Monday, August 3, 2009

Looking Back: SPD, Autism, GFCF, and Biomed Over the Past Two Years



I'm not sure how to start writing this, or where to make this post lead, but I have been feeling for a while now that I need to write down some of our "story" with autism and with biomedical treatment. This has been a story two years (plus) in the making, and I know if I hold out too long, I will forget, and this story will be lost, unable to be read and heard by others who might benefit from it.

So I will begin and see where it leads...

Two years ago, in August 2007, my son was 2 years old and received a diagnosis of Sensory Processing Disorder/Sensory Integration Dysfunction.

At the time, I believed he might have autism. Now, two years later, knowing what I know now, I am convinced he had autism. But that was not our diagnosis, and I did not pursue it further because I was happy he wasn't autistic, so I went with what I had. Knowing what I know now, I would have gone to another resource for another opinion; somebody who might spend more than 30 minutes with my child and try to get a full picture of his abilities, or lack thereof.

Let me make a list here of all the things I can remember were going on with my son back then -- these were "the signs." And I'd like to add that many of these could be easily waved away as "normal" or "typical" or "that's just how 2 year olds are" or "that's just how boys are," but I urge you, if you are seeing some of these signs, to listen to your "mommy gut." I listened, but I did not listen hard enough, for I did not trust my "mommy gut." I didn't believe I had one; I was not a maternal-type person, I never had younger siblings, I didn't babysit much as a teenager, and I never cooed and awwwwwed when I saw babies. I was a full-time working mom, so the hours I spent getting to know my kids were decreased, and for some reason I just believed that other people knew more than me about my own kids. It sounds really weird and terrible to me now, but it's the truth. So when I brought up little concerns to my pediatrician and he said, "that's normal," I believed him. And when my brother (whose girlfriend at the time had an autistic child) brought up his concerns with my son's limited speech (which echoed my own concerns), I told him my pediatrician said he was fine, so that was that. I didn't even understand what my brother was saying when he kept repeating, "You have to advocate for your child," I just didn't know what that meant because I was not (yet) in "that world." My pediatrician said my kid was okay, that he passed the test, so he must be fine. And when my day care provider said "You need to find a new doctor," I was offended. What did she know? My doctor was fine, everybody in town went to him, and he is a nice guy. In fact, I remember telling my husband once how much I liked our pediatrician because he "made me feel normal" when I was worried that things were not normal. DUH! That was my "mommy gut" speaking, but I didn't know it, and I didn't trust it.

So anyway, here's that list:

- He didn't respond right away when we called his name. We had to say his name over and over to get him to look at us.

- He had speech, but it was limited. I remember on the way to our daughter's 2-year well child visit, I had found something online that said a 2-year old should have a certain number of vocabulary words and my husband and I laughed because she had so clearly surpassed that number. But on the way to that same visit with my son, I remember actually trying to count them because I wasn't sure if I could come up with that many words. ("Don't compare your kids," the pediatrician later told us when I brought up my concern with his limited speech. "Boys develop speech later than girls.")

- The speech he did have was labeling. He did not have language to express feelings, or at least he did not use them as such.

- He was not present, or involved in what was going on around him. In the car, my daughter and I would be chatting about something, and he would just be sitting there, kind of vacant. (If he wasn't screaming about something.) I could ask him a question, turn around and give him a smile, and he just wasn't THERE. His eyes were empty-like. It's very hard to describe, but if you're experiencing it, you probably know that nagging feeling like something is wrong, like your child just isn't "with you."

- Similarly, he was not interested in playing with other kids. He played by himself. For example, we went to a birthday party that was outside in somebody's backyard with plenty of things to play with, tons of space, balls, trucks, frizbees, swingset, etc. My son went inside, took a car and drove it from one end of the coffee table to the next, over and over and over and over again. I tried to engage him in conversation, "What are you doing?" "What color is that car?" "What does the car say?" but there was no response. It was just repetitive, very focused play with that car. No other kids were in there. When one came in and tried to play with him, my son screamed this anxious cry like his life was out of order and he didn't know what he would do. Nothing could interfere with what he was doing. Another adult came in and sat down. He tried to talk to my son, but he just kept doing the same thing with the car, oblivious to this man or to his mom sitting right there talking to him. I felt embarrassed. I knew it was strange but I couldn't really say why or what this was called. It was just odd, and the man sat back and watched. Now I wonder if he was sitting there thinking, "How do I tell this woman her son has autism?"

- My son could speak, as I have explained, but much of what he said was stuff he had heard on TV. I now know this is called "echolalia." It wasn't speech that he originated, it was like he was a tape recording of Diego or something.

- He had eye contact, in that he would sometimes look at you, but it was fleeting. He did not LIKE to look at you. One thing I remember well is that it was so hard to take a picture of him, and for this reason I really don't have many good pictures of him from that time. I remember I'd have to call his name over and over, making silly noises, or all of a sudden yelling or making a startling sound, and then he'd quickly look up and I'd snap the picture, and he'd look immediately back down again. My camera had this annoying delay, so it was very rare that I got a good picture of him. If you were to see the pictures I do have of him (the ones I didn't delete because they were of the top of his head), you would think, "Wow, he looks so happy and cute and is looking RIGHT AT YOU," but really what you're not seeing is how hard it was to get him to look up, how hard it was to push the button at the exactly right moment to factor in the delay so that it snapped RIGHT when he was looking for that split-second. I even remember sticking my camera down under his face and snapping pictures without looking through the viewfinder, just trying to get pictures of his face.

- I remember all of these weird, dazed, and kind of obsessive things he was doing. I would think he was asleep and would come upstairs 2 hours later and would find him passed out in a different room, with lines of colored marker all over his body. Like he had been up there for an hour just dragging the marker back and forth on his body in a trance, until he fell asleep. One time I went upstairs and he had taken a bathtub crayon and drawn a little green line in every single one of the little bathroom tiles, and then I found a trail of little green lines on every vertical post of the upstairs balcony. I can't imagine this little 2 year old awake at 10:00 in a quiet upstairs, in the dim light, obsessively putting green lines on tiles.

- I remember him doing similar things with lining up his cars and other toys. He would make a line of cars, end to end, and then would move one forward, then move each one up in turn to progress the line forward. We had lines of cars, big and small, all over the dining room. And while he was doing this, it wasn't like he was having fun, really, and he wouldn't proudly show us when he had made a line. Instead, it was like he was obsessed with this work, like the rest of the world didn't matter. It was like he HAD to do it, and if we knocked one over by mistake, or if we moved one from its position, all HELL broke loose and he absolutely freaked out. I have a video of him ON CHRISTMAS DAY when the rest of us are opening presents. Our tradition is to take turns opening presents, and there's this video where we're calling his name and saying "It's your turn to open a present! Look! Look at this big one! Wow, I wonder what it is?!" And then the camera turns to him in the other room lining up his cars. He doesn't look up, he doesn't even seem to know that we are there. His entire world is lining up those damn cars. And we just laugh and say, "Okay, who's next?" and my husband jokes that "One day he will be in logistics for the military."

- Speaking of cars, my son also did a lot of the "inappropriate play with toys" which at the time I didn't even know what that meant. In my mind, "inappropriate play with toys" sounded like he was being sexually inappropriate or something with his toys?! What?! But NOW I know that this means taking a toy and not playing with it in the way that you're supposed to play with it. So, for example, my son SHOULD HAVE BEEN taking his cars and cruising them along the floor saying "vroom vroom" and stopping to get gas and screeching to a stop and driving over pillows like a mountain. THAT would be "appropriate play" with a car. Instead, if he wasn't lining them up, my son had his car upside down in front of his face, spinning the wheels on it, over and over and over again. Or opening and closing the doors repeatedly. Or contorting his body to get his head on the ground, parallel to the floor, while he rolled the car back and forth in front of his eyes, over and over again. I remember bragging that my son was going to be an engineer because he was so interested in how things worked and how they were built! Ha! NOW I know that this was visual stimming, and he got some sort of input or stimulation from watching these things repeatedly go round and round, open and closed, and back and forth. (I remember very clearly a time we took a walk outside and somebody had a pinwheel in their yard. I ended up sitting on the curb for about an hour while my son squatted down and spun the pinwheel for an hour, not noticing anything else going on around him, or not wanting to show it to me. It was as if I wasn't even there. It was just him and the pinwheel for an hour, round and round.)

- Another way he would visually "stim" (although I didn't know it at the time) was to open up all the bottom cabinets in the kitchen and then line up his eyes right on the top of them, apparently looking across all 4 of them. The doors had to be JUST SO, and if we shut one of them, TANTRUM!

- Tantrums. Oh my gosh. I know all kids have tantrums. But the tantrums of a child affected by autism are different. My son was only two, and two year olds have not a care in the world, right? Wrong. This child was STRESSED OUT. He was anxious. His tantrums were anxious ones, the fight or flight kind. I don't really know how to explain it, but if you have experienced them, you know what I mean. They are the kind of tantrums that don't just make you want to give your child whatever they want because you don't want to hear the crying anymore, they are the kind of tantrums that make you want to give your child whatever they want because if you don't, you are afraid they might kill themselves, or kill somebody else. I was afraid of my 2 year old, and I'm really not joking. I was not in control of my child, and my child wasn't in control of himself either, it was this OTHER, this PHANTOM psycho thing that was controlling our lives. They are the kind of tantrums that could draw blood when he would bite me in sheer panic, or draw blood as he took my cheeks in his claws and grabbed so tight as he pinched and twisted and scratched my skin, with this look of terror and rage in his face. And what would bring on these tantrums? Who knew?! They could happen at the drop of a hat. The breakfast wasn't served fast enough. He found a pea in his mac and cheese. I turned right when I usually turn left. I walked down the stairs before him. His car got out of its line. I never knew what would bring it on, and that, frankly, made me feel how I imagine an abused wife might feel. So you try to make sure everything is JUST SO and you watch like a hawk to foresee anything that might cause him to blow so you can fix it just in time. You walk on eggshells and when things are going smoothly for a couple of hours, you learn not to drop your guard, not to get too happy or feel too blessed because at any moment you will be slapped down again by this phantom tyrant living in your home.

- Going out in public. What? Going out in public?! Impossible! My husband and I would take turns doing the grocery shopping and running errands so that one could stay home with the kids. I honestly could not take them out in public without feeling absolutely petrified and stressed out the entire time. I would see other parents with their kids, happily enjoying some outing together, and even if that child were whiny or having a tantrum, it was nowhere near what I was dealing with.

- My son did not seem to understand things. I have kind of mentioned this above, but I want to go a little deeper. For example, he would watch TV and just sit there in front of it. We would watch Dora the Explorer, and Dora would ask things that you were supposed to answer, and he would just sit there. I don't think he even knew that something was being asked. It was really weird. I remember when I took him for an evaluation at "Child Find," our county's free assessment program to help identify kids who would need special assistance in school later on. The person doing the test would say things like, "When it's cold, I put on my ...." and my son just sat there. "When it's cold outside, what do you put on?" and he just sat. I remember thinking in my head, "Oh my gosh there is no way in hell he knows what you're saying to him! Is he supposed to be able to respond to that? Because he can't do that. If you pointed to a coat in a picture, he could say coat, but what you are blabbing to him probably sounds like a foreign language."

- Speaking of foreign languages, my son could not repeat a word and have it come out the right way. This always seemed really weird to me. I could say, "Say cup" and he would say something like "Toca" or something COMPLETELY different. It was like the sounds came into his ears, fell into a brain full of cotton candy, and came out his mouth all flossy and wrong. Sometimes I thought he was kidding, but he wasn't (plus he didn't really know how to "kid.") I would praise him for at least trying and never told him he was wrong, but it always struck me that he COULD NOT repeat my words correctly.

- Kind of similarly, my son could not figure out what you were pointing to. If you said, "Look! There's an airplane in the sky!" and you pointed up to the sky, my son could not find the plane if his life depended on it. If you pointed out the window and said, "Look at that bird," he would look in a totally different direction. It was so frustrating, but he just could not figure out what you were pointing at.

- Sensory Issues. It was the crazy sensory issues that got me online night after night, trying to figure out what was going on with my son, and that lead me to then also Googling "autism." There were so many sensory issues, but here are some I can remember...Seams on clothes. My son would constantly run his fingers along the seams of his clothes, like he was reading Braille. If he had a button on a shirt, his fingers were constantly there, fondling or holding the button. If his shirt had an ironed-on decoration, he would run his fingers along the lines where the iron-on stopped and the t-shirt started. He did this obsessively. He was both focused and absent-minded when he did this. But it got to the point where I had to switch to all-cotton, no-decoration clothing because it just got so intense it both annoyed and freaked me out at the same time. It just seemed to kind of take over his whole being, making him dysfunctional and unable to do other things because he was so "into" the seams on his clothes (or mine; once I switched his clothes, he started running his fingers along my seams and decorations). Fingernail clipping. Clipping my son's nails were impossible. Just impossible. I know many kids don't like fingernail clipping, but, again, for my son this was something that brought sheer terror to his little body. I started reading books with him while I clipped his nails, and it would take close to an hour to get it done because it was like I was torturing him. Haircuts were just as traumatic, and were to the point of people commenting negatively, not just laughing sympathetically and saying, "Oh, poor thing" it was like our child was somehow bad, as he sat there screaming and flailing about while my husband held him down. Light. Every time we went from inside the house to the outdoors, my son would wince as if in pain and bury his head against my body, or turn his head. Noise. My son was over-sensitive to noise. He could hear something a mile away and would stop everything to listen to it. He would absolutely SCREAM when I turned on the radio in the car, or at home. "TURN IT OFF! TURN IT OFF!" he would scream, again, in this anxious, fight or flight type of way. It didn't matter how loud it was, it was too loud for him and he just could not STAND it! His day care provider told us that he wouldn't sing and dance with the other kids when she turned on the music. Instead, he would go to a corner and roll his cars back and forth on the ground. (But this came out from the daycare provider as that he was "playing nicely with his toys." I think because he was able to "play" by himself and stay quiet for hours, he was somewhat easy for her. She didn't have to entertain him. He would just "play nicely with his toys" in the corner for hours, and she didn't have to worry.) Taste. My son did not eat normally. Not the type of food he ate, I will get to that later. But the way in which he tasted things. My son would SHOVE food into his mouth in a crazed manner, not chewing. He choked and gagged continuously. He did not take a bite, he shoved. It was as if he was under-sensitive in this department, like he couldn't feel that there was food in there unless it was filling his every crevice of his mouth. He would shove an entire cereal bar in his mouth. An entire cereal bar. And when he was doing this, it was not happily, like you would think of a regular 2 year old happily eating food they loved. It was that frantic, anxious, fight-or-flight thing again. I had to watch him constantly to make sure he wouldn't choke. It was frightening. And then, at other times, he was under-sensitive. When I put peas in his macaroni and cheese, he picked them out. And if one mistakenly got into his mouth, surrounded by all that macaroni, he would throw up. And then the tantrum. Ugh, it was just awful. Temperature. I remember one winter we had a beautiful, gentle snow, and we all bundled up to go out and enjoy it. My son was terrified. He touched the snow and felt the cold, wet stuff, and absolutely freaked out. No snow angels for this boy. I had to pick him up and carry him as I took him on a little walk up and down the sidewalk. He clinged to me and looked around frantically, hating every moment. We quickly got him inside, and that was the last time for at least a year he went out in the snow. On the days I had to get him from the house to the car, if it was raining or snowing, I had to have his head, face, neck covered. If one little drop of rain got on his skin, it was torture for him. Pain. My son was both insensitive and oversensitive to pain, or at least he felt pain from things that are not painful to most other people. My son would hide under the table, or the chair, a lot. When he was small enough to walk under the table easily, I remember he would bump his head on the table all the time. Constantly. He never cried. He never even seemed to feel it. But, yet, if he got water on his skin, he cried out in pain. If his swimming suit got wet, he freaked out and immediately screamed "OFF! OFF! OFF!" and would pull at it to get it off, regardless of where he was. (Cross swimming off the list of things to do!) But yet the bathtub was okay. Something about the wet fabric on his skin was torture. When he would get a drink of water from a water fountain and some of it dripped on his shirt, he freaked out and tore it off. I had to bring a second shirt with me everywhere on the chance something got on him. Vestibular. My son was unsure of where his body was in space. He could not tilt his head back, for example in the bath to get the shampoo off his head, or when drinking out of a cup, he wouldn't tilt his head back. He hated the swings unless somebody was under him, giving him a sense of place. He hated merry go rounds, and couldn't handle going up and down and around and around all at the same time. He got nervous climbing the stairs, especially if they were "open" stairs.

- Yet he would drool nonstop and this did not bother him. I would say "Water in your mouth" to try to remind him to swallow. His daycare provider put him in bibs even when it wasn't meal time to catch all his drool, and these bibs were soaked.

- Sleep. This poor boy could not fall asleep at night. It took TWO HOURS every night, and I truly am not exaggerating. Two hours. Every night. He would toss and turn and toss and turn. He would try all positions, all over the bed. He would wedge his body between the bed and the wall. He would pile all of his toys (cars, airplanes, and books, *not* soft stuffed animals) on his bed and flop himself belly-down on top of it. Most nights I would lie down with him, trying to soothe him to sleep. He didn't want me to sing (noise). He didn't want the fan on (noise). He didn't like the aquarium with the lullabies (noise). He would just toss and turn and flop and flip until two hours later, he exhausted himself.

- Poop. My son had some serious bowel issues, but for some reason I didn't get it. He was either constipated, pooping out hard balls of rabbit poop, or he had slick, black, diarrhea. Most of the time, though, he had this fluffy mushy stuff that filled his diaper. It was kind of like soft-serve, or mashed potatoes. And the smell was horrendous. A toxic smell that you could smell from other levels in our home. For some reason I guess I thought this was "kid poop" and that only adults had formed poop. I really don't know what I was thinking, but this frothy fluffy mush didn't concern me. What did concern me was when my son would get constipated and wouldn't poop for days. I started realizing that about once a month, this would happen, and I'd get a call from his daycare provider after a few days of no poop that my son had a fever and was whimpering all day, non-stop. I had to go pick him up from daycare and take him home. And one he got his poop out, he was immediately fine. It took me a while to figure this out, but what must have been happening was the toxins from his stuck poop were getting absorbed into his body, and his body was fighting it like an infection.

- Skin. I remember one well child visit when my son was younger, and the pediatrician was practically climaxing on his skin. "It's so soft!" she was saying. "I've never felt skin that soft!" She kept rubbing and carressing him. Fast forward a year or so, and he had eczema behind his knees, weird rashes in his diaper area, and red pimply bumps all over his torso. His skin was a mess.

- Food. In addition to the shoveling of the food I explained earlier, my son's food choices started to get really, really limited. He drank a TON of milk. I bought gallon after gallon of milk. He drank it with gusto, which I was proud of. I knew that many kids drank juice all the time and it was apparently bad for your teeth and had too much sugar, so I was all proud that my child liked milk instead of juice. I had no idea it could cause him problems, or that maybe it was contributing to his crazy congestion and coughing. My son liked bread, pasta, and crackers. He didn't like pizza but he did like cheesebread. At one point my kids were splitting a box of cheesesticks from Dominos, 1/2 a box each. I remember dinners when all I could get him to eat was bread and milk. He liked peanut butter and jelly. He did not like meat. He did not like vegetables. He didn't even like fruit, except for applesauce and grapes (although I was worried about choking). His diet was terrible. He didn't like to chew; I think his body/jaw lacked the strength to do so. So even chicken nuggets or hamburgers were out of the question because he just couldn't chew them. He liked soup, but you had to be prepared when the soup dripped on his shirt. It was just nuts.

- Breathing. My son could not breathe well. He had this constant cough that became so common that we didn't even pay attention, and he would go through his days with this terrible congested cough that would strain his face and keep him from breathing normally. I can't believe it now, but I actually gave him Tylenol cough syrup for this -- that red dye crap that has since been taken off the shelves for causing deaths. OMG! He would wheeze and breathe rapidly, and there were many, many nights that we stayed up till the wee hours of the morning with him because he could not breathe, and therefore, he could not sleep. When he got wheezy like this, he got crazy too. Very wired and hyper, like because his breathing was on overdrive, so too needed to be his body. It was awful, constantly awful. But for some reason we just thought it was normal or something. His pediatrician said he didn't want to diagnose him with asthma because he was too young for that diagnosis, so they diagnosed it as "Reactive Airway Disease" and put him on nebulized Pulmicort every morning and every night, plus albuterol every 4 hours when he was actively coughing. A few times they gave him an oral steroid, prednisone or maybe orapred, to help him breathe. Every time he got a slight runny nose, he started the coughing. He was coughing all the time. So we had to start doing these nebulizer treatments twice a day, and let me tell you, a sensory kid does NOT do well with a mask on his face for 30 minutes a day. We had to lay him across our laps face up, put one arm behind our backs under our arm, hold his other arm with one hand, hold the mask with the other hand, and bend over him to hold his legs down. He screamed and fought and went nuts-o every time. We did this for a year, and it sucked.

- My son had no core strength. He sat with his legs bent outward, like a "W." He couldn't figure out how to run well, with his arms and legs working in unison and back and forth. He didn't have the strength to do a wheel-barrow walk. He was skinny. He was weak.

- My son did not sweat. His extremities were cold, and when he was doing strenuous exercise, like playing on the playground, he would get really flushed, but he would not sweat. Not one drop.

- Hoarding. My son hoarded things. He always had to be carrying something in his hands. Always. Usually it was a little car or train, one in each hand. He would walk that way, he would sleep that way. And that, while I thought it was weird and got me looking into sensory type issues, seemed okay. But it got bad. It got to the point where my little guy was trying to carry multiple toys, a couple pieces of garbage, and a toy animal all at the same time in his two little hands, a little mound of crap. One thing would slip off and fall, so he would bend over to get it, and then another thing would fall. And on and on it would go.

I remember many nights, I would hold him in my arms, swaying back and forth in his bedroom trying to get him to fall asleep. He would look RIGHT in my eyes, but he was not there. His eyes were empty, they were not connecting with me. I stared right back at him and, although our faces were inches apart, our worlds were miles apart. My boy was just not THERE. And I remember crying, and just whispering to him over and over again, "I'm sorry. I'm sorry. I will help you. Mommy will help you. I'm sorry." But I swear I did not know why I was sorry. And I did not know what I wanted to help him with. Everybody told me he was "fine," and so why did I need to help him? But those nights in his room, those nights with my lost, empty boy, looking at me blankly in my arms. THOSE were the nights that my mommy voice was speaking to me. I *knew* something was wrong, and I told him I would make it better. But these words came out of my mouth and I did not know why. Perhaps his soul was speaking to me in ways that his eyes and his mouth could not. Perhaps he was telling me so loudly that he was *not* fine and that he needed my help. Thank god I listened, and thank god it was not too late.

I remember one day watching as my son held his little mound of stuff, anxiously, getting increasingly agitated and frustrated that he couldn't carry it all, with the little pieces of trash (albuterol foil pouches) slipping off the mound. He was at the top of the stairs and it took him a few minutes of this anxiousness and effort before he got his little mound of crap settled. Then he wanted to get down the stairs but couldn't figure out how to hold onto the railing while holding onto his crap. And he just broke down and was crying like his little 2 year old life was over, and it was there that I realized he had become dysfunctional. I could no longer sit by while my pediatrician and others told me he was "fine." This boy was NOT fine. He was unable to sleep, unable to breathe, unable to poop, unable to play, unable to eat, unable to understand, unable to speak, and now he was just unable to come down the stairs. I had to get help. I called the pediatrician and said, "It's not getting better." And that was that. We were referred to a developmental pediatrician, and I got on the LONG waiting list for an appointment.

In the meantime, I became obsessed with Google. I spent my nights trying to figure out if he had autism. I would watch YouTube videos of kids with autism, and I would just cry and cry. I could not believe that my little sweet child would have this terrible future, would be non-verbal, and would not be able to show or receive love. Then I would go to another website about autism and I would feel better, thinking maybe he didn't have autism. Then I would find another site and would see my son in all the lists of symptoms. It was a sad and scary time.

I told my daycare provider that I thought he had autism. "NOOOOOO!" she said! She was absolutely adamant that he did not. So I printed out a sheet on autism in Spanish (she is a Spanish speaker). I didn't know what it said but I hoped it talked about some of the red flags. I gave it to her and asked her to read it that night and let me know the next morning what she thought. "Okay, Tori, I will read it. But he doesn't have autism."

The next morning when I dropped him off at her house, I said, "So? What do you think?" And she said slowly, "Yes....I think maybe he does." I remember sitting in my car and driving 1/2 a block and then just not being able to see anymore through my tears. I was absolutely devastated. It's one thing to think something yourself, it's another thing to have somebody agree with you. I remember going to work and just not being able to hold it together. I cried the whole day on and off. I remember I went in to tell my co-worker, and I started off with a smile on my face, but then I immediately started crying, and I had NEVER cried at work before. She hugged me in her office, and I said, "But I know why this is happening to me." "Why?" she said. "Because I am going to do something about it."

I didn't know why these words were coming out of my mouth, but I felt certain that God had chosen this path for me for a reason. Because I am a person who can make something happen. I didn't know what I could or would do, but I knew that there was a reason that this thing had chosen ME, and not somebody else. I would do something about it. Whatever that meant.

I got a call at work one day that the developmental pediatrician had an opening on August 1st due to a cancellation by somebody else. So on August 1st we went. She spent about 30 minutes with him, and the entire time he screamed, "I want to touch the blue one!!!" in reference to the blue tap on the sink and "I want to wash the hands!!" While he screamed about "the blue one," the developmental pediatrician just sat there in the sterile hospital room and asked me calm questions about how old he was when he first walked, and when he said his first word. I grew increasingly stressed out. I didn't know what to do? Why is she still talking to me when my son is having this crazy tantrum? Should I let him touch the blue one? Would that make me a good mother or a bad mother? Is this normal for a kid to obsess over a blue tap like that? Why don't they seem phazed by this? So I stood up and went to the sink, and I let him touch "the blue one." The rest of the appointment, then, I was bent over the sink, holding him in my arms so he could touch "the blue one," which he turned on and off. On and off. But he had stopped crying.

The developmental pediatrician told me that he was not autistic because "he has good language" ("I want to touch the blue one!") and because "he looked me in the eyes once."

"But he might have some sensory issues."

So she wrote me a prescription for occupational therapy, and that was that. I felt really confused. I was stressed out to the max. I was happy he didn't have autism. I was upset that he had a "disorder." I was embarrassed that my son couldn't sit in a doctor's office like a normal kid. I was unsure of my competency as a mother. I was annoyed at this doctor for not being kind or feeling in any way. I felt ripped off, cheated, saved, and alone. I put my little boy in his car seat and drove home from the city, looking back at him while he blankly stared out the windows, held onto his little toys, and drank his milk from his sippy cup.

I got him into occupational therapy, and I didn't understand it. Nobody evaluated my son any further. Nobody really told me what sensory processing disorder was. All I knew was that he was supposed to jump in the ball pit, and I was supposed to give him "heavy work" at home, like carrying 2-liter soda bottles or large bags of dirty laundry. I like occupational therapy because I felt like I was doing something to help my son, but I also hated it because after every session he was in such a terrible mood and would have a tantrum every time. The appointments took him out of his routine, and it just threw him off for the whole day.

I found a Yahoo group for SPD. I stayed up late every night reading posts and asking questions. One mom, Anna, told me about the gluten-free casein-free diet and biomedical intervention for autism. My son didn't have autism (supposedly), but I learned that many kids with autism also had sensory issues. So I joined the other Yahoo group she recommended, the GFCFKids Yahoo group.

And I became obsessed with that group, again up all night reading and posting. We started the GFCF diet in October 2007. It was hard, and he didn't want to eat anything I gave him. He just screamed and tantrumed for days it seems. But finally he ate. And 3 days after we started, we saw differences. He was looking in our eyes. The change was dramatic. He was asking us questions. He told me one night in bed, "Mommy? I'm happy."

I was hooked.

Now, it's 2 years after we got the SPD diagnosis. I am considering making another appointment with her to get re-evaluated because I am sure he would not qualify for the SPD diagnosis anymore. My son is doing AWESOME and every single one of the issues I wrote in that list above are GONE. Absolutely GONE.

I cannot believe our good fortune. I can't believe how really easy it was, even though it wasn't easy. The thought of him still being like he used to be makes me shiver, and I can't believe he has gotten so much better like this, simply by changing his diet and giving him supplements.

I love this little boy something fierce. I love him like a son, but I also love him like he's my savior. Like I'm his. I wonder if he knows all that I have done to help him get to this point? It doesn't matter at all, but I wonder if he remembers how he used to be?

The other day I dug through my drawer at work and found some little Post-It notes where I had scrawled my son's ATEC scores, and I just did the ATEC again. Check this out:

MY SON'S ATEC SCORES
October 2007, baseline.......................49
January 2008.................................41
October 2008..................................3
August 2009..................................3


What have we done to cause all these changes?

GFCFSF diet, removal of other IgG foods (eggs, peanuts, walnuts, coconut, rice, tomato, peas, sunflower, safflower), digestive enzymes, supplements, and yeast control. We do not have a DAN doctor. The only test we did was the IgG test. We drastically reduced and then completely stopped occupational therapy. I am thinking of going back one day to show the OT how far he has come!

At this point, I feel ready to get a DAN. I want to get some tests done and see what else could be done, just to make sure I can help keep him healthy and be aware of any weak spots I may not already know about.

I am thrilled with how far he has come. I am amazed, and I am helplessly in love with him. Yet I am also sad, very sad, for what was lost, and what ill health he may one day suffer because his health was weakened for approximately two years.

12 comments:

Anonymous said...

thank you for sharing this Tori....our stories sound the same. I am sure that is the universal song ASD moms sing. It touched me and gave me hope.

mommyof2 said...

WOW! Congrats to you! I would LOVE to ask you some questions. I took that ATEC deal you posted....my son is WAY worse off then yours. But then again my son is non verbal and not potty trained too. he is 4 yrs old. Do you have an email. We are about 2 mo into the diet....would love to get some input! Thanks for posting your son's story!

Christina Stearns said...

Tori,

I am so sad that your son's symptoms were grossly overlooked. Reading through the story, it is painfully obvious that he definitely should have had speech therapy, and probably physical therapy too. You are a true warrior -- to move on with the assumption (correctly so) that he had autism and proceed from there. You have healed him. And your feelings about your son really echo what I feel about my little guy Alec. (((HUGS)))

Hetha said...

Thanks for this amazing post Tori! What a lucky little guy (and cute as a button) you've got there. His story just fills me with hope. I've got a little boy, born in Aug. 2005 who is undergoing testing right now. He is very complex as he was also born with CMV and is deaf and has mild CP. We're working with a DAN doc and are seeing improvement, but not as much as I had hoped as it has been nearly a year on the GFCF diet and the supplements. Now I've got renewed hope! Thank you Thank you Thank you!

Crystal said...

My goodness, his ATEC score is awesome. Sounds like you're in a good place.

I have added your blog to my autism blog list. I'd love for you to add mine, too. :)

gwen said...

incredible story. Loved it! DD is 4.5 and been gfcf for appx. 9mths with an infraction last week that made me a believer. I'm trying to go soy free now and possibly corn. Do you have any tricks on getting an asd kid to try new foods? She is so limited in her diet. I'm willing to do anything, but they still have to put it in their mouth and swallow. ;o(

Wonderful Day Weddings said...

Hi and thanks for sharing your story! I am also an autism mama. My son is four and he was diagnosed at 3.5 years old with highly functioning autism. He is just on the spectrum but with the help of the GFCFSF diet and supplements we hope to get him off! Right now we are struggling with a way to get his supplements in, generally I try to sneak them into his juice but digestive enzymes and pro-biotics taste so darn bad!!! Anyway, I'm rambling, thanks for all the info and here is a link for a GFCFSF grocery shopping list. This book has saved my life! http://www.ceceliasmarketplace.com/gluten-free-casein-free-soy-free-guide.html

Contacts Not Working or Loading said...

Wow what a story. Considering the GFCF diet. Always wondering though how to get more fat into this type of diet. My son needs to gain weight.

jOi-C said...

wow wow wow...reading this is like reading a story about my son...everything even the reactive airway disease and the whole pulmicort and having to pin him down...the only difference was that my son got the speech and occupational therapy at 3 yrs old but I had to push for it with the help of CMS because we felt like we were in crisis mode all the time with the overstimulation and tantrums.

today is our first day towards GFCF...we're starting with dairy/casein free first....not too familiar with the yeast issues, I just came across it today so I definitely want to look into that too..

Katie said...

Thank you for sharing this! It is AMAZING how much my son is like your's was! We are GFCFSF and are ready to start testing to see what else we need to do.

You are an amazing Momma! Gives me hope.

shari said...

Exhausting, heartbreaking, encouraging, and shocking... this is what I felt reading your account. My children do not struggle with this, although one daughter is just now untangling some health issues at 28, but I have several HS level students who could be in this mix.

Thank you for loving your sons so much. I wish all the parents of my students did so.

Call Me Crazy said...

I found this blog by accident but I found myself crying while reading about your son. My son Connor is also autistic, diagnosed 8 months ago. It's been a hard road but we enrolled him in an autistic daycare and started him on a gfcf straight away. The difference has been amazing.

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COPYRIGHT. All words and images on "Tori's GFCF Blog" (unless otherwise credited) are (c) 2007-2009 Tori's GFCF Blog (http://gfcfblog.blogspot.com).
DISCLAIMER. I am not a doctor. I am not a nutritionist. I'm just a mom who has been implementing the GFCF diet since October 2007 (and soy-free about 5 weeks thereafter). Please do not rely upon my blog as your sole source of information or advice. I only offer my personal experiences for your consideration and can not be held responsible for any adverse reaction or experience you or your child may have should you choose to try something I have tried. Remember that every child is unique, and what works for mine may not work for yours.