome.

I have also stated that I am a good moral person and a knowingly struggling christian. These are the days that make me not want to reach out to God for guidance and comfort, but to lash out in anger and seething ... or to question the existance???

Fear, desperation and borderline internal RAGE ... that is a bad combination ... but yet there still exists the tick-tock, tick-tock, tick-tock, Tick-Tock, Tick-Tock, TICK-TOCK ...