Two funerals, three deaths, four days. No, that's not a clever name of a Hollywood movie and no, Hugh Grant was not there. "Two funerals, three deaths, four days" are six words that describe a crappy week for some people I really love.

No one likes to go to funerals. Funerals are sad. Funerals are depressing. Funerals are a reminder of our own mortality and how fleeting life really is. Even though we don't like to go to funerals, even though we don't want to go, and even though we try and contrive any excuse possible as a way not to go, most of us don something black and show up anyway because it is the "right" thing to do.

We may have ongoing battles in our head as to whether or not we should attend the funeral. "Well, I didn't know him that well, but, I use to work with his wife ten years ago." Or "I can't go, I have to ______ (insert any word here from "work", to "skydive", to "wrestle alligators") and the family probably won't expect me to go anyway." And my own personal, I hate funerals go to, "I think it's just for close family and friends.". Whatever battle wages on inside my head, "supporting the family" usually wins out for me, and off I go, dread in my heart, tissues in my hand.

As I attended my second funeral in four days last week, I watched the Funeral Director who has officiated every funeral I have attended since I was a child, and I wondered, how does he do it? Such sadness, day in and day out. Grieving families and friends tending to matters their hearts want nothing to do with, but, handling the affairs anyway because their brain insists they must. I guess Funeral Directors recognize what most of us try not to think about, that death is a part of life. Death is inevitable. Death happens to all of us. I'm not implying that Funeral Directors have a lack of compassion, in fact, to do that job, I think you would need to be very compassionate, but, I think you also have to see death in a much more concrete, literal way.

I believe like a funeral director, Ryan gets the black and white version of death. Death is a part of life. Death is a part of nature's life cycle. Death is inevitable. Death is gone. The ambiguity, the abstract ideas of death, well, that is much harder for Ryan to understand.

Last week, I had to share with Ryan the sad news of the death of our dear, kind, next door neighbor who always happily celebrated Ryan's triumphs with me and frequently eased my worried mother's heart, at his setbacks. Through my tears, I watched as Ryan's brain took in the information then he quietly laid his head on his knees. As tears pooled in the corner of his eyes, there were no questions, there were no words exchanged, there was just quiet understanding.

Later, when I asked Ryan if he wanted to attend the funeral services, with total panic and horror glimmering through his own watery eyes, he yelled, "No, I can't handle it Mom. My body can't handle it. Please don't make me go.". I calmed Ryan down and assured him that he did not have to go. Relief washed over his face, as his body visibly relaxed. Ryan told me, in no uncertain terms, that he decided he would "never attend another one of those for the rest of his life." AWEnestly, who can blame him? Wouldn't that be the choice we all would make, if it were as simple as not wanting to go?

Understanding and processing death is difficult for all of us. When you add the black and white, concrete, literal thinking of someone with autism, processing and understanding death is even tougher.  

In the movie, Temple Grandin, produced by HBO, Temple (played AWEsomely by the fabulous Claire Danes), asks the question most of us at some point and time have wondered, "Where do they go?". After seeing her favorite horse at boarding school die, Temple asks her teacher, "Where do they go?". The question comes up again, after watching cattle die at a slaughter house, "It was here, and now it's gone. Where does it go?". And yet again, at the funeral of her beloved teacher, Temple asks her mother, "Do you know where they go?". To which her mother says, "No". At that point, Temple decides to leave the funeral because in her concrete, literal thinking way, she declared, "I said goodbye when I saw him. He's not there. I've got him in my mind.". What a perfectly AWEsome, yet literal way to process death.

Many believe that people with autism do not feel empathy or sympathy. I have watched my son cry for people and pets who have died, and I have watched him shed tears and try and protect those who are left to live on, heartbroken in their grief. Ryan feels sympathy, how he displays his sympathy may not be what you expect though. 


Ryan's literal mind struggles with terms such as, "passed away" or "lost" and overhearing such words, in what appears a cold, rude manner, Ryan may say, "They are not lost, they are dead.". "Passed away" is ambiguous and "lost" is not "dead". These words surrounding death, make no sense to him. 

Although many tears are shed at a funeral or memorial service for someone who has died, there often are smiles and laughter over good times and memories being recalled by loved ones. That laughter may confuse Ryan since after all, death is gone, death is final, death is sad, so why are people laughing? The emotions that go along with grief can be confusing for someone who struggles to process the emotions of others and who struggles to read the various facial expressions and body language that are part of such an emotional time.

The two funerals Ryan has attended, I worried. I worried in Ryan's confusion to understand death, that he may say something inappropriate, like "Where do they go?". I worried that Ryan may behave in a way others would deem rude or disrespectful, like scripting a television show or video game in a silly voice rather than offering heartfelt condolences in his Ryan voice. There is a lot of hugging and touching at such a sad time, and Ryan does not care to be hugged by strangers. All of these things could lead others to believe that Ryan was demonstrating less than funeral appropriate behavior.

You see that confusion, that type of behavior, those comments may be acceptable if demonstrated by a young child, but, since you can't "see" autism, when such "inappropriate" or "wrong" behavior is displayed by someone who is "old enough to know better", it's hard as parent not to show others judging Ryan how "wrong" they are, even at a funeral. This is why I worried. Fortunately, at both funerals, Ryan proved me wrong and did his best to be patient, kind and sympathetic.

For many people when a loved one dies, religious and spiritual beliefs come into play, and these belief are equally as vague and abstract as the concept of death and dying. To try and explain a soul or heaven, something such a visual, literal person can't "see", is hard for them to understand. "If Jesus came back to life, why can't so and so?". "If God loved so and so, then why did He let them die?". Questions difficult to answer, answers difficult to understand.

I may not be able to answer all the questions that are circling in Ryan's brain when it comes to death, and I may not ever be able to answer the big question, "Where do they go?" in a way Ryan can fully understand, so rather than focus on where they "went", I try and focus on where they "are". I try to explain to my visual boy, with his photographic memory, that where those we lost are, is in our mind. We can still see them through pictures our brain took when we think back to a happy memory we have. And recalling those pictures, helps us miss them a little bit less. As I explained this, I watched my son's face light up, recalling the pictures he has stored in his amazing brain, of our beloved neighbor who always greeted Ryan with a warm smile, regardless of how many times she was ignored in return. I watched the confusion and sadness slowly fade away, being replaced with understanding and joy....and a picture in his mind.

I am ill-equipped to answer, "Where do they go?", however, I am equipped to answer where they "are". I can remind Ryan of all the places our friend or family member had been, of all the places we went together and of the all the good times we shared. I can assure Ryan that no matter how much time passes, we can always "see" them in the pictures lovingly stored in our mind and "feel" them in the love we have in our heart. Isn't knowing where they "are" comforting to our grieving, sad heart? 

As with so many things in life, even when it comes to death, trying to help Ryan and his AWEsome brain understand something so troublesome, I wind up being the one learning from him. 

Well, it's the week all of us middle age'ish (vomit) housewives have been waiting for since we turned the first page of Fifty Shades of Grey and wished our best friend got the flu and we were the one who stumbled into Christian Grey's multi-billion dollar empire. In just 24 hours, all of our Christian Grey necktie and Red Room of Pain fantasies (or horrors, depending on your perspective) come to life on the big screen in Fifty Shades of Grey, the movie. And while we sit with our girlfriends giggling and critiquing how "Jamie Dornan is soooo... not Christian Grey" or how we could have totally been a much better Anastasia than Dakota Johnson, our husbands will be anxiously awaiting our return from the theater. And depending on just how far the Motion Pictures Associations of America decides to go with this R Rating and how far your imagination can take you, you might be just as excited to get home to your man too, even if he doesn't own a helicopter....or a flogger (I don't want to know).

Don't worry folks, this blog post does not need an R Rating, nor does it come with a blindfold, riding crop or handcuffs (Sorry, I hope you are still reading) because although I loved reading (and I'm sure I will love watching) all about "fifty shades of f***ed up" Christian Grey and his various shades of painful pleasure, this is a PG Rated post, with zero shades of gray.  

Christian Grey may have been able to use his billions, his charm, and his charisma to blend black and white and come up with fifty shades of gray in order to blur the lines between right and wrong, good and bad, acceptable and unacceptable, pain and pleasure, but, I can AWEnestly say that Ryan, and many people living with autism, would find Christian's world of gray more disturbing than his Red Room of Pain. 

Gray is confusing. Gray is neither black or white. There are various shades of gray and these shades of gray change depending on various factors, such as lighting, point of view, and interpretation.

Ryan will never see the fifty shades of gray like Christian Grey does (Thank God. Although, allowing his parents to ride on his private yacht would have been nice.) because Ryan prefers a world that is black and white. Black and white is easier to understand. It's either black or it's white. Right or wrong. Lie or truth. Win or lose. Gray is left to interpretation. Gray is vague. Gray is not black OR white, it is black AND white. 

For Ryan, gray is baffling. Not being clear on what is right or wrong in a situation can make Ryan very anxious. Considering multiple perspectives, various options, and different points of views from situation to situation is extremely confusing. Ryan's black and white thinking makes him feel isolated in social situations where the world is filled with shades of gray. 

Many social rules vary from one situation to the next. Since autism already makes reading facial cues, interpreting body language, and understanding the idiosyncrasies of social language confusing, Ryan holds on to black and white thinking, because black and white makes perfect sense. Unfortunately, the reality is that most social situations are not black and white. Most social situations have various shades of gray, which makes interpreting those situations and responding in a socially appropriate way difficult. This struggle to understand the various shades of gray is why, most days, Ryan prefers to be alone in his black and white world. There is less room for error, less room for gray.

It's easy to understand why black and white makes more sense than gray. 

Truth or lie. "What do you mean it's okay to lie "sometimes"? Isn't a lie, a lie whether it's white, black or purple?"

Following the rules or not following the rules. "How can you bend the rules? Rules don't bend. It's a rule and rules tell you how to play the game, rules keep order, rules keep everyone in check, rules help determine what to do next, so you can't break rules or bend them." 

Helping or cheating. "Having another roll of the dice or taking another turn, is not helping someone learn how to play the game, it's cheating." (Chances are good if you "cheat" while playing Monopoly with Ryan you don't have to worry about being "flogged", you may, however, wind up with a Monopoly playing pieced embedded in your forehead.) 


Winning or losing. "There is no tie. Someone must win or lose. There is always a winner!" And God help you if you are the winner and Ryan is the loser. Just a heads up.

Right or wrong. Black or white. Zero shades of gray.

As black and white as the world may seem to those living with autism, unfortunately, I believe that more often it is the neurotypical folks who could benefit from a few shades of gray. Many times, those of us without autism see the world of autism in black and white. We see us and them. We see our way and their way. We see our world and their world. We see right and wrong. We see weird, not different. Very rarely, do we neurotypicals see the blurring of the black and white. We struggle to see the various shades of gray that might just help us understand that many people living with autism believe that they are in fact typical, and we are the ones who are not. 

Think about it, logically, black and white thinking makes sense. After all, a lie is a lie regardless of what color it is. Rules are made to be followed, not bent or broken. You either cheat or you don't. You are a winner or a loser, not a "tie-er". You are right or you are wrong. Black or white. Makes perfect sense.

I recognize that there are more than fifty shades of gray in the so called neurotypical world and in the world of autism, and trying to see everything in gray, black or white would really diminish the colors of all that we see in both worlds. Perhaps, in true Christian Grey form, we should throw on a blindfold and remove our sense of sight and try to feel what it might be like living in a black and white world. Perhaps removing our sight, will enhance our ability to feel and maybe then we neurotypicals will "see" that "we" may have it wrong and "they" may have it right. 

Perhaps somewhere between black and white is a shade of gray that helps us all understand that our differences make us who we are and that those differences are not right or wrong, good or bad, normal or abnormal, they are just various shades of gray. And even though it's hard for Ryan to see the gray, he is working on it. I just hope that the rest of the world works on it too. 

Ryan may not be able to see fifty, forty, or even ten shades of gray, but, if he can see one, if he can try and see your perspective, your point of view, your "gray", than hopefully you can see his too. Hopefully, you can see and accept this shade of gray without having to be flogged, tied up or whipped. Unless of course you are into that sort of thing (I don't want to know).

It's February, that time of year when everyone has had a month to work on their New Year's Resolution to get back into shape. Social media becomes inundated with "before" and "after" pics, showing the changes folks have gone through with some diet and exercise. The "before", when they were eating 6 Oreos before bedtime, and the "after" when they started eating six carrots instead. Doesn't matter if you eat an Oreo before you dunk it in milk or after, Oreos always taste better than carrots.

So, as you sit cursing me and my skinny genes, while I blog in my skinny jeans, although I may not have ever needed a before and after pic when it came to weight loss, I sure would have loved a before I heard The A Word and after I heard The A Word photo. I think the before I walked into that psychologist's office pic would have looked a little like a scared cat walking a tight rope over a giant waterfall and well, the after I walked out the psychologist's door, I kind of remember and it wasn't pretty...at all. The after photo would have been a possible friendship ending photo had Denial or any other friend for that matter tagged me in it. 

Before I heard The A Word, I had my suspicions, but, after my suspicions were confirmed, after a label was given, I wish I would have been able to capture the changes that went on in my heart between those two moments. After the sobbing stopped, after the tears had all dried up, the change in me was so subtle, that from the outside, even the highest tech cameras could not have detected it. However, the before and after that occurred deep in my heart, the change that was only visible to me, was huge. Even though the psychologist told me that my son was the same little boy he was before I walked through her door, after I heard the word autism, I didn't see that same boy for a long time. Now looking back, I wish someone would have told me before I knew, that what I failed to see after the fact, would be my biggest regret.

Back before autism, I had dreamed that anything Ryan wanted to achieve, he could. After autism, I worried about autism getting in the way of that dream. Before autism, I pictured Ryan growing up surrounded by friends and playing numerous sports just like his big brother, Kyle. After autism, I knew that both friends and sports would be challenging for Ryan. Before autism, I dreamed that one day Ryan would be a husband and a father. After autism, I worried that the dream of Ryan's future family may only be mine. Before autism, I thought I knew how to parent my son. After autism, I began doubting all my instincts. The one thing that did not change, the one thing that remained consistent and that was visible in both the before and after photo, was how very much I loved this little boy and how much he needed me to accept him just as he was, both before and after autism.

The funny thing with before and after photos, is that rarely do you see what goes on in between the photos. All the hard work, all the sacrifices, all the changes, go undocumented, because people only want to see the end result. When trying to get into bikini season shape, people don't want to see you sweating it out at Zumba or watch the horrific faces you make when you try to convince yourself that kale and radish protein shakes tastes great (maybe if you add an Oreo, or two, they would). There are no photos of when you stumble and eat three fist fulls of M&M's instead of three fist fulls of almonds. There are not FB Status Updates when you decide to watch 3 hours of Mad Men on your couch while sipping a glass (or two) of wine, instead of chugging a bottle of water while jogging on the treadmill at the gym. Nope, there are no in between photos, just the before and after images. The hardest part, remains unseen.

Just like before and after autism, I did not take photos of Ryan working so hard and believe me, he has worked so hard. I did not document the meltdowns at the hair salon, the doctor, or the dentist and the progress he has made entering all three of those destinations today. 

I did not take photos of Ryan greeting someone and making eye contact with them thanks to the countless hours of therapy that helped Ryan understand the importance of looking someone in the eye even though today it still feels terribly uncomfortable for him. 

I did not snap a pic when Ryan was finally able to drink out of a different cup, use a different plate, or sit at a different seat without a 10 minute meltdown. I did not document the hours of speech therapy, occupational therapy, and social skills groups, all places where Ryan worked so hard before, in order to get to the after. There were monumental steps forward and often, just as many steps back, but, rarely are those moments documented.

Today, haircuts are no longer an issue, but, touching paper is. The sounds of a car horn no longer bothers Ryan, but, the smoke alarm battery dying freaks him out. Dress shirts and ties can be worn, but, not for long. Ryan may try new food, but, only if it's something sweet. So much has gone on in between, before and after, that occasionally the images have blurred. Today, without a doubt, what I see Ryan struggle with the most, what he spends the most time working on, is understanding and accepting The A Word and how that makes him feel. Yeah, that old song and dance, I am familiar with.

As for me, had I documented my before and after autism pic via Instagram, Facebook or Snapchat, my photo, would not have changed much (besides looking older, rejoice and thank my skinny genes) because the changes that I have undergone have come from the inside. Sure, I still worry, I still "What if?", I still wonder, but, mostly, I have come to accept and understand, that what matters most is not how I was before or after The A Word, what matters most, is now.

Before autism, I spent so much time researching the internet, observing Ryan's every move and wringing my hands raw with worry. After autism, the worry and the wringing intensified with every horrible "What if?" case scenario. Before, I wasted so much precious time, time that once stood right in front of me, that after I let it slip away, I recognized too late, that it was gone. 

That wonderful, intelligent, they didn't give her a PhD for nothing, psychologist really was right. My beautiful boy was right there in front of me before I stepped foot into her office door and heard The A Word, and that very same boy was waiting for me after I walked out her door. He had not changed. I don't have the photo to prove it, but, trust me, I know. I hate that it took me years before I realized what I was missing, but, I am so grateful that after I figured it out, I haven't missed a moment of now.

So, while trolling on Facebook, Instagram and Snapchat, keep in mind that the folks working so hard for their summer bodies, posting their before and after pics, may not show you all the hard work that goes on in between those photos, but, change does not happen easily. Perhaps psychologists, psychiatrists, doctors, etc who must look a parent in the eye and utter, the words, "Your child has autism" should take a before and after autism CT scan of the parent's heart. A before and after photo, if you will. 

If Ryan's psychologist had offered a heart CT scan to check on the before and after autism status of my heart, being the hypochondriac that I am, I would have totally gone for it. The image may have shown that before autism, my heart seemed perfectly intact (albeit a bit strained), but, overall, my heart would not have so much as skipped a beat, However, after autism, the image would have shown a tiny tear, or perhaps a discolored bruise of sorts, that made my heart ache for a bit. So consumed with the changes in my before and after autism heart photos, I still would not have heard a word the psychologist said about Ryan being "the same little boy he was before". In time though, when I was finally ready, I would be able to see that the before and after images of my heart had become blurred, the changes would no longer be discernible.  Without even being made aware, time, acceptance and hard work, made my heart heal after autism, and now, this mother's heart beats stronger than ever before.