Thank you for another year of reading, understanding, accepting, and........
Merry Christmas from my family to yours!!!
Nothing brings a smile to Ryan's face like Jim Carrey as The Grinch. Ryan can quote the Grinch, script his words at the most appropriate times, imitate his voice perfectly, and even has the mannerisms down pat. As I watched Ryan leave Tech Rehearsal practice for his Christmas Concert this week, I witnessed him imitate The Grinch's grinchiness like nobody's business.
Tech rehearsal included all of 6th, 7th and 8th grade chorus, so in other words, a lot of kids. I heard Ryan before I saw him. "Move it, move it! Keep moving! Out of the way!", he bellowed while parting the teeny bopping crowd like Moses. However, Ryan's scowl and his tone of voice was definitely more Grinch, less Moses. Unless of course Moses was a Grinch too.
I stood on the sidewalk, feeling something in between horrified and humored. I mean, while meandering through Target three days before Christmas with the other last minute shoppers who are also looking at what's left of the stocking stuffers, don't you also want to shout, "Move it! Keep Moving! Out of the Way!"? Sometime I envy Ryan's AWEnesty. When Ryan finally reached me, backpack flung haphazardly over his shoulder, hair completely disheveled, he smiled and said hello. I asked what all the "Move it!" was about and he innocently looked at me and told me that there were too many people, it was much too crowded and that he was getting "smushed". I explained that "excuse me please" in a not so bossy voice may get people to respond better to him and he just grunted at me as he turned towards the van and grinchily yelled, "Let's go!".
Ever since Ryan was little, you would find him at either the very front of the line or the very back of the line in his thought out attempt to avoid being "smushed". Ryan's sensitive sensory system did not like being bumped, nudged, touched or smushed unexpectedly so being first or last alleviated the chances by 50%. Even now, as a 13 year old who "knows better", every morning at the bus stop, Ryan sits in the van with the heater on full blast, his heated seat on high and waits until the last possible second to exit the van when the bus is pulling up. Our dear neighbor boy, standing out in the cold, who has not been warming his butt on the heated seat, stands idly by as Ryan pushes past him to board the bus first. Ryan's need to be first may be rude, and a little Grinchy, but, it's safe, and well, the bus is warm.
Some days I laugh about Ryan's Grinch-like demeanor and other days I worry he will end up alone on the top of Mt. Crumpit. After all, living like the Grinch, alone in a cave, would greatly reduce the possibility of getting smushed or bumped and Ryan wouldn't have to worry about all the "NOISE, NOISE, NOISE" from the Jing Tinglers and Electro Who Cardio Shnux and he wouldn't have to worry about feeling different and being accepted for all his kind, quirky, and occasional Grinch like behavior.
In the movie, "How the Grinch Stole Christmas", Cindy Lou Who, is the only Who that wants to try and understand the Grinch. She conducts interviews with people who knew the Grinch before he isolated himself on the top of Mt. Crumpit and she approaches the Grinch multiple times on her own. Little Cindy Lou Who wanted to see what made the Grinch so different from all the other Whos she knew (I'm speaking in rhymes) and she refused to give up. No matter how many times the Grinch yelled at Cindy Lou Who, scared her, and chucked her down the Mt. Crumpit shoot, Cindy Lou Who was determined to reach the Grinch. This persistence, this belief in the Grinch lead Cindy Lou to understand that regardless of how green, hairy, and Grinchy he was, the Grinch really wasn't so different after all.
You see, although Ryan may sound and act a little Grinchy from time to time, just like the Grinch, Ryan is trying to adapt to a world that he doesn't fully understand. A world that is loud, bright and constantly changing. A world where most folks love the sound of Jing Tinglers and the taste of Who-pudding and rare roast beast. A world where fitting in, "growing into your nose", and being like everyone else, is the norm and where being green or different, is just too difficult for most Whos to even try and understand.
Ryan has been so fortunate to have a number of Cindy Lou Whos in his life. People who accept his differences and try to help him adjust to a world full of Whos, without compromising just who he is, and never once making Ryan feel less than any other Who down in Who-ville. These Cindy Lou Whos have come in the shape of therapists, friends, teachers, strangers, and family members.
At some point in time, all of the Cindy Lou Whos in Ryan's life, have witnessed or been the direct target of Ryan's Grinchy behavior. These Cindy Lou Whos could have gone running back down the side of Mt. Crumpit to the familiarity of Who-ville, but, rather than judge my little Grinch or condemn him, the Cindy Lou Whos of Ryan's life, have stayed with him three thousand feet at the top of Mt. Crumpit. These Cindy Lou Whos have helped Ryan discover that being different is really not something to hide from, but, something to embrace and they have helped Ryan understand that the Whos, the tall and the small, are really not so different from him after all.
Even at his Grinchiest of times, when Ryan is using his bossy voice then hiding away in his bedroom just north of Who-ville, I don't think Ryan wants to always be alone. Sure, he loves hiding away in his Grinchy lair, and having all the Whos he lives with leave him alone while he single-handedly kills Minecraft spiders, zombies and creepers, but, I don't believe that Ryan wants to spend all his time living alone on the top of Mt. Crumpit. I believe Ryan, like the Grinch, wants to be accepted and loved for all his differences and occasionally join the other Whos for a "FEAST! FEAST! FEAST! FEAST!".
It's easy to get caught up in what we know and overlook the things and people Who may not fit nicely into our Who-ville world. However, if we step outside our Whoville and look around, we will see that the Cindy Lou Whos of the world really have a much better view, whether they are three thousand feet up the top of Mt. Crumpit or surrounded by Whos sitting down to a feast, differences to Cindy Lou Whos, don't matter in the least.
As a mother loving and parenting a child who may be seen as "different" to many Whos, I am grateful to the Cindy Lou Whos of my world that love and accept Ryan even on his Grinchiest of days. It is the Cindy Lou Whos who have enabled not only my boy's heart to grow "three sizes that day", but, for him to have grown into the proud, happy and confident young man he has become.
As I sat at Ryan's chorus concert on Tuesday night literally watching him "SING, SING, SING, SING" with all the other Whos, I couldn't have been more proud to see him standing in the middle, not at the ends, knowing full well that he could get bumped, nudged or smushed, at any time (and secretly praying he wouldn't) and unleash a little Grinch on the innocent bumping Who. Fortunately, there was no "smushing" there was just beautiful singing and clapping from a boy who once hated all the "NOISE! NOISE! NOISE! NOISE!". It was gift way better than any Electro Who Cardio Shnux.
There will always be days when things don't go Ryan's way, or days where the world gets to be too much and the Grinch will poke his head out of his cave, just north of Who-ville, but, I believe that like the Grinch, Ryan will continue to adapt to the Whos and their boring, typical ways, and thanks to the Cindy Lou Whos of his world, who accept Ryan for being just who he is, Ryan will not be isolated or alone three thousand feet up the top of Mt. Crumpit.
It may be a stretch to say that one day Ryan will "FEAST! FEAST! FEAST! FEAST!" on rare Who-roast beast since he is a self-proclaimed vegetarian, but, with the support and love of the Cindy Lou Whos, Ryan may join the other Whos for a little Who-pudding....as long as it's vanilla....and as long as it says "Jello" on the container...and as long as it's served with a white, plastic spoon.
Here are some pics of a few of Ryan's Cindy (yes, there are plenty of dudes who are Cindys too) Lou Whos. There are many more, and their lack of presence in this slideshow is not due to their lack of love, understanding and acceptance, it's just due to my lack of photo taking and Ryan's Grinch like disgust in having his photo taken.
One of the songs my not so Grinchy boy sang at his Christmas Concert.
To Tell or Not to Tell
Santa will be coming to visit our 'hood this week on the firetruck. It will be interesting to see if now that Ryan is 13, and feels he has reached the age of maturity in all aspects of his life, if he will once again hide in the back of the van from Jolly Old Saint Nicholas. Last year was the first and only time Ryan high fived, spoke to, touched or made eye contact with the jolly old elf, and I just happened to catch the moment with my iPhone.
And although Ryan is the ripe, old age of 13, he still believes, without a doubt, in all things Santa and Christmas magic because why wouldn't he? I mean, if his mother, the one person in this world he has the strongest connection to, the one person he trusts with all that he holds near and dear, the one and only person who is allowed to trim his toe nails on the second Tuesday of the month if the moon is full and a new episode of Gumball isn't on, says it is so, then it must be so.
Ryan does not lie. He sees, black and white, truth and lies, there is no room for anything in between. So, if Dan and I have told Ryan that Santa is real, then Santa must be real because certainly the two people who are to lead by example, the two people he has grown to trust would never, ever lie to him, right? (gulp)
I remember the year when I found out my parents were big, fat, liars. I was 10 and still full of innocent Christmas magic sprinkled with a little playground chatter doubt. The year I wrote all over my favorite "Santa Claus is Coming To Town" Christmas Album, "No such thing." then just as quickly scribbled, "Just kidding!" to cover all my bases. It was Christmas Eve and just like thirsty Little Cindy Lou Who, "this tiny Who daughter had got out of bed for a cup of cold water". As I quietly crept out of bed, I peaked out the door and down the hallway and that was when the Bionic Woman, the woman who was suppose to save those in peril, trampled all over my Christmas with her bionic legs and I literally felt the Christmas magic fade away. There, on my parent's loveseat, sat my brother-in-law clicking my Bionic Woman's head from side to side and under the tree, waiting to inflict more damage to my broken body, sat the Jaws game that no longer looked quite so scary or so fun.
Forget about 1959, "the day the music died", no disrespect to Buddy Holly, Ritchie Valens, and the "Big Bopper", but, I was 10 and it was December 24, 1979, the day that Santa died. I quickly retreated, torn between feeling broken and feeling vindicated that my doubts, my suspicions, and my questions had all been answered, however, it didn't take long for me to realize that I would have been much happier had I stayed in the dark, uninformed, innocent, and thirsty. I went to bed that night with my mouth dry and my heart heavy. I was the last person up that Christmas morning.
Once the jig was up, the lights didn't seem as bright, the cookies didn't seem as sweet, the wrapping paper wasn't quite as shiny and the gifts no longer seemed as magical. The realization that little elf hands didn't dress the Bionic Woman (which I realize now just sounds sort of creepy) took away part of the joy. For many years, I did not tell my parents what I saw that night for fear that would mean the end of it all, so I continued to play along. My Christmas Eve discovery, did, however, cause me to question everything my parents told me up to the point, the Tooth Fairy, Easter Bunny, even the Big Guy upstairs. If my parents lied to me about the most sacred day of childhood, how could they every be trusted again?
With the way Ryan processes information, with his unique understanding of the world, and with the way he puts his trust in me, you can understand why at the age of 13, I still have chosen not to tell and Ryan still believes. Yes, I worry about what other kids might think, but, chances are good that since Ryan isn't really chatty, his Christmas beliefs aren't discussed around the lunch table.
AWEnestly, and selfishly, I am less worried about the social implications of Ryan's childlike heart than I am worried about the fallout that may occur by telling Ryan the truth. I worry that, like it did for me, the truth will change how Ryan sees Christmas, how he feels about all our traditions, and most importantly, how Ryan feels about me. The "little white lies", the fabrications, and the tall tales will be hard for Ryan to understand why we did it and quite possibly even harder for him to forgive that we did. Would changing Ryan's beliefs change everything?
It wasn't all that long ago that I found myself in another to tell or not to tell position. Only it wasn't about an elf and his flying reindeer, this time it was about The A Word and a little boy who was "different". This time, to tell or not to tell, could not only impact a moment, or one day on the calendar, this time, to tell or not to tell could make a difference that would last a lifetime. No pressure, AWEnestly.
I did my research. I must have Googled, "What age to tell your child he has autism?" and "What is the best way to tell a child they have autism?" as well as, "Is there anyone I can offer a large sum of money to tell my son he has autism?". Needless to say, there were various opinions on the first two, and as for the last one, well, there was only a blank computer screen with my face in the reflection as my answer.
I practiced the conversation over and over again in my head, choosing the right words and trying to remember what to say and what not to say. I discussed it, obsessed over it and perseverated on it so much to poor Dan, that he must have certainly thought, I too, had some type of diagnosis (I think he still does). When Dan and I finally decided it was time to tell, we called Ryan into our room, sat him on the bed and we told him about The A Word.
Of course we started with all the things that Ryan was so amazing at, like his musical ability, his phenomenal memory and his big, gigantic heart. We talked to him about how we are all different and how some things come easily to us and how some things are harder for us. We used the example of Kyle's severe peanut and shellfish allergy and how that makes life hard for Kyle in some ways, but, in most ways, Kyle was just like everyone else. We talked about how different Dan and are, how I am much more social and love to spend endless amounts of time in the company of friends and how Dan enjoys and loves his friends, but, also enjoys being alone more than I do.
Then finally we said it, we said the words, "You have an Autism Spectrum Disorder and that makes some things harder for you, like making friends, knowing what to say to friends, how to talk to people and it makes your sensory system more sensitive to different noises, foods, and feelings." I remember as I waited for Ryan's response, shaking from the inside out and feeling certain I was going to hurl all over my bedroom floor. Was he going to scream "noooooo....", was he going to cry, was he going to lash out at us for telling or waiting to long to tell? As my palms grew sweatier and sweatier, Ryan looked at us and said, "Is that it? Can I go to bed now?". That's it? I had this whole ABC Afterschool Special Moment playing in my head for weeks, months, years and all I got was a request to go to bed? Pffft.
I don't think at the time, Ryan fully comprehended what we told him, which looking back was probably good. I think in some ways, telling helped Ryan understand why some things are harder for him than they are for his brother and sister, yet I don't believe he feels much different than either one of them. He is loved, adored, and respected as equally as his siblings, but, I'd be lying if I didn't admit that I worried (and still worry a little), that telling Ryan about The A Word caused him to no longer have the same belief in himself as he did before he knew. I sometimes worry that it's hard for Ryan to believe, "different, not less" and sometimes I wonder if he is angry that we told or angry that we waited so long to tell.
It's funny, I swear Ryan has a sixth sense and knows when I'm in worry mode. Just last week I was worried about his confidence over something silly to only find out that same week in chorus, Ryan's chorus teacher told the other students that he would miss Ryan when Ryan goes to high school since Ryan can always find the right note for the class. When I talked to Ryan about this moment and told him how proud I was of him and how AWEsome he is, Ryan said, "Yeah, I'm pretty freaking amazing aren't I?". Clearly, he still believes in himself regardless of the words I decided to tell him a few years ago.
As I wrap up this post, I can assure you that this will NOT be the year I tell the truth about how small our chimney really is, since just last night, Ryan eagerly walked up to Santa and willingly had his picture taken standing next to the jolly old elf for the first time in 13 years. Who says 13 is unlucky? Yes, I realize choosing not to tell may prompt some teasing from those kids whose parents did tell, or someone else may be the one to do the telling for me, but, like so many things with Ryan, the time will come when he is ready, as it always does, even if it's a little later than it is for others.
I believe that no matter what words I choose or how I phrase it, when it comes time to tell, Ryan will at first be horrified over my years of lies and schemes and it may take a lot of explaining for Ryan to understand that some deceptions fall in between the truth and dishonesty, but, in the end, just like when we decided to tell about The A Word, my words did not change how Ryan believes in himself and I don't think my words will completely alter Ryan's belief in the magic of Christmas. I don't believe one word, will determine the joy Ryan feels at Christmas, just like I don't believe one word will determine how he feels about himself.
A little proof that there is more to Christmas than Santa. Just last week Ryan assured me that there was a "slightly greater than 50% chance" that he will come back and visit me once he is grown and on his own. When I asked, "What about at Christmas time?" he looked at me, like the idiot apparently I am, and said, "Of course I will come back at Christmas. Why wouldn't I? Christmas is family." Even a gift giving elf and flying reindeer can't take that from me, as long as by then I'm forgiven for being a big, fat liar.
Ryan may not always believe in Santa, but, I hope he always believes in himself, because that is a magic that even the Bionic Woman can't take away.
Our Perfect Pagan Christmas Tree
After this weekend, I can't help but wonder if Dan had access to a time machine, if he would skip the whole overrated dinosaur era and choose instead to pop back to the year 1659 and horseback his way over to the General Court of Massachusetts so he could applaud the members of the assembly for enacting a law that made any form of Christmas decorations illegal. A Christmas tree in the parlor, a wreath over your door, or even a twig of mistletoe were all viewed as pagan rituals and a crime punishable by law. I wonder how much time we'd serve for seven pagan Christmas trees, enough white lights to make Clark Griswold proud, and an entire weekend to assemble such paganistic delights?
To say we go a wee bit overboard on decorating would be a gross understatement and to say we "settle" for an average Christmas tree every year would be downright freaking hysterical. Our house glows from the inside out, our electric bill rises as a result of that glow, and our enormous live (well, after we cut it down, not so much "live", I guess) tree usually scrapes up the 9ft. ceilings and takes five years off Dan's life.
Yes, each and every year, I torture my kids (and Dan) by loading up the car, heading to our local Christmas tree farm, where everyone within a 60 mile radius goes, in search of the perfect, family, pagan Christmas tree. Tis the season! It is a family tradition we love (at least this is how I choose to remember it in my mind), until the yelling, the fighting and the cursing begins! Andy Williams must have smoked something green that is not found on a Christmas tree farm when he sang, "It's the Most Wonderful Time of the Year."
Every year, Dan swears we are done with the live tree, tortuous nonsense. Then, Thanksgiving rolls around and we start making our festive plans when Dan reminds us of the hellish experience from the previous year and desperately tries to convince us all that an artificial tree would be more practical, more fun, and more kind to his back, his heart, and his wallet. Here's the thing though, a live tree has become part of our tradition, part of our routine, part of what each and every one of us counts on, including the most routine oriented of us all, Ryan. These traditions, these routines are what we count on as Christmas.
It's funny that for a kid who lives for routine and fights change, you would think the pagan ritual of decorating the house, moving things from one place to another, and disrupting the routine of his surroundings would be an offense punishable by law in Ryan's mind. For some kids with an ASD, these disruptions are indeed difficult, but, fortunately (unless you are the dad carrying the 200lb Christmas tree) for Ryan, it isn't too stressful as long as every holiday tradition, every decoration, and every Christmas tree continues to be the same year after year. Including the fun filled, making memories, perfect, pagan Christmas tree search....at least it's fun for the first ten minutes.
Back when Ryan was small, finding the perfect Christmas tree felt like we had indeed sided with the devil and wound up in purgatory for our pagan Christmas decorating sins. Taking an overloaded, sensory sensitive boy out in the cold, wet, winter snow when he didn't wear hats, mittens, or boots and expected him to trudge through the cold and wind to find the perfect tree, well, suffice it to say, we deserved to be flogged in the town square by the 1659 General Court of Masschusetts.
I have a vivid memory of a navy blue coat with orange trim and matching orange mittens and hat and the boy that I reluctantly stuffed into that coat, hat and mittens. I also have a flashback, um, I mean memory of that same boy lying on his back in the snow melting down faster than Frosty in the greenhouse while I tried desperately to shove those chubby, toddler, bluish hands into those new, fuzzy mittens. I may or may not have sat on top of that boy to put those mittens on...some memories are foggier than others. WE. ARE. HAVING. FUN. DAMMIT. And that fun continued until either we found the perfect Christmas tree, Ryan got frostbite or I slipped deeper into madness with Denial and Clueless by my side.
I glared at the happy families with their smiling children running row to row among the trees, only pausing long enough to taste the December snowflakes on their tongues, while I secretly hoped those snowflakes had just a wee little bit of pollution hiding among the ice crystals. It was in these angry, resentful moments, when Clueless sat down amidst the overpriced Christmas trees with me as I held my melting son in my arms, that I would think, "Why do we do this? We are not like other families."
I'm not sure who I thought the "other" families were. I guess they were the smiling, happy families whose kids had on hats, mittens, and a smile and who did not have to find the perfect pagan Christmas tree, but, who actually "settled" for something between "perfect" and a "Charlie Brown" tree. The families who did not have to concern themselves with sneakers filled with snow because snow boots were too hard, too tall, too much. If I'm AWEnest, the "other" families were the families who did not intimately know The A Word.
It wouldn't take me long to get over myself and count my blessings on my frostbitten fingers as I tried to warm up one of my blessing's mitten-less hands as he cried, grumbled and melted down in the cold, wet, snow.
Yes, sometimes autism makes traditions hard and sometimes traditions makes autism hard. It was easy to understand how our forefathers would have most certainly crossed themselves if they were able to enter our glowing, green, pagan home.
Whether you are the "other" family or a family more like mine, sometimes we get caught up in trying to make memories that our kids will remember well into adulthood that we forget to enjoy the memories of their childhood that are happening right here, right now. That's why it is easy for my selective memory to block out the ugly moments and in 356 days or less, load up the kids, and my begrudging husband and head out to the tree farm...again.
Ryan likes routine, Ryan "needs" routine, but, Ryan would still enjoy Christmas if we opted not to spend an entire Saturday during the quickly passing holiday season in search of the perfect tree. Sure, Ryan would grumble that "it is what we always do", and he may cry a little, like he did two nights ago when I said I didn't know if we will have time to put up the 3,000 twinkling lights outside, "but, it's our tradition". I'd love to tell you that Dan's biggest hold out on changing our tradition of a live tree would be Ryan, but, AWEnestly, it will be me. I guess if Ryan can accept change, so can I????
Please remind me of this post next year, when I will certainly beg for our glorious, fun filled, perfect tree tradition to remain the same. Oh, wait, never mind, Dan will probably wrap a new artificial tree in a printed out version of this blog. As this holiday season continues and we uphold more of our holiday traditions like watching Christmas show after Christmas show, I will snuggle in under my blanket with the glow of our perfect Christmas tree reflected in the eyes of my beautiful boy, who hates holiday change as much as me.
I plan to try and sit back and enjoy this holiday season without thinking so much about what the kids will remember as their "traditions" when they are grown. I will try not to stress over changing and evolving traditions and I will spend a little time being grateful that the scrooges of the 1659 General Court of Massachusetts opened up their hearts and changed the anti-Christmas decorating law, because I most certainly would have been burned at the stake. Just to be sure though, if that time machine of Dan's shows up anytime soon, I will set it to December 2015, when we are out at the tree farm again and I will make sure we all are smiling.
Keeping it real, raw, and AWEnest while laughing, loving and living in our world
touched by Autism.
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Definition of Awe: