Being the mom of a severely autistic teenager, I have encountered lots of acronyms. ASD, OCD, ADHD...there seems to be an abbreviated sequence of initials for every type of "disorder" on the planet. The "need for speed" texting etiquette also calls for universally accepted abbreviations...OMG, LOL, ROTFL, IDK, YOLO...it seems everywhere I look, there is some kind of shortened, commonly understood catch phrase. So, when I volunteered to help edit my nephew's English report, I was intrigued enough to do a little research on the subject matter he chose: The Impact of Social Media on Society. My nephew, (and most awesome Godchild on the planet), wrote about a new psychological phenomenon which is quickly becoming a contributing factor in many cases of depression, especially among teens and those in their early twenties. This new disorder is known as FOMO. Fear Of Missing Out.
Most of us are rapidly becoming those "always have your phone in your hand" kinds of people. It starts as a means to keep us entertained, and quickly but very naturally, becomes an extension of who we are. I was a late Facebook participant. I swore, if I hadn't kept in touch with you over the last 25 years, I had no need to be in touch now. (I was more wrong than I could have imagined, but that is a post for another day.) Having rectified that situation and having modified my thinking on the matter DRASTICALLY, I realize just how important these social connections have become. I started out connecting with people I already knew. I added friends I had lost track of, and some who were actively searching for me. I then started following some pages related to autism, because as any autism momma will tell you, no matter how much time you spend being with or talking to folks outside the "autism circle", NOBODY ELSE "GETS IT" quite like another autism momma. I then started to follow some "mommy" pages, and added some pages that I followed just for laughs, (because GOD KNOWS we all need a few laughs!!). I found myself checking my newsfeed more and more, because I enjoyed connecting with the "outside world", and I didn't want to miss anything. FOMO. It wasn't a debilitating need. I could spend the day cleaning, running errands, carting my kids to wherever they had to be. I have not had a need for medication to control my need to keep up with every post in my universe. Yet. But my FOMO disorder has led me to another acronym, that I hope will spread from here, and maybe bring a little comfort to others, who, like myself, are finding the majority of their social interaction taking place on a screen: JOFA...the Joy Of Feeling Accepted.
Through some of the pages I follow, I have become friends with a select few women with whom I have simply clicked. You know, the kind of bond that is unmistakeable and so completely natural, you wonder how it is possible you ever survived without this connection before. There are quite a few of these new (and in my heart, always will be) friends. They are from drastically different corners of the universe, live different lives, have such amazingly different stories, but the bond we all seem to share is the need to accept and support each other. There is no judgement. There is no ego. There is nothing fake. There are pure hearts, full of open acceptance of all the successes, the failures, the flaws, and everything in between. We have never met, and maybe we never will, (although, when I win lotto, the private jet will pick them all up for the commune type vacation, complete with special needs nannies, we all so richly deserve), but they are my friends as deeply as if we had grown up together since preschool. They have taken away my FOMO, and replaced it with my JOFA.
Let's face it...we all need to feel validated. We all want to know that somewhere, someone agrees with our thinking, approves of our choices, and can somehow relate to whatever it is we may be experiencing at a given time. We all need to know that we are not alone. We all need to know that, no matter how many hateful cretins we may have to encounter, (or be married to), SOMEBODY thinks whatever we did, or thought or felt...it was okay, and maybe they even did or thought or felt it, too. When I am sad, I need to know it was okay to feel sad, and someone will be there to watch Steel Magnolias with me and eat ice cream...even if only in cyberspace. I need to know, when my son does something monumental, like finally asking for a tissue instead of wiping his nose on his pillow, I have my PEEPS to shake some pom poms with me. So while social media may be keeping me from cleaning out the office, (AKA, "that room where we throw everything when people are coming over"), my cyberfriends are providing me with something that is so much more mentally and emotionally valuable than a perfectly organized extra room...they give me acceptance...a feeling of belonging that empowers me in a way I never imagined possible.
So, while the Facebook "powers that be", in their esteemed wisdom, (or lack thereof), are purposefully, (with the greedy intention of extorting money from us), blocking some of us from reaching each other, there are simply some connections that are meant to be, and will transcend time, distance and Facebook blocking. I imagine a "thank you, Facebook" is in order for initially providing the media. And a deep and heartfelt "thank you", to my homies...my peeps...my friends...who validate me every day, and remind me on the few occasions that I forget how valuable I truly am, that they will always have my back, and that every day, they will bring me my JOFA, and I can enjoy it with my java:)
Thursday, January 30, 2014
Sunday, March 3, 2013
Hello, Friend...Friend?...Friend?...Beuller?
I recently read that families with children with autism have a hard time maintaining friendships. It is so painfully true, but I didn't completely realize it until I read that.
I'm pretty sure my marriage has come to an end, but neither of us wants to say, "Okay, let's sell the house and both walk away with nothing". It isn't for lack of love, (on my part anyway), but I'm pretty sure it is in great part, for lack of friends. When the only real social connection you have is your spouse, there is an awful lot of pressure on each party to hold up the other.
We do have people in our lives who are our "friends", and we both have family, but when your child has autism, you find yourself in a constant mental battle when faced with "visiting" possibilities. So many family members say, "Don't worry about the stuff he breaks. It's only stuff." But what they don't seem to realize is, from my perspective, it is THEIR stuff! I don't want to come to your house and worry that my child is going to break your expensive china, or the collectibles you accumulated over the years. I will never forget the Christmas Eve I spent at my sister-in-law's, when we walked in the front door, and my son walked right over to her Lenox nativity set, and picked up the cow that was laying in the manger. He picked it up quickly, knocking its head into the top of the stable. No more head. We weren't in the house for 30 seconds! She was very cool about it, but I was not. I felt awful! It's just a thing, I know. But not MY thing. First I was angry, because how could his Godmother not know that her autistic nephew, who LOVES animals, would be interested in her expensive china BARN FULL OF ANIMALS! Then, I just wanted to go home, because my in-laws are a very "thing"oriented group. God only knows what else he would need to touch. Then I realized it was Christmas, and my daughter, who is NOT autistic, was enjoying her cousins, so what could I do? I stayed, and followed him from room to room, making sure he touched nothing. He cried when we took away the Lenox "farm", and every time I steered him away from the white satin sofa, and the crystal ornaments on the tree...needless to say, going home was the best part of Christmas for me that year. But that was just a rude awakening for me.
There have been so many other occasions when we had to completely disrupt the lives of our friends because our son is severely autistic, and there is just no way to explain to him that some "animals" are made of thousand dollar crystal and he shouldn't drop it. On our way home from Florida one year, we stopped in to visit my husband's great uncle. Our son had fallen asleep in the car on the way, and as we walked into the house, we realized there were curios filled with porcelain animal figurines ALL THROUGH THE HOUSE. I literally stopped breathing. I told our uncle that there was no way I could guarantee the safety of his collection. My boy just doesn't understand what "expensive" means. He just sees the sheep and the chicken. So even though he assured me I shouldn't worry, he saw the anxiety in my face, and here went this seventy something, wonderful man, covering all the curios with bedsheets so I would feel more at ease. While visiting another close couple, the boy noticed a violin refrigerator magnet. It played music if you pushed a button. He was completely enthralled with it, so we let him hold it. As we were getting ready to leave, we realized we couldn't find the tiny violin. Well, it's just a fridge magnet, so no big deal, right? Except that it was the last little Christmas "chachka" my friend's recently deceased mother had bought her. Searched for a half hour, but no luck. Don't ask me how he smuggled it out, but I found it on the floor in my car the next day. (Thankfully, I returned it to her, and she now takes it out for my boy whenever we see her.) Another occasion, at my brother's house, I spent the first hour of our visit watching my boy jump off the side of the staircase that has no railing, and the rest of the visit redirecting my boy away from my brother's collection of porcelain Clydesdale horses. (What is it about my poor son's Godparents, that they feel the need to taunt him with expensive, very breakable figures of his beloved animals?)
So many other visiting experiences have ended with my sweet boy dumping every box of tiny Legos, taking a stuffed animal off my sister-in-law's bed, (one she had from her own childhood), and going into my aunt's china cabinet and taking out her very expensive Christmas horse and buggy figurines. With all of these examples, you can summize that we are not quitters. My boy is 12, and we have made many attempts at comfortably visiting with friends and family, but over the last few years, we've run out of steam. It's just so much easier to stay home. Whenever we have a holiday at our house, my dad wants to cater the event because he thinks all the cooking is too much work for me. But I would rather ALWAYS host a gathering. I'd rather do all the cleaning before, the shopping, prepping, cooking and cleaning after, just so my boy can be in the comfort of his own house. I don't like catered or take out food. I would rather cook for EVERY holiday, than to make my boy live through the anxiety of having to wear real pants and have to "not touch anything"! It doesn't matter how many times you tell me not to worry. I'm going to worry. So we just don't leave the house. And there is where the pressure becomes a problem.
I am a stay at home mom, so even though there are other stay at home moms in my area, I don't see them often, because getting together usually involves spending money. Since I don't bring any in, I try to limit what I spend. I didn't always worry, but way back when, my husband's construction business was booming. The economy crashed, and I learned to stay home. So now, I don't see my sister when we get our nails done, I don't go out for breakfast with the other moms from the boy's OT center, I don't plan vacations. I stay home. Except for my dog, I am home alone all day. My boy comes home first, but he's not much of a talker. Then my girl comes home and starts begging for play dates. She will soon be 10, and she is finished hanging with her fossil mom. So I wait for my husband. On the nights he gets home early, he is either helping the girl with her homework, or running her to taekwondo while I get dinner ready. After dinner, he goes to bed. When he gets home late, he just goes to bed. To be fair, he gets up at 4:30 AM, so, I get it...he's tired. But everyone we know is busy with their own life. We moved about an hour away from family and some friends, but we didn't see them any more when we were around the corner. People just get busy. But they don't realize how hard it is to come out and get connected when autism is an issue. No amount of explaining can make someone understand if they don't live it. I'm not blaming my son for my lack of friends, but frankly, autism has disrupted every other plan we had for our life, and our social life is no different. I don't invite the parents of my daughter's friends because I'm afraid of the awkward moment when my son comes down the stairs in his boxers. We don't go out unless we have to because getting a babysitter is usually a hassle. My mom is a half hour away, but my dad is a creature of habit, and asking him to get off his recliner is usually a project. So, we don't go anywhere, and we stay home alone. And I am just always alone.
So, now that I have whined about the misery of my marriage and the evil, friend sucking autism, my whole point in telling this drawn out tale: COME OVER! COME BABYSIT! If you know someone whose child is autistic, or disabled in some way, go visit them. Autism isn't contagious, and you can't catch it! If you are family or very close friends, offer to babysit. If there is an occasion when you have cause to give a gift to a parent of an autistic child, let it be a restaurant gift card with a "free babysitting" coupon attached. If you haven't heard from them in a while, call and check in. We are so consumed by how different our kids can be, we often don't pick up the phone to call, because we are certain any call we make will be interrupted by some autistic tragedy. We are engaged in a daily battle to get the world to accept our kids, and we all too often forget to just be people. That can really take a toll on a person, and on a marriage. I am pretty sure I have lost that battle, but if you know someone you can help, just do it. It has been scientifically proven that being social can boost your immunity and help prevent some diseases. So, just be a friend...you may save a life, (or a marriage).
I'm pretty sure my marriage has come to an end, but neither of us wants to say, "Okay, let's sell the house and both walk away with nothing". It isn't for lack of love, (on my part anyway), but I'm pretty sure it is in great part, for lack of friends. When the only real social connection you have is your spouse, there is an awful lot of pressure on each party to hold up the other.
We do have people in our lives who are our "friends", and we both have family, but when your child has autism, you find yourself in a constant mental battle when faced with "visiting" possibilities. So many family members say, "Don't worry about the stuff he breaks. It's only stuff." But what they don't seem to realize is, from my perspective, it is THEIR stuff! I don't want to come to your house and worry that my child is going to break your expensive china, or the collectibles you accumulated over the years. I will never forget the Christmas Eve I spent at my sister-in-law's, when we walked in the front door, and my son walked right over to her Lenox nativity set, and picked up the cow that was laying in the manger. He picked it up quickly, knocking its head into the top of the stable. No more head. We weren't in the house for 30 seconds! She was very cool about it, but I was not. I felt awful! It's just a thing, I know. But not MY thing. First I was angry, because how could his Godmother not know that her autistic nephew, who LOVES animals, would be interested in her expensive china BARN FULL OF ANIMALS! Then, I just wanted to go home, because my in-laws are a very "thing"oriented group. God only knows what else he would need to touch. Then I realized it was Christmas, and my daughter, who is NOT autistic, was enjoying her cousins, so what could I do? I stayed, and followed him from room to room, making sure he touched nothing. He cried when we took away the Lenox "farm", and every time I steered him away from the white satin sofa, and the crystal ornaments on the tree...needless to say, going home was the best part of Christmas for me that year. But that was just a rude awakening for me.
There have been so many other occasions when we had to completely disrupt the lives of our friends because our son is severely autistic, and there is just no way to explain to him that some "animals" are made of thousand dollar crystal and he shouldn't drop it. On our way home from Florida one year, we stopped in to visit my husband's great uncle. Our son had fallen asleep in the car on the way, and as we walked into the house, we realized there were curios filled with porcelain animal figurines ALL THROUGH THE HOUSE. I literally stopped breathing. I told our uncle that there was no way I could guarantee the safety of his collection. My boy just doesn't understand what "expensive" means. He just sees the sheep and the chicken. So even though he assured me I shouldn't worry, he saw the anxiety in my face, and here went this seventy something, wonderful man, covering all the curios with bedsheets so I would feel more at ease. While visiting another close couple, the boy noticed a violin refrigerator magnet. It played music if you pushed a button. He was completely enthralled with it, so we let him hold it. As we were getting ready to leave, we realized we couldn't find the tiny violin. Well, it's just a fridge magnet, so no big deal, right? Except that it was the last little Christmas "chachka" my friend's recently deceased mother had bought her. Searched for a half hour, but no luck. Don't ask me how he smuggled it out, but I found it on the floor in my car the next day. (Thankfully, I returned it to her, and she now takes it out for my boy whenever we see her.) Another occasion, at my brother's house, I spent the first hour of our visit watching my boy jump off the side of the staircase that has no railing, and the rest of the visit redirecting my boy away from my brother's collection of porcelain Clydesdale horses. (What is it about my poor son's Godparents, that they feel the need to taunt him with expensive, very breakable figures of his beloved animals?)
So many other visiting experiences have ended with my sweet boy dumping every box of tiny Legos, taking a stuffed animal off my sister-in-law's bed, (one she had from her own childhood), and going into my aunt's china cabinet and taking out her very expensive Christmas horse and buggy figurines. With all of these examples, you can summize that we are not quitters. My boy is 12, and we have made many attempts at comfortably visiting with friends and family, but over the last few years, we've run out of steam. It's just so much easier to stay home. Whenever we have a holiday at our house, my dad wants to cater the event because he thinks all the cooking is too much work for me. But I would rather ALWAYS host a gathering. I'd rather do all the cleaning before, the shopping, prepping, cooking and cleaning after, just so my boy can be in the comfort of his own house. I don't like catered or take out food. I would rather cook for EVERY holiday, than to make my boy live through the anxiety of having to wear real pants and have to "not touch anything"! It doesn't matter how many times you tell me not to worry. I'm going to worry. So we just don't leave the house. And there is where the pressure becomes a problem.
I am a stay at home mom, so even though there are other stay at home moms in my area, I don't see them often, because getting together usually involves spending money. Since I don't bring any in, I try to limit what I spend. I didn't always worry, but way back when, my husband's construction business was booming. The economy crashed, and I learned to stay home. So now, I don't see my sister when we get our nails done, I don't go out for breakfast with the other moms from the boy's OT center, I don't plan vacations. I stay home. Except for my dog, I am home alone all day. My boy comes home first, but he's not much of a talker. Then my girl comes home and starts begging for play dates. She will soon be 10, and she is finished hanging with her fossil mom. So I wait for my husband. On the nights he gets home early, he is either helping the girl with her homework, or running her to taekwondo while I get dinner ready. After dinner, he goes to bed. When he gets home late, he just goes to bed. To be fair, he gets up at 4:30 AM, so, I get it...he's tired. But everyone we know is busy with their own life. We moved about an hour away from family and some friends, but we didn't see them any more when we were around the corner. People just get busy. But they don't realize how hard it is to come out and get connected when autism is an issue. No amount of explaining can make someone understand if they don't live it. I'm not blaming my son for my lack of friends, but frankly, autism has disrupted every other plan we had for our life, and our social life is no different. I don't invite the parents of my daughter's friends because I'm afraid of the awkward moment when my son comes down the stairs in his boxers. We don't go out unless we have to because getting a babysitter is usually a hassle. My mom is a half hour away, but my dad is a creature of habit, and asking him to get off his recliner is usually a project. So, we don't go anywhere, and we stay home alone. And I am just always alone.
So, now that I have whined about the misery of my marriage and the evil, friend sucking autism, my whole point in telling this drawn out tale: COME OVER! COME BABYSIT! If you know someone whose child is autistic, or disabled in some way, go visit them. Autism isn't contagious, and you can't catch it! If you are family or very close friends, offer to babysit. If there is an occasion when you have cause to give a gift to a parent of an autistic child, let it be a restaurant gift card with a "free babysitting" coupon attached. If you haven't heard from them in a while, call and check in. We are so consumed by how different our kids can be, we often don't pick up the phone to call, because we are certain any call we make will be interrupted by some autistic tragedy. We are engaged in a daily battle to get the world to accept our kids, and we all too often forget to just be people. That can really take a toll on a person, and on a marriage. I am pretty sure I have lost that battle, but if you know someone you can help, just do it. It has been scientifically proven that being social can boost your immunity and help prevent some diseases. So, just be a friend...you may save a life, (or a marriage).
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