I met someone today…
I was at the flea market (I maintain a booth there, selling denim wear and trading in Hot Wheels and other Diecast), working with a couple of customers looking thru my cd’s when I hear him coming. I glanced up the aisle, and could see him, sitting in a wheel chair, while a woman pushed him past the vendor’s displays. Every so often he would call out, a guttural noise, sort of a cross between a hoot and a yowl. Every so often he would lunge to one side or another, trying to grab something that caught his eye. The woman patiently kept pushing him along, and if she stopped to look at something she would continue to move the wheel chair, like a mother trying to keep a restless baby napping in a stroller.
But he was no baby. He was a child, maybe 9, maybe 12. And if she stopped moving, he would howl again. I stood looking at him, knowing him without ever having met him. He was a young boy with a very serious problem, one I am all too familiar with.
They kept approaching, and I maintained my attention, even as I took the $5 from a teen buying a Lynyrd Skynyrd disc. Most of the other people around this pair gave them wide birth. Some out of respect, others I am quite certain out of fear and ignorance. They drew up next to my booth, which she steered him away from quickly, lest he grab my cars. When she was beside me, I quietly said her, “May I ask?”
“He is autistic.” She simply said, and prepared to move on.
“I knew that…” I replied softly, just loud enough for her to stop and turn to me. Her eyes asked the next logical question, and I replied “I have a 7 year old boy with autism.”
I could see a quick play of thoughts and emotions race across her face, but she simply replied “small world.”
We got to talking, she and I, and then her husband joined us. I asked where they lived and was surprised to find they were from the same town as me. (I say surprised not because I did not expect to meet another autistic child from my town; I have met 17 to date, all under the age of 13, but rather because the flea market was 40 minutes and 3 towns north of my home.) I asked his name, and then they introduced themselves to me and I to them.
“Hi Eric,” I said, squatting so that I was eye level with him. He looked at me and then quickly looked away (you may know that autistic people do not like eye contact. For many it represents an invasion, an assault, some actually experience physical discomfort or pain from it.) I asked him “Can you say hi to me Eric?” He did not reply, but twisted in the chair, and I could see they had him strapped in, like a seat belt.
“It keeps him from running off or grabbing everything,” Mom said. She explained at how wild he was, how he was so very hard to control. I looked at her, and back to Eric, and I could see the toil that a difficult child can bring to a parents. And yet she was not in a state of shell-shock, neither parent was.
We talked of what had been tried, what they had done. They mentioned that secretin had failed them, that they were using Supra-Nu Thera (a mega vitamin mix) and they thought that was helping. I asked if they had tried the Diet and they said no, they hadn’t but they had heard a little about it. I suggested that they try removing all dairy, no milk, no cheese, no butter, no pre-processed foods containing milk solids for about 3 weeks, and see if his behaviors leveled out a bit more. Dad commented that he lived on cheese. I mentioned that if the removal of dairy worked, the next step was removing all gluten (wheat, barley, rye, spelt, malt, sometimes oats, corn and soy as well). “What is left to eat?” mom asked.
I asked again about the secretin, and dad said it worked for a very short time after the infusion, but then wore off. I asked if they were sure it was really secretin that they had used and he said you, Ferring (the good stuff, no longer produced, once it is depleted, it will be gone for good). If a child responds to secretin, it is a good bet they are casein and gluten intolerant, so the Diet would be a good bet for them to try.
We talked a bit about the school he was in, and they were dissatisfied with it. Their boy was buried in a profound MR class, no aid, no program, basically just let him stim or run wild for 6 hours a day, and try to keep him from injuring himself or other children. “But he is so smart!” mom hissed.
“They say he cannot talk, but he talks at home, just not all the time,” dad added. “We know another family in that class, and their boy says he talks all the time in class.” I related my boy’s experience in another school in the county, and how we had to pull him from it completely. The program he was in actually made his behaviors worse.
Then they asked me about my boy, if he was aggressive like Eric. I told them no, that taking him out of a bad program, and especially chelating him for toxic metals had brought a great deal of improvement. I asked them if their son had been tested for metals and they said yes, he had elevated lead (I already knew he had mercury exposure). We talked about chelation, and they asked what they could do to get their doctor to consider chelation. I asked who there doctor was, and when they told me I knew they would not be able to. Their doctor was the same one we had to leave because they had demonstrated clearly that not only did they not know anything about lead poisoning, what they told us about it was completely inaccurate based upon the information I had downloaded from the NIH, CDC and HUD websites.
I squatted again and said “Eric, look at me.” I began slowly to rock, not a great deal, just a gentle bobbing motion. This was a trick told to me by a friend who is one the Spectrum herself. “Eric…” He turned and looked quickly, then away again. I continued to rock “How are you Eric?” I asked, and this time when he looked, he saw me rocking. This time he did not look away, he watched me rock. “How are you?” I asked and his hand shot out towards my arm.
“Be careful, he’ll grab you!” his mom warned. I held steady, and Eric’s hand shot across the distance, and touched my arm. He did not grab or claw or hit or scratch, he just touched me, as if to answer me “Hi.” Then he looked away, and fidgeted in his chair to keep moving.
I stood up and I looked at dad. “Your child regressed after his shot didn’t he,” I said.
“Yes, after the MMR.” And then a flood came out of them, how he had been a normal baby, how he was developing, then after the shot he regressed. “We have videos of him as a baby,” he continued, and I found myself wanting to weep. I probably would have had I not bitten my lip very, very hard, and even now as I type this I can feel the hot sting threatening to spill out onto the keyboard in my lap.
“He regressed after the shot”. I had said. I do not have prescience, and I am no medical researcher. It was a 50/50 chance and I got lucky. The digestive problem is a good clue; many of the MMR children will have the leaky gut syndrome (Wakefield’s disease) and Eric had some very classic symptoms of it (chronic loose bowel, limited diet by choice, variable temperament prone to outbursts). We see these over and over with so many of the children helped by the Diet (although not all MMR children will have LGS and not all children with LGS are MMR damaged).
I then looked at their other child, a beautiful little blonde boy about 2. I asked if he had any tendencies they had seen and dad was quick to reply “We did get his MMR shot.” He had had a couple of the shots earlier, before they made the connection with Eric. Their younger son was past due for the MMR, and their doctor (my former doctor) was pressuring them to get it. I suggested they could get the single jabs, just the measles. Mom said the doctor said they weren’t available, but dad corrected her and said the doctor had said they would have to order them in. He implied the doctor meant it would be too much trouble to get them.
I had a suggestion to fix that… I told dad he should draw up a little contract for the doctor to sign. Something along the lines that if the doctor refused to order in the monovalent vaccines, and this beautiful little cherub also regressed, the doctor would agree to pay for all treatments, therapies and lifetime care for this person until such time as either autism was cured or the person died. (Think they would sign that?)
I asked them if they had the Net, and they said no, they kept meaning to get it, but it was hard to get the money together. I gave them my phone number and told them I had stacks of information for them if they wanted to read it. I mentioned there was a support group meeting coming up in Dec. for families with autistic children, and they said they already knew and would be there.
Then they left me, and moved further into the building. I could hear Eric howling now and again, until he was too far away to cut threw the general background clamber. I will meet his parents again if a couple weeks (1o days, 23 hours and 13 minutes, but who is counting?). I have met child number 18 in my town out of a population of about 5,000 children 0-18, and all of these 18 are under the age of 13. I have not met any here over the age of 13, because when these children get to be teens, they are most commonly sent away to live in homes. We do not have access here to progressive services for autistic children. We do not have a medical community which keeps abreast of the latest studies. After all, all the professionals here know that autism is a lost cause.
God bless the internet for bringing the real world to us. My boy has improved tremendously because I was able to find out about chelation for first lead and then mercury. There are others parents here too who have found help from the net, information about the Diet and supplements and educational formats which offer real promise for their children, instead of relying upon the defeated opinions of “professionals” who are working with a knowledge base 25 years out of date.
I met a boy today, autistic boy from my town, number 18 for me. I wonder when I shall have met them all?
(including leaky gut syndrome) is http://www.molocure.com/compare.shtml. I have been using it for several weeks for chronic IBS (suspect I also have leaky gut) and it has been extremely helpful. I had previously tried aloe vera juice in small quantities (a tablespoon or so morning and evening) and had found that helpful, but this pure derivative seems to have advantages over the juice — especially potency. I am thinking it may have some use for autistic children who have digestive disorders.