Yesterday, was a banner day for us. I had no idea what a gift the day would bring.
I prepared to go back to the same neurologist to make sure that my son was not having absence seizures. Two years ago, we went to a neurologist here and had an EEG done, only to be told by that neurologist that he did not know what it meant. There was an abnormal spike wave in the occipital lobe. I have documentation that says he did not know what to make of it. It left me feeling very odd; that the supposed "best" neurologist in town did not know how to read the EEG; I only knew that he found out we had seen a doctor in Arizona who had started Liberty on supplements and that I said we were seeing good results. As I recall, the supplements were things like Cod Liver Oil and Super Nu Thera vitamins. We had not done anything that would be considered back then "way out" like, God forbid, chelation. Basically, the neurologist was very nasty to me, saying he did not believe in any of that diet "crap." He said Lib could have a seizure, convulse and even die. He wrote a Rx for Diastat suppositories and told me that if he seizes to "ram it up his butt." I was dismissed. I felt abused. It was a terrible experience. I remember sobbing at home.
So, fast forward two years. I happen to have a friend whose child was diagnosed by a neurologist here in town, with whose name I was unfamiliar. She told me that he is apparently associated with the same office where we went two years ago. She told me to check him out as he is "open" to biomed treatments. I was skeptical but I got a referral and finally an appointment but not for a couple of months.
The other day, something told me to call their office and their was a sudden cancellation. We could get in the next morning! (insert twilight zone music here)
I went to the same crowded waiting room, had to fill out the same mountains of paperwork, depressed that Liberty would not sit while I balanced the clipboard on my knee. He kept touching everyone and making his noises and I thought, "Oh, it's bad. They are really going to tell me how bad it is now."
Finally back in the examination room, the door opens and in walks this 50s-ish, bronze-skinned man (from Brazil I later learned) in impeccable blue jeans and tennis shoes. He has salt and pepper hair and a well-trimmed beard and such kind eyes. He takes my hand in both of his and gives me a very sweet smile and thanks me for coming.
He motions for me to sit and he goes right over to Liberty and establishes rapport by playing with him and rough-housing, taking Lib's shoes off and stuffing them under his shirt, peeling his socks off and throwing them over his shoulder, etc. Liberty stops stimming and looks right at him. They high five. I am sitting in the corner quietly observing.
This man's presence fills the room. It is calming. I am safe.
He focuses his deep ocean blue eyes on me and the first words out of his mouth are, "You are the expert." I say, "Pardon..." He says, "Raising a child is like creating a work of art - or baking a cake, some we need to leave in the oven a little longer..." He goes on talking like this. I'm loving it! He says, "I want you to continue to do all that you are doing, because you know best, and you are doing GREAT. YOU are doing GREAT." He even talks about LOVE and SOUL. How I wish I had a verbatim text to recreate this awesome conversation. He even tells me that Liberty, like all children, is teaching us.
But, I'm almost fainting at this point when he says, "I am here for you and will be always. Anything you need, anything you think you might want to try, I'll do it. Any papers you need signed, anything at all, you can call on me. I am part of your support system."
I am rendered speechless.
Then he puts his clear glasses on and says, "I know why you are here." Now, I had not written out anything about my return visit only to say that I need to rule out seizures. He says he pulled up the records and the report of the EEG from last year. He holds it up in front of me and he says, "Spikes in the occipital lobe - are you kidding me? These are SO COMMON in all children. This means NOTHING. It is NOTHING." He tells me that with absence seizures, I would be seeing a lot of staring spells and goes on to describe things that clearly I have not seen.
I begin to cry, it's such a relief. He says he knows what I am going through and have been through and gives me a hug.
So we go on to talk about why Lib is not talking. He gets the chart of the brain out. I ready myself for a science lesson. Instead, he says, "Speech is in the left brain, so what do we do? We stimulate the right brain!" I innocently say, "We do? How?" He says, "MUSIC! DANCING! SINGING...SING IN A FOREIGN LANGUAGE, EVEN BETTER."
I told him that we were doing therapeutic listening with an OT. I told him about the Finding Nemo marathon Lib has been on and Liberty's sudden lurch forward in progress with scissors and pointing and saying "okay." He told me that kids do that, they plateau for awhile then they spike with new behavior.
I told him about the upcoming camp we have gotten Lib into. Turns out he is one of the people teaching the teachers for the kids autism camp at the university here! Is this not uncanny?
I float home. So many pounds have been lifted from my shoulders. I have to process this all day and night.
Wait - it gets better!
I looked him up on the internet and found he is a published author. There are two books on Amazon he has written!
Things are changing all around us folks. I have great HOPE.
OH...and he thanks ME for coming. He said, "No, thank you, I am honored."
If you missed this over at The Age of Autism, it is a wonderful article written by Katie Wright.
We took Lib to his new classroom for Kids for Camp, the summer program for children with autism. As many first days go, it was somewhat chaotic with a lot of people wandering around confused, but Lib was ready. First, he was happy he got to ride in Daddy's big truck, which he will be doing every morning and then I will be picking him up around 3 PM.
Yesterday, was a banner day for us. I had no idea what a gift the day would bring.
I saw a piece on the Howard Hughes Medical Institute for biomedical research located in Chevy Chase, Maryland on 60 Minutes. Apparently, Howard Hughes created the institute as a tax shelter when the air force threatened to pull all of their contracts with his company. Unbeknownst to him, it wound up becoming a premiere lab for biomedical research, as their are billions of dollars available for the scientists to conduct research without having to apply for grants and fill out mountains of paper work that can impede progress.
So, an update on Liberty's Finding Nemo marathon:
