Once again, I dropped the ball. I swear, the older I get, the busier the kids get, the more balls I drop. Along with balls dropping, trees are dropping at record breaking speed, due in part to the inordinate amount of paperwork that is sent home with elementary school students. There is hope, people of Sherwood Forest, the high school sends nary a piece of scratch paper home....all reminders, upcoming events, progress reports, etc. are done electronically, and as long as you remember to check the website from time to time, not a tree need fall. There is literally an acre of forest sitting on my kitchen table, in a bin where I supposedly organize it (yeah, and Robin Hood and his Merry Men didn't steal either) and on Ryan's desk in his bedroom....which I never see....until it's too late. And with the sun setting on the innocence of elementary school, an oak wood tree or two has been sacrificed in order to prepare students and their parents for this next big change.

Ryan is in fifth grade. The final year of elementary school. I'm not sure who is more of an emotional train wreck about this chapter ending, him or me. As his mother, elementary school has been this safe nest where all the baby birds are protected from the big, nasty predators that lie in wait for them to stumble and fall out of the nest while mama bird is out scrounging up a worm or two for dinner. To me, middle school feels like a swift kick out of the nest to the waiting bully's, I mean, predators, down below. Ryan is not so concerned about snakes or bigger birds eating him for dinner, he is stressed about change. Kids on the autism spectrum crave routine and sameness. If a change in the decoration of the tissue box stresses Ryan out, leaving the school that he has grown and thrived in (thanks to the nurturing of wonderful teachers and a daily, predictable routine), then middle school is going to feel like an entirely new planet to him. In fact, when I mentioned at the beginning of fifth grade that next year he'll be off to middle school, Ryan quickly replied, "I think I'm smart enough and won't be needing any more FORMAL education after 5th grade." Oh, how in some ways I wish that were true. What ever happened to the boys needing to learn just the basics of education then quit school in order to help Pa plow the fields and tend to the cattle? Unfortunately, we have no fields or cows, so I guess Ryan's "formal education" will continue.

Prior to throwing our babies to the wolves, sharks and king cobras of middle school, the elementary school spends an afternoon preparing these kids for the BIG change that often occurs during the fragile middle school years. That rite of passage when our sweet angelic baby's pituitary gland hits the on switch and releases a tumultuous wave of hormones we so lovingly call puberty. Unlike the "old days" when I was a kid (OMG, I just typed the "old days" and I wasn't referring to my grandparents' era) we learned about the birds and the bees on the original information super highway, the school bus. Since there were equally as many "viruses", misguided information, and so called "experts" sharing mixed messages as today's internet super highway, the elementary school now takes on this oh so embarrassing conversation (God bless them) to make sure each child learns the real deal.

For fifth grade students, they separate the boys and the girls and talk about the different ways their body is changing or about to change. THE actual birds and bees talk where they discuss what happens when those changing bodies end up on a date together doesn't happen until next year (something for me to look forward to). It's funny, I can recall a very distinct moment in the hospital about 36 hours after Kyle was born when I looked at Dan and said, "What will I do with a boy when he hits puberty?". Dan reassured me that by the time puberty rolled around, I'd figure it out. Wrong. Kyle is 15 and although I read all the books and websites on how to have THE talk with your kid (in the car when there is no eye contact has been tried repeatedly), Kyle would stop me short every time utterly mortified that I was even trying. AWEnestly, just a week ago we finally had a bit of a discussion where he actually let me finish what I had to say. Ryan, however, is an entirely different child and throw in a little autism black and white thinking, and I figured this conversation would need to go at a much slower pace, over a longer period of time and that visual aids would be necessary. I wanted to do everything I could to help prepare Ryan for THE talk and that's where I dropped the ball....again.

Of course, I knew the puberty talk was coming up and I wanted Dan or myself (preferably Dan) to brief Ryan a little bit before being shown a movie and having an open discussion in a classroom full of other equally embarrassed and horrified children. I planned on asking the nurse or the guidance counselor if I could review the curriculum ahead of time to help prepare Ryan. Well, guess what? The school sent home a note with the website and information on the when and where of THE talk a few days before it was to take place and I found it in the middle of the forest on Ryan's desk a few days after THE talk had happened and the ball came crashing down on my head.

As I said before, Ryan does not like change. He likes routine, sameness and feeling like he has some type of control over the world around him. Clearly, no one shared this tidbit of information with his pituitary gland or his hormones. For a child on the spectrum who has an overloaded sensory system, trying to anticipate any changes that may feel like an assault on their system is vital. Puberty unleashes a deluge of changes to the body and there is no control over it. Hair starts popping up in places where only a few months ago there was nothing but soft, smooth skin. Emotions, that are so often easily triggered for a child on the autism spectrum regardless of hormonal surges, roll over their unsuspecting, can't plan for it body like a steamroller. And for boys, well, what's going on "down there", is certainly something no social story can prepare them for (or their poor mother). Let's be AWEnest, boys regardless of age, stage of puberty, different ability, etc seem to always have their hands "down there". They always have a reason or excuse for it too which is kind of funny. Maybe that list of excuses is given out at THE talk as well.

Suffice it to say, that as Ryan's mother I am completely freaked out over these impending changes and the effect it will have on my sweet, unsuspecting son. We have begun explaining the easy stuff, like body hair, bigger muscles and voice change, but I have decided I will leave the more uncomfortable discussions for Dan or Kyle. Yeah, I have no problem throwing my 15 year old under the bus and letting him handle this job. After all, I'm a girl, I can't begin to explain what it feels like to go from a boy to a man. I have different parts and different hormones so I only think it's right that the members of my house who have similar parts have this discussion.
 
I know the hygiene part of this change will fall on me. I will have to be the one who explains to Ryan that shower nights now have to be every night of the week not just on the current Sunday, Tuesday, Thursday, Saturday schedule and listen to the complaints of how this change in schedule will effect his entire life. It will be good old mom's job to explain that even though putting on deodorant is "tickly" and that the new hair growth in his arm pits may make the application of deodorant feel tortuous his smell without it will be the demise of any social acceptance by his peers (which quite frankly Ryan could care less about it). And when I suffer tremors from the PTSD of potty training days, recalling the horrific fear Ryan had going from pooping in diapers to pooping in the potty, I will summon my patience when I explain that if he is careful, a razor will not cause him to bleed out in the bathroom sink and that although the shaving cream may feel horribly sticky, it makes the chance of blood less likely (AWEnestly, if he knows there is a chance of blood, he will probably be able to fill in for one of the ZZ Top band members, because that razor isn't goin' anywhere near his face).

And most importantly, it will be mom who calms Ryan down as the emotions and feelings he has never experienced before take over his poor pubescent body when his guard is down leaving his already taxed out sensory system vulnerable. This vulnerability will leave Ryan feeling utterly and totally without control in a world where change is not only difficult, it is down right scary. And when the snakes, sharks and bullies whose body changes evoke a surge of testosterone and meanness, hurt Ryan's feelings, pick on him or kick him out of the nest when he isn't looking, it will be me that soothes Ryan's fears, remind him how exceptional he is and provide him a bigger nest where regardless of his size or the changes that have taken over his unsuspecting body and child like soul, he will always, always feel safe.

Yes Bob Dylan had it right when he sang, 

                                    "Come gather 'round people
                                    Wherever you roam
                                    And admit that the waters
                                    Around you have grown
                                    And accept it that soon
                                    You'll be drenched to the bone
                                    If your time to you is worth savin'
                                    Then you better start swimmin'
                                    Or you'll sink like a stone
                                    For the times they are a-changing."

Little did Bob Dylan know that my boy is a very strong swimmer and in the moments where Ryan feels like he may "sink like a stone", his mama with her bruised up face from taking hits from those proverbial balls she drops from time to time, can make for one unsinkable life preserver. So Mr. Pituitary Gland, when you release your torrent of hormones on my boy, he will be wearing his soft Hollister t-shirt for comfort, holding on to his life preserver mama for safety, gripping his razor in fear of itchy, scratchy, bleeding whiskers and praying that the new muscles in his back and chest give him the strength to withhold the unstoppable changes from boy to man.
   

Memorial Day Weekend is days away...the unofficial start of summer which means swimsuit season is upon us. Ugh. For those of us who have over indulged our winter blahs with cookies, lattes and wine, we stare at the drawer where the bathing suits lie with a mixture of loathing and trepidation. We curse the Victoria's Secret catalogs that now arrive daily already promoting 4th of July sales with those scantily clad girls and their young, nauseatingly perfect, haven't yet bore children bodies and we despise them while we grab another donut to go with our latte. We hit the gym regularly for a month hoping to undo the winter damage in 28 days or less.

Once we are brave enough to try that dreaded suit on we stare in dismay at the body that has betrayed us and pray that our family has tricked us by replacing our full length mirror with one of those distorted mirrors from a funhouse. Once we accept that the reflection in the mirror is not a joke, we decide those extra lattes and cookies have made us look "healthy", not "fat", or "chubby" or "pudgy".....yes, "healthy" is the word we choose for this swimsuit season. What we call "it" doesn't matter, right? If our husband walks by and glimpses us in our annual, sucking it, stuffing it and pulling it back up where it belongs swimsuit ritual, and says, "Wow, you sure look "chunky" (versus "healthy") in that suit", it wouldn't matter right? It's "what you do" with that roll....more donuts or more crunches....that matters, not what you call "it". So say, the experts. And when your husband shows up at work with ligature marks on his neck from his near strangulation by your bandeau top, what he calls "it" to his colleagues doesn't matter either.

For years, since my first obsessive Google of the word autism, I have heard repeatedly from THE EXPERTS, that it doesn't matter what you call "it", what matters is getting Ryan the help he needs to be successful. I couldn't agree more with the getting help part, but sorry EXPERTS on The Today Show, it does matter what we call "it". Does your aging face have character or wrinkles? Are you a disorganized mess or a free spirit? Are your kids bad or adventurous? Has time made you wiser or older? What you call "it" most certainly matters, especially when "it" effects your child.

On May 18th, the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) was officially released. If you have a loved one with an autism diagnosis, you are probably already aware of this heatedly debated release and if you have a child with an Asperger's or PDD-NOS diagnosis (like Ryan) then not only are you aware of this revised publication, chances are you are worried too. According to the new DSM-5, when it comes to an autism diagnosis, there are a lot of changes in what we will call "it" in the future. The diagnosis of Asperger's and PDD-NOS are off the table when it comes to an official diagnosis. Autism, Asperger Syndrome and PDD-NOS will now all fall under the umbrella term of Autism Spectrum Disorder (ASD). Those receiving this diagnosis will then be given a severity level from 1-3, with Level 3 kids needing the most support and Level 1 kids needing the least support.  For higher functioning children who don't meet the criteria of having "restrictive, repetitive pattern of behavior, interests or activities", but exhibit "significant social communication challenges", these kids may receive a brand new, hot off the presses diagnosis of Social Communication Disorder (SCD)". O...M...G!! What in the blankity blank, blank is that?!

Needless to say all these changes has stirred up quite a controversy and I AWEnestly can't even pretend to have a clue how far reaching this effect will have on Ryan and kids like him who as of today, has a diagnosis that doesn't exist. Opponents of the DSM-5 believe rates of autism will plummet leaving many kids in the dust with no hope of receiving services or worst yet, losing services that are already in place. Parents of these higher functioning children fear this as well. Those in favor of the changes (like the experts who made the changes) believe there will be greater consistency in diagnosing children. Under the DSM-IV criteria, many kids who had similar struggles would wind up with varying diagnoses. The hope is that by combining all the former diagnoses into one big diagnosis of Autism Spectrum Disorder, this will reduce the occurence of varying what "it" is called while the severity level will ensure kids are getting the right support for their needs. Advocates of the changes also argue that more kids will receive services since the DSM-IV required symptoms to appear before the age of 3. Now children who may not show social deficits until they are older will be diagnosed and qualify for services.The proponents of the changes believe the new diagnosis of Social Communicative Disorder will capture those higher functioning kids who do not have repetitive and stereotyped interests but have deficiencies in social communication. 

My worry, is that after years of finally helping people understand autism, all these changes may lead to more confusion and possibly a big step backward.  Will lumping all these diagnoses under one giant "it" cause people to believe now that this huge spectrum has become one singular diagnosis and that all these kids who receive "it" are the same? Will "it" cause school districts to lump all these kids into one category since, after all, THE Book did so?  Add to that a new diagnosis of Social Communication Disorder that no one has ever heard of before. For kids who receive this diagnosis, my fear is that there will be a perception that SCD kids are "better off" than a child with an ASD, and we may be right back to square one like we were years ago with kids suffering from lack of support. I also worry about those with an Asperger Diagnosis who have a sense of finally belonging, a culture where they "fit in", support networks, and social media sites where "Aspies" form friendships and bond over their uniqueness. What happens when these "Aspies" are told their diagnosis is no longer an official diganostic description by those deciding what to call "it". I firmly believe that regardless of what THE book says, the term Aspergers and those who affiliate themselves with that diagnosis are here to stay. These "Aspies may take the pages of the DSM-V and wipe their....well, you know.

For worriers like myself, I have wondered where does Ryan now fall on this spectrum? I'm back to Googling and diagnosing again. After years of hanging with the wrong crowd, my BFF Denial finally skipped town only to come back for a little reunion to help me decide if Ryan has an Autism Spectrum Diagnosis, Severity Level 1 because of his "restricted" diet of meatless cheeseburgers and Jello Vanilla Pudding and his love of Hollister shirts or is "it" Social Communication Disorder (SCD) since his biggest struggle is social language? If "it's" SCD then that begs the question is my blog now a fraud? Must I title it the AWEnesty of Social Communication Disorder? And do I tell Ryan that his diagnosis has changed? Will it matter to him what "they" call "it"? My poor, tired brain. I bet that DSM-5 has a sound, irrefutable "it" for me.

As Ryan's mother, what "it" is called while I snuggle him, grocery shop with him and discuss the latest weather pattern with him doesn't matter, but when an insurance company needs to understand why my son needs a cavity filled in an outpatient surgical facility rather than a dentist office because there is not enough laughing gas in the world to make him chuckle or willingly open his mouth, "it" matters. What you call "it" may mean the difference for grant money to help pay for an expensive summer camp where Ryan is embraced by others wearing the same "it" while playing, laughing and learning how to make "it" understood and accepted by "us". When the school needs to know why my son may need his schedule on a computer rather than a piece of paper because his sensory system can't bear the thought of touching any type of paper, "it" matters. So, you Today Show Experts, who so glibly say, it doesn't matter what you call "it", well, I beg to differ.

I would love to agree with those oh, so certain experts, on their "it" campaign, but we are a society of "its". The proof is in the DSM-5. The gut wrenching, painful grief of losing a loved one is no longer a devastating heartbreak over the fragility of life. If that heartache goes on too long or is too debilitating, well then "it" becomes a Major Depressive Disorder. For those of us who take out our frustrations on a bag of chips, or my personal choice, a bag of Peanut M&M's, twelve times in three months, "it" is no longer a moment of weak piggishness, "it" is a Binge Eating Disorder. When your toddler's temper tantrums are so disruptive "it" is no longer considered The Terrible Twos, "it" is a Disruptive Mood Dysregulation Disorder. Yep, "it" matters.

The jury is still out on how these changes of "it" will effect children and adults with an Autism Spectrum Diagnosis. Apparently, how "it" is handled, in regards to new evaluations for kids whose diagnosis is no longer recognized in the DSM-5 to educating school officials, insurance companies and treatment providers on the new "it" will reportedly be left up to individual states and local systems to determine what is best.  Sounds to me like "it" could be a real cluster *#*#. As for THE EXPERTS who so quickly dismiss the importance of what we call "it", well please don't be offended when I sit next to you pool side at my rented house in The Hamptons (it's my blog...I can dream) and tell you that you look "fat" not "healthy" in your new Spanx swimsuit. I will just pull up Poynt on my phone and find the nearest gym where you can "get the help you need to be successful" assuming of course "fat" is an acceptable "it" in a gym at The Hamptons.

I am a product of the 80's. I know, I'm showing my age here, but yeah, I sported the striped leg warmers, the high waisted stone washed jeans, the colored "knee highs" to match my shoes (bright yellow was my favorite), the big hair (sadly, I left the leg warmers in 1985 but I still "poof" my hair) and like every girl my age, I had the Footloose Soundtrack. My Footloose cassette tape was thread bare by the time 1986 rolled around because just like every girl living in small town America, I believed I was Ariel held prisoner in a repressed town, fighting the old establishment and waiting for Ren, aka, Kevin Bacon, to move into town, shake things up a bit and rescue me from a life of expectations. Every young teeny bopper's dream. It was 1984 when I first fell in love with Kevin Bacon and Kenny Loggins for "cutting Footloose", but just last night, on an elementary school stage, I fell in love with them both a wee bit more.

Ryan's fifth grade chorus concert was last night and the theme was Broadway. In the weeks leading up to the concert, occasionally while Ryan was in the shower, I would hear my beautiful song bird belting out the lyrics to songs from Phantom of the Opera, Grease, The Lion King, Wicked and yes, Footloose. Of course once I heard Ryan singing Footloose I had to immediately let him know I was a Footloose aficionado and that not only did I know all the lyrics to the song, I also knew a couple of Kevin Bacon dance moves. I demonstrated my exceptional Footloose knowledge by breaking into song, horribly off key, and showing Ryan some of my near identical Kevin Bacon moves. I'm not sure what horrified him more, my Bacon-ess dance moves, my horrible singing or just the fact that I even knew Footloose existed. After all, I'm just boring, plain old mom. Regardless of what embarassed him most, I was told to "knock it off" because I looked and sounded "utterly ridiculous". I think had I showed off my dance moves in an abandoned warehouse, instead of my kitchen, I would have gained a little credibility with my son. Probably not though, Ryan can be a bit of a curmudgeon and chances are he would have sided with Ariel's father, Reverend Shaw, and the Bomont town council in 1984 for the no dance, no rock and roll and no fun theme.

Prior to going to the concert, I had to promise Ryan I would not cut footloose in the aisle....such a disappointment. I also reminded Ryan he was not allowed to wear jeans or sneakers and he had to wear a collared shirt. Let the battle begin. Ryan complained, yelled and adamantly refused to wear anything but jeans and a Hollister tshirt. He was NOT wearing those horribly "hard and uncomfortable" khaki pants, he was NOT wearing a shirt that "strangles him to death" and he certainly was NOT wearing a pair of dress shoes that his brother wore on "his stupid feet"....twice. The final score....Mom, 2 Ryan, 1. He left the house in khakis, a collared shirt and of course, his beloved bright green sneakers. Sigh. Pick your battles my friends.

A few hours later, I watched my handsome boy run across that stage with his bright green sneakers glowing while tugging and stretching his collar and my heart melted. Once in his assigned position, Ryan immediately scanned the audience for the one face he has no trouble making eye contact with....mine. It didn't take him long to find me and when he did, Ryan made his "trying not to smile face". We see that face quite a bit and I'm not sure why, but AWEnestly, it is very much an awkward, "autismy" facial expression. Ryan looks odd fighting back his smile and the irony is, his natural, genuinely happy smile is big and beautiful.

I once read an article where a neurotypical brother said his autistic brother would be "handsome if he didn't have autism". At first I thought it was kind of mean, but now, I get it. Sometimes Ryan and other kids on the autism spectrum make sort of odd, facial expressions or grimaces. For some kids it may be sort of a tic or a stim that they do in a stressful situation which helps calm them down, but for Ryan I believe it's more a result of what he is "seeing" inside his head. It could be Patrick or Spongebob, it could be Mario or Luigi or it could be Austin Powers or Mini Me (yes, we are bad parents and he is familiar with both those characters and his impersonations of them are uncanny and typically untimely). You never know "where" Ryan is or "who" he is with when he is making these goofy faces, but it is very apparent that he is not "with" you at that particular moment. Temple Grandin, a nationally recognized speaker and author living with autism, describes thinking and seeing the world in "pictures", like there is a constant, full color movie, complete with sound, going on inside her head. So whichever DVR choice embedded in Ryan's brain he chooses at that moment is where he is "at" when he is making odd facial expressions and his "do not fit the moment" goofy noises. On that stage last night, Ryan was probably "seeing" a convicted cowboy in an old western movie being hanged by his tight, strangling shirt collar. It's a wonder his tongue wasn't hanging out.

For the most part, last night Ryan was "at" the concert and I was so grateful. I have seen him perform chorus concerts on three other occasions, but this was his final performance as an elementary school student (insert sniffles and tissues here). The first three songs of the night, Ryan sang like most of the other kids...straight faced and business like. By the time the fourth song, Footloose, rolled around, Ryan must have ran and put on his "Sunday shoes" and had "Louise pull him off of his knees" because that boy cut loose. A handful of kids were doing a choreographed dance routine in front of the other students which I'm sure was cute, but AWEnestly, I have no idea because I couldn't take my eyes off my boy. Ryan's head was bopping to the music, the smile on his face was big and natural, there were no tugs on his deadly, strangling collar...that boy was feeling the music. Music is such a huge part of Ryan and listening to him sing, play the piano, help Dan tune his guitar with his gifted ear and tell me how many notes I miss when I try to sing, is just delightful. Ryan sang his heart out and I loved every second of it (he was also very relieved that I did not cut footloose....as were Dan, Emma and my girlfriend and her family who were sitting next to us).

The concert ended and when my handsome boy finally looked at me he dropped the "trying not to smile face", beamed at me and winked! I swear, my beautiful boy, whom I love from the depth of my soul, winked at me!! Who the heck was that kid? Ryan was proud and he was being playful in "hard, uncomfortable pants" and a "strangling" collared shirt. My husband had just turned off the video recorder and of course was so disappointed and frustrated that he didn't capture the wink on video, but I knew it didn't matter. The wink and that beaming smile are permanently tattooed in my brain and on my heart. Ryan knows I am, and will always be, his number one fan. Who needs Kevin Bacon? I've got Ryan Hooven. I think I will start a fan club.

As if the wink wasn't enough to make my night...my year, watching my boy cross the stage with his first true friend, it happened. All the heartbreakingly painful field trips I chaperoned, all the class parties I helped out with and all the volunteering in the classroom when I would witness time and time again my son sitting or playing alone, in his own world, ignored by his classmates....all those moments were forgotten as the last notes of "We Go Together" from Grease still lingered in the air. Ryan exited stage right smiling and chatting, yes, I said chatting with his new friend and another classmate. He was engaged with those boys verbally and non-verbally which was evident by his smile and his body language. I noticed it, Dan noticed it. Our son looked like "one of the boys" for the first time ever. No collar tugs, no facial grimaces, no looking away. Ryan looked happy, confident and friendly and that's when the tears began.

I believe much of this transformation and confidence in my son is a result of Ryan's new friend accepting him just like he is, quirks and all. Ryan is finally beginning to understand that the right friend will overlook the facial grimaces and the silly scripting noises that are a part of him. This friend seems to understand that occasionally he will have to share Ryan with Spongebob, the Angry Birds or whoever is playing on Ryan's DVR loaded brain. However, I think this friend is kind enough to say, "Dude, that's just weird" and Ryan may finally trust a friend enough to know that this friend is not trying to hurt him, he is trying to help him by being AWEnest. I love this new friend. 

As we exited the school, another boy from Ryan's class said, "Bye Ryan, good job tonight" and although Ryan fumbled for the socially appropriate response, he quietly cluttered (not stuttered...Ryan doesn't stutter, his brain just gets cluttered with words as he tries to search for the right ones) out something like, "It was good seeing you this evening." which although sounded like the response of a 50 year old man versus an 11 year old boy, at least Ryan responded. That my friend, is progress.

Yes, Kevin Bacon and his "kick off their Sunday shoes" friends may have transformed a sleepy little Bible Belt town into one giant rave almost 30 years ago, but my Ryan and kids like him are slowly, oh so slowly, transforming the way classmates, teachers and biased, sleepy town folks perceive them. These kiddos don't stand before a town council pleading their case, or skip across the county line to "fit in", they just go about their day being who they were meant to be hoping that one day, the only A word that will matter to people is not found in a diagnostic manual, but found in people's minds and hearts. ACCEPTANCE. After all, if in 1984 we were able to accept high waisted stone washed jeans and the mullet, I think we can accept an odd facial grimace and the occasional cry of an Angry Bird's "eee-hee".

This Sunday is the day we mothers wait for all year. The day when breakfast is served in bed by our proud children who leave a lovely mess in the kitchen for us to clean up after we rise. The day we take a vow not to touch the laundry even though the numerous piles of dirty clothes lay waiting in our closets, on kids bedroom floors and hanging out of hampers mocking us knowing there will be more joining it the next day. Yes, Mother's Day is the day our children and our spouses sit up, take notice and appreciate all that we do....for 15 minutes....until the bickering over whose card you must open first, which restaurant we will go to for dinner and why they waited all weekend to begin the witching hour of homework. It is a glorious day.

The tradition of celebrating Mother's Day is documented as far back as the Ancient Greeks with the annual spring ritual of honoring Rhea, the mother of many deities. The Ancient Romans also honored a mother goddess by the name of Cybele during the festival of Hilaria which lasted three days and included parades, games and masquerades. Three days? Parades and games all in celebration of mothers? Clearly, I was born too late. As for our more modern Mother's Day, Anna Jarvis is recognized as the founder of Mother's Day in the US. Although never a mother herself, Ms. Jarvis fought tirelessly to have a day to commemorate and honor mothers throughout the country as a way of honoring her own mother who had such a profound impact on her life. Even though all the ads in the Sunday paper the week before Mother's Day remind us to treat mom right by purchasing her jewelry, flowers, clothes and iPads, this was never Ms Jarvis' intent when she founded Mother's Day. In fact, poor Anna Jarvis was reportedly horrified by the commercialization of what she felt was a near sacred day. While I enjoy the idea of Grecian and Roman men in togas praying to a mother goddess like myself and although I firmly believe every mother should be worshipped and allowed a pilgrimage each Mother's Day to a retail mecca of her choice, I AWEnestly think Anna Jarvis had it right. I have received many beautiful Mother's Day gifts over the past 15 years, but my most beautiful Mother's Day gift was a homemade card lovingly and painstakingly created by a very special boy who happens to despise writing, drawing and the feel of paper.

It was just last Mother's Day when I received beautifully hand crafted cards from my little darlings. Emma's was sweet and bright, just like her. Kyle's was full of love and funny, just like him. But it was Ryan's card that made mine and Anna Jarvis' dream come true. This little boy who hates paper, writing, drawing and anything having to do with creativity, went at this piece of paper like a new level in a Mario game. Ryan was so caught up in making this card for his beloved Mama, that Dan felt the need to capture it on video. That card and that video allowed a glimpse inside my boy's beautiful heart and it literally took my breath away. I read the words he so neatly wrote and created on his own, "I'm sure to know that I'm the luckiest child alive. Do you know the reason? Answer: YOU!! (with a perfectly shaped heart right in the middle of the letter O) Happy Mother's Day! xoxoxo". The words were as poetic as any verse composed by Emily Dickinson. The hearts outlining the entire front of the card drawn by a boy who begs not to go to school on Cycle Day 6 because it's art class day, were as beautiful and as bold as any van Gogh watercolor. The video....oh my, the video....watching the intensity of his creation, the intensity of his love....Steven Spielberg couldn't have captured it any better. I collapsed in a puddle of tears (van Gogh would have loved to paint that scene). I AWEnestly don't know how my heart didn't burst right there on my back porch. I have never doubted Ryan's love for me, but this was so visceral, so real, so worth every fear, doubt, worry and heartache I had endured over that stupid A word. This love from a child to his mother that only a few decades ago would have been believed as improbable was a gift that no department store, not even Barneys could out do.

Many children on the autism spectrum have a difficult time reading and understanding emotions thus they may not reciprocate their emotions or feelings the same way a neurotypical child does. Facial expressions and body language are often lost on them, however, these children can still bond and still love. One of the biggest myths of autism is that autistic people don't feel and know love. Imagine being a neurotic mother with callused fingers from Googling the word "autism" and reading those words. I was utterly terrified and sick at the thought Ryan might not ever know how much I love him. Thank goodness, this alleged "unawareness" of love for those on the spectrum is nothing more than a myth and a lack of understanding. Certainly some children may express their love "better" than others, but isn't that true for all people? Whether a child shouts "I love my mother" from the roof tops or purrs like a cat while rubbing his head against your shoulder, the message of love is clear, just different.

When my callused fingers and I were constantly web surfing, I would tell myself that Ryan most certainly did not have autism because he did not "arch or pull away" from my touch (too much). He was not resistant to being cuddled or snuggled, at least not by me so he surely must not be autistic. Of course as my bleeding fingers would scroll to the bottom of the page, there in the fine print would be something like this, "a child may form a bond with a parent or sibling, but this should not rule out a diagnosis of autism". Click the X, turn off the computer and run away. Unfortunately, no matter how far or fast I ran, I couldn't escape what I knew was true. Early on, I was the only person Ryan allowed to snuggle, cuddle or tickle his back. He permitted others to tend to his needs and if I wasn't around, Dan made a fine substitute, but it was his mother's arms that he felt safest in, his mother's voice that soothed his anxiety of the loud, unpredictable world, his mother's hands he entrusted with a comb or a toothbrush, and it was his mother's heart that he entrusted his own heart to. It is still that way today. What a gift for me.

I remember trying to convince the pediatrician that Ryan did not have autism by bragging about how affectionate Ryan was with me and the doctor said, "Of course he is, you are his mother". I am his mother. Those four words...those four beautiful words spoke volumes to me as they have for all mothers for thousands of years. There is no love like a mother's love....sorry dads....yours is good too, just different. A mother's love is fierce, it is ferocious, it is primal. The mother elephant not only spends 22 months pregnant (can you imagine?) and gives birth to a 225 pound baby (God bless her), but a mother elephant will also protect her baby by instinctively putting herself between a hungry lion and her calf. The life of her child outweighs her own instinct to survive. These mother elephants are so smart and so loving that when they decide to take a quick stroll for some tastier grass, or just need a little Mommy time, they put their babies in the care and custody of other mother elephants. We moms, regardless of species, must stick together because only another mother knows the powerful connection between mother and child (or mother and calf). I so love that even elephants recognize that "Mother knows best".

Ryan most certainly does not believe that "Mother knows best" because I am told several times a week that I am wrong, and "not that smart", but to this day, he loves me like no other. This love is the payoff for being the person he gets most frustrated with, who he yells at and who he occasionally gives the old passive aggressive slight shove when overwhelmed. I take the brunt because he knows no matter what, as his mother, I will always, always love him. This love just intensifies the guilt when I have horrible moments where I lose my temper, scream, swear and as Ryan calls it, "have a fit". Moments that I'm not proud of and convince me that I'm not worthy of a three day parade or even a 24 hour laundry free day to honor me.

One particularly ugly moment had to do with Ryan switching over from the lightweight fleece coat to the heavy winter coat. Ryan wanted no part of that coat and come hell or high water, I was going to make sure he put it on. I begged, bribed and coerced, but that coat wasn't going on. A good mother would have just let him wear the fleece and freeze, but not me, I was going to win and AWEnestly, at that point it wasn't about him catching a chill, it was all about me winning. With seconds until the bus arrived, I tried again, this time shouting, "Put your coat on NOW!", to which he responded, "Only if you say it nicely." Through a fake smile and gritted teeth I kindly seethed, "Please put your coat on." to which he promptly responded no again. Something inside me snapped and the world turned red, and I screamed, "Put your (insert F word here that is not the word "Friend" and add the suffix "ing") coat on now! Was that nice enough for you?!" Lo and behold that boy put his coat on for fear, unlike the protective mother elephant, more like the mother hamster, I might just turn on him and eat him. We were both in tears and yes, he missed the bus, but not a single bite mark on him.

AWE-inspiring moments and AWE-ful moments, we mothers have them all. Throw in a dash of AWE-tism and those moments just tend to be a wee bit more extreme. Yes, mothers are worthy and certainly deserve to have a day or three to honor our commitment, our sacrifices and our unyeilding love for our children. We deserve parades, parties, jewelry (sorry Anna Jarvis) and statues erected in our honor because as mothers, we love like no other. Our children feel this love regardless of any different ability they may have, regardless of how often "we have a fit" and regardless of how many times we make the grilled cheese sandwich "too brown".

On my best day, I am a mother elephant wielding my tusks at the school bus bully or those ignorant enough to believe "different" means "less". On an average day, I'm a chipped, covered in bird poop, tarnished Greek maternal goddess statue returning the Sugar Free Jello Pudding for the fifth time in exchange for the Original (please, please Jello change your packaging), but even on my worst day, when I scream, swear and watch my kids eyes fill with wonder at the transformation from loving Super Mom to Satan's sister, I am still NOT a hamster mother and have never once considered my children lunch. Regardless of the kind of day I'm having as a mom, I am loved by my children and without a doubt, they each believe they are the "luckiest child alive" because I am their MOTHER. Yeah, I'll take that....365 days a year!

When Ryan was little, "before we knew", I would sometimes wonder if he was
hearing impaired. Frequently, I would call his name and he would not respond. I
assumed he was just too caught up in his Thomas engines or his oh, so annoying
Leapfrog Writing Desk, so I'd disregard his potential hearing loss by going back
to sharing my bottle of wine with my good, old reliable friend Denial. Of course
when the wine was all gone and Denial went home, my crazy self would run up the
steps to the computer and Google signs/symptoms of autism and one of the "red
flags" I always regrettably stumbled upon went something like this, "Some
autistic children may appear deaf, failing to respond to being called by their
name or to follow simple commands." Sh**!! Of course what I wanted to find in my obsessive searching would have gone something like this, "Even though your child routinely ignores you, but interacts beautifully with characters on television, there is no need to panic. Your child is 100% normal". Since this was nowhere to be found on Google or any other search engine, like any good mother I would take my panicky self back downstairs, pick up the phone, call Denial back and open a second bottle of wine.

For a brief period of time, when Denial and I were on our third bottle of wine, I did question Ryan's hearing. Every time I saw The Miracle Ear Commercial and heard the old man yell, "What'd he say?" I would quickly run to my wallet, grab my credit card and start dialing the phone to place an order. Of course, I would always hang up before placing the order because deep down I knew it wasn't hearing loss. I agonized over how my beautiful boy could not "hear" me, but he could mimic to a tee the sound of the microwave in an obnoxiously loud and busy Wendy's restaurant. How could the hair dryer running three rooms away cause him to instantly stop what he was doing to slam the door closed, but my calls of "Ryan, what are you doing?" went completely unanswered? Why wouldn't Ryan respond to my questions about his day at daycare, but he would happily shout out the answer to every question Steve asked on Blue's Clues (I was so jealous of Steve...I kind of despised him....what did he have that I didn't?)? Why, why, why?

Of course, now I know the reason why has to do with that six letter A word that I worried and obsessed about for so long. There is no need for a Miracle Ear, Ryan hears just fine. In fact, his hearing is so acute that he probably hears the frozen pizza crust burning in the oven before the rest of us smell it, while covering his ear waiting for the impending sound of the screeching smoke detectors to sound an alert (Julia Child, I am not). Ryan could most certainly challenge the Bionic Woman with his hyper sensitive hearing, but chances are, the Bionic Woman would process the sound she heard more effectively and more quickly than Ryan, thus making her a super hero and Ryan not. Many kids on the autism spectrum have auditory processing difficulties, so although Ryan "hears" what people say, it may take his brain a little longer to retrieve the meaning of the words and form a proper response. For those of us without auditory processing issues, we are impatient and quickly expect a response and when we don't get one, we either move on to the next question or give up and walk away. This processing difficulty is one reason why Ryan appears to ignore you. Other reasons may be because the questions you ask are just too confusing, or sometimes he may be too involved in something else (if Mario or Angry Birds are in front of him, you don't stand a chance) or AWEnestly, maybe what you asked him didn't interest him and he can't be bothered wasting his valuable time with a reply. You can't take it personally when he fails to answer your question or greet you, people in general don't interest Ryan much, but this doesn't mean you should stop trying because once he trusts you and "gets you", I promise, you will be on the receiving end of many smiles and laughs.

When kids or adults are "different" it may be hard to initiate a conversation or try and build a relationship with them. Some of these "differences" are very visible, while others are more subtle.  People react in various ways to these so called "differences". Some individuals have trouble looking at or making eye contact with someone with a different ability, while others stare and stare. People tend to struggle with how to talk to or treat someone who is "different", so rather than risk feeling uncomfortable, many folks go about their business. In doing so, these people miss a rare opportunity to see inside a beautiful heart, mind and soul that although at first glance may appear "different" than most, upon a closer look, it is very evident that we are all very much the same. Regardless of a person's different ability, they want to be loved and accepted like every other person who appears perfectly "normal". I figured this all out not because of Ryan, but thanks to a funny, lovable, beer drinking man named Billy.

When I was in college at Penn State, I worked at an athletic clothing store. It was Special Olympics Weekend at PSU and the owner of the store was asked to help sponsor and participate in the opening ceremonies and as the Assistant Manager, I had to participate too. Gulp...Special Olympics meant kids with special needs, kids and adults with Down Syndrome, people with Cerebral Palsy, and most assuredly people with autism (although at the time I had no idea what the word autism even meant). In a nutshell, I was suppose to provide an aerobic workout to a bunch of people who were "different". This is going to sound harsh, ignorant and just plain stupid, but remember I was a young, naive college student...I AWEnestly was afraid, yes afraid, to go. I had no idea how these kids and adults woud act. Would they speak to me? Would they yell, scream or have some kind of break down? Would they touch or grab me? What would I do if they did? What would I say to them? How should I treat them? I had no idea, but what I did know was that if I wanted to keep my job, I had to get over myself and go. I knew I should have done a quick vodka shot before I left my apartment, but instead I grabbed a Diet Coke and off to Beaver Stadium I went.

When I arrived, I was told to "warm up" my group. My group consisted of three children with Down Syndrome, several teenage boys who "looked normal", but clearly were very low functioning cognitively, and one 30 something man with Down Syndrome named Billy. I anxiously said hello to my group and was quickly greeted with happy cheers, hugs, compliments on how "pretty" I was (of course I loved all of them immediately) and complaints of how hot it was outside. Within minutes I was invited to the softball games and the swimming and shot put events. I was very quickly adored and accepted and I felt the same way about my new friends. All my anxieties about these wonderful Special Olympians were quickly put to rest, but it was during a warm up of leg kicks when "it" hit me. And I mean, literally hit me. Billy, clearly the oldest of my group, reached over and lovingly punched my arm and said, "Hey Kate, do you know where we can go get a cold beer after this? It's hot and an ice cold beer sounds good!" I couldn't stop smiling and I couldn't have agreed more. Standing there with Billy talking beers and bars was like hanging out with my roommates. Maybe Billy couldn't have kept up with us in a college calculus class, but just like us, he wanted to have a good time, have people respect him and go grab a case of Rolling Rock 7 ounce "ponies" at The Skellar.

I'm happy to report that my fear of "different" was left on that field and stomped on by a group of amazing Special Olympians at Opening Day Ceremonies. Although I was only volunteering for the Opening Ceremony, I spent the rest of the weekend at the softball field cheering on my new friends. I was even fortunate enough to be "snuck in" to a pizza party for the athletes and their family members after the games ended. It took me less than 45 seconds to fall in love with these guys and not because they called me "Pretty Kate", although that was an added bonus, but because on a hot summer day in State College, these "guys" taught me a lifelong lesson. Different is not scary, different is not weird, different is not bad, different is just....different. Maybe Billy and I crossed paths 20 plus years ago (crap, how did I get so old) for a reason. Maybe it was to open my eyes and my heart in order to love a child that is "different" or maybe Billy and I met to share our common love of a cold beer on a hot summer day. I don't know why I met him, I'm just so very glad I did.

Ryan may be "different" in some ways, he may not be easy to get to know and he may chose to ignore you nine times out of ten, but on that one time he connects with you, I promise, it will be worth all the previous shunnings you have experienced. I have witnessed first hand those who make a concerted effort with Ryan rather than just accept that he will probably ignore you so, "why bother" and move on. The people who continue to try and know him, regardless of previous rejections, always walk away smiling or laughing. Whether it's my girlfriend with an Indian accent who constantly tries with Ryan and frequently makes him smile or laugh, and whom he now responds to with his own version of an Indian accent (which sounds remarkably like Apu from The Simpsons)...or my girlfriend who tried desperately to make Ryan the perfect breakfast only to be accused of hiding pulp in the supposed pulp free orange juice...or the friend who had her Wii fixed in time for Ryan's next visit and called to make sure she had the right ketchup so she wouldn't "mess up" his meatless cheeseburger...or the friend who ran back into Betsy Ross' house on a field trip after Ryan left his coveted, paid with his own money, candy sticks behind...or the friend who always made sure she had individually wrapped, white square cheese stocked in her refrigerator...or the friend who bought Ryan a birthday card with an old lady squirting an old man with a hose on the front and the words, "Life's too short to act normal" on the inside (which made him LOL)....these attempts don't go unnoticed. In fact, as Ryan's mother, I see these moments and they make me love deeper, appreciate more and worry less. Many of these "friends" are my friends. These friends who have proven time and again that Denial was meant to be left in the dust because there are many beautiful people who are accepting of "different" and my gratitude for these people is endless. 

Ryan may not have a ton of friends, and chances are, he never will, but my friends are teaching him that he can be loved and accepted just like he is, which opens the door for him to trust and possibly make a friend. I may appreciate and love these efforts, but more importantly my beautiful boy feels the difference between people who try to "get him" and those who are unsure of his differences and quickly give up. It's easier to walk past Ryan or stop trying to know him after he appeared hearing impaired on so many other occasions, but believe me, Ryan hears you and more importantly, he "feels" you, so don't give up on him or any other person viewed as "different".

Let my Ryan be your Billy. Just like Billy, Ryan is worth the time, he is worth the fear of "different", he is worth the shouting you need to do to get his attention, and he is worth understanding. It's not a hearing aid these kids need, it's a kind heart, an open mind and a few years down the road, it's a friend who will share with them an ice cold beer at The Skellar on a hot summer day. And although you may feel completely alone in that bar because there is little to no conversation, your presence is felt and your presence matters so please don't walk away. Just like the The Miracle Ear Warranty, if you take some time to accept "different" and make an effort to know "different", I promise you a 100% satisfaction guarantee and you can completely disregard the fine print at the bottom of the warranty, because no refund will ever be needed.