“How Do You Do It?”

“How do you do it?” Hands down, that’s the number one question I’m asked. Coincidentally, it’s the one I have yet to come up with a decent answer for that doesn’t leave, even me, confused in the end. So I’ll attempt to tackle it now, that broad, sweeping question…”How…do you DO it?”

 

We’ll need to break it down a bit, because like I said, it’s a broad question. How do I raise special needs kids? Four of them? Well..I don’t know anything else. This is my life. The only one I’ve ever had. It feels normal to me, this flow of ours. Honestly, sometimes when I leave you and your typical children, I want to ask you the same thing…but it would sound RUDE, so I don’t. You know, I buy extra chicken nuggets, when I go to the store for the biggest Pull Ups that they are always out of. I cover up sleeping children in halls and think nothing of it. I drink more coffee than Starbucks is allowed to sell me daily. I sit on the outside of my kids’ doors sometimes and cry. I pray. A lot.

 

How do I homeschool a highschooler, a middle schooler, a fifth and first grader? ….Can I answer coffee for all of the questions, actually? I kid. Well, I frankly, hate answering this question. Are you asking because you actually want to homeschool your kids or are you being nosey? Pardon my bluntness, it’s just my kids get “quizzed” a lot…more so than any typically schooled children, I assure you, and it’s just a sensitive topic with us. Also, most people don’t really like my answer, BUT if you really want it…here it is. We’re eclectic unschoolers. I use my children’s abilities and interests and work with them, not against them. If you’d like to know what eclectic unschooling is, there is Google. I don’t actually enjoy explaining it THAT much. I know…I’m the worst.

 

How do I work and have homeschooled kids? Oh that one’s easy. Have you seen my second boy? Thirteen years old and over six feet tall. He eats two egg sandwiches. For a snack. I HAVE to work. Sometimes that means I clean other people’s toilets at midnight. I dunno, man. I do what I gotta do. I nap, and my oldest son gets paid to babysit. Life skills. It’s a team sport.

 

How do I find time to write and run a Facebook page, while taking care of my family? This one is usually loaded. It’s asked by people who say they are just too busy living to be online. The people that don’t understand the years I spent alone, wishing for someone to share my day with. They don’t know what it’s like when you find people that are going through the same things you are on the other side of the world. They don’t know what it is to love a family, a friend, that you’ve never seen, but speak to every day. This time online is sometimes the only social networking I have. I MAKE time for it, because my friends, my community, mean something to me.

 

How do I do it?… I just do. There is no other option.

It’s Time To Come Out

I have no problem being open and honest. That’s what Mutha Lovin’ Autism has always been about. Throughout these last few years, there have been things I’ve kept hidden though. I’ve honestly kept them hidden my entire life. When I was very young, I became…curious…about sexual things. I’m a sexual person. I think some of us just are, and it’s there young. I experimented. Nothing TOO major…but as the years went on, the experimenting became more intense, and it caused tension in some of my friendships. It caused confusion and depression for me. It caused me to be a victim of bullying. I would say a fair deal of this turmoil was brought about by the fact that I was a young Christian girl, attending a small, Christian school, and the people who I experimented with happened to be girls. Now…on the outside, quite young, I showed interest in boys. I had “boyfriends”. We “went together”. I dug dudes. They were my best friends…but when the first one put his arm around me, I felt nauseated. I was so confused and angry. At that time, I had been experimenting with females for a few years. I didn’t understand anything that was going on in my head and heart. I hurt his feelings. He never tried anything again. We remained great friends. Just…really great friends.

Over the years, I continued dating guys in the open and having flings with females on the side. Never once did I think of myself as a lesbian. I just thought of myself as disgusting and trash. Early on, I was the victim of molestation. My first sexual encounter was unwanted and traumatic for reasons I won’t share. It causes my family pain to this day. I was molested or “bothered” four more times by four separate people. I was raped once. By a friend. To say I was and have been confused and burying a lot is an understatement. It was THE disease eating up my happiness like a cancer. I refused to get help. I refused to face anything. I couldn’t. I didn’t even know how to start.

Something happened that changed all of that. I had reason to come forward about my abuse. And I did. And I lost half of my family. It was hard at first, but it’s gotten much easier. I’m proud I finally spoke out. Maybe it’ll keep someone else safe. A few years passed, and I was getting stronger…but there was more to deal with. I was speaking to the world about honesty and transparency and yet, every day, I stared in the mirror and couldn’t tell myself the truth of who I am. I couldn’t tell my husband, because I hadn’t even told myself.

I knew in my heart that it was the final piece to my puzzle. The one that would make the other random, ill-fitting pieces finally make sense. I also knew I had to tell my husband. I guess it’s not enough to find out your wife is autistic. Mine gets to find out that his is sexually different from what she portrayed herself to be. Some may think that’s every man’s fantasy, in real life, it’s a bit more complicated than that. Our story is our story, and our private, intimate details are just that. I will say that it’s taken a lot of talking, a lot of tears, a lot of embarrassment, and a lot of understanding to bring us to the place we are. It’s not been easy, but it feels…right. I love my husband. I desire my husband. That’s all anyone really needs to know. The rest is ours to hold onto.

What I will say is this…I didn’t choose this. I didn’t ask for this. I didn’t want this. I begged God almighty to take it from me, and while I trust in Him and all He’s capable of, He hasn’t taken it away. It is as much a part of who I am as anything else. And I’m alright. I’m more than alright. I’m loved by my husband and my God. I’m safe. I’m happy. I’m healing.

I also happen to be gender fluid and pansexual.

I’m Alive. (My Anxiety and Depression Story)

Becoming a mother was all I ever wanted. When asked what I saw for myself after graduating high school, I said, “A mom.” My class predicted I’d be the first female navy seal. I met them somewhere in the middle and became a special needs mom. I wasn’t upset when I got pregnant right after I got married. I was elated. Finally, everything I’d ever wanted was growing inside of me. My pregnancy was difficult. I have auto immune diseases that weren’t diagnosed then. I stayed sick. I was miserable and sad. Shortly after my son was born, and by shortly I mean the first night home, he began screaming for hours on end. He screamed during all of his awake hours for six weeks. He vomited all of his food. I had to stop breast feeding. My life was not following my script. I began to fall apart. Sleep deprivation, sensory overload, hormones and defeat were stripping me of my sanity. When I saw the worry, not just for my son, but for me in my family’s eyes, I knew I needed help. I contacted my doctor and he put me on Zoloft to get through the “baby blues”. Baby blues…so cute. This condition that takes women’s lives, we give it a name that belongs on a baby registry.

Never questioning whether it would work or not, only trusting it would, I left with my prescription. (We didn’t have selfies then, you’ll just have to believe me.) The next year was hell. There were no crashes. No highs. No lows. No sex. No anything. I was a zombie. I was a distant mother, wife, friend…person. I pulled myself off and assumed medication wasn’t for me.

I had two more children within three years and became a youth minister. Whenever I had mental health issues, I assumed they were attacks from Satan. I placed my screaming toddler at “God’s feet” in front of my entire church. At this point, unbeknownst to me, I had a full fledged child with autism on my hands. To the church, and by no fault of their own, he was under attack. Our entire family was “under attack from the enemy”. He had a “rebellious spirit”. This was spiritual warfare. After six years of youth ministry and not even knowing that we were a family swimming in special needs and mental illnesses, my marriage fell apart. Very, very publicly. I also fell apart very, very publicly. I left my husband, moved in with my parents and began the decline to a total mental breakdown. Single life can do that to a mother. This was mental hell. Everything I wanted was gone and destroyed and everybody knew it. I left my church and all of my principles behind. I’ll spare a couple of years for my dignity, but I eventually came out of my “rebellious period”, found a church I love, and married my husband. He was and is my soul mate. We had a son together. Everything was falling back into place. Except it wasn’t. I was still a miserable, angry, nervous wreck most of my days, and I couldn’t shake it. Homeschooling, special needs, auto immune diseases, advocacy, work…It was all too much. Simple trips to the grocery store for forgotten detergent gave me panic attacks. I took the long way home to avoid traffic and not have panic attacks in the car. I spent more time locked behind my bedroom door than playing with my kids. I was missing everything. The moment I found myself screaming to my husband that “If it wasn’t for the kids, I would kill myself. I can’t. I don’t have it in me…but I don’t want to live. It’s too hard.”, I knew I had to do something. Moms aren’t supposed to be the weak ones. Everybody knows we are the backbones of a family, if we are good ones, and I desperately wanted to be one of the good ones. I didn’t want to admit I was failing. See when you hear your own death fall off of your lips though, your view changes. Pride takes a back seat. Stigma? What stigma? Save me. That’s all we know, at that point. Save me or let me die.

Medication may not always be the answer, but for some, it’s the right answer. It’s THE answer. The wrong answer every time is dying.

When Friendships Dissolve

There is a common misconception that those on the spectrum don’t like to make friends or being around people. The facts are actually that’s it’s difficult to make and keep friends when you’re on the spectrum, and sensory processing issues and anxiety can make it difficult to be around people. But hey, if you can deal with those things, people rock. I have a wide array of friends. I’ve never understood cliques. I get squeamish the minute I feel one forming around me. Limit my horizons? Ew. No thank you.

There’s another misconception about those of us on the spectrum.  People really believe that we don’t have feelings, because we don’t display them like our neurotypical peers. The fact is in this situation, we feel TOO much and have a hard time processing and displaying such intense emotion. In actuality, I believe we feel more than others.

Which brings me to the point of this piece. What happens when someone that you love intensely doesn’t love you back? I’ve had this happen in many different scenarios from boyfriends, girlfriends, friends, and family. The one that will keep me awake, staring at the black ceiling at night, is losing a friend. I’ve lost friends over many things. Being too weird, being too outspoken, being too honest, being a jerk sometimes (typically during sensory overload or meltdown), being too much of an activist, and the one that hurts the most…being too autistic.

When someone that you love doesn’t love what is at the heart of your existence, it is the ultimate betrayal. There isn’t much that hurts worse, and I’m a professional at pain management…So how do you recover? How do you move forward? Well, it depends on the situation. If you’re to blame for the loss in trust or friendship, go to them. Don’t be too proud to apologize. Be real, and then give them time to process. They may not be able to forgive you right away. They may never…but you tried. They may actually care for you enough to forgive you, and while your relationship may be awkward for a while, there’s a depth that comes from weathering those storms and coming out together. Just…be patient. You were a jerk. Don’t do that again.

If someone can’t handle your honesty, you need to ask yourself a couple of things. Are you a blunt jerkwad? If you are, go through everything I just described about being a jerk, and hope for the best. Then work on not being a jerk, because hey…you’re losing friends. If you aren’t a jerkwad, but are in fact, a loving, honest friend who doesn’t want to see your doofus friend get hurt, then hold your ground. They’ll likely come around apologizing, OR they’ll continue being stupid…and really…who needs that ish in their life, amiright??

Finally, the biggest loser of them all…the one who leaves because of your neurology. Forget them. Seriously. Don’t you DARE shed one more tear on someone who is so shallow, they would walk away from you over this. You may not be perfect, but you’re the one concerned with salvaging a relationship while you should be sleeping. So honey, you ain’t the problem here. You are beautiful. You’re a mess, but you’re a beautiful mess, and you deserve friends who are going to support you. I know it’s hard, but they’re out there. Don’t waste your time crying over the wrong ones.

And get some sleep.

I’m Viral. It’s Not Contagious. (A Love Letter to My Readers)

I’ve never desired fame. I never cared much for money, other than the fact that brand new Converse shoes and bills being paid feels pretty cool…and money kinda helps with that. I’ve been published once in an actual book. My name in print didn’t mean as much to me as the collaborative message of the bloggers inside of the cover. Autism acceptance. I have never received a dime of it’s sales. None of us did. We submitted our pieces for the education of others. Not money.

When I started Mutha Lovin’ Autism, it wasn’t about fans or followers. It was about community. Anybody who has been with me from the beginning, and there are quite a few, can tell you that. I care. A lot. I cry with my readers. I listen. I open myself up. I tell it all. “The good, bad, and the ugly.” is a common phrase. This is my tribe. My family. No, fame had nothing to do with it. I was alone in autism. I was searching for you too. I’d been to the doctors, schools, friends, family. I’d begged for answers and searched for solidarity, a kinship, in somebody. Anybody. I couldn’t find it. I knew others had to feel the same. I knew I could tell my stories and make someone feel better. Maybe even help them a little. And I did. And it was incredible. The longer I was online telling my stories…the deeper my desire for honesty and transparency grew. I wanted the truth…the raw life lessons that REALLY grow us. I wanted them for you and for me.

I watched as my family, your families began to flourish, in this honest, open, always learning community. We were GENUINELY making change in our own families and in the world around us. Never ONCE did I see dollar signs in growing likes. Never once did I, or do I, see my followers as beneath me or behind me. We have always been in this together. For each other. You were there for me when I was personally diagnosed with autism. You’ve gotten me through my great grandma dying in my arms, You were there when my son spoke his first full sentence.

You were there after my two month absense. After my breakdown. I didn’t know if you would be, but you were. You were there the morning I went to the doctor to ask for help. You were on my mind and heart when I took the famous selfie. You were there when I filled the prescription. You were there when I woke up and had gone viral.

You’ve been here every day since.

I don’t know how or why this happened. I’m almost as amazed by all of this, as I am meeting Doug the Pug…but it did. And it is happening. And it’s incredible to be a part of. Do I want to be well known and famous? Hell naw. I want autism and many other mental health issues to be well known and famous.

Hashtag Humbled.

Are You An Autism Advocate Bully?

I have a tendency to be a little naive. Sometimes it works in my favor. Sometimes it leaves me feeling ridiculous…even still, I always enter a situation assuming the best of people. When I joined the autism community, I did just that. I assumed it was full of other people like me, who needed comradeship and simply wanted what was best for their family. I believed this was one great big “kumbaya” fest of love and support. Simply put….I was stupid.

Like most of my bubbles, that one got burst. What I discovered is, there are just as many hateful, arrogant, mean-spirited people in the autism community, as anywhere else. In fact, for me, it feels worse here…..because HERE is where openness and acceptance should be abundant. People shouldn’t be afraid to share here. HERE is where bio-med and ABA supporters, vaxers and anti-vaxers should come together and say, “We really just want what’s best for ALL of us….and what’s best for EACH of us, isn’t the same thing.” Here is where respect should be rampant…..and yet HERE is where it’s not.

As an adult with Aspergers, friendships have always been difficult to come by and maintain. It’s been one of THE most painful aspects of this life I’m navigating. I can count far more people I have lost than kept….and I mean, genuinely, kept. I got over wanting to be one of the “cool kids” (And don’t kid yourself…this doesn’t just happen in childhood). It was stressful trying to figure out the dynamics. I would say and do foolish things, because I thought I was SUPPOSED to. I was mimicking. I was finding myself and losing myself constantly. It was torture….I left it far behind, and truly allowed ME to discover……me. It took 30 years for me to be comfortable with who I am…and it’s a struggle still on some good days. You see, autism for an adult….isn’t any less difficult. Those of us on the (for lack of better words) “high functioning” end have learned how to mask it, in many ways. We HAVE to….because trust me, even in the autism community, we’re considered weird. Plain. And. Simple.

So when an adult with autism is newly diagnosed, there is such a rush of emotions and memories and stimming and perseveration and fear and relief….and…and…and……it’s so much to process. We are so beside ourselves to, finally, have a reason for everything. Just…”Thank you, God. There’s a REASON.” We have a lot to process. We need support. We need ears to listen. We need shoulders to cry on. We need friends. We need love.

We need wine.

What we DON’T need is anybody forcing us BACK into a life of covering up who we are, because our truth makes them uneasy. What we DON’T need is someone telling us how to handle our own process. What we DON’T need are other autistic people telling us that we need to shut our mouths. Call it life. Call it a journey. Call it whatever you want…..it’s not ANYBODY’S business to tell another how to go through it.

If you’re an autism advocate bully, stop it. Just…stop it. This mess is hard enough, without us turning on each other. Show adults with autism the same grace and understanding you’ll want someone to show your child when they grow up….because believe me, they’re gonna need it.

She Is Me. I Am Her. (The Female With Aspergers)

I have gone back and forth over how to write this blog. I’ve actually never given a piece as much thought as I’ve given this one. My typical writing style involves relaying information based on life experiences, feelings, and perceptions. This one HAS to be a little different, while still putting all of those things into it. You see, writing about women and girls with Aspergers is no simple task….and yet, I know the information more than any other I tackle. I know because I have Aspergers. I am Aspergers. My daughter is Aspergers.

I am forever reading the words, “My child is more than autism.” I absolutely understand that thinking. I won’t argue that belief. We are just people, like everyone else. I will, however, simply state that until one has this condition, they can’t quite understand why that statement isn’t exactly factual…or how much comfort knowing about one’s Aspergers brings to them. Aspergers is why I am who I am. It is why my daughter is who she is. I can no more separate myself from it and the way it causes me to be, than I can change having green eyes, big bones or brown hair. I can camouflage all of those things, but they are still there. They are still 100% me all of the time.

Most parents of Aspies have a goal to show their child their worth and how to feel good about themselves in spite of Aspergers. I choose to feel worth and show my daughter hers because of it. I like me. I like her….with good reason. In this piece, I’ll share this condition as it affects females, in the best way I know how….from my heart…and my life experiences. I’ll also share the factual, scientific details. Understanding women with Aspergers is unlike anything you will ever attempt. We are complex and ever changing. We are bold, yet timid. We are honest to a fault, yet hide ourselves in the “acting” we display for the world. We are deep thinkers, while completely simple things escape us.

When I was a child, I remember feeling like I was in a bubble. I was right there with everyone, but also in my own, very private, world. I listened to people converse, and I would have most of my part of the conversation in my head. I didn’t share a great deal of what I thought, because my thoughts weren’t like the words I was hearing others say. I didn’t know why. In my very young years, I didn’t question it, but I did notice it as early as five….particularly when I went to school. I liked people, but I really enjoyed playing alone. I was an only child, so that was fairly easy for me to do. I could be myself, when I was alone. I could talk how I wanted…to my imaginary friends, to my animals, to God. I was deep. Always. I pondered life’s complexities and questioned everything. I was timid and quiet, in my young years…and yet when I became comfortable with people, I was a performer, always sure to bring a chuckle and a smile. My moods were ever shifting. I craved solitude, and then felt lonely in the privacy I sought out. I did a lot of playing outside alone….where no one could hear me talk to myself. I sang, talked to God, imagined I was in a foreign land, and typically pretended to be someone other than myself. I would swim in my pool and become a mermaid, discovering the beauty of the sea. When I went to bed at night, I was like Shirley Temple in The Little Princess, waiting for a mysterious man to come tell me I was in the wrong place and carry me off to my destiny.

I escaped into other worlds regularly. When I discovered The Chronicles of Narnia, I went with Peter, Lucy, Susan and Edmund. I lived that life. I was there. It felt like home to me. When I wasn’t reading those stories, I felt homesick and disappointed with reality. I drew, painted, made cut paper artwork and any other kind of art I could imagine. I liked the quietness of it. It made sense, when so much didn’t. When I played with other children, I tended to control the play. I needed a script to follow, and I needed them to cooperate. To my knowledge , they never felt controlled. For me it wasn’t even about being in charge, but about inviting people to be a part of my world, as I was a part of theirs. I enjoyed playing a mother. I wanted to take care of everyone. Looking back, I realize there was a desire to make everyone feel loved and special. My dolls, stuffed animals, my possessions were real to me. They felt emotions. They needed me. I was justice. I was love. I was a protector.

My favorite friends weren’t even kind of close to my age. They were the elderly. They were my next door neighbors, Mrs. McGee and her husband, “the man Mrs. McGee”, as I called him. They were my grandmas, my grandma’s next door neighbor, my grandma’s best friend, who would write me fascinating letters and send them to me in the mail. Those people were my dearest friends. I loved their stories about a time that was different from the world I knew. I loved to walk through their homes and see the old things that had history. I wanted to go to that place in time. I wanted to escape.

I remember having so much frustration that I was afraid to show. I would pull my hair and cry uncontrollably in private. When I was eight years old, my parents owned a pizza place. I made a “house” in the back of our station wagon, where I could be alone while they worked. One evening, I was sitting in that quiet car, looking into the restaurant. I watched as people talked and laughed with my parents. I started to cry….just a little at first….and then I gave way to most intense cry I ever remember having. I felt alone. I felt like everyone was enjoying me not being there. I felt more than just a window between us. I was different, and I didn’t know how to tell anyone.

As the years went by, I became more outgoing. I accomplished this by pretending to be other people. Whoever I was with, I would mimic. I was never true to me. I was always working to blend and fit in. Soon, I didn’t even really know who I was. It definitely wasn’t any of the roles I played. I was one person as a daughter. Another as a granddaughter. Another as a friend. Another when I got my first job. Another on the volleyball court. Another as a girlfriend. I was a million different people, but none of them were the real me. They were either fragments of me or lies. I mimicked actresses that left an impression on me in films. I became characters in books. I was intelligent. I knew how to hide myself…how to behave in certain companies as to not bring attention to who I was on the inside. There was, however, an underlying fear that all of these people would one day get together and discuss the me that they knew. I was petrified that my false identities would be shared and that I would no longer have anyone at all. I felt like a liar….and I never wanted the truth known. Deep down, I wanted to just be me, but I didn’t really know who that was….and I wouldn’t for a long time….thirty plus years, to be exact.

As I watched my daughter grow, there were no red flags…not for a long time. She was happy, vibrant, the center of attention most everywhere she went. She was/is magnetic. People love her immediately. There is a depth, an intelligence to her, that cannot be matched. She’s artistic, contemplative, wise beyond her years, funny…..an actress. When she turned seven, some things started to catch my attention. She didn’t like to be touched in certain ways. She enjoyed being alone. She controlled play when she played with others. She began escaping into books. Her mood and characteristics changed, as she would read. She would watch movies and become so a part of them that she couldn’t separate reality from fantasy. She would mimic actresses. She would speak to me in movie lines. She would become angry, violently angry, when she didn’t understand things. She would become so caught up in her closest friends that she couldn’t stand life without them. She didn’t know who to be, when they were gone. She lined up her ponies from one end of her room to the other. She would design (still does) elaborate homes for her Littlest Pet Shops, yet would rarely play with her creations. She would stare at her miniature animals, love them deeply, carry almost 150 of them with her everywhere she went, but wouldn’t actually play with them like other little girls did. She was, and still is, obsessed with them. She breaks down when she forgets them at home. She speaks in accents some days….pretends she is in a foreign land. She will sit with the elderly and listen to their stories, just like I did. She’s enamored by a world she’s never been to. She likes her privacy, and yet it makes her lonely. She cries easily and can’t explain her feelings without becoming angry and screaming.

She is me. I am her.

There is so much to our identities, that I could never write it all in one simple blog. By now, if you have Aspergers, or your daughter does, you have said, “That’s me. That’s her.”, while reading our minor descriptions. I have searched for the best ways to describe Aspergers in females. While the details are so very vast, I feel I have extracted the best ones for you here….

-Emotionally exhausted and distraught due to constantly trying to process personalities and the “right way to be”

-Overly apologetic when making mistakes or lashing out

-Low self esteem and trouble with her own identity

-Can be overly well mannered and behaved, deterring anyone from seeing there are problems

-May enjoy escaping into nature or “other worlds”

-May be very in tune with animals and love them more than people

-May be very nervous or standoffish at the beginning of a social function then completely comfortable, not wanting to leave, near the middle and end

-Vulnerable to peer pressure and bullies. Can easily be taken advantage of. More prone to be used in sexual ways than those with better understanding of the dynamics

-May have one best friend that she relies on to help navigate social situations, whether said friend is even aware of the role they are playing

-Feels defective and like she must hide her true identity

-May collect certain toys or objects and has a strong desire to keep them organized and close to her

-May have an intense connections to one or several fictional characters. Has a feeling that she is a part of them and they are a part of her. May feel like they would return the feelings, if ever they met

-May have in depth knowledge of certain topics and very little knowledge of the “simple” things

-May have an intense interest in reading and art

-May not play with toys like other children play

-Can be fascinated with other worlds and eras

-Feels like she is from a different time and is out of place

-May be a tomboy

-In adolescence, she may become obsessed with her appearance. Having to have it “just right”

-May not be into the latest things that every else is into

-May care very little about fashion, to the extreme that it angers her

-Enjoys male friends more than female friends. Finds males easier to understand

-May prefer to be alone

-May be very outgoing at home and extremely quiet and scared in public

-May have imaginary friends

-May enjoy writing her feelings or works of fantasy fiction

-May have more adult friends in childhood

-Notices little things that others don’t….sights, sounds, smells, textures

-Aversions to some foods

-Prone to eating disorders

-Can be overly motherly from an early age and is fascinated with having children

-Can be too blunt and speak her mind, offending others and losing friends

I hope that this has helped you understand yourself or your daughter just a little more. More than anything, I want you to understand that Asperger women CAN live a happy, full life, when given the support, love, respect and guidance they need. Education and acceptance can carry your family through any of the storms.

This truly is a wonderful life.

We Aren’t After Your Pity

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. 

Desperate To Be Heard

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.

“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.