Is There A Physicist in the House?

I was thinking about the sensory issues that go with autism. I remember how hard it was for me to get my mind around the concept. When Liberty went for his therapeutic listening evaluation, the occupational therapist told me that Liberty does not know where his body is in space. (The reason why he cannot point to body parts). She asked me if he drags his hands along walls when we walks. I never really noticed, but after that evaluation, I realized he did. And that he was always touching people and things such as grocery carts, running his hand along the shelves of videos at the video store, getting a feel for the boundaries in a room. And, also, he used to just throw his sippy cup down anywhere and take off. The therapist said that when he put the cup down, to him it just disappeared.

Since getting occupational therapy and just his normal growth I suppose, a lot of spatial issues are getting better. But it got me wondering what Liberty's experience of Being really is. And that reminded me of an old Twilight Zone episode called, "Little Girl Lost." The story goes that a child was in her bed and then disappaered, but the family could hear her calling them. Then, the child's dog lept through a "portal" in the wall that was not apparent to the naked eye. They could hear the far off barking.

The episode is amusing because they immediately called a physicist! I suppose, in my foggy memory of the show, he happened to be a family friend. It turns out that the little girl had fallen into the fourth dimension. Eventually, they got her and the dog out. At one point, the physicist puts his hand through the opening in the wall and there is a scene where all you see is his hand poking through the other dimension.

Anyway, sometimes I think Lib's world is like that and every now and then he is really here, he sees my hand and I can lift him through; other times, he retreats.

I do have to say that after my last post in which I was focusing on the difficulties of our daily lives (intensified by the start of school and magnified by the lunar eclipse!), I met with Liberty's kindergarten teachers and got glowing reports about his progress. They said he was the most engaged ever after the last MB12 shot, doing age-appropriate things, following commands and starting to answer to his name. I was really elated by this news. I cannot say for certain that it is just the shots that are helping him. We are still doing some therapeutic listening, too. Then there is his normal growth, then maybe some natural chelation through his epsom salt baths. I don't know - its hard to pinpoint and that is so frustrating.

In the end, its all a Great Mystery. Maybe I should call a physicist.

Tennessee organization for free DAN! and other services

Here is the site for the free services. I cannot get in touch with anyone there. I have been speaking to the head of the East Tennesee Autism Association and she said she has been trying to reach them, as well. If anyone finds anything more about this place, let me know.
http://org.autismsolutioncenter.com/about/about.htm

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.

Back to School at Long Last

I’m hearing lots of “hallelujahs” and collective sighs from moms recently as school has finally started again (and God knows, I am one of them). For parents of special needs kids, the summer is a tough one to get through, unless you have camps or programs lined up and, even then, they don’t last the whole summer. Liberty attended ESY this year, but since school was out on May 22, he was done with the summer school session on June 26, leaving me with two whole months to fill since the school year started later this year on August 20. We missed the newly launched autism camp in town because at Liberty’s transition-to-kindergarten IEP meeting in May, the comments were made that, since it was a first time thing, all the bugs probably weren’t worked out yet and I got the impression it would not be that advantageous to attend. It was really downplayed to me at the meeting. What?! Are you kidding? It was plastered all over the newspapers this summer– the wonders of it, how there were ABA therapists there, first one of its kind, etc. Even teachers I happened to know were there. It was nauseating. I later found out that all of the kids were also potty-trained at the camp. Sheesh! Oh well, we went to Rhinebeck and got established with a top DAN! doctor so the summer was really quite remarkable and not a total loss in that light and I have to keep that in front of me. But, I still get my ire up when during the crapisodes we had this summer (thank you Kim Stagliano for this phrase), I tried to hire an ABA therapist to help me potty train. It didn’t work out. She didn’t show up after I wasted the entire day, and later when I finally got a hold of her said, “Oh, don’t you text message?” Apparently, she had text-messaged me she was not feeling well and couldn’t come. I was speechless. I STILL use the telephone, imagine that! Put me in the Ned Lud Society (basically people against technology)!

Liberty is working on his second week of ESE kindergarten and I must say it is going well. He is using his pictures to request food and loves school as far as I can tell. Last week I was in a kind of daze as my freedom had not really sunk in yet. I mainly reorganized the house and put things back where they belong which was no small thing. It always looks like a team of wild monkeys have ransacked the place. This week, however, I am starting to feel the glorious feeling of having TIME TO MYSELF. I actually went to the library yesterday alone and pawed over the books, lingered even. In a few minutes, I am going to go sit in quiet meditation and just BE for a little while before the golden bus pulls up at 2:30 and the spell is broken. I do work for a living, but I am blessed with a flexible job where I can work any time of the day at my computer, so some days I choose the morning to work, sometimes the evening.

Don’t get me wrong - I love my son beyond words – but everyone has to have some time to themselves and I am way past long overdue. I have been teetering on the edge of insanity for approximately two months now. Just being able to file my fingernails in peace is novel, or to read a few chapters from a book, go shopping by myself, do yoga in my living room, take a walk, breathe. All Heaven.

My hats are off to all of the parents with more than one child, and especially more than one with special needs. I only have this one little boy with ASD. He is the absolute love and joy of my life but he is nonverbal and does not sign and does not use a variety of cards (PECS). When he has a breakdown or tantrum, half the time I don’t know what is wrong. Its very draining. It seems I am always managing anxiety about his future in the background. I’m constantly trying to find new ways to view his autism, new ways to deal with it emotionally. I guess its like this: Some days are better than others. And, I can always count on the wonderful blogs I have found of other moms and dad who can relate to what I’m going through and can offer just the right thing to help lift me up when I’m about to spiral down. Thanks to all of you. As a friend of mine likes to say to me, “Together, we can make it!”

The Miracle of Methyl B-12?

Liberty said four words in speech therapy Tuesday! His therapist and I were stunned. He is going around the house saying a string of sounds, sometimes almost "sentences. " The only thing different we have done lately are the methyl B-12 shots. I spoke with a nurse at Dr. Bock's office and she told me she thought that this would happen. In the meantime, people who Liberty comes in contact with on a regular basis such as his therapists and teachers are all watching closely. Information about the biomedical treatment of autism is just beginning to spread to the mainstream, and our autism society here now has a biomedical division.

Recently, I spoke with the autism consultant for our county who oversees all of the autistic classes in the ESE programs around here. She told me that she had just gotten back from a CARD conference in which Dr. Bock presented on biomedical treatment! This is pretty cool considering we live in a small town in an area which, we thought, was not as progressive as the rest of the country.

I was marveling at the synchronous events taking place for us, then I remembered the dream board on which I placed some images and the sentence, "Liberty's A-Team of Support." I can see, looking back over the past six months, how the right teachers, therapists and doctors have entered our lives, demonstrating the Power of Intention. It's great!

More later...

Not for the Squeamish

I'm having a rough day today.My son is not potty trained and God, what an understatement that seems like today. Today I just happened to wake up and decide that I need an ABA therapist in here pronto to help me potty train Liberty before kindergarten (which starts in two weeks). We have spent the summer treking from therapist to therapist and, frankly, I think should have gone for the potty training first. Actually, I tried to hire a woman who did not have her ABA license yet but was supposed to be working on it and she was also slated to be Liberty's kindergarten teacher next year, at the start of the summer. I thought she would be just what we need, but she unfortunately turned out to be someone I would not want my child near. So, I just scrapped the idea and started to gear up for our trip to see Dr. Bock in NY.

All day, Liberty has taken off his diaper or his underwear. He has peed a couple of times. And, for the second time today, I just cleaned up smeared poopy hand prints from the living room couch, walls, bedspread and my hair and clothing. I am about to go insane. It's hard to give Lib consequences or rewards when he does not have anything that he is passionate about, except perhaps hanging out in my office and spinning in the chair. Finally, I put him in his room. He tried to escape a few times, but I think he has finally laid down for a nap.

You might be saying, where were YOU when he was doing all of this? Oh things like trying to take a shower, cook, answer a phone call, put on my clothes, etc. Normal things. I cannot be with him every second, and I check on him constantly, but no person who is by themselves can be there every single second unless you are sitting around doing nothing else.

Apparently, methy B-12 helps move your bowels! Thanks for that warning.

After all of the cleaning, scrubbing, scolding and just plain bitching and whining to myself and my poor husband (who I called repeatedly to share), I just feel old and tired. Then the old, "I didn't sign up for this, I know it didn't" thought. I need help and no one has returned my calls today. I know I need to regroup and reach for some higher thoughts before my mood goes straight down the toilet. I have cleaned up so much poop today and for the last 5 years of my life, I could be a poopologist. This actually made me laugh, at least.

To show just how far Abby Normal I have gone, I actually saved some of it for the damn stool sample I have to get. I have to obtain 5 test tubes of them to send off to the lab, complete with a mini shovel to stuff it all into the tube, and my thought was, "Gee, no time like the present..."

Off to salvage what is left of my day and change my poopy disposition.

A DAN! Doctor At Last

It has been two weeks since returning from Rhinebeck, New York to finally see a DAN! doctor. My sister gave us a book written By Dr. Kenneth Bock http://www.4ahealing.com/booklanding.html. We basically had to beg, borrow and steal to get there, but get there we did. I cannot say that we are none the worse for wear, however. We are still recovering.

Lib was diagnosed with autistic spectrum disorder at 20 months of age. Our story is a familiar one by now: Normal developmental milestones, healthy pregnancy, delivery, then......the MMR at 13 months, then the ear infections and antibiotics and at 17 months...eating down to nothing but graham crackers, no eye contact, no speech, etc. We have spent the last four years with therapists in and out of the house, then into the ESE school system, and now, finally getting to biomedical treatments for him. Lib has never developed speech, only a few words that seem to come and go. He just turned five years old in July and I panicked. Would he have gotten better if I had just gotten him to a DAN! doctor sooner? I'll never know.

The trip to NY on the airlines was okay. Liberty wore his headphones and he was fine. (He is doing therapeutic listening http://www.vitallinks.net/). It was the 5-day stay in the motel, however, that took a few years off our lives. The first night Lib was so wound up he bounced around the motel room until 5 AM. One night shortly before we left, my husband and I wound up driving him around the parking lot of Wal-mart at 1:30 AM to get him to calm down and go to sleep (and to prevent the Marriott from throwing us out). Usually extremely good-natured and easy going, this trip was asking way too much of Liberty.

Our first appointment with Dr. Bock lasted three hours and the doc actually read every word I wrote on the 15 page intake form! This has never happened before in all of my dealings with doctors. The next day, we learned how to give Lib his first methyl B-12 shot. We also went in for labs which was hell-on-this-earth and they were unable to get hardly any blood. The lab tech said that he was dehydrated (he had to be on a 12-hour fast); at one point she commented that she "blew a vein." The child was screaming while my husband held him down. We were sent home with prescriptions for blood tests and Lib's arm was black and blue. (I later learned that we have about 16 tubes of blood yet to siphon from the child). We have about 900 bucks worth of tests left to complete. The trip was not cheap but I have filed everything I can with our insurance, hoping we might get something back. Dr. Bock was wonderful, so I do feel satisified that we were able to get Liberty under his care.

To top the whole experience off, the trip home was a nightmare. Lib screamed on the way back to Atlanta, something new for him. He got up in my face and opened his mouth so wide to scream that I could see his tonsils. People on the plane turned and glared. My husband was able to calm him down as I was so worn out, I just broke down in tears, too. There was an older man sitting behind me who touched my shoulder and told me everything would be alright. Thank God for the kindness of strangers.

We made it throught that leg of the trip but when we got to Atlanta, the departure gates were entered wrong on the flight boards, so we trecked into the bowels of the airport and back twice. Next, they cancelled our flight altogether. We then stood in line for two hours praying we could find a flight as we ran out of diapers and food. Lib has been on a gluten free/casein free diet for almost three months, and I knew there would be no food we could just grab anywhere. It was like being in the Twilight Zone on a trip that would never end. Eventually, by the Grace of God we got home around 3 AM. Lib ran around the front yard in the rain yelling, "Yay, yay!"- about the only thing the little guy can say.

In the past few months of clicking around on the internet, I have learned so much from other mom's and their blogs...not only about treatments that have worked for them, or what's going on in the autism community, but especially in the realization that I am not alone in my feelings. That there are others who have experienced the same kinds of frustrations, sadness, insight, joy, rage, etc. Once, after I thanked one Mom for her help, she said sharing our common experience of raising special needs kids makes us kind of related. That feels right to me.

So, in sharing my personal journey with our son, my hope is that we can all be of help to each other in some way.

Namaste.