We Aren’t After Your Pity

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I’ve been mulling over some things, since I wrote my last blog “https://muthalovinautism.wordpress.com/2013/09/05/desperate-to-be-heard/” . The first thing was my reaction. Was it the right one? The second was readers’ reactions. Did they go too far with their replies or did they just take me wrong? I still hold to every thought I wrote that night. In hindsight, I might would’ve tried to not make it sound so accusatory. I don’t “blame” anyone for the life I live as a woman with Aspergers and a mother to children with autism. I LIKE my life. I LOVE who we are. I was, however, very upset….not just for a particular family, but for my family and every family that is not getting the help we are told would be there. The week before I wrote that post, I got the rejection letter in the mail from the government. The one that gave me a list of guidelines that my children met to receive services, and they still denied us. Months and months of jumping through hoops…only to have to appeal and do it all over again….to have invaluable services delayed even longer. I know the despair I felt. I can only imagine the despair of others who have been living this life longer than I have, with children who’s “symptoms” are more severe than my own.

 

There was a comment made to me. One I can’t shake. “Your life as a parent to autistic children isn’t as hard as you assert it is. Stop having a pity party and have a “change it” party.” What an easy thing for someone not living our life to say. I know TONS of autism families from online and several in person. I’ve never heard one throw a pity party. Never. I’ve heard them cry and fall apart, when it was justified. I’ve seen them bring their problem to the table we all sit at and ask for help. I’ve seen strangers hold each other up and offer the words and love that was needed when family and friends turned a blind eye. But I’ve never seen them throw an honest-to-God pity party. I am honored to know some of the strongest people on the face of this earth. People that don’t just tackle their own challenges, but care enough to help others tackle theirs. I’ve seen threads 250 comments long of strangers helping one another find solutions to eating disorders, mood disorders, meltdowns, hygiene problems, learning issues, self mutilation…the list is endless. It is one great big CHANGE IT PARTY all day long.  

While I might, occasionally, witness someone in our community stating “I’ve got it so much worse than you.”, that’s the exception…NOT the rule. In the blog I last wrote, I wasn’t trying to tell the world how much worse off than them we are. YOU, dear reader, turned it into that. You chose to see whining, instead of a need. We live a life in which many of our children don’t EVER speak to us….to anyone. We watch them bang their heads against walls. We watch them stay awake for days, sometimes weeks, at a time. We watch them stare into space and not hear us when we try everything to bring them out of the autism induced trance they are in. We see them step off the bus with hand prints on their faces and shoe prints on their chests, because some kid thinks they are weird and not worth knowing. We beg them to eat just one bite of food, because it’s been days without them getting nutrition. We tell sixteen year olds how to wash themselves for the 9,000th time, because we know if we don’t tell them, they’ll stand in the shower and never bathe. We see them do amazing and intelligent things at home, yet get looked over at school by SOME educators because they aren’t “worth the time”. 

If you, most offended reader, deal with those things and so much more, forgive me. I didn’t know it was so common. I was under the impression that we need to educate about what’s really happening in our homes, because people look at us like we’re crazy in public. My bad. I thought that as parents of special needs kids, we were supposed to help the world understand our kids, because someday, we won’t be around to help them anymore. I didn’t know that you worried about whether your child would ever be able to leave home or not. I didn’t know you were scared that they would never be able to work, have a spouse, drive a car, or simply graduate. I just had no idea those fears were what kept you awake too. 

You think we want your PITY? If that’s how you see us, then you’re CHOOSING to see it like that. We want your understanding. We just want you to listen. There are 1 in 50 children and adults living this life. We don’t have the luxury of just being around people like us. WE have to live with YOU…and your children. All we want is for you to see us for what we really are and have compassion when things are hard.

Pity? Hardly. 

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Desperate To Be Heard

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My heart breaks tonight. One of our own, a blogger, a warrior autism advocate, a GOOD mother, attempted to take the life of her child with autism and her own. You’ll hear the details. They’ll be out there for the reading. You won’t have to hunt for long. Whenever something like this happens, you hear about it for days, weeks, months. You know what you don’t hear, unless you’re listening for it? The cries for help that were screamed BEFORE this happened.

I see it everyday, all day on my community Facebook page. I see it in my fellow bloggers. I see it in the other autism mother as we lock eyes in the grocery store. We are DYING for you to hear our story. We are begging you to care. We don’t want to burden you….but we are DESPERATE for love and a shoulder to cry on. We don’t care if you’re living our life or not. We need to not feel so alone. We need for people who still HAVE strength left to carry the torch for us, while we regroup and decompress from the battlefield that is our life.

Our lives, our children’s lives, depend on somebody willing to step out of their world for a while and be a friend. A REAL friend. We need for people to really get how hard it is to FIGHT for our children to be properly educated, medicated, and cared for. WE need for people to understand what it’s like to swallow our pride and turn for assistance from the almighty powers in charge who SAID they would be there just for “people like us”, only to have to jump through months and months of hoops to be turned down.

We need you to get it, because there are days when we can’t fight for ourselves anymore, but we still have these children that depend on us. We STILL want what is best for them, even if we are too weak to seek it out. We need someone to feed us when we just need rest. We need someone to take our kids for an hour or two, so that we CAN get on the phone and discuss why our kids actually need those services…because, apparently, a melting down, non verbal child in their office just doesn’t prove enough. We need teachers that will stop getting their feelings hurt, if we have a little bit of a chip on our shoulder and understand that it’s come from years of being pushed aside.

A daughter and mother…lie in their hospitals beds tonight after being told, “We can’t help you.” by a teacher that got her tail feathers ruffled over a mother doing what she’s always had to do….FIGHT for her child to be taken care of.

We aren’t asking you to lay down the red carpet and treat us like royalty because we were born into a club of people who deserve to be treated better. We’re asking you to hear that we are FALLING APART some days and we NEED you. We just….need you.

Our lives are made up of our children screaming at us and throwing punches at us one moment to wiping our tear stained cheeks the next. There is never the same day twice. There is never any predicting. There is only preparing for anything and everything and battling the world, while we’re at it.

How hard is it REALLY to listen? To care? When will OUR cause be worthy enough of a Tshirt on your back or special speaker at your church? When will some of that research money to figure out why we are the way we are go to helping the children and families that are living with it RIGHT NOW?

How many more mothers have to feel a mercy killing is their only option for peace for themselves and their children before somebody says, “I’ll listen. I’ll be there. I’ll help.”?

My heart and love go out to Issy and Kelli. We are so sorry we let you down. We are so sorry you felt that alone. So very, very sorry.

Creepy Cliche Comments…or the CCC.

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“Everything happens for a reason.”

 

“God won’t put more on you than you can handle.”

 

“I couldn’t do what you do. God knew what he was doing, when He made you a special needs mommy and not me.”

 

These are “compliments”….little words of encourage we get… When you’re at the beginning of your autism race, you hear these words and you smile, offer a clique answer back, or use that moment to spread autism awareness, while the other person kind of listens and cares for second….right up until they go eat dinner with their family…in public….like you can’t.

 

We KNOW they mean well. We WANT to be polite….but somewhere inside of us squirms words we can’t let out…”Really? So your child pops out with autism and you wouldn’t be able to deal?….I don’t think you mean that….does God see me flipping out right now, ALMOST not handling it anymore?…and what IS the reason?? Our numbers are at 1 in 50. Is there a reason? Or is it a side effect? An epidemic? Do you think about that?….Cause I do….. All the time.”

 

But….we don’t say any of that. We are pros at that “taken with a grain of salt” thing.

 

Did God hand pick us? Luck of the draw? Does everything happen for a reason? Will he finally pull the plug, when I say I can’t handle anymore?

I don’t “preach” much in my blogging world, but I am a Christian …it has everything to do with everything for me, so I’ll give you my spin on the truth behind these common phrases we hear. I don’t think EVERYTHING happens for a reason, except to glorify God…and don’t GET me started on all the crappy things that have been used to bring Him honor…I think some things happen because that’s LIFE. The Bible say, “All things work together for good for them that love the Lord.” I know for a FACT he can turn something messed up into something fantastic. That’s all I need to know.

 

Does He not put more on us than we can handle?…What He said was, “I will never leave you or forsake you…..with Me, all things are possible.” I think He’s saying, “This jazz is gonna be hard…look at me in my eyes…I’M NOT EVER LEAVING YOU.” (I’d like to think He says “jazz”,anyway.)

 

I believe the best thing to do is see the heart of all the words that are said to us….educate where and when we can…be polite…and, on occasion, when the need is there, be a super hero.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We Want You To Visit Us

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  We’re different from you. Many of us know it long before you do. We hear you speak about life, and in our silence, you think we are slow ….or uninterested…when what we are really doing is processing what you said and why you didn’t think of the things we did. Minutes, hours, days later, when you’ve moved on, we’re ready to share our story with you….but you’ve gotten past it. “Too slow.” If you’d take the time to hear us when we are able to speak, you could learn something. Instead, you’re too busy trying to figure out what’s “wrong” with us. Why can’t we just be like the others? You speak of inclusion and embracing, but that’s not what we see. We see you trying to make us fit into YOUR world, so that WE can have a better life. In reality, most of us don’t mind who we are, until you tell us we shouldn’t be this way. You send us to therapies and doctors for answers. These are all helpful and great, but we really just need you to listen to US.

  Your world is fast and busy and loud. It’s overwhelming. It takes so much to process everything going on around us when our brain is taking ALL the sights, sounds, smells and textures in at the same intensity. If you looked at us…..really looked at us and saw us with your heart wide open, you’d be amazed…..but you just won’t typically do that. You don’t have time to, when you’re focused on fixing us. Who will be more comfortable in the end? You? Us? We take the time to hear your words. They’re etched into our minds and into our souls. We go over them again and again trying to understand. We care about the way we say things or don’t say things, because we know you hurt too. Our faces and voices may never show it, but if you looked closely, you’d see it. We know how much we have to offer you….but we don’t always know how to give it. So much of what we say and do is considered unacceptable….and we know it.

  You want us to concentrate on a word problem, but we can’t stop painting a masterpiece with our mind. The whole thing must be complete. It’s too beautiful to stop now ….HOW do expect us to just turn off the switch? Wouldn’t it make more sense to allow the beautiful thing to unfold, while it’s there and at the peak of it’s greatness? You upset us by telling us to stop and cooperate…STOP? COOPERATE? We feel our anxiety building, as we know you’re asking us to do something we can’t. You persist, and we get more anxious. We need to step away from you….it’s causing a problem that isn’t going to end well. The meltdown comes and we can’t control it. Didn’t you see us rocking?! Didn’t you see us rubbing our arm and tapping our foot?! The warning signs to back off were there, and we were telling you in the only way we knew how; but you didn’t listen. We’re too far gone now. There’s no turning back. We break….Your answer is medicine, discipline, more therapy. We would’ve been able to do what you were asking, if you had just given us time to transition…. Some sort of warning.

We aren’t stupid. We aren’t unwilling to try. Every day…..all day….we try. We try to fit and blend in a foreign world to please you. When are you going to visit ours?

It’s beautiful here…..and just not the same without you.

Learning to be Unorganized

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When I was a young child, I didn’t fully realize that I would really rather play by myself than anyone else, because I was an only child. I didn’t have a lot of options, save some cousins and a few neighborhood friends. I found my happiness in many outdoor activities, art, and building my dolls houses. I never had a real doll house. “Awww…poor Erin.” No, no…..I didn’t WANT a plastic, boring doll house that all the other little girls had. My mother was an Avon lady. I got many things from Avon as a child, but my favorite things were the boxes the merchandise came in. SO sturdy. The perfect size. The perfect shape. I would stack them… one on top of the other…and side by side. I would spend hours constructing the homes…coloring their “doors and windows”….pasting magazine clippings as pictures on the walls….perfectly placing strips of cut fabric for rugs. I had little use for anything store bought (I am still this way). I was in a zone. Don’t talk to me….don’t touch me…don’t tell me lunch is ready. I didn’t want to do anything except build and design and see the thing through. “Oh you must have had so much fun playing with your Barbies in these masterpieces you poured your little heart into!” No….No I did not. I tried. It seemed the next logical step. I built the darn thing FOR my Barbies…..WHY didn’t I want to use them for their intended purposes? Because the construction and design, as I now understand, was what I wanted to do. That was what I loved. That was what held my attention.

I grew up and became an adult and didn’t really think much about those doll house building moments much more. What I did think about was the fact that every time I had a project I needed to work on, I had to go through the entire house and organize everything before I could focus. I have four children that I homeschool. I have an online vintage business that I run. I have books, merchandise, toys galore in this house that take days to organize. I KNOW that I have to focus on the task at hand. I HAVE to list my items online, if I plan on making money. I HAVE to sit down and sew if I’m going to be a part of this craft fair. I HAVE to paint this picture that my mom asked for 6 years ago. BUT….in my mind, none of this is even close to possible unless I have complete organization. So…I organize. DON’T talk to me. DON’T touch me. DON’T ask for lunch yet. DON’T make me listen to your stories. I am on a mission and I can’t be bothered. I HAVE to see this through or I won’t sleep…I won’t EVER be able to cook again. I won’t ever be able to teach you what you need to know, if I DON’T get this place organized…..again. “Mommy, you just organized last week.” It wasn’t until I started hearing these statements from my little girl that I realized I had a problem. My Aspie mind saw this as a logical step. Organize first. Work later. But work rarely came. I felt I had done what I needed to do.

After the realization that this was an obsession, I have worked very hard to live how I need to live. To focus on what’s really important instead of what my brain tells me is most important. I’m not quite sure I’ll ever get over the devastation of not having everything in it’s place, but I do know I’m trying. I do know that I look up from my stacks of papers, art supplies, and mounds of fabric and see four sets of eyes that need their mommy to “let it go” and enjoy life….not just the process of working through life. I will have too much laundry. I will have too many crumbs on the floor. I will be disorganized sometimes…..but I will have memories….I will have hugs…I will have happy, well loved children. And THAT’S what it’s all about.

The First Week of the Rest of My Life

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It’s not as if I didn’t know I was different all along. There was the isolated feeling in the middle of a crowded room….never relating to anyone no matter how many people I “tried on for size”…never liking the same kind of boys my friends did. I mean sure, I dated the same guys… but the boys who captured my heart were always a little strange. There were uncomfortable silences after I would make a joke. I had friends become angry and ignore me for weeks/months at a time, and I didn’t even know what I had done. (A problem that happens for me still) My friends would be so excited about an upcoming event they had all planned and I would either dread it or find an excuse to stay home. I had friends, don’t get me wrong….good friends…..but I knew in order to remain their friend, there were parts of me that I had to keep hidden.

One of my earliest memories of what would be a long string of confusing friendships was when I was 5. I spent the night with a friend and, like so many little ones, I got homesick. I told my friend that I wanted to go home….that I needed to call my mom. I have blocked alot of the details out, but what I do remember is her refusing me the use of her phone, beating me with a TV antenna and spraying room spray in my eyes. OBVIOUSLY, she didn’t want me leave. Not only did I stay that night, I went back….and back again….and back again. I’ve thought about that night so many times in the last 28 years and wondered why I was so pathetic. I never had an answer. Never. I didn’t just like her a little. I craved being near her. I “needed” her.

In middle school, I had to move schools mid-year. I had a problem with another friend that wouldn’t work itself out. It ended in typical preteen fashion. He said/she said mess and alot of alienated feelings on my end. The trouble was well known in my small, Christian school, and I felt like everybody was always against me. I felt eyes burning into me when I walked the halls. I felt the “you’re a trouble maker” looks everywhere I turned. My parents had always taught me to fix what was broken and give it my best shot….to apologize even when it wasn’t my fault to end it and be the better person. No matter what I tried, I couldn’t fix it. There was ,in my mind, a school wide boycott of me. My parents transferred me to another small, private school. I was elated….for a while. Inevitably, trouble followed. Within a few weeks, there were already problems. I was working hard to stay under the radar. I talked to whoever seemed nice and eventually gained confidence from finding a few friends, but I couldn’t seem to dodge issues with other people. All my moves were wrong.

In high school, I wasn’t part of a particular crowd. I found myself floating from group to group looking for acceptance that I only found in a couple of girls. By the time I hit 15, I had gotten a much bolder attitude about me and ditched some of my timid ways. I began experimenting with styles and felt like every day was a different costume party. I was a chameleon. Blending and meshing everywhere I went. I had a feeling of “fakeness” no matter what I tried….like I was never me, but always imitating someone else. Towards my Junior year, I began to not really care if I fit or not. I was fed up with trying. I couldn’t find the fit anyhow, and it seemed too hard to make it happen. I got in fights with teacher after teacher. I wasn’t a trouble maker, mind you, I was a good student…3rd in my class….but I only remember not arguing with one teacher out of every one that I had. I did it because I felt I was well within my rights to correct anything wrong….whether it be papers graded incorrectly or things said to me in tones I didn’t like. I couldn’t understand why *I* was always the one getting into trouble when THEY were the ones that were being unjust. There was a common theme in my life….Blow up and then apologize like mad afterwards. Eventually people got sick of hearing it and I was never so happy to leave an establishment in my life.

After graduation, I took a year off from school. I worked three jobs because I couldn’t stand just being home. I was always “on”. I couldn’t just do nothing. I couldn’t just relax. There was always a plan…always something I HAD to be doing. I decided it was time to hit the books, after that first year…dive into college…only I couldn’t pick just one thing that interested me. Everything sounded fascinating in way or another….I was scared to pick “just one”. Having a logical paramedic father, I decided nursing was a good choice. I was smart. I made the grades in high school. “No problem.”, I thought. I enjoyed the information in my Literature and Art History classes. I never made any friends though. I sat in the back….always came in right before class started, so that I wouldn’t have to speak to anyone…. Then came the chemistry class catastrophe. No matter how hard I listened, I couldn’t focus. No matter how much it was explained to me, I couldn’t get it. I was barely making it. The day the professor said, “Everyone follow me into the lab. Time to get hands on.”, I walked…..not into the lab, but out the door. I never went back. Not to Chemistry. Not to Art History. Not to Literature. I didn’t care about the money spent on the classes. I couldn’t do it anymore. One lab class that I never attended ruined my entire college experience. I was done. I felt like a complete failure. I began turning to drugs and alcohol to numb my low self esteem.

I eventually met a guy, and for the sake of his feelings and my children’s feelings, I will simply state that we got married, had 3 kids…and, like every other relationship/friendship I tried, it ended. Badly. Another failure under my belt. Depression overcame me. I had zero direction. I hated everything and everybody….especially myself. I gave into the depression. I gave into the self doubt. I drank my problems away. I lied to everybody about who I was, what I thought, and what I did. Noone wanted that truth. Nobody wanted to know that when I put my kids to bed at night, I curled up with any bottle that would make me numb. I didn’t want to know it. I didn’t want to do it. I couldn’t stand people, life or me. I didn’t have the strength or confidence to anything right. I was at the lowest point I had ever been.

After many horrible relationships and failed attemps at dating, I met this guy. I couldn’t explain the rush I got around him. It was unlike anything I had ever experienced. It scared me… and excited me at the same time. We began spending every waking minute together…and I fell in love. Hard. I ditched the bottles of booze. I had found the one person that gave me strength to be better. I found the one person I was scared to lose, apart from my kids. It was perfect. We were perfect. We had another child and got married. We were living my dream. I FINALLY had it together…….so why couldn’t I FEEL better. I had God. I had church. I had a great family. I had an incredible husband that supported my every breath. Still……I was alone in my mind. Still I was different. There were problems I couldn’t put my finger on. I was supposed to be happy, yet I couldn’t get over feeling like I was from another planet and had been dropped here by mistake. I continued to lose friends left and right. I couldn’t understand what was wrong with me. WHY did I feel so isolated?? WHY did people find it so easy to run from me? WHY was always saying and doing the wrong things to everyone?? Why was I attacking my husband and collapsing in tears every month or so?? I had no reason for it.

As a mom of four, who hates doctors and medication, I didn’t want to go. I had a son who was being tested for Apergers and I needed to devote all of my time and attention to him. I could put me on the back burner. I was a walking issue all my life, no sense in talking it out now, right? Just keep coping like always. Up. Down. Up. Down. I researched every minute I had about Aspergers. I wanted the best doctor for my son. I wanted to be well educated, so that I could mold him and help him grow into a successful young man that OWNED Aspergers. HE would be the poster boy. HE was gonna shine. I would make sure of it. I read and I read and I read until I passed out many nights. I began joining online support groups for other moms of Aspies. I had questions. They had answers. By accident, I joined a page that I thought was for moms of Aspies. I quickly found out, it was for the mom WITH Aspergers. Awesome. I wanted to see what they have to say too. It was in the next few days that things began to unfold for me. My heart raced as I read post after post of women describing ME…..MY life. My most intimate, dark secrets. I took a random internet test. I awaited the results calculating with as much anticipation and nervousness as all the times I had waited those daunting three minutes it takes for a pregnancy test to show that second pink line………”Calculating, calculating, calculating….POSITIVE.” I took another…and another…..and another. ONE of these #*$@ things has GOT to say I’m normal. Nope. All signs point to Asperland. I wasn’t the type to simply trust online tests I had found, so I started talking personally with an online psychologist friend and other Aspie moms. I had never been more sure of anything in my entire life. I had Aspergers. For a week, my mind raced and recalled events that suddenly made so much sense. I wasn’t mean….I wasn’t attacking anybody on purpose…nobody was really attacking me either. We were speaking different languages!

During the first week, I analyzed, obsessed (like us Aspies do), and relived so much of my life in my head. I laughed. I cried. I threw up. I got angry. I got determined. I got overwhelmed. I wanted answers…..and boy, did I get them.

At the end of this first week, I can tell you that I am tired, above all…but I am ready to be who I was meant to be. This is…..the first week of the rest of my life.