Bad, terrible things happen to good people...to the best people. Some of us look to God and find comfort, some of us look to God for blame. Some of ask why, but know it is pointless because rarely there is an answer. Some of us, instead of asking why, ask what? What can we do? What do they need? What will bring comfort? This week, my heart is heavy for friends that I love dearly. This week, I will not ask questions. I will not provide insight. I will not be AWEnest. This week, I will just "be"....whatever they need. There are no words this week my friends, only a respectful silence. We will catch up soon...

So, I have only been at this blogging thing for a few weeks now, but when I started, I promised I'd be AWEnest and give you the good, the bad, and the ugly. I feel like I have only shared glimpses of the good and focused more on the bad and the ugly and that's not fair to you because AWEnestly, there is so much more good in this journey we have embarked upon.

Yes, undoubtedly my Ryan has areas that are more of a struggle for him and many of those areas will be lifelong struggles, but my amazing little boy is gifted in so many ways that it boggles my sad and feeble mind. I'm pretty certain that by the age of 4 he was already smarter than me (yes, I'm ditzy, but I was the Outstanding Scholar in my Graduate class, thank you, so not every 4 year old is smarter than me).

Ryan's memory is incredible! Like sometimes scary incredible.  There have been numerous occasions over the years where I am convinced, without a shadow of a doubt that he must have a photographic memory. Sure, sometimes it's Rainmanish, but sometimes his incredible recall is totally practical. It's baffling to me that on Christmas Eve he can remember the cup he drank out of last Christmas Eve (and heaven help me if that cup every gets lost or broken), but when asked who his aunts and uncles are, he can't always come up with their names. A perfect example, we were at my parents a couple years ago and one of my sisters was in the hospital. I explained to Ryan who was in the hospital and why. Well, my other sister walks in the door and in his somewhat monotone voice he says, "Well, I'm glad to see you made it out of the hospital." My big hearted boy. Right words, wrong sister.

Ryan is able to recall the location of every gold coin in all the Mario games, memorize every word and every facial expression of Jim Carrey in The Grinch Who Stole Christmas (yes, he may have a career in Hollywood if he can accurately mime Jim Carrey) and compare it musically to the cartoon version from one Christmas season to the next, but he can't remember who sat beside him at lunch three hours ago. I don't think it's a coincidence that his memory fails him when it comes to people or social interactions. Those things aren't nearly as important to him as gaining entrance into the next Mario world. If he had it his way, I AWEnestly think he would prefer to live in Mario's world than this one. It's much more predictable. You can turn the world off when you are done with it or when you become to overstimulated, the same people show up in the same places and say the same things time and time again and of course there is the added bonus of having multiple lives.

As I mentioned before, on Ryan's second birthday he received those awful alphabet refrigerator magnets that hurt like he** when you step on them in your bare feet, because even though they are designed to stick to your refrigerator, half of the alphabet winds up on the floor, under the stove (if you ever dare to clean under there) and embedded between your toes. When Ryan opened the box of letters (as I smiled,  cursed the gift giver and made a mental note to get their child something really loud or messy for Christmas) he knew every single letter, upper and lower case. Since Ryan was my second child, I realized this wasn't because I sat down with him every day and tried to teach him the letters, we know this only happens with the first child. So I patted myself on the back for picking a fabulous daycare who apparently started teaching my son his letters before he could speak. Oh, and I also decided that those Baby Einstein Videos were worth every penny.

Besides knowing his alphabet, Ryan also could count and recognize his numbers up to twenty by age two and up to thirty before he was three. He could also tell time before his fourth birthday as well as add and subtract time in order to figure out how many minutes until his favorite show was on (no, not Judge Wapner, usually Blues Clues). My child must certainly be a genius.

Although Ryan had some language delays it wasn't his inability to say words correctly,  it was his expressive language. His ability to convey his thoughts into words and meanings. Since he could mimick every sound and word he heard, he rarely said a word incorrectly. The only two words he struggled with (or so I thought) regularly were, balloon, "ba la loon" and banana "bee nee na na". I still pronouce these words the Ryan Way today. Although I thought the way he said it was adorable, I have since learned that my boy was trying to read those words at the age of 2! He was hyperlexic which is a fancy doctory word for an ability to read words at a very early age. Call it what you want, I called it genius. I was ready for my boy to be the shortest kid in high school. His incredible memory played a big role in his ability to count, recognize letters and read.

Along with his crazy smart ability with letters and numbers, my sweet boy had a built in GPS in his brain. Although my memory fails me regularly, I have no problem remembering his first GPS route. Right around Ryan's second birthday, Dan and I had taken the boys to a new ice cream stand called Brusters in late summer. It was located in a small town about 10 miles from our home in an area we rarely ever travel. If you are familiar with Brusters, you know their logo contains their name and two cherries. No where is there a picture of ice cream  on their sign. No where. We had to pass this Brusters four months later to get our Christmas tree. As we drive by Ryan yells, "ice cream". WHAT? It totally freaked me out! You must remember, my pal Denial and I were still hangin' so I was in a complete panic. How could he have possibly remembered that? My lack of knowledge and my denial just chalked it up to genius...again. Temple Grandin, a very successful woman with autism describes her brain like a movie showing the same pictures over and over again. Apparently my boy took a picture of Brusters in his mind and loaded it into his GPS.

His GPS also freaked me out on a first grade field trip. Two weeks prior I had taken the kids for the first time to a local farm to pick apples, a pumpkin and play in the corn maze. Well, here we were two weeks later loaded on a bus with 50 first graders leaving suburbia for a 20 minute bus ride to the country. Ryan sat snuggled up against me looking out the window in order to survive the loud, smelly bus. We were just approaching an intersection and he yelled, "turn left". Oh. My. Gosh. My little GPS did it again! I didn't even know that's where we turned and I drove us there! He's a big help when I get lost.

His mind baffles me. Ryan was able to identify every country in the world in a week playing Stack the Countries on his iPod Touch (by the way, there are 196 countries most of which he couldn't pronounce but he knew their location on the globe). He can tell you the exact date his well visit fell on last year (of course he can), he constantly gets "show your work" on his math papers because he doesn't need to show his work, it's all done in his fabulous mind (no wonder Rainman was so successful counting cards in Vegas...we have no trip planned to Vegas, but if times get tough....well, never say never), but my incredibly smart boy can't grasp all your facial expressions. He may not know if you look embarassed, bored or confused. Ryan understands angry, happy and sad, but more subtle emotions and facial expressions are hard for him to decipher. Ryan also doesn't understand why you say it's raining cats and dogs when clearly water is what is being released from the clouds, not Fido. Sarcasm is lost on him so if he spills root beer on your dress and you say, "oh that's cool", then don't be surprised if root beer then gets dumped on your shoes.

Facial expressions, idioms and sarcasm make understanding people difficult, but not impossible for Ryan and kids like him. That's where his fabulous memory can play a vital role. With the support of his beloved and amazing speech therapist, Ryan can be taught what confused or embarssed looks like. He can learn what an idiom is and although he thinks people who use idioms are "as dumb as a post" ("Mom, posts don't have brains! Are you crazy?!") he can memorize their meanings so when we neurotypicals ask him to "stop beating a dead horse" he will know we are not accusing him of animaly cruelty.

So, don't take it personally if Ryan forgets your name. Your file is just not as important as the file on how many people died in tornadoes in Pennsylvania last year. He probably doesn't even have a file on the tornado deaths in Kansas or Nebraska because he doesn't live there and since those states are in Tornado Alley, chances are good he never will. Failing to recall your name doesn't mean that he dislikes you, it just means that his memory is more likely to recall info that is more interesting to him and in Ryan's mind, people just aren't that interesting. He likes concrete information and facts.  For those of us who do not have impaired social interactions, we recognize the complexities of people and understand that people are difficult (some certainly more than others). People don't always look the same, behave the same or speak the same. For Ryan, and other kids like him, the letter A will always be the letter A. Four plus four will always equal eight. Our beloved apple orchard is always a left turn off York Rd. Those things are constant, they are predictable, they are not confusing or scary and that makes my beautiful boy feel so much safer than looking you in the eyes, trying to determine if you are bored or embarassed and wondering why you would ask him "if he got up on the wrong side of the bed" this morning when clearly his bunk beds are against a wall and there is only one side he can get out of...the right side.

Although Denial and I didn't hang out like we use to, I'm still quite friendly with Selective Memory. In fact, there are times when I lose track of how fond of Selective Memory I have become. When I decided to start my blog I had to take a trip down Memory Lane and since I have killed off many of my brain cells (thank you Penn State) and the ones I have are no longer firing as rapidly (thank you old age), I had to get a map out so I wouldn't get lost on my trip. My map consisted of two large files filled with evaluations, therapy appointments, treatment plans, notes from teachers, and loads of articles and information I had printed off the web trying to convince myself Ryan did not have autism. I was amazed at how many things I had locked in my "Wow That Was a Sucky Time Let's Not Think About It Again" file. It is a very big file.

One memory in that file was a period of aggression with my sweet little boy. I swear to you I was convinced these notes must have been mixed up with some other boy, because Ryan would never hurt anyone. He is a rule and law follower and hurting someone is against both. Most kids on the autism spectrum would not intentionally hurt anyone, even those kids that are much more severely affected than my Ryan. They do however become frustrated, scared and confused and may not be able to articulate it in the way a neurotypical child can due to language and communication deficits. Even today, when Ryan is frustrated, he can't get the words out in that moment. He can tell me later what was so upsetting to him, but in moments of fear, hurt or frustration, he can't process his feelings and articulate them at the same time. Much of this is do to his heightened fight or flight response.

The fight or flight response is a basic survival instinct in animals and humans. Wiki defines it as this: "In the human fight or flight response during prehistoric times, fight was manifested in aggressive, combative behavior and flight was manifested by fleeing potentially threatening situations, such as being confronted by a predator. In current times, these responses persist, but fight or flight responses have a wider range of behaviors. For example, the fight response may be manifested in angry, argumentative behavior, and the flight response may be manifested through social withdrawal, substance abuse and even television viewing." Well, there were no T-Rex's or other predators coming to eat my boy, unless you consider "killer bees" predators because rest assured he is convinced one day that will be his demise. FYI, he did sit on a bee's nest and was stung repeatedly and did not have a life threatening reaction (unless you count screaming and running into a parking lot which potentially could be life threatening), thus a potential bee allergy was disproven at Bumble Bee Hollow Mini Golf. I kid you not.

Ryan did fit the mold of Wiki's definition of the fight or flight response in current times. Fight response: Angry? Check. Argumentative behavior? Check. Aggression? Check.
Flight response: Social Withdrawal? Check. Television Viewing? Check. Running like a mad man from any sound or touch he perceived as harmful? Check. Needless to say, at the age of 3, substance abuse was not a concern (unless of course you are Drew Barrymore). It would appear that not only was Ryan's survival instinct intact, it was grossly overexaggerated.

As difficult as it was for me to understand how a cow flashlight that opened his mouth and said "moooo" caused such an immediate flight response in my little boy, it had to be more difficult for him to try and process all these sensory stimulations when his system didn't work quite right. For a boy of three, he was trying so hard to make sense of the world in his own way and sometimes when he just couldn't figure it out, or the world got too big, too loud or too scary, the result might be a punch to the nose, a shove, a complete meltdown or my biggest fear, running away to avoid a perceived threat and running right into the path of a real threat. Once we were in downtown Harrisburg and a butterfly, not a killer bee, flew past and he let go of my hand and almost ran into traffic on third street. Everytime I'm on third street my heart starts pounding and my palms get all sweaty. PTSD over a butterfly. I bet I'm the first.

Unfortunately, many toddlers did not respect or understand Ryan's very wide personal space area. Toddlers by nature are rambunctious, touchy and inquisitive. This lack of respect for his personal space often lead to pushing, shoving and hitting his peers and sometimes, even his teachers. When checking out my map for Memory Lane, I found an incident report (I really do have hoarding issues) where Ryan punched his favorite teacher in the nose and knocked her glasses off her head. I remember thinking that my days working with juvenile delinquents were going to come in handy because certainly that must be the path my boy is heading down. Hitting a teacher? The funny thing with Ryan's aggression was that it was typically reserved for those he loved and trusted most. That meant good ole' Mom got plenty of whacks and so did his beloved teacher Miss J. Yes, he loved Miss J with all his heart so even though she may have had a shot to the nose, it was a compliment. She had a good heart and although I'm sure she wanted to punch him right back (you see, teachers also have a heightened fight or flight response which is necessary in their occupation), she didn't. Instead she picked up her glasses mumbled a few curse words under her breath (I'm guessing although had she said it loud enough, my little parrot would have certainly repeated it in an instant) and gave my boy the "squeezy tight" he needed to calm down. My gosh how I loved Miss J.

Ryan's other survival mechanism at daycare was social withdrawal. If those touchy, feely toddlers weren't going to respect his endless list of rules (it's ok if I touch you first but don't touch me unexpectedly, do not get paint, glue or any sticky art supplies on me, do not ever, ever, touch me on the head...ever), then he was going to avoid them at all cost. If I had a dollar for every time I prayed, "Please let him be playing with someone.", "Please don't let him be playing alone.",  "Please don't let him be reciting Thomas the Tank Engine Videos." when I went to pick him up on the playground, I would be a very wealthy women. Sadly, almost every day, my prayers went unanswered. I'd find my boy playing under the slide, in the playhouse, digging in the dirt...alone. And on the occasion my heart would leap a little because there were other kids in the playhouse or under the slide with him, upon closer inspection they were only in the same physical location, no social interactions were occurring.

Although those moments were heartbreaking and why I chose to put them in the "Wow, That Was a Sucky Time Let's Not Think About It Again" file, my Selective Memory always remembers Ryan's face that lit up like a Christmas tree when he saw his Mommy had finally come to retrieve him from the messy, sticky, loud, pushy, shovy, touchy, scary world of daycare and the chubby arms that wrapped around my neck and hung on like his life depended on it. And in his mind, it did. I was and still am his safety net.  I wear that title like a badge of honor because AWEnestly, there are very few people who know the warm, funny, smart, beautiful boy that hides behind the defensive wall his system has created to protect himself from a world that is loud, unpredictable and confusing.  Ryan knew when he was 3 and he knows today, that Mommy will take on any T-Rex or butterfly that shows up on the playground and although his fight or flight response will kick into high gear, and chances are good I will find him hiding in the back of the van, his mommy will be there with a "squeezy tight", a butterfly net and a vanilla Jello Pudding to make his world  again.
 

Ryan's dislike (abhorrence) of "light touch" not only reared it's ugly head at the hair salon or the pediatrician's office, his objection occurred everywhere, even  in his closet. Since we have moved past the days of wearing armor made of steel and layers upon layers of petticoats (I'm fairly certain had I been born in the era of petticoats and corsets I too would have had a sensory processing disorder) our clothing feels "light". Cotton, polyester, rayon are fairly lightweight clothing compared to steel. You know where I'm going with this, don't you? Yes, Ryan's Tactile Defensiveness/Sensory Processing Disorder made getting him dressed more difficult than dressing Beyonce for the Super Bowl (I could have a future on her tour as I'm willing to bet her fits don't compare to my boy's).

Clothes are light. Clothes have strings. Clothes are not all made of Hollister tshirt cotton. Clothes are made of various fibers. Yes, a kid that is so sensitive is aware of the fiber in their clothes. I once read a story about a little girl with autism who was being nominated for class president. The kids were told to put their heads down on their desks while the voting took place. This ultra sensitive little girl knew who voted for her by the sound the kids' clothes made when they raised their hand. Needless to say, if these sensitive kids can hear various fibers, they can most certainly feel them! The number one worst part of clothing is...I'm going to say it, TAGS. Yep, there it is the four letter T word spelled out with no asterisks hiding it's vulgarity. When fights occurred over the T word occasionally the F word followed suit. Yep, I'm AWEnest and sometimes I have a mouth like a truck driver (I hope I have not offended any of my truck driver readers as I am basically one of you). As you can see in the photo, tags were removed from everything. Tag removal was such a part of Ryan's childhood that I felt this shirt had to be front and center on his memory quilt. Oh yes, dressing my sweet boy was indeed memorable. Every spring at our annual neighborhood yard sale the nice Mennonite women showed up and would ask me the size of the clothes because not a single item of clothing had a tag left anywhere. Fortunately, those lovely ladies are very resourceful and they carry a tape measure which was certainly a necessity at our sale.

Some days I longed for the Adam and Eve clothing trend, before they discovered leaves (clearly, Ryan's leaf would have been made of Hollister cotton). If he found a shirt he liked, I bought it in every color. Unfortunately, I wasn't smart enough to buy it in every size to fit him for the next 10 years. See, the thing is toddlers grow, they grow a lot and quickly and although he felt his shirts fit fine, many days he looked like he was wearing a half shirt from the 80's.

Along with the way the clothes "felt" another cardinal rule was no television characters whatsover on any article of clothing. Ryan had every phrase, song and facial expression of the 15 VHS tapes of Thomas the Tank Engine memorized so to say he loved Thomas would be a gross understatement. After scoring a Thomas shirt at a local department store, I rushed home to put it on him. Big. Mistake. You would have thought I bought him a shirt made of porcupine quills. "No, no, no" he screamed!!! "No Thomas on shirt, no, no not on shirt!!" What was the big deal? It was 100% cotton and sure it was made in Vietnam, but surely the cotton was soft in Vietnam. Fine, Thomas stayed in the closet along with shirts with Teletubbies (can't say I blame him on that one) and Elmo. All shirts with characters, regardless of fiber content, completely stressed him out. If they appeared on TV, then they didn't belong on a shirt. It was like he had things filed in his AWEmazing brain as "characters that I watch on TV" which meant they were not in the file of "characters that belong on shirts". I know you aren't suppose to use the word weird, but AWEnestly sometimes there isn't a word more fitting and I thought this behavior was totally weird.

I was grateful that at least he had a few shirts, pants and pajamas that were acceptable so I didn't have to do laundry every single day. Now shoes and coats were an entirely different story. Typically at this toddler/preschool age you have one winter coat (and no hats or mittens...EVER) and one coat for spring/fall for your child. Poor Ryan, by the time spring rolled around and it was time to put the winter coat away, he had just finally gotten use to it. I swear there were many days he was in his carseat sweating in April as he still preferred his parka. Seasonal changes were very difficult for my routine craving boy.

Shoes. Wow, coming from the womb of a mother whose blood pressure and heartrate accelerates in the shoe department, the apple couldn't have fallen farther from the tree. One day I may end up in the nursing home and although I may forget who I am, my filter (which is pretty ineffective without adding dementia) may be totally gone and I may once again drink from a sippy cup, I promise you I will NEVER forget the first time we put sandals on Ryan. I purchased him the cutest pair of Teva sandals and although he protested with "no, no, no....udder shoes" I was determined to put these cute overpriced sandals that I had already removed every TAG from (of course I did) on his all too sensitive feet.

After finally strapping his very reluctant piggy toes in his sandals we went outside to try them out. While he continued to protest, I kept pointing at Mommy's sandals, Daddy's sandals and even ultra cool brother Kyle's sandals. That boy wouldn't have cared if they were Jesus' sandals, he wanted them off his feet. The part that was so freaking funny was he never once tried to remove them. He just stood there stuck to the front porch as if his feet and ankles were encased in cement. His entire body would move, but I promise you a meteor could have come crashing down on our sidewalk and his feet wouldn't have budged. Being the AWEsome mom that I am, my neighbor and I stood there laughing hysterically which I know sounds so mean and awful (I promise I love my boy to the sun and back, I'm just easily amused), but I had never seen anything like it! It was like some episode of Wile E Coyote and the Roadrunner where quite obviously I was the nasty coyote and since I was doubled over laughing at my poor trapped Roadrunner I certainly deserved a stick of dynamite thrown at me.

I eventually learned that the deep pressure of his sneakers and socks felt good on him and the lightweight sandals were too light and bothersome. Believe it or not, my fella today loves flip flops and sandals. In fact when school comes around in the fall there are complaints of his sneakers being too tight. He is now much more accomodating with clothing too, but there are requirements and routines. Ryan will wear jeans and Hollister tshirts (short sleeve only) to school, but he immediatley comes home and puts on silk sport shorts (the month or the season makes no difference) and sometimes prefers his fleece Mario blanket wrapped around him like a cape instead of a shirt. It's all trial and error with my sweet boy and having the patience while his overloaded system adjusts. And though you may judge me for laughing at my defenseless little Road Runner, it is AWEnestly the ability to laugh loudly and love deeply that keeps all families touched by autism afloat. That and the fact that Hollister makes the softest tshirts in the world and that fleece pants are very in style. Yes, I pray that the CEO of Hollister has a sound business plan for the next 80 years and that people won't judge my son when he is 65 and still sporting a Hollister Swin Naked in San Diego tshirt.

Ok, so we knew baths, haircuts, bum wiping and nail clipping were all forms
of torture for my Ryan, and even though it may have been easy for me to accept
my Haight Ashbury boy, I knew other kids wouldn't find him quite so endearing.
Most of us at some point in our childhood were on the receiving end of some
meany kid's comments or name calling and regardless of how many years have
passed, we probably still remember that meany kid's name (and feel so vindicated
when we see what a loser they are on Facebook). I had to find a way to make
these tortuous hygiene moments more tolerable for my fella so he didn't get his
butt handed to him on the playground (of course with his long Freddy Kreuger
like nails I feel certain he could have held his own).

Since I broke up with my BFF, Denial, it was time to take action. The first
step was to call our county's Early Intervention Program. On the day of the
assessment I was a nervous wreck (more so than on any other typical anxiety
ridden day for me). This sweet young lady showed up at our door and the first
thing Ryan did was point to the top of the steps where our dog was standing and
said "Niyka". Score!! A symptom of (whisper) Autism, is lack of finger pointing.
Clearly this nice intake specialist lady should just turn around and leave,
right? Sadly, she didn't (sigh). Someone must have tipped off the nice intake
lady about me because after greeting Ryan so sweetly she quickly assured me it
was not her job to "diagnose" my son, therefore my constant stream of "Do you
think he is autistic?", "Do kids with autism do that?", "Well, if he were
autistic he surely couldn't have completed that task, right?", "OMG, what are
you writing in your notebook?" all were deflected, rephrased, and ignored.
Basically she gave me that "I know you are worried, but I think YOU need the
therapist"  smile (I'm incredibly familiar with that smile) and said, "It
doesn't matter what you call it, what matters is getting Ryan the help he
needs." I hated her. When you aren't the nice intake lady, when you are the
freakishly anxious mom whose son may or may not be autistic, it da** well
matters what you call "it".

 Granted, she was right (I hated that too), the goal was to help Ryan, not
reassure his mother's neurotic fears that he would one day be able to live on
his own, get married and have three kids, regardless if this is what he wanted
or not. AWEnestly, at 2 years of age, unless nice intake lady had a crystal ball
in her bag of assessment tricks and tools, there was no way to predict that
outcome for any child. Some days I really long for the Wicked Witch of the
West's crystal ball (and Dorothy's shoes).

 Occupational Therapy was the recommended course of action. Since I was
completely unfamiliar with what an Occupational Therapist (OT) does, I of course
assumed they would be preparing Ryan for his career or a trade of some sort and
immediatley began second guessing that perhaps they did indeed  have that
Wicked Witch's crystal ball. Fortunately, we were assigned the most amazing OT,
I swear I occasionally caught glimpses of a halo and wings. When you are worried
for your child, regardless what that worry is, having the right person in your
corner makes all the difference in the world. Miss M was going to help my
beautiful boy and in the process, help our family. 

The first thing she taught us in tackling the Tactile Defensiveness thing was
the difference between light touch and deep pressure touch. She gave the perfect
example of how after a very trying day, you come home fall into the arms of your
spouse and when they give you that big squeeze you just sort of decompress. Ryan
craved these "squeezy tights", as Miss M so lovingly called them (today, we
still use the term), regularly. He especially loved them when he was upset, hurt
or frustrated. To this day, the minute he is injured, he presses so hard on the
injured area, that I'm convinced a simple scratch will turn into a broken bone
(and I will be called in for questioning), but to him instead of making it feel
worse, it makes the boo boo feel better. Deep pressure touch helps regulate
Ryan.  If you have seen the HBO movie Temple Grandin (a woman  with
autism who gave the world it's first real glimpse into what living with autism is truly like) you may remember the "squeeze machine" she created to provide her with that deep pressure touch because she preferred her machine to actual people giving her
that sensation.

Of course, clueless mother that I was, Miss M said it was evident that Ryan
didn't like light touch. Wait a minute...he loved to be held by me, he loved to
have his back tickled and he loved rubbing his silky sheshe (blankie) and that
all sounds like "light touch" to me?! Miss M explained that those light touches
are expected ("Mommy tickle Ryan") and from someone he trusted. I swear in the
middle of this therapy session, my neighbor walks in, says hi to Ryan then just
gives his leg a little pat. Ryan was playing with his writing desk toy and
although he never looked up or acknowledged my neighbor, he immediately pressed
hard on his leg where she patted him. Son of a....Miss M was right (now I hated
her too...just for a second). How as the mother of this little boy who the sun
rose and set on, did I not notice that before? Miss M must be gifted or there
really was something to this occupational therapy stuff other than preparing my
son for a successful career as a carpenter or some other trade like I initially
thought. I think it was both.

To help desensitize Ryan to his utter dismay of light touch, we were introduced to the Wilbarger Brushing Protocol and given a body brush like the one you see here. We were shown how to brush Ryan's arms, back, legs and the soles of his feet (like that's gonna happen) with the brush using medium to firm pressure and long deep strokes. This was to be followed by joint compressions where we were instructed to use gentle pressure and squeeze or squish his shoulders, elbows, ankles, wrists, knees, hips, fingers and feet. We were suppose to do this for three to five minutes six to eight times a day. Say what??!! I only brushed my VERY hairy Siberian Husky dog like twice in her fifteen years (which was very evident if you ever wore black clothing to my house). How was I going to "brush" a child, who by the way had very little hair, and who hates light touch? I was told he may be resistant at first, but most kids with sensory processing difficulties really enjoy it. I was skeptical. The technique is meant to calm and sooth the nervous system which then allows the nervous system to "integrate more experiences". Clearly, no one cared about my nervous system.

Just like no two neurotypical kids are alike, no two kids with autism,
sensory processing disorder or any other kind of "different-ability" (I detest
the word disability) are alike either and although the Wilbarger Brushing
Protocol can be very helpful for a lot of children, it turned Ryan into a cross
between The Tazmanian Devil and Damien from The Omen. Two people you would not
want at a dinner party. It wasn't pretty. Just like Taz, he would literally spin
around like a tornado and throw his body into the couch, the wall, the chair,
me.  What the he** was happening? If he wasn't crashing into things he
would go and sit upside down on the couch (this is still how he reviews his
flashcards for quizzes...a note to anyone with kids studying for the SAT). His
teachers at daycare reported more aggression at school. Clearly his fight or
flight response was being exacerbated with the brushing. Although this brushing
thing was new to me, clearly I didn't think this type of behavior was the
anticipated result. After a few long weeks of Taz-Damien, we were instructed to
stop the brushing.

So, it didn't work, that must mean he is totally fine, right? If it's meant
for kids with sensory processing difficulties and it didn't work on Ryan then
his sensory system must be just fine. Oh no, what if he is so much worse? What
if he actually has autism and that's why it didn't work, his system is so off
that the brushing protocol failed?! This is my brain, day in and day out. Hence
the demand in my will to donate said brain to science. 

This was just our first step into the world of Occupational Therapy and
although the Wilbarger Brushing Protocol was a bust for Ryan, we have been
taught many tricks of the trade over the years.  Although I initially
misunderstood the role of an OCCUPATIONal Therapist, I have come to realize that
teaching Ryan to be a carpenter or an electrician (I really am stupid, aren't I?)
is a valuable skill, the tools these OT's have given him over the years are
what will make him live a happy life and achieve the goals HE wants to, not the
goals of his worried mother. He may never want that wife and three children I
envisioned when he was 2, but he is slowly learning that he is a smart,
compassionate boy who can achieve anything he sets out to do. Some tasks may be
bigger mountains for him to climb and it may take him longer, but knowing that a
"different-ability" does not mean a "disability"  was a lesson taught to
both of us by a wonderful angel who showed up on our doorstep and always left
covered in dog hair.

I always assumed, with two little boys, that hygiene wouldn't be high on their list of priorities and oh, how this has proven to be true. Dirty little buggers could go days without baths and be happy as a pig in...well, you know. Little did I know that it would become so very low on my list too.

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.

Before anyone ever uttered "The A Word", "The S Word" (Sensory Integration Dysfunction or Sensory Processing Disorder, as it is now called) was suggested. Sensory whaty? Exactly!

Since all my friends and family thought I was nuts I decided to discuss my concerns with our fabulous pediatrician (who by the way also thinks I'm nuts, but he's not allowed to say that, at least not to my face). It didn't take much convincing. If you read my first blog post about Ryan's well visit, you know the pediatrician's office is not his favorite place at age 11 and it wasn't when he was 2 either.

After discussing my concerns and seeing first hand Ryan's "reluctance" (abhorrence) with being poked, prodded and touched and hearing his blood curdling wails to assure us of his dismay, the pediatrician wanted details about his sensory "sensitivities".  Well, let me get out my list (of course I had a list, hypochondriacs always have a list). After discussing the page long length of my concerns, he wrote down the words "concerns re: Sensory Integration". 

My heart sank and I thought I might throw up on my favorite pediatrician's nice shoes. Ok, it wasn't "The A Word", but a "disorder" of some type was written on a piece of paper with various instructions on who to call next (as you can see, this note has been in the trenches with me which is evidenced by it's condition. The fact that I still have it may indicate that hoarding should be added to my list of "issues"). This wasn't how it works. I'm a neurotic nut bag who "awfulizes" (my mother created that word for me, it's quite accurate) a scenario and then time after time I'm proven wrong. That's how this goes EVERY time. Apparently, the pediatrician didn't get the memo. 


Never in my life have I wanted to be the Neurotic, Hypochondriac Mom who cried wolf more. I truly wanted to scream "you don't know what the he** you are talking about", flip him off and run out the door, but since my heart felt he did in fact know what he was talking about, I couldn't find the words or the hand gestures (thank God, because I now know this wonderful doctor has a son with Asperger's Syndrome and the number of times he has saved me from my own madness are endless).

I barely heard anything he said after he handed me that slip of paper. The
kind nurse who saw me silently weeping and wiping my nose on my sleeve, offered
me a tissue and Ryan a sticker. I gratefully accepted the tissue while Ryan
quickly threw the basket of stickers on the floor wailing "no, no, no" through
his hiccuppy tears. You see stickers are, well, sticky, and from the first time
he discovered that yucky sticky feeling and to this day he despises
them.  We were a pitiful mess.

Dan and Kyle were waiting in the car for us to travel out of town to visit my
in-laws. I got in the car feeling broken, scared and confused. I did feel
somewhat relieved though because he did not say "The A Word". Whatever this
sensory processing thingy was at least it wasn't (whispery voice) Autism.
This was before the days of smart phones so I did not have immediate access to WebMd, symptomchecker, or diagnoseme.com (which of course are all bookmarked on
my iPhone today) so I had to wait days before my cycle of worry could come to an anxiety exploding head. 

Ryan with his "sheshe" (blankie) and sippy cup of apple juice in hand, of course had completely recovered. The only evidence of the trauma was his tear streaked face and his constant self assurances of "all done, all done, all done" repeated at least 20 times (I'm not exaggerating), in the backseat.  I think we can rule out a career in the
medical field for him as he thinks all medical personnel...dentists, doctors,
ophthalmologists, etc are all trying to "destroy" him.

My friend, Denial,  helped me get through the weekend. "Well, it's not
'The A Word'", Denial reassured me, so all these "concerns" I had were explained away with this sensory problem. When he looked out of the corner of his eyes instead of
directly at me it was because he is so "sensitive" (or possibly because I hadn't
put makeup on yet).  When he freaked out every time the baby wipes touched
his bottom (yes I had a wipe warmer, but convinced myself it was a fire hazard
and promptly disposed of it...AWEnestly, I am nuts) it was because they were too
cold for his "sensitive" little bum. When he cried hysterically at just the
sight of the vacuum cleaner and nearly broke through the door to get out of the
room when it was running it was because he had Bionic Woman sensitive hearing
(Wow, maybe he will be famous!) not because he was autistic. 

So, this sensitivity must also explain why he would only eat certain foods, he had extra sensitive taste buds (it surely was not my cooking).  Of course we all know that "sensitive" kids tend to be bright, so this must be why he melted down if I ever varied our routine in the grocery store. If I skipped aisle 5 or heaven forbid, I went to aisle 6 before aisle 5 he would get highly agitated, crying out whichever aisle number I
missed. It wasn't because I varied our routine and he craved sameness, it was
because he was so smart and knew I would be devastated without Miracle Whip this
week. It  was all making sense (no pun intended)! Yes, I do so love my BFF
Denial.

Imagine how betrayed I felt by my BFF when I finally had access to a computer
and Googled, "Sensory Processing Disorder" and found it was often linked to that
freaking "A Word"!  Sensory Processing Disorder, previously known as
Sensory Integration Dysfunction is still somewhat controversial. Some experts
believe it is a condition in and of itself, while others believe it is a feature
of various other diagnoses, the most common being (whispery voice) autism. 

What I read was that it was a neurological disorder that caused difficulties in
taking in, processing and responding to sensory stimuli both in the environment
and from within one's own body. Well, sure that sucks, but what I still wanted
to know was if the DSM-IV, the holy grail of  "Mental Disorders", does not
recognize SPD as a diagnosis, how could a hypochondriac who relied on all
medical answers to be black and white, preferably, "no you don't have (insert latest disease obsession here)", kind of black and white, accept this as a diagnosis for my Ryan?

I would love to tell you that since I'm such a great mother, all that I cared
about was getting my beautiful, lovable boy help and that it didn't matter what
we called "it", but I wouldn't be being AWEnest, because what "it" was called
mattered a lot, like '"checking the over 20 million websites on autism" a lot.
After spending years as a juvenile probation officer and knowing the
significance and impact of a "label", what we called "it" was vital to us, and most importantly to my son and his future.

You know how your mother always knew which friends were bad for you? Well, if my mother would have known how tight Denial and I had become, she would have warned me to stay away. This time, I didn't need my mother to tell me that it was time to get AWEnest and accept that not only was Denial bad for me, Denial was hurting this beautiful boy and it was my job to protect him. 

And just like the bad influence, partying, cursing, school skipping friend who wanted you to sneak out of your house to go to a party, I knew that Denial was leading me down the wrong path, but, oh how I enjoyed hangin' with Denial so much more than my new Class President, Honor Roll, brown nosing friend AWEnesty. With that said, Mama bear mode kicked into high gear as I slowly, oh so very slowly, began breaking ties with my BFF, Denial, and slowly started to accept the path that was laying out in front of me.

It was a beautiful Easter Sunday morning. THE holiest of holy days for Christians. I’m in church with Dan, Kyle, Ryan and my family at my parent’s church. The service has begun and the choir is singing. Proud mother that I am, I have my boys dressed in their Easter Sunday best? (See picture...like you could miss that face in that hat). Looking back, I wonder if perhaps dressing Ryan in this hideous 90 year old man outfit may have been ‘the trigger”.  Autism experts believe genetics play a role in autism along with perhaps an environmental factor that “turns on the gene”. As a mother who carried this child for 9 months you look back at everything you ate, did, exposed yourself to, etc. trying to convince yourself you were the perfect pregnant mother and certainly there was nothing you did to cause this, right? Maybe it wasn’t the flu shot I received before I knew I was pregnant. Maybe it wasn’t the asbestos removal that was going on in the school I was working in or a virus or vaccinations, or my college years.  Dear Lord, maybe it was this hat?!! Perhaps dressing him like a grumpy old curmudgeon actually turned him into a grumpy, old curmudgeon. A mother’s guilt does all kinds of crazy things to one’s brain and heart.

I’m not sure what “turned on Autism” in my boy and I’m not sure why on this beautiful Easter
Sunday morning it all clicked for me. Could it have
been the music, since Ryan is so musically gifted, or maybe it was boredom in part that caused this cataclysmic moment? I will never know why it happened, but I can share what happened. In the
middle of the choir’s song, my little man, who at almost 2 was still not really conversing as much as he was parroting, says, “A, says ahhhh or aaaaa as in apple or ape wheeeeeeetttt”. WTH? As I’m trying to stuff a handful of Cheerios in his mouth to shut him up in the holiest of places on this holiest of days, I’m thinking, “What was THAT?”. Then I knew, figuratively and literally. I knew what he was mimicking and in that moment I also knew there was something more to this parroting thing. This unconventional outburst was the exact phrase and the EXACT sound the eraser makes on his favorite toy, the Leapfrog Phonics Writing Desk. I hate that stupid toy.

Maybe this wasn’t what you were expecting, no hand flapping, no spinning, no loss of
vocabulary, no horrific tantrum at Toys r US, no "who's on first" recitation, just a strange mimic of a toy in an odd place at an odd time. I knew. I had been looking online convincing myself of all the signs of autism he didn’t have and making up excuses for all the quirks he did. In that moment, when I should have been focused on Jesus’ resurrection, I was trying not to vomit, trying not to fall apart and finally realizing Dustin Hoffman really deserved that Academy Award. All I could think of was “He really is Rainman.’ The hundreds of times I repeated, “Kmart sucks”in a monotone voice were no longer funny (although Ray did have that right).


As I tried to pull myself together and listen to the ultimate sacrifice Jesus made for us, all I could think was, “Will he be able to live alone?”, “Who will take care of him when we die?”, “Is it too much of a burden to ask Kyle to care for him?”, “If someone says the words Group Home and I break their nose, how much time will I spend in jail?" (anywhere from 2-10 years depending on "the degree of harm"). All of that in the time it took for the choir to finish a hymn. My brain is a wonderland.


My. Heart. Was. Broken. Mother’s intuition. We know by looking at their eyes they have a fever, we can tell by the cry if it’s frustration or pain, we can tell by their voice if they are lying or telling the truth. How did I not see that my son was autistic? Denial? Absolutely. Apparently, I was not being AWEnest yet. It didn’t help that many of the internet websites with all the “signs”said kids with autism don’t show love. I looked at my perfect little old man snuggled up against me still trying to pull the excess Cheerios out of his mouth. Without a doubt, he knew love.


I didn’t immediately leave church and schedule an appointment with a developmental pediatrician (those who know my neurosis will be amazed), but my son’s quirks weighed heavily on my mind that day and for the days to come. Denial is an amazingly strong emotion. We can have something staring us right in the face and make up an excuse that suits the outcome we wish for and convince our brain it is so. I’m pretty sure my crazy, neurotic brain was trying to save me from heartbreak. And of course any time you go online for a quick diagnosis of any kind (some days I curse the internet) and you Google autism, or cancer, or swine flu, etc. the articles aren’t typically cheery which sent this crazy mother spiraling downward deeper and deeper, but in the battle between denial and acceptance, denial was still winning.


Sometimes, even in the face of denial, when our worry becomes too great there is a turning point. Most of us don’t recognize it when we are in the moment, because denial has it’s dirty claws dug in deep, but we can look back after a period of time and go, “Oh yes, now I see”.


Funny how my “ah-hah” moments were in the least expected places. Church and the
Toyota service center. I had to take my 4Runner in for service a few weeks after "The Moment".  It was a quick service so armed with snacks, toys, books, etc I took the two boys with me. Well, it wasn’t long before Ryan made it very clear he was unhappy at the service center. Out of nowhere (or so I thought) he would start screaming and covering his eyes. I mean screaming like “everyone is looking over the top of their magazines thinking shut that kid up screaming”. Being the clueless mother that I am, I thought, well, that’s just weird. And as quickly as the screaming began, it stopped. Finally, after about the 5th time this happened, I said aloud “What’s the matter baby?” and big brother Kyle said, “He doesn’t like when they call for someone over the loudspeaker." Holy crap, he was right! Every time someone at the service center announced a telephone call to staff over the intercom, he would scream hysterically and cover his eyes. It was loud, but why on earth was he covering his eyes, not his ears? And AWEnestly, that is what freaked me out the most. And of course the fact, that Ryan’s 5 year old brother was more aware of what was effecting Ryan than I was. I swear, Kyle has been a gift to his brother. Maybe birth order doesn’t suck after all.


I left the service center and ended up in my girlfriend’s driveway sobbing hysterically. “There is something wrong with him, I know it!”I sobbed. She soothed me and talked me off my cliff as she has so many times over the past 18 years. They should come up with a civilian Bronze Star Medal, because I have a loving husband (God bless him for putting up with my crazy a**) and quite a few patient girlfriends that have pulled me out of the trenches of despair, heartache, and worry in this battle of autism that are so worthy of having that medal pinned to their chest.


For the readers who know me, they know I am a total hypochondriac. Constantly worrying about the latest disease, virus, nuclear threat, asteroid or any danger to life or limb. Maybe once again, this was my over-active, definitely donate to science, brain on overdrive again. So when I told my family and friends that I was worried Ryan had autism, they all laughed,“yeah, sure he does”. Aferall, he didn't flap his arms, spin in circles, or scream "hot water burn baby" and for most people, that is autism. Not to mention I was the girl who always cried cancer, Lyme Disease, West Nile Virus, shark, and now I was crying autism and just like the boy in Aesop's Fable who cried wolf, the villagers didn't believe the "wolf" had actually touched this family. Not at first…