As always, thank you for being here, for being aware, accepting, kind and AWEsome!
All my heart,
Hey everyone, I know folks were looking to duplicate the poster I made for my local schools so here it is. I just ask that you respect my work by keeping The AWEnesty of Autism copyright at the bottom of the poster as well as give my niece Morgan McAfee the props she deserves for making my words and Ryan's heart look so cool.
As always, thank you for being here, for being aware, accepting, kind and AWEsome!
All my heart,
If I have any regrets since we first heard The A Word, it would be the endless hours I spent worrying about the F Word, no not that one, the F word I’m referring to is much more caustic to my heart and my ears than the one that rhymes with truck. The F word I’m talking about is future. Yeah, THAT F Word.
You get it don’t you? The future is unknown, the future is shrouded in what if’s, the future does not provide a money back guarantee if you aren't satisfied, so, the future scares the hell out of me. And with all that uncertainty and all that worrying, that one F word, caused me to miss so much of today, worrying about tomorrow.
Look, I know I can’t bury my head in the sand to hide from what scares me, even though I really, really like the warmth of the sand and the way my head feels when it’s shrouded in the darkness of denial and ignorance while buried there, but, I can try to appreciate the here and now while planning for the there and then. Every so often, when my head is nicely buried in the sand on a beautiful beach somewhere and the scary future is unable to find me, there are moments that yank my head up out of the sand and I come face to face with the future.
The most recent moment was when I was asked to complete a parent survey for “transition planning”, for Ryan’s FUTURE. At first I thought nothing of it, I opened the survey and began to fill out the easy stuff, you know, his name, date of birth, graduation year, etc, but, then it got scary and since there was no sand for me to stick my head in, I considered sticking it in a really full glass of wine instead. I thought, if I can’t hide from the future, maybe I could at least numb myself to it a little bit.
I didn’t though. I faced that damn future (and that survey) totally sober and sand free and it sucked. You see, as long as Ryan is sheltered in the protective educational system bubble, I know that not only will his teachers look out for him, but, by law, they HAVE to support him, educate him and keep his best interest at heart. That nice bubble will burst once the future sneaks up, grabs him and chucks him into the deep end of the adult pool and there won’t be nearly as many life preservers. And there won’t be sand deep enough for me to bury my head into.
Questions like, “Will he be able to accept criticism from a future employer?” and “Does he or will he be able to talk in a respectful tone at all times?” At all times? I mean, come on, we have all had that boss that we KNOW we were smarter than when we came out of the womb and it’s very, very hard for those of us who understand the social norms of the job hierarchy to remain respectful to those kind of people, so will he talk in a respectful tone "at all times"? That depends on how ignorant his boss is. There wasn’t a box to check for that option.
There were more questions about independent living, handling money, transportation, and relationships. Since there was no sand in my kitchen, I found myself staring at that bottle of wine, but, it remained corked as I finished the survey. Most of my answers involved worry, worry, guess, worry, worry, hope, worry, worry pray.
I realize that none of us know what the future holds. And whether you have a kid with autism or a neurotypical kid, the future does not provide any guarantees, any reassurances or any promises for anyone, but, for some who are seen as “different”, who don't quite "fit" what society expects, treading water in that deep end of the adult pool has to be exhausting. And that thought pulls at my mama heart and makes me want to stick my head back in the sand (or in that really full wine glass).
But, I don't. You know why? Because the future is coming, whether I like it or not. Yes, I can appreciate the here and now, but, I can't be blind to the there and then. My son is two years away from the deep end of the pool and sticking my head in the sand isn't going to prepare him for any life preservers that he may need when that protective educational bubble pops. He doesn't have the luxury of the sand or the wine, so neither do I.
So, I finished that damn transition survey with little to no guarantees of what The F Word holds for my son and I crossed my fingers for a future that is filled with hope, neurodiversity and acceptance. Then I left that survey and my worries of tomorrow behind on my laptop and checked into the present, where my son currently lives, so I wouldn't miss another minute of today.
To my son's teachers,
I was there once. In your seat.
Ok fine, maybe it wasn’t your actual seat, at your actual desk and I didn't have a sea of faces staring at me waiting to learn, but, I still know what it feels like to sit in that seat to wonder…to question…to not understand. And although you may have hundreds of faces watching and waiting for you to figure them out, there is one face in your class that is familiar to me and I have had that same face looking at me waiting too. Waiting and expecting you to get it, to get him.
There was a time when, like you, I didn’t understand autism. A time when I didn't understand how autism impacted him in ways that seemed questionable. Does his new winter coat really “hurt” because of his sensory struggles or does he just not want to go outside? He can recite an entire movie, yet, he can’t tell me about his day, so is finding his words really that difficult or does he just want to watch Spongebob instead? Are changes in routine really THAT hard and he can't bear the thought of going to grandmas on a weekday because we only ever go there on weekends or does he just not want to give up Minecraft this afternoon?
Is it all really autism?
I was you. I was ignorant and as his mother, it’s shameful to admit, but, at times, I was a doubter. Yep, there, I said it and I’m betting if you haven’t said it, you have thought it. In fact, I was so skeptical at times that I used to ask the therapists, how do I know where autism ends and his stubbornness begins? The answer: you don’t.
There is no way to tell where my son’s autism begins and ends. Autism is not a continuous line with a start point and a stop point that allows you to see where it ends and where other traits, traits that may seem like stubbornness, laziness, carelessness, or even rudeness begins. Autism is intertwined in all that he is and all that he does. It does not define him, but, it is a part of him and there is no on or off switch. There is no way to really understand why one day he seems “checked in” and other days he seems “checked out” and because of that, my son wears a cloak of competence right over top of the five Hollister shirts he wears every week. That cloak can be suffocating to him and confusing to you.
How can he do a task one day and not the next? I mean, if he can read this book and write this essay, why can’t he read that book and write that essay? If he can spend hours focusing on Minecraft, but, can’t pay attention to your lecture on the Civil War for five minutes, is that autism or is he just apathetic? If he is mumbling or scripting softly to himself is his sensory system overloaded because the kid next to him wore too much cologne today or because he doesn't give a damn about finding the area of a quadrilateral? If I had the answer, I would be rich, my kid, and kids like him, wouldn’t struggle and you wouldn’t need to open a bottle of wine at the end of the school day.
Bottom line is I have to trust him, I have to believe him and I try not to doubt him because he is autistic and I'm not.
I will never know why things that were easy yesterday are hard today. Could it be the new socks he is wearing? Could it be the smell of the new floor polish the custodian used last night? Could it be your vibrant patterned shirt that is distracting him? Could it be the two hour delay that changed the schedule or the fire drill that disrupted his work? I don’t know, and honestly, he might not know either, but, because of that cloak of competence, it leads you to wonder…is it all really autism?
Don’t get me wrong, I have no doubt that there are times throwing out The A Word might benefit him, might help him take the easy path, because honestly, who among us doesn’t want easy the majority of the time, but, just like I have not really sat in your seat, you haven’t sat in his. And neither have I.
We have to trust him, we have to believe him, and we must try not to doubt him because he is autistic and we are not.
Many autistics do not approve of the puzzle piece as the logo for autism because they do not believe there is anything missing or puzzling about them. The logo was created by neurotypicals for neurotypicals. If you ask most people with autism, they think YOU are the mystery. And as a student, most probably don’t care if you figure out autism, they just want you to figure out them. A task that is easier said than done with a sea of faces waiting for you to get each and every one of them.
I don’t have the answers for you. Sorry. My kid might though. Rather than ask why he didn’t complete the assignment, ask what he might need to help him complete it. Rather than assume he is being lazy, ask if he didn’t understand the homework or did he just get sucked into killing more creepers in Minecraft and forgot to do it. You might get a straight answer, you might not, but, if you ask, he will at least know that in the sea of faces staring at you for 52 minutes, there is one face that is grateful you tried to really genuinely see him.
I was there once, in your seat, and some days, I still am. I empathize with you, I legitimately do. So, scooch over, and let me sit down. Maybe between my son, you and me, we can "get" him together, but, we have to trust him, we have to believe him, and we must try not to doubt him because he is autistic and we are not. As his mom, I am always here to help him and you, so, please don't ever hesitate to ask me how to get from there to here or to invite me over when you do open that bottle of wine.
Thanks for listening, thanks for trying, thanks for teaching.
I tried to hide my tears. Maybe everyone at the gym who happened to see my wet face would just think I was really pushing myself on the elliptical. Maybe for the 7:30AM regulars they thought, “Wow! She is actually sweating today!” (unlike most days when "she" jumps off in 15 minutes because the elliptical machine is so freaking boring). Chances are, for most of my fellow morning elliptical users, my red eyes gave me away.
Damn social media. I have such a love-hate relationship with it. I love that we can meet in this little community huddled in our very safe, comfortable corner in the internet universe and share our common concerns, triumphs and general bitch sessions, but, I hate that social media is a regular reminder of how alone my son really is, both in the real world and the social media one. And I hate that I am reminded of that while on the elliptical machine at the gym because that stupid machine is so boring that I have to check Facebook.
I know that sometimes my son makes a conscious decision to be alone. Alone, after all, is easier. However, sometimes I believe he is alone because people, especially teenage people, don’t know what to do with “different” and rather than do the “wrong” thing, they choose not to do anything at all. Most of his fellow classmates adore him. They are kind, caring and genuine, but, they legitimately don’t know what to do after, “Hey Ryan” and neither does he. I don’t fault them, but, I can educate them so that one day they may see that if they try, if they make an effort, then there is no “wrong” thing.
So for you teens out there who might want to be friends with my son, or maybe another teen with autism, here are the only words you need to know to get it “right”. Here are words to friend by:
1. Ask. Ask if he wants to go to the movies (he might). Ask if he likes Star Wars (he doesn’t). Ask if he loves pizza (he does). Ask if he eats frozen yogurt (vanilla only). You need to ask in order to know.
2. Accept. Accept him just like he is. There may be some things he does or he says that may not make sense to you, but, they make sense to him. Accept it. Accept him. And maybe, once again, ask. Ask him why he does what he does, so, then it will make sense to you.
3. Consider. Consider him. Include him. Think of him. If after school or rehearsal or the football game, you are all going for pizza or frozen yogurt, even if it seems he prefers to be alone, we all like to be included, we all like to think, “Wow, they considered me!”, “They included me!”, “They thought of me!”. Even if he chooses not to go, he will remember that you considered him.
4. Educate. Educate yourself about autism, but, educate yourself about him. Inquire why he is so particular about food. Find out why routines are so important to him. Learn why "new" is hard for him. Discover why he loves Hollister tshirts in gray and blue only.
5. Forgive. Like any friend, my son might make a mistake. He might be brutally honest because he doesn’t know any other way to be. If your hair stylist went a little crazy with your latest "do" and it looks, um, bad, he might tell you. It’s not a personal attack and although it may hurt your feelings, he is just being honest because being honest comes naturally to him. The truth might hurt a little, but, honesty is a great quality in a friend (and your hair will grow back).
6. Ask (again). He may have said no every single time you asked him to join you, but, keep asking. One time he might just say yes.
7. Space. If you do ask him, if you do consider him, if you do include him and if he says yes, he may need a little space after a period of time. He will know when he needs that space and when he is ready to join you again.
8. Time. It takes time for him to connect, to trust, so you need to give him some time. If you give him his time, I promise he is so worth yours.
9. Remind. He may need you to remind him about practice, rehearsal or where you are sitting at the football game (repeatedly). If he forgets, again, it’s not personal, it's not that he doesn't value your friendship, he just needs another reminder that will help him see that you considered him.
10. Scripting. He loves memes. He loves to say lines from memes, movies and television shows and use them at just the right time, in just the right way. He was basically meme’ing and GIF’ing long before it was cool. He might show YOU a thing or too. But, you have to ask (see #'s 1 and 6) in order to understand.
11. Literal. He is very literal with language, so sometimes slang, sarcasm and abstract language will “go over his head”. If he looks confused or doesn’t respond, when you ask, him "What's up dude?", explain what you mean in a literal way ("Hey Ryan, what are you doing?") then he will get it...and you.
12. Notice. If possible, a little notice will increase the liklihood that he will say yes if you do ask and consider. He does much better with advance notice and planning because changing plans is difficult for him.
13. Individual. Remember that he is an individual not a collective disorder. He is Ryan, not autism.
14. Respect. Even after you ask, educate, and consider, you still might not get him, but, please still respect him. Chances are really good that he doesn't quite get you either, but, he will always, always respect you.
15. Kindness. Just be kind. Period. The end.
Ok fine, it wasn't the end. Here is one last tip. Just trying to be his friend, even if you don’t get something right, you will never, ever be wrong.
I ignored the house phone when it rang. No one who really needs us calls that phone anymore. Then my cell phone rang, and since it was a local number I didn't recognize, I ignored it too. After all, it was Christmas break and my only goal was to hang with the family, eat cookies, drink wine and finish Season 2 of The Crown.
However, when the voicemail message alert popped up on my cell phone, I decided that even if I did want to see how Queen Elizabeth handled a remorseful Jackie Kennedy (even classy, grown up girls can be mean), I needed to check my message.
As soon as I heard the voice, I felt the hair on the back of my neck stand up. When a school official is calling over Christmas break you know they aren't calling to see if you got an Instant Pot for Christmas. Then I heard words like, "red flags", "teacher concerns", "out of the ordinary" and "worried" and that’s when the cold sweats began.
In a writing assignment, Ryan had written words that lead his teacher to all the words I just wrote above. I was literally trembling as I called the school administrator back. And as quickly as this nice man answered his phone, he was cut off and gone. I prayed after I yelled the word that rhymes with “duck” REALLY, REALLY, REALLY loud, that we truly were disconnected and that he didn't hear that expletive come so easily and freely from my mouth.
As I waited, hoping this nice man who was working over his break would call back this really sweary mom back, the worst case scenarios went through my head. As one fear lead to another, I sat on the couch willing my phone to ring and tried to calm myself down, but, the glow of the Christmas trees lights reminded me that any type of teacher or administrator calling over their sacred holiday break equals some type of big deal. Bigger than the deal Queen Elizabeth just made with the Prime Minister from Ghana on The Crown.
It only took 60 seconds for this school administrator to call me back, but, in those 60 seconds my brain went down the rabbit hole. Did he write about guns or bombs? I mean he spent all break killing creepers on Minecraft so it made sense. Did he script something that would be perceived as a threat? Did someone hear him script, “I have crippling depression” from his most favorite meme and think a call to Crisis Intervention was needed? My son has NEVER been violent or the least bit aggressive, but the rabbit hole is a place where only ugly thoughts creep in your head.
When the phone finally rang and I got the story, none of my catastrophizing scenarios came true. What this school administrator shared was sad, but, nothing like the scenarios I had created in my head. And after Ryan and I discussed it, Ryan’s words that were concerning to some, made sense to me.
As much as Ryan's words and his worries hurt my heart, I was so proud of Ryan’s ability to communicate his feelings and his concerns. What I wasn't proud of was my reaction. Damn it, I hate that rabbit hole.
Yes, the sense of panic with a call over Christmas break was somewhat worthy of alarm, but, to immediately go to such awful scenarios had me feeling shameful. I know my son better than anyone and there isn't an aggressive bone in his body, yet, I know when he scripts, he might not know the impact his words could have on people who don’t know him.
Whether it's on AWEnesty, my Facebook page or at an IEP Meeting, I beg and plead for everyone to not see the label, but, to see my son, yet, with one phone message and without so much as a backward glance at my son whom I know so well, I jumped both feet first down the rabbit hole and did exactly what I ask no one else to do, I saw autism first and Ryan second. And the guilt of it made me feel so ashamed.
Rather than wallow in my own shame and guilt, I decided to do something about it. I decided I needed to apologize to my son. After we discussed what had caused his teacher to be somewhat concerned and precipitated the phone call, I told him, "I was worried it was something else". Then when I told him about my trip down the rabbit hole he said, "Well, that's not a surprise since you over worry about everything."
Ryan's right. I do "over worry" about everything, like seriously, everything. So maybe my "over worry" to a holiday break phone call from school personnel and jumping down the rabbit hole wasn't quite so out of character for me. As for my son, who never disappoints me, he stayed true to his character too by pulling me out of the rabbit hole, as he has so many times before by being exactly who is meant to be.
He teaches me so much.
Every. Single. Day.
As we approach the end of another year, we tend to look back and reflect. For some of us, we can't wait to flush 2017 and get on with a new fresh start as we excitedly await the ball drop in Times Square, while others may have heavy hearts and trepidation for what 2018 may bring.
Every New Year's Eve I found myself somewhere in between. Straddling the time gap between what was and what will be. Begging Father Time for just one more moment here before he pushes my kids and me there. Holding onto the past while looking forward to the future.
It's easy to preach "live in the moment" or "seize the day" or "take it one day at a time", but, it's not quite so easy to do. For this old lady, who is somewhat reluctant to step forward and leave a great 2017, I think I'm even more concerned about what 2018 will bring. You see, moving forward means one more year closer to the end of Ryan's high school career, so the fear of "what's next" tends to reverberate through my brain as loudly as those damn horns my kids love to blow on New Year's Eve.
The year 2018 will begin the start of college searches, SAT and ACT preparation, drivers license and career ideas. All of which is equally exciting and terrifying and signifies Ryan's movement towards leaving this protective bubble I've tried to create for him. What if 2018 is the year the bubble pops?
Before the backlash begins about how fortunate he is to be able to plan such a future, I want you to know I am incredibly grateful he can, incredibly proud he wants to, but, still incredibly scared he plans to. There are not enough heart emojis in the world to represent my pride in how far he has come and how much work he has done since we first heard The A Word over a decade ago.
What has changed in this past decade is not my worry and fear about what Ryan can or can't do, because he has proven time and time again that if he wants to do it, he can do it. What worries me, as we continue to move forward into the future, is whether or not a college, a boss, the world believes he can. Are they ready to embrace him? Are they ready to accept all the wonderful that comes along with neurodiversity? Are they willing to think outside the box and see how beautiful the inside of a different box can be?
Unless that ball in Times Square is a crystal one, I won't be able to see what is in store for my son in 2018 as he stands next to me counting down to his future, but, what I can see, what I can predict, as I straddle the gap between what was and what will be, is a courageous teenager who continues to prove that without a world of "different" the world would most undoubtedly be less.
So bring it 2018, my son is waiting for you (even if I'm not).
Ahhhh...Christmas, the season of giving AND receiving, is drawing nigh. That glorious time of year where we point and click and hope that the UPS man delivers THE perfect gift for everyone on our gift buying list. We search this site and that one, knowing full well that there is NOTHING rich Aunt Betty needs that she can't already go out and buy herself, but, we painstakingly search anyway because it’s better to give than to receive. Since frankincense and myrrh aren't on any Top Gifts of the 2017 Christmas Season lists, I'm sure The Three Wiseman would have agreed that an Instant Pot from Amazon is an acceptable substitute.
And as you peruse each and every website, you cross your fingers hoping that the perfect gift will magically appear on your screen believing deep in your festive Christmas heart that THIS is the year you will find THE gift that knocks dear, old Aunt Betty’s socks off! Of course you know that even if your gift is a dud, Aunt Betty will still appreciate your effort because after all, it's the thought that counts right?
Unless of course you have a brutally honest kid with autism who will let you know that your thought does not count AT ALL if you didn't get the right gift. Sorry, no matter how much time you took to painstakingly find a gift for my son, if it sucks, he will tell you even though I asked him not to. At least 350 times in the car on our drive over to your house.
Every year at Christmas, on top of my normal holiday stresses...shopping, decorating, baking (ugh) I also have to add the “OMG what will he say THIS year and to who” stress! Because my son, has in fact, said the wrong thing when the gift was not the right thing. Repeatedly. To lots of people. For years.
Things like, "That's the worst gift ever" and "That was a terrible idea" and let's not forget my own personal favorite, "There isn't enough money on this gift card to buy ANYTHING". Oh. My. God. I can’t tell you how many times I tried to crawl into the Christmas tree or dunk my head in the nearest Christmas punch bowl in an attempt to hide from such brutal honesty that just came out of a kid’s mouth who is old enough to "know better”.
He does “know better”, but that doesn’t mean he still won’t let you know that your gift sucks and that you should have known better not to get him THAT gift. Yeah, such comments may not be mannerly, kind or gracious, but, damn, if it's not admiringly honest. There isn't a single one of us who haven't had to fake our way through an awful gift. And yes, we may know it's the thought that counts but that still doesn't keep us from getting in the car from grandma’s house and saying, "Did you see (insert worst gift you ever got here)? Did she honestly think I would like it?” I don't know that bashing grandma’s gift behind her back is really any worse than telling her straight up, “I'm sorry Grandma but we just don't have wall space anywhere in our house for this lovely 60x80 photo of a whale smiling. Maybe your neighbor would like it?”
Ok, fine, maybe faking it is better, but, what if you can't fake it? What if every neuron firing in your brain screams that you have to be honest ALL THE TIME, that you can't EVER lie and that even though you love Grandma and you know how very much she loves you, the gift grandma just gave you really, truly sucks. Brutal honesty sometimes is a hallmark sign of autism. This honesty is not meant to hurt your feelings, even though it may, it’s just that in the same way individuals with autism struggle to recognize facial cues and body language, they also struggle with lying to someone in order to spare their feelings. To many individuals with autism, lying is more offensive and wrong than sparing your feelings. In fact, your feelings probably don't even enter their mind, not because they don't care about you, but, because in their very literal mind, there is truth and lie, there is no fake it. The truth may hurt, but, their intention is never to hurt you.
This same kid who is “old enough to know better”, who has honesty engrained in him at a cellular level, may bash your sucky gift but they will never lie to you, they will never pretend to like you if they don’t and they will ALWAYS tell it like it is. So if they say your fruitcake is good, than hot damn, you better believe you make a good fruitcake.
I’ve decide that this year, I will continue to remind my son to be kind and be respectful, but, if he can’t, if his need to be brutally honest trumps him “being old enough to know better”, I’m not going to worry and add that stress to my list this year. I’m not going to make excuses for my son being exactly who he is. I will let you know how grateful I am that you tried and that to me, it really is the thought that counts, even though my son will never utter those words to you. His honesty is not meant to hurt you, he just really struggles NOT to tell it like it is.
This Christmas, if you are told that your gift is the wrong color, a terrible choice or that it just plain sucks, hang onto the receipt and if you are quick on your feet, blame the UPS man because I’m not hiding behind the tree or in the punch bowl this year and neither is my kid. It may be the thought that counts, but, scoring THE perfect gift for Aunt Betty and my son, well, that counts for something too. Happy shopping!
For years I held out hope, maybe THIS will be the year he will try a bite of stuffing! Maybe THIS will be the year, family members won’t nag him to “try it”. Maybe THIS will be the year the stares and whispers of why I bring Velveeta Shells and Cheese and let him eat THAT will be stifled. Maybe THIS will be the Thanksgiving my son feels comfortable and welcome. Maybe THIS will be the year, friends and family can hold the “but”.
It’s funny, I gave up on THIS being THE year, years ago, because I accept and understand my son, but, we all have those family members who think that maybe THIS year things will be different, which translates to, HE will be different. If you have one of those family members, feel free to print this out and put it on the table as a sort of placecard for guests.
THIS Thanksgiving won’t be any different than last year because:
1. He still has autism.
2. He has made great strides in sooo.. many areas and we are sooo... proud of him, but, his diet isn’t one of those area.
3. He still has autism.
4. He may now wear khaki pants instead of fleece pants to the Thanksgiving table, but, he still is not putting wet, soggy stuffing in his mouth. Nope, didn’t happen last year, isn’t going to happen this year.
5. He still has autism.
6. I know his diet isn’t great, he knows his diet isn’t great, but, what his brain knows and what his body feels don’t match, and your pumpkin pie isn’t going to sway that connection.
7. He still has autism.
8. We are so proud of all that he has accomplished, both academically and musically this past year, and we know you are too, but, making District Chorus and getting a B in College Prep English won’t make your mashed potatoes any less lumpy to him.
9. He still has autism.
10. Can you believe he went to the Homecoming Dance this year and danced with friends and stayed over an hour?!! Wow, right? Yeah, he has made some gains socially, but, he still isn’t eating “even just a tiny bite” of that turkey.
11. He still has autism.
12. I’m thrilled he filled you in on the upcoming musical he is a part of and I LOVE how grateful you are for getting him to chat with you for a few seconds, but, his sensory system is still so sensitive to different food textures that his taste buds think your cranberry sauce will kill him.
13. He still has autism.
14. I love that you see how hard he is working, how much he has grown and in sooo…many areas, so this year, how about just commenting on all of that, praising him on all he has accomplished so he and I can hold the buts because…
15. He still has autism.
Ryan had autism when he was a picky toddler and he has autism as a teenager and is still just as "picky" when it comes to eating. He is not trying to be difficult, he is not "spoiled", he is autistic and his taste buds don't "feel" food the way yours and mine do.
Some day, my son may try a bite of turkey, some day he may think that the pumpkin pie tastes as good as it smells, but, that will be on his terms if, and when, he is ready. So, I would love it if THIS is the Thanksgiving YOU change so my son doesn't feel like his progress is diminished by the "buts" while you pass him the rolls because he will absolutely eat one of those, no buts about it.
“I don’t want love” said, Shaun Murphy in this week’s episode of The Good Doctor, and of course to a mother loving a teenage son with autism, it felt like Cupid just died.
First of all, I know Ryan is not Shaun Murphy and Shaun Murphy does not, and can not, represent every individual who falls somewhere on the autism spectrum, but, for this mom, hearing a young autistic man (albeit a fictitious autistic man) say those words hurt as much as they did when I obsessed over the words "love" and "autism" all those years ago.
I swear it took like 30 seconds after I heard, "your son has autism” for the big questions to begin. Oh my God, what if he never gets married? What if he never finds love? What if after I’m gone he is alone? Thanks to The Good Doctor, those questions went running like a freight train through my head again this week. Then of course, the biggest question of all, why the hell do I watch this sh** when my kid is living it…sort of.
I have to admit, whether it’s The Good Doctor, Atypical or Parenthood, although I like that autism is at least being portrayed on television (even though some critics do not think autism is being portrayed well or by the right people, but, that’s another blog), I sometimes wonder why I put myself through it. Why do I watch Dr. Shaun Murphy struggle to understand sarcasm and jokes? Why do I watch others mock him and look down on him because they don’t understand him? Why do I watch Dr. Shaun Murphy crawl into bed in a lonely, barren apartment and struggle to sleep because his kitchen faucet is dripping? Why…because in many aspects, I am just as clueless about autism as Dr. Shaun Murphy’s colleagues.
I will never understand why the touch of paper to Ryan feels so bothersome. I will never know how hard he has to work to process a typical conversation so he knows how to respond. I will never understand the degree of anxiey a change in routine causes him. And although the question has plagued me for years, I may never truly know how Ryan feels about love, marriage and fatherhood. And yes, I know watching a fictitious character on television may not explain how my Ryan feels, but, it does give me insight that I may not ever get from my son.
I’m not autistic, but, I can’t imagine that anyone, autism or not, does not want love. Of course, I can't know that for sure. What I think is important to remember is whether it’s Dr. Shaun Murphy or my son Ryan, love looks different for everyone. Dr. Shaun Murphy looks at his attending physician planning a wedding and sees that as love, but, the love he had for his bunny and his brother was no less than the love a man has for a woman. I think we all love people differently. We don’t love our parents the way we love our children. We don’t love our spouses the way we love our friends, but, our love for each group is not less, it’s different. So who is to say that the way an individual with autism shows love or feels love is any less than any neurotypical individual? I don’t believe for a second it is and neither should you.
Whether or not Dr. Shaun Murphy or my son Ryan want love and find love is yet to be determined, but, what this mom has to remember, is that if Ryan chooses love, how he expresses his love and his emotions may look different than mine or yours, but, they are never, ever less.
Growing up, we all knew who was “in” and who was “out”. We knew that this kid was cool and this kid was not. We knew who belonged to the jock clique, the band clique, the smart clique, the stoner clique and the kids who didn’t belong to any clique. And I know that even though we knew about it, we lived it, and sometimes we were hurt by it, we did not have access to where we belonged and where we didn’t 24 hours a day, 7 days a week like our kids do today. The Social Media Sh** Show is a show our kids sit through every single day, even if they didn’t buy a ticket.
Last weekend was Ryan’s high school homecoming dance. He got ready alone, he ate dinner alone and he stood in the endless line to get in alone. I tried hard not to let my sadness of seeing him standing in a line of hundreds of kids alone overshadow the courage it took to stand in that line alone, but, I still sobbed as I pulled away. Then I went home and looked on Facebook…the grandest of The Social Media Sh** Shows and I cried harder.
I saw this kid who likes Ryan, that kid who admires Ryan, this kid who was in the musical with Ryan and that kid who sat next to Ryan in Algebra all smiling with their dates, their friends, their clique. I get it, I’m not naïve enough to think that on one of the holiest days of the high school year, kids are going to go out of their way to think outside their social circle and include someone new, so they certainly aren’t going to include someone they don’t quite get, someone who is “different”. I don’t like it, I think it sucks for my son, but, I honestly recognize that they are teenagers trying to find their own way too.
What I don’t understand, is the need to torture myself further by getting my ticket to The Social Media Sh** Show and reinforcing my awareness of the high school hierarchy by continually checking Facebook and Instagram.
Yet, with each sharp knife to my heart from this update and that one, I continued to scroll and see face after face that I recognized who all think Ryan is "so sweet". I told myself to put my damn phone down and go open a bottle of wine (I did open the wine, but, kept scrolling as I poured). I thought to myself, maybe I should have posted a photo of Ryan standing in line alone to see the impact that might have, but, I knew it would have little impact on the kids because, well, they are kids, but, then I thought maybe such a stark picture of what reality is like for some kids would have had an effect on parents. Then as I continued to scroll, I realized we parents feed into the frenzy.
We spend hundreds of dollars on the clothes, the nails, and the hair. We rent limos, make dinner reservations, secure a perfect place for the perfect photos, and pray our kids get invited to “the” after homecoming party. I’m not pointing a finger at anyone, unless of course I’m standing in front of a mirror, because I was just as guilty of chumming the waters when my oldest kid was “in”.
All I could think, as my fingers kept scrolling, is that if it hurts me as a mom, imagine what it is doing to our kids? Imagine what it must feel like to pick up their phone, enter their pass code and within seconds they see and they know right where they stand that day and where they don’t. They can see instantly as it is happening if they made the cut or not.
It. Must. Be. AWFUL.
Here is the funny thing, as hard as The Social Media Sh** Show is on me, my Ryan could care less about it. Even if they were giving tickets away to the show that included a lifetime supply of Auntie Anne’s Cinnamon Sugar Pretzel Nuggets, he still wouldn’t go. He has a Facebook account which he NEVER uses, an Instagram account that he might look at once every other month and no Snapchat or Twitter accounts. Some might argue that since social struggles are a hallmark sign of individuals with autism that it makes sense Ryan isn’t interested in the social going on’s of others. Some might argue that the pain of not being included is too much so that’s why he has no interest. And some might believe that since Ryan doesn’t have many friends, he would never get followers and likes, so what's the point? I'm here to tell you that it is none of that, and I ought to know, because I went straight to the source.
And in Ryan’s words, “Social media is about people acting ridiculous and that’s not who I am plus, I think it’s a complete and total waste of time.” Where were those words of wisdom on Saturday night when I spent two hours wasting my time on The Social Media Sh** Show when I could have watched two episodes of Outlander?!
Once again, Ryan has proven that he is smarter than me…smarter than most of us.
Ryan came home from the homecoming dance and said it was “great”. He met a friend there, he danced and he stayed for an hour and a half. Do I think he would have liked to have been included for something with someone before the dance? Of course I do. Do I think that if he would have been included that he would have immediately posted a pic of that moment on social media for everyone to see? Of course I don’t, because in his words, “What’s the point of it?”
I read an article once by a researcher who believes that autistic individuals are more evolved than neurotypicals. Well, in the world of social media, my kid is a young man walking on two feet and I am still scampering around on all fours like an ape. I guess that puts him in the Evolved Clique. We should all aspire to be in that clique and I hope someday I am...right after I post this blog to my Facebook Page.
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