When any child struggles, it breaks a parent's heart. The struggle may be minor, but in that moment when your child is frustrated, scared, hurt or ill, it seems really, really big because to that sweet little being you would lay your life down for, it's absolutely huge. In the moment, it is hard to get perspective on how much worse a situation can be because your heart is hurting for your child. When I would watch Ryan cry, cover his ears or run in fear from things that seemed so innocuous to most children it would break my heart. I swear I felt his fear and anguish. My first question was always, "How can I help him?" Okay, fine that may have been my second question the first one most of the time was "Oh my gosh, is he autistic?".
I have described Ryan's tactile defensiveness. His dislike of scratchy clothes, tags, unexpected touch and pretty much anything having to do with day to day hygiene. With a sensory processing disorder unfortunately many, if not all the senses are affected. Some senses are more affected than others. I remember in my daily, or should I say hourly, quests on the internet to convince myself Ryan would have MY dream of a wife, two kids and a successful career, I read a story of one child who's sense of smell was so affected that he would vomit every time they walked into the grocery store. Now, as much as I detest grocery shopping, I detest vomit even more so I have always been grateful that although Ryan has the sniffer of a blood hound, I am ever so grateful he has a very tolerable, strong stomach.
Although Ryan repeatedly groans about the smell of my cooking (honestly that may have nothing to do with a sensory processing disorder), his heightened sense of sound was off the charts. I remember when he was just a little guy, we were outside playing and he kept saying "airplane, airplane" so of course I look in the sky and not an airplane to be seen or heard. I proceed to ask if he wants an airplane toy. "No, airplane, airplane". Well, after we both became frustrated (I'm pretty certain at a very early age he could sense my stupidity) I just proceeded to ignore his airplane chanting. A few minutes later, what do you know, an "airplane, airplane" appeared. Seriously? That plane was nowhere in sight and although a fan of headbanging hair band concerts of the 80's, I do not suffer from hearing loss, unless of course I'm watching Downton Abbey, but I'm pretty sure that's more tuning people out than being hearing impaired.
Although a heightened sense of hearing, made the Bionic Woman a super crime fighter, for my Ryan it was a curse. Needless to say, if he can hear an airplane coming from miles away, imagine what a hair dryer, vacuum cleaner or lawn mower must sound like to him. When Dan went anywhere near the tractor, leaf blower or any other power tool, Ryan's chubby little legs would carry him as fast as they could inside the house. The vacuum cleaner caused him so much stress that I just vacuumed less and less (I convinced myself that my slovenly housekeeping was all part of my plan to protect my son from such anguish, although the hair dryer was fired up daily in my bathroom. You be the judge.). Fireworks to Ryan, were the most horrifying sound on the planet. Yes, many children are afraid of fireworks, but most do not count down the hours until the Fourth of July ends or become so indignant when someone has the colossal nerve to use fireworks, firecrackers, bottle rockets on any day other than the Fourth of July. For years I considered jumping the Canadian border the first week of July.
Sounds became such an anxiety provoking fear that I knew something had to be done. Our assistance with Early Intervention had ended due to Ryan being past the age of three and no further services were put into place due in part to his mother's poor choice of friend, Denial. Although some things truly were better, Ryan's fear of noises and sounds were not. And if I'm AWEnest, the areas that I thought had improved may have been only wishful thinking. Even Denial couldn't convince me anymore that my beautiful little boy wasn't suffering so I called our favorite OT, Miss M and asked for advice. She lead me to Mozart.
When you are fearing an autism diagnosis for your child and all your internet researches show you "no cure" or "lifelong disability" you are willing to try anything to at least help ease the struggles your child is having. For some, it's a gluten free casein free diet. For some it's Applied Behavioral Analysis (ABA) (which most experts believe is the most effective tool). For some it's chelation therapy which is a process that removes excess murcury and other metals from the body for those that believe autism is caused by mercury exposure. Every child is different, every family is different. I am not here on my soap box declaring what is good and what is bad (I'm not Jenny McCarthy for goodness sakes). I'm describing what worked for my son, for our family. I for one, was not a believer in the mercury exposure theory so no chelating agents were going into my boy's body. Although some believe the gluten and casein free diet really help their kids, Ryan's picky food habits consist of all things gluten and to our family that disruption and potential hunger strike was not worth the possible gain. And since Ryan's diagnosis at the time was Sensory Processing Disorder, ABA wasn't even proposed to us. What we decided on was Tomatis Therapy or what Dan at the time called voodoo. And we didn't even have to travel to the Bayou to do it.
I have described Ryan's tactile defensiveness. His dislike of scratchy clothes, tags, unexpected touch and pretty much anything having to do with day to day hygiene. With a sensory processing disorder unfortunately many, if not all the senses are affected. Some senses are more affected than others. I remember in my daily, or should I say hourly, quests on the internet to convince myself Ryan would have MY dream of a wife, two kids and a successful career, I read a story of one child who's sense of smell was so affected that he would vomit every time they walked into the grocery store. Now, as much as I detest grocery shopping, I detest vomit even more so I have always been grateful that although Ryan has the sniffer of a blood hound, I am ever so grateful he has a very tolerable, strong stomach.
Although Ryan repeatedly groans about the smell of my cooking (honestly that may have nothing to do with a sensory processing disorder), his heightened sense of sound was off the charts. I remember when he was just a little guy, we were outside playing and he kept saying "airplane, airplane" so of course I look in the sky and not an airplane to be seen or heard. I proceed to ask if he wants an airplane toy. "No, airplane, airplane". Well, after we both became frustrated (I'm pretty certain at a very early age he could sense my stupidity) I just proceeded to ignore his airplane chanting. A few minutes later, what do you know, an "airplane, airplane" appeared. Seriously? That plane was nowhere in sight and although a fan of headbanging hair band concerts of the 80's, I do not suffer from hearing loss, unless of course I'm watching Downton Abbey, but I'm pretty sure that's more tuning people out than being hearing impaired.
Although a heightened sense of hearing, made the Bionic Woman a super crime fighter, for my Ryan it was a curse. Needless to say, if he can hear an airplane coming from miles away, imagine what a hair dryer, vacuum cleaner or lawn mower must sound like to him. When Dan went anywhere near the tractor, leaf blower or any other power tool, Ryan's chubby little legs would carry him as fast as they could inside the house. The vacuum cleaner caused him so much stress that I just vacuumed less and less (I convinced myself that my slovenly housekeeping was all part of my plan to protect my son from such anguish, although the hair dryer was fired up daily in my bathroom. You be the judge.). Fireworks to Ryan, were the most horrifying sound on the planet. Yes, many children are afraid of fireworks, but most do not count down the hours until the Fourth of July ends or become so indignant when someone has the colossal nerve to use fireworks, firecrackers, bottle rockets on any day other than the Fourth of July. For years I considered jumping the Canadian border the first week of July.
Sounds became such an anxiety provoking fear that I knew something had to be done. Our assistance with Early Intervention had ended due to Ryan being past the age of three and no further services were put into place due in part to his mother's poor choice of friend, Denial. Although some things truly were better, Ryan's fear of noises and sounds were not. And if I'm AWEnest, the areas that I thought had improved may have been only wishful thinking. Even Denial couldn't convince me anymore that my beautiful little boy wasn't suffering so I called our favorite OT, Miss M and asked for advice. She lead me to Mozart.
When you are fearing an autism diagnosis for your child and all your internet researches show you "no cure" or "lifelong disability" you are willing to try anything to at least help ease the struggles your child is having. For some, it's a gluten free casein free diet. For some it's Applied Behavioral Analysis (ABA) (which most experts believe is the most effective tool). For some it's chelation therapy which is a process that removes excess murcury and other metals from the body for those that believe autism is caused by mercury exposure. Every child is different, every family is different. I am not here on my soap box declaring what is good and what is bad (I'm not Jenny McCarthy for goodness sakes). I'm describing what worked for my son, for our family. I for one, was not a believer in the mercury exposure theory so no chelating agents were going into my boy's body. Although some believe the gluten and casein free diet really help their kids, Ryan's picky food habits consist of all things gluten and to our family that disruption and potential hunger strike was not worth the possible gain. And since Ryan's diagnosis at the time was Sensory Processing Disorder, ABA wasn't even proposed to us. What we decided on was Tomatis Therapy or what Dan at the time called voodoo. And we didn't even have to travel to the Bayou to do it.
Tomatis Therapy is a listening based therapy that has proven effective in kids and adults with various learning disabilities. The goal was to help Ryan become a little less sensitive to different stimuli while also improving his auditory processing and both his expressive and receptive language. I can give a very brief layman's description here but for more detailed info go to www.tomatis.com. Ryan was given special headphones with a microphone, and a vibrating mechanism to conduct sound waves to the bones of his body. The Tomatis program helps children to use their ears instead of bone conduction to recognize sounds and shut out irrelevant noises. When a child like Ryan has such sensitive hearing, not only can it cause anxiety and fear, but it can impair learning as well as social interactions. Imagine if the humming of the flourescent lights in a classroom sounds like a jackhammer in a child's head, he is going to have a hard time learning that 2+2=4. Likewise, if sounds and noises are so bothersome, chances are a child whose hearing is so sensitive is going to play alone under the quiet slide blocking out the loud world instead of playing with a bunch of rambunctious, boisterous pre-schoolers on the jungle gym. Tomatis Therapy was going to help desensitize my boy's world and a wonderful occupational therapy group, whose staff members have become like family over the years, would administer the music (much of the music is Mozart concertos and Gregorian Chants) which is specially treated with the Tomatis Effect of varying frequencies. Although it may sound like "voodoo", you have to understand that the ear does so much more than "hear". The ear catches sound waves that the brain reads as impulses which causes your body to react according to what you "hear". A soft lullaby evokes a different response in your brain than firecrackers in a school garbage can (I never did anything like that). The ear also helps the body maintain balance. Literally and figuratively.
Dan was a little reluctant at first especially when he heard the cost of the therapy and the fact that our insurance would cover none of it. I suggested we sell his recently purchased two seater convertible and he quickly decided we could come up with the money. After a quick call to our pediatrician, who was familiar with Tomatis Therapy (and warned us the results can vary), he assured me it couldn't "hurt" Ryan, so we were ready to begin. My biggest concern was how in the world will they get my son who adamantly refused to wear a hat and hated to have his head touched put on headphones that were secured by a sweatband. I expected to be kicked out within 10 minutes, but nope, apparently my boy's love of music could make even headphones and sweatbands tolerable. So, while my boy listened to Mozart and played with toys in a fun kid friendly gym, the Tomatis Therapy went to work.
There were three phases to the therapy and the first phase was 15 consecutive days (excluding weekends) for two hours a session. That was then followed by a 3-5 week break with another 8 days worth of sessions following the break. Another 2-3 week break was then followed with the final phase which was 8 more sessions. This was seven years ago so chances are I have screwed up the schedule somewhat, but you get the idea. It was pretty intensive and my boy loved it! There were highs and lows, but all went according to plan. There was a period of aggression following the second phase as Ryan "woke up" and became more alert and social, but he had a lot of catching up to do. The final phase leveled everything out, including the aggression. When it was all said and done, it seemed like this protective shell Ryan once lived in was starting to crack and emerging from the shell was the beautiful little boy I longed to know. I distinctly remember sitting at Panera Bread and having a real back and forth conversation for the first time with my 4 1/2 year old son and getting in the car and crying...happy tears.
Ryan still has some sensory issues, but compared to before, they are vastly improved. Ryan may never love the Fourth of July, but he sat through an entire Disney World fireworks display (twice) while smiling and covering his ears with only some mild trepidation and grumbling. Tomatis Therapy did not cure my son. Just as I'm sure taking away his gluten filled Oreo Cakesters and Velveeta Shells and Cheese will not make him class president, but in this unknown world of autism where many discoveries are made through trial and error as each child is so unique, Tomatis, with the help of Mozart eased my son's struggles. As a mother who would do anything for their child, this choice was a no brainer for me.
Dan's concern of "voodoo" took lots of convincing even after the convertible threat. It's not because Dan didn't want what was best for Ryan it's because, like Ryan, Dan is very logical and he wanted assurance this therapy was worth the money and the time. Unfortunately, since there is no cure for autism, there is no gurantee that one treatment will work for this child because it worked for that child. Autism is called a "spectrum disorder" to reflect the broad set of characteristics each child on the spectrum demonstrates. Prior to Tomatis therapy, Ryan wanted nothing to do with anyone but his mama. I distincly recall our beach vacation the summer after therapy ended and a little boy who continually pushed his beloved mama out of my chair for his Daddy to sit beside him. The green eyed monster didn't even raise an eyebrow at this because I knew how long Dan waited and hoped for his boy to "find" him. And as that father and son floated in the pool together, locked in a rarely before seen embrace, my husband threw out his stick pins and voodoo doll and said, "I would have paid three times as much to get this". Yep, Dan got a peek inside that beautiful shell where we both knew our son was hiding and the joy he felt was limitless. Dan got his son and he kept his car. Win. Win.
When I made a scrapbook for my parents years ago, under a beautiful, happy, smiling picture of Ryan I wrote the quote, "Tall oaks from little acorns grow". Yes, my beautiful acorn cracked and with a steady shower of love, Jello Vanilla pudding, Pizza Hut plain cheese pizza (that isn't cooked too long and brown), and a little Mozart, this oak has grown to beautiful heights I once never imagined. And on the days when there feels like there is too much shade, I remind myself where there is shade there must always be sun.
Ryan still has some sensory issues, but compared to before, they are vastly improved. Ryan may never love the Fourth of July, but he sat through an entire Disney World fireworks display (twice) while smiling and covering his ears with only some mild trepidation and grumbling. Tomatis Therapy did not cure my son. Just as I'm sure taking away his gluten filled Oreo Cakesters and Velveeta Shells and Cheese will not make him class president, but in this unknown world of autism where many discoveries are made through trial and error as each child is so unique, Tomatis, with the help of Mozart eased my son's struggles. As a mother who would do anything for their child, this choice was a no brainer for me.
Dan's concern of "voodoo" took lots of convincing even after the convertible threat. It's not because Dan didn't want what was best for Ryan it's because, like Ryan, Dan is very logical and he wanted assurance this therapy was worth the money and the time. Unfortunately, since there is no cure for autism, there is no gurantee that one treatment will work for this child because it worked for that child. Autism is called a "spectrum disorder" to reflect the broad set of characteristics each child on the spectrum demonstrates. Prior to Tomatis therapy, Ryan wanted nothing to do with anyone but his mama. I distincly recall our beach vacation the summer after therapy ended and a little boy who continually pushed his beloved mama out of my chair for his Daddy to sit beside him. The green eyed monster didn't even raise an eyebrow at this because I knew how long Dan waited and hoped for his boy to "find" him. And as that father and son floated in the pool together, locked in a rarely before seen embrace, my husband threw out his stick pins and voodoo doll and said, "I would have paid three times as much to get this". Yep, Dan got a peek inside that beautiful shell where we both knew our son was hiding and the joy he felt was limitless. Dan got his son and he kept his car. Win. Win.
When I made a scrapbook for my parents years ago, under a beautiful, happy, smiling picture of Ryan I wrote the quote, "Tall oaks from little acorns grow". Yes, my beautiful acorn cracked and with a steady shower of love, Jello Vanilla pudding, Pizza Hut plain cheese pizza (that isn't cooked too long and brown), and a little Mozart, this oak has grown to beautiful heights I once never imagined. And on the days when there feels like there is too much shade, I remind myself where there is shade there must always be sun.
Yes, after Dan burned his voodoo doll, he decided to give Tomatis a whirl. As you can see, Ryan was thrilled with the idea!
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