The Way Things Are

One of the best things for me about blogging is meeting other parents of kids with autism. Reading their experiences helps me to remember that there are other families going through the same kinds of highs and lows as I am. Within the blog community, I don't feel like such an outsider as I do with the rest of the world. I also need honesty, not to be placated with metaphors of Holland (http://www.creativeparents.com/Holland.html). Somehow, this has never comforted me.

Unless you are raising an autistic child or any special needs child, you understand that there are so few people who really get "the way things are" in your life. Reference Michele Illionardi's blog about daily life with her three boys with ASD, ( http://micheleiallonardi.blogspot.com/ ) . In one of her entries, she talks about how people ask her if her son will ever talk and that she has never known what to say. I get that a lot, too. Although, since we started the MB12 shots, Liberty is jabbering in such a way that it sounds like sentences, still, he is not using words. (He said a few words in speech therapy weeks ago, never to be heard again). He is really trying and occasionally he is able to say a word. But, its still very hard to communicate with him. He still relies on gesture and a few pictures. It's hard. I ask him questions, especially, "What's wrong?" Never an answer. I don't ever really know what is wrong - its all conjecture on my part. Maybe some intuition mixed with anxiety. Everyone wants me to tell them what's wrong with him when he cries and I usually don't have a clue. It could be one thing or lots of things. I don't know. Liberty's silence is deafening.

There are many people who pity him and me. "Oh, he's so beautiful, too. That must make it doubly hard." This is what a pediatrician here said to me. Most of the time I am so stunned by comments, I don't know what to say - have no snappy comebacks ready. Or, how about the barage of questions at the IEP meetings, especially this one, "What do you want to see Liberty doing by age 18?" When I questioned what they meant, they said they wanted to know if I was thinking of a group home or him living with me. I said, "He's only five years old." They then look at me like I am in denial. However, I have learned the magic words to say: "Functioning as independently as possible." They love that and then we can move on without much discussion. I don't want to run down the public school system - its just that for the most part, most of them have written off my son and other kids with ASD as disabled for life. There are a few people in the school, and perhaps sprinkled about our county, who have a major clue about autism, but most I run into do not. These are the people with whom I really don't want to waste my breath. I stay within my created community where it is safe. I could get beat up pretty badly by ignorant people "out there" and have.

See, for me, the jury is still out on my boy. All I know is he was developing normally, then one day he was not. And, its been this long, long trek (4 years) to get the wicked witch's broomstick to take to Oz and get him back. And, along the way, we've been through pediatricians, some well-meaning, some not. We had a neurologist who was completely abusive to me and at one point stated that "supplements are a bunch of crap" and John Kennedy's reports "read like a trashy novel." He actually "joked"that maybe my mercury amalgams had something to do with it, ha, ha. I should have reported him, instead I went home and licked my wounds.

Getting to a DAN doctor was like knocking on the door of Emerald City. The only thing that has been standing in our way from getting to enter, is affording the expensive lab tests that must be paid for up front ($1,000). So, yesterday, I borrowed the money finally from my wonderful father so we can GET ON WITH IT and try and get somewhere. After the blood tests, I can start on the $350 worth of supplements Dr. Bock recommended which are sitting on my counter mocking me. Hopefully, soon after we get a picture of where he is metabolically, we can start chelation of metals. I don't know what the outcome will be, but I need to be able to say to myself, Liberty, and God that I did everything in my power to help this child. I almost got him to a DAN! doctor in 2004, but Hurricane Ivan came and ransacked the town and life stopped here for awhile. I did take him to an integrative medical doctor in Arizona last summer. We started some supplements and did genetic testing, but not much was done in the way of labs. I decided I'm sticking to the DAN! protocol and speaking with all parents whose kids are in the process of recoverty. At least there is HOPE there.

The well-being of my child is what drives me every day. I wish I could explain that to people when they look at me and tell me how my life exhausts them. People say they worry about me, that I might collapse from all I do. It's just become so normal to make the special foods, monitor what goes in and what comes out, structure the day, anticipate tantrums, etc. and manage to have a job to boot. And, I do joke a lot about not having time but honesly time has become like the Salvador Dali dripping clock - time is just different now and so am I.