Although Kyle never minded getting clean, Ryan likened bathing, haircuts, brushing his teeth and wiping his butt to water boarding. Prior to understanding this sensory thing, I thought he was just a stubborn little bullhead who didn't want to stop playing or watching Thomas the Tank Engine for a little scrub down. When the nice folks from Early Intervention came knocking at my door, I quickly learned otherwise.
Although "The A Word" still lingered in my head, new jargon was introduced to us, Tactile Defensiveness. Tactile Defensiveness is a type of sensory defensiveness which goes along with Sensory Processing Disorder. When one's sensory system is behaving as it should, our bodies respond to our environment in an appropriate way by relying on the sensations we take in from the environment. However, in kids like my Ryan, when the system is not acting, "normally", their entire system is thrown out of balance.
The tactile system has two functions, protective (tells us when something is dangerous, for example, bath water is too hot) and discriminative (lets us know how soft and silky our favorite blankie is). In a child with tactile defensiveness, the protective response is the default and let me tell you, protection was in the forefront of his mind 24 hours a day, 7 days a week. My boy went into full on "fight or flight mode" the minute he heard a whistle, a firetruck, a smoke alarm, and the bathtub water running.
I AWEnestly hated bath time. There were no calm, happy moments where the scents of lavendar and sounds of giggles filled the air like those liars at Johnson and Johnson advertise. There were only, "close the windows so the neighbors don't think we are abusing him" screams, tears and meltdowns (Ryan wasn't happy either). Like I said, originally, I thought bath time was just an inconvenience, little did I know that the feel of the washcloth on his skin felt like sandpaper to his overly heightened sensory system. The smell of that fabulous Baby Magic bodywash was too strong and overwhelmed his olfactory senses. Constantly being touched, scrubbed, and rinsed was torture for my sweet baby. It was funny how the sound of water filling the tub would cause him to cover his ears, but the water could be so hot that his tiny hiney would be fire engine red and he would never complain. I remember thinking, "oh my gosh, he has that disease where kids have no sensations and they break bones and don't even know it" (of course I'm aware this disease exists). Not so, but having a screwed up sensory system still made life difficult. Washing his hair was like a never ending nightmare. He would scream and cry "no, no, no" while dodging, darting and slapping my hands away. Our subfloor is probably rotting due to the amount of water that went out of the tub in Ryan's attempts to "flee". And if by chance shampoo got into his eyes, my ears would ring for hours from his blood curdling screams. "No More Tears" my a**. God bless parents of little girls with autism who consciously make the decision to keep their hair long. There is no award worthy of their patience and grit.
If washing his hair was a nightmare, then haircuts were a trip to Hades. Of course, the first place I took him for a haircut was to my wonderful stylist at the time, a fabulous man (with no children) whom I adored. Total failure. Screaming, thrashing, slobbering, sweating, crying with hair sticking to his nose, mouth, and eyes. Since I was holding him, I looked like a Persian cat by the time we were done. The stylist just smiled and said, "It's fine", but I know the minute we left, he quickly opened a bottle of wine and prayed we would never return. So, of course the next step, a kid friendly hair salon where there were jeeps to sit in, video games to play and treats once the ordeal had ended. More screaming, thrashing, slobbering, sweating and the end result was horrific haircuts. It's hard to make bangs look even on a moving target. It didn't take long to realize that live ponies or a NASA Space Shuttle in the hair salon would have eased his extreme horror of haircuts.
My poor little man, would actually cry, "hurts, hurts, hurts" and for a kiddo with sensory problems it truly does. Unfortunately, I wasn't aware of that and since I promised I'd be AWEnest, although I felt bad for my beautiful boy's distress, I was equally embarassed by his behavior. With all those conflicting emotions, I decided the best way to deal with it was to avoid the situation all together. Avoidance and Denial run in the same social circles. Occasionally they still pop in for a reunion with me. For a brief period of time, Ryan's hair was long, in my attempt to decrease the frequency of these hideous trips. Of course, brushing longer hair was ugly, but that occurred at home so we were the only witnesses for the meltdowns. Truly with his hatred of hygiene and his long hair, he would have blended in nicely in Haight Ashbury with the hippy generation.
Today, he has a fabulous stylist, Mr. C, who I'm pretty sure God himself sent. Not only does this wonderful young guy do a beautiful job cutting Ryan's hair, he "gets him". Ryan "looks" autistic at the doctors office, the dentist office and the hair salon, more so than anywhere else, however, this "God sent stylist", treats him no differently than when Kyle is sitting in his chair. Mr C recently switched stations in the salon, from one side of the room to the other. Without any prompting from me, when Mr C came to get Ryan, understanding the importance of routine for him, he told Ryan that his station was in a new area, but it wouldn't change how he cut his hair. I truly fell in love with him a little bit that day. Of course I told his manager and the owner of the salon. If I thought Paul Mitchell himself would listen, I would have told him too. Of course I shouted it from the rooftops to countless moms with kids on the spectrum about my hero and not only does this fab guy still cut my boy's hair, he's still nice to me (I do fear he would convince me to get a mullet if I sat in his chair though). Sometimes being good at what you do backfires.
Who could have thought anything could be worse than haircuts, right? Ryan's head is without a doubt the most sensitive area as far as his defensiveness goes, but his feet come in at an extremely close second. Toe nail cutting to this day is still the most hideous of all hygiene issues for my guy. As a toddler, we literally had to restrain him. Yes, we tried all the suggestions by the therapists working with him...we gave him advance notice, we gave him visual cues, we promised awards if he cooperated, but in the end we had to sit on him anyway. Up until about the past year, I cut his nails like a spelunker. I would wait until he was asleep, crawl onto the bottom bunk (it truly is like a cave) where he was snoozing, slowly pull the covers down while praying "please don't wake up" and with clippers in hand and a flashlight in my mouth (yes, I honestly contemplated a miner's helmet...it truly would have made life easier) I went after those toenails. A successful clip was like discovering a lost civilization in an unexplored cave. This process took anywhere from 10-30 minutes depending on how many times he woke up while I hid not breathing on the floor.
After the sounds of his heavy breathing returned, I would climb back on the bed, light on, pick ax, I mean, toenail clippers, in hand and get back to work. Just in the past year, I have been able to hang up my miner's helmet and my safety harness. He now allows me to trim his toenails while awake, but he needs at least one day's notice (he prefers two), it has to be done as soon as he gets out of the shower so his toenails are soft and "don't hurt as much" (although toenails reportedly do not have "feeling" in them, he has assured me repeatedly that his do...he might be right) and a reward of some type must be promised. There are a lot of rules too. I may not touch his foot with my other hand, I may only use the "good clippers" (believe me, he knows the difference) and under no circumstance may I trim his fingernails the same day. Sometimes there are still tears (his and mine), sometimes I lose my temper, and sometimes only two toes get done, but it sure beats spelunking.
Toenail clippers, hairbrushes, washcloths and toothbrushes are cryptonite to kids with sensory processing disorders. And for a kid who literally mouthed EVERYTHING long past the typical baby stages, who would have thought a toothbrush would be such an element of torture. My son had been known to chew on the wrungs of sliding board ladders (which of course instilled panic of arsenic poisoning in his crazy mother due to his palate prefering wrungs made of treated lumber) like it was cotton candy, but a toothbrush, when it was used as an actual teeth cleaning tool, was not going in his mouth. The tortuous cries, the kicks to my stomach, toothpaste everywhere but on his teeth, lead me to wonder if they make dentures for toddlers. The evidence of the toothbrush phobia came in the form of four cavities which had to be filled at a surgical center with general anesthesia because a trip to the dentist is another blog entry all together.
So this my friends, is why my son's hygiene, for a period of time, was substandard. I have had other mom's say to me, "Well, you have to pick your battles", which at times made me sorry I no longer had my spelunking pick ax, because when everyday is a battle with skirmishes erupting everywhere you turn, "picking" one battle over another wasn't an option. Like any good soldier battling this autism beast, you say a prayer, arm yourself with tactical manuevers and knowledge and hope you make it out of the trenches unscathed so you can prepare dinner. And when your sweet boy wraps his arms around you because you prepared one of five things he will eat for dinner, you don't notice if his hair is greasy (unless it is REALLY stinky) and his fingernails are too long, you just smile knowing both of you made it through another day.