Tuesday, March 26, 2013

A controlled mess

I am, by nature, an absolute control freak. Or at least, that's how I like to imagine myself. I like to be able to carefully handle situations and my life. I do this in order to best be able to predict outcomes in my day to day functioning. I will honestly imagine how situations, interactions, hell, sometimes conversations, will execute themselves sometimes days or weeks in advance. I understand how futile this can be.

If I could, I would plan a spontaneous vacation.

With an Autistic child, this can get complicated and even the best laid plans have gone to complete smithereens within seconds of making them. With Lupus and rheumatoid arthritis, where my body feels different, at times, on a daily basis, this can swayed by something such as the weather. I have zero control over the weather. Add in a five year ginger haired boy and my life proceeds beyond complicated. Further multiply this by the anxiety which comes with having a Type-A personality, the unpredictability of a syncope disorder (Google it- it's not fun), and common stress from life, well, you get the picture.

To be blunt, I can be, and am, a complete mess. Don't get me wrong, my friends tell me I'm hilarious in my screw ups - sometimes - but I kind of think it's because I'm usually willing to laugh at myself.

I can pinpoint where and why the control factor started. I had a bit of a messed up childhood and managed to further some of the trend into early adulthood. Therefore, being so out of control makes me crave stability. My idea of stability means that I should be able to depend on "sameness" or regularity in my life and in my family's life. However, life doesn't work like that, at all.

So, why write about this?

I get bothered when people say that I'm strong. Or brave. Those are two adjectives which have been applied to me quite bit in my life and they always sit wrong in my head. Strong people don't obsess over things as much as I do, surely. Or have anxiety attacks because of something that hasn't even happened yet. Certainly, brave people don't put things off because they cannot foresee how the doing of these things will affect them, do they?

I know that others do the same thing, mostly other women, because I've met them. I write about things that are sometimes painful to admit because I know for me, whenever I read things I can relate to, it makes me feel less alone. This would be why things like forums for common interests or support groups exist. However, there doesn't seem to be a forum for batshit crazy thinkers. Or for moms who so carefully screen their kids playmates that they would rather, at times, keep their children away from other children. Yeah, I'm that mom.

Please don't misunderstand that last part. My children aren't kept inside a locked house 24/7, I'm just very selective about who I allow them to be around. I am a strict parent afraid of messing up her kids.  Not enough other parents are the same way, I don't want their children rubbing off on mine if I can help it. Harsh, yes, but those adorable little terrors are future adults that I will be foisting onto the world. I want to make a good impression.

So, I suppose my point in all of this is to not be afraid if you, too, are a mess. You have another member of the club.

Friday, March 22, 2013

What I want for my son

Yesterday was IEP day. We had to amend his current IEP for the rest of the school year due to Morgan slipping in reading, though his grades are great, and I went ahead and got the ball rolling for third grade. During the course of the meeting, a lot of questions were asked on all sides concerning Morgan's welfare. This is typical IEP stuff. We hammered out a great new IEP for Morgan which, I hope, will serve him well in the coming months.

There was one question, though, toward the end that will stay with me for years. The Occupational Therapist (OT) asked me, "Where do YOU see Morgan?" Since it was an open question, I answered without hesitation, "I see my son growing up and hopefully going to college. Empowering himself with knowledge. Advocating for himself; maybe one day sitting in front of Congress and advocating for his Autistic peers. That's what I see for him." She looked me and replied, "Great answer... but I was talking about third grade."

That's the thing. Whenever I go into an IEP meeting, of course I'm looking at the current school year and the next one. I'm anticipating how this current IEP will affect him one, three, five, ten years down the road. I assume others do this, too. 

What do I want for my son? I think I know.

I want Morgan to grow up knowing he's loved. I think most all parents want that. But I really want my child to know that his family loves him. 

I want my son to grow up with the knowledge to advocate for himself, not just on the Autism front, but on any front. Self advocacy is an all encompassing area and something that not too many people are good at. I want for Morgan to be diplomatic when needed, but also forceful when he has to be. 

I would love for him to advocate for others. I meant that. Morgan, even at this age, has a clear sense of right and wrong and I would love to see this put to good use. Who better to advocate for Autistics than an Autistic? Morgan will have grown up seeing the wrongs in the system and having his parents explain to him exactly why those things are wrong. I don't see those issues disappearing in ten to fifteen years, so I don't see why my son can't participate in the discussion on how to solve them. 

I want for my son to go to college. That's a given in this household where higher education of any kind is some sort of gold standard. We want him to have that experience because it's an experience we've had. Call us selfish, but we push our son to try his hardest and he does.  

I see Morgan being an engineer one day or a mathematician. Or, as I said in the IEP, "some sort of other geek related career where he's happy as a lark."  I believe firmly in pushing his strong points and interests and I'll continue to do so.

I want, one day in the very far (FAR) future for Morgan to be married. Have kids. Own a house. But God, he'd better wait a long time because I don't know how well I'd handle it. 

I view my son's disabilities as different abilities most of the time, not things which cripple him. Granted, I've let them get me down at some points, but I don't want them to get him down. 

I want so much for my son. I'm determined that if he wants it, too, he'll get it. I'm not raising people who give up. I'm showing them by example that this is never an option.

Thursday, March 21, 2013

Self indulgent post

*This is not to offend anyone within the community. This is only my truth, right now this second. Thanks.

I tell myself constantly that Autism isn't the worst thing to have happened to our family. Things could always be worse. One of us could die for Christs sake. Or have cancer. Or another possibly terminal illness.

But during a week like this, when the walls feel like they're closing in... when things are piling up... Autism, at times, can suck for a parent and, I'm guessing, for the Autistic. Being different isn't easy. Our family knows that. But for as much as this post is about Morgan, it's not. It's about me. His mom. His caregiver.

I love my son. I love everything about him, including Autism.

But there are times when I wish all of us didn't have to deal with the land mines that come along with childhood Autism. The distress on his face when sensory overload sets in. The meltdowns... Him shoving, headbutting me, and telling me, "you could be a better mommy!" Just like he did last weekend when I was trying to calm him down. It hurts. It breaks my heart to see my son, my world, so discombobulated and I can't do anything to help him except for what I'm already doing. Helping. Comforting. Loving. But it doesn't always feel like enough.

Then there are the land mines that others set out for us. Those are what I hate the absolute most. This week, Morgan's case manager wanted to set up an IEP meeting. It'll be for the rest of this school year and into the next. I knew we needed one, so no biggie, right? Wrong. It's an incredibly big deal when the school pops it on you that they are considering moving your son into the resource room. I don't even know how to process this except to research successful cases and model our case after those, if possible. To ask for a 1:1 aide. To demand he be evaluated for assistive technology. To be glad that they, too, think he needs more supports.

But I'm upset. Why hasn't anyone mentioned this to me before now? This is important. Why does there seem to be a breakdown in communication?

Then there is the insurance crap. We began the application process this week for the Medicaid waiver. We went to the evaluation yesterday and I brought with me the past five years worth of paperwork on Morgan, who attended the meeting with me (it was mandatory). During the ICAPS portion of the evaluation, I had to (painfully) go over my son's worse behaviors. Things he can't control, all within his range of hearing. I hated that. The boom was lowered, too, when we were told that the wait list is eight years long, Eight years... by the time that Morgan will reach eligibility for services, he'll be nearly aged out. Still, it's a grain of hope, right?

In my fantasy world, Morgan doesn't actually change. The meltdowns, stims, reading problems, social skills "deficits" never go away.  Instead, society changes around him. Insurance is there. Special education is acutally special and geared toward teaching our wonderful children. When my son does have a meltdown, strangers offer assistance instead of accusatory stares and ugly things to say. Kids offer to play games with him. Grown ups say, "What a sweetheart!" instead of staring when he tells them spontaneously "I like you."

In this imaginary place, I sleep enough and my house stays clean because I am never depressed or anxiety ridden over things which I cannot control. I stop crying. My kids see a happy mom, not this angry person who would willingly walk down a street naked if it meant that her son would get services if only it meant that her family wouldn't go without something they needed. Like dental care.

In this place, there is Autism acceptance. There is no calling Autism insurance "pet projects." There is no slashing of special education because some jackasses in Washington can't get off of their high horses and just friggin agree on a budget. People open their eyes to what is front of them instead of assuming that their "normal" is the only kind that matters.

I know that those things are imaginary. Because I've been watching and participating in this fight for nearly six years now. It's been two since Morgan was officially diagnosed. Six since we first saw Autism and began asking for answers.

I want to know... if it never gets easy, does it ever get easier to handle? For Morgan? For me? For any of us? For as hard as this is for the parents and families... what does this feel like for the Autistics?

Thursday, March 14, 2013

What messes me up

I want to preface this by saying I know I have a great life. I have a wonderful and supportive husband and two beautiful children. My hiccups in thinking are only from how society has geared all of us into how life is "supposed to be." I'm not mourning for anything, not anymore, I'm just trying to state my own truth. 

You know that little meme thing that's been going around Facebook and other places for a while? It says something like "What messes us up the most in life is the picture in our minds of how it's supposed to be." This is me, I'll cop to that. I'm not saying that I don't like my life, I'm saying that sometimes my head trips me up.

Sometimes, I think, that our minds are one big Pinterest board. We pin little snippets we see from other people's lives onto our brains, thinking "man, they have it great!" We don't know what happens behind closed doors. Which couple is actually on the brink of divorce. If that "perfect" kid is secretly plotting to poison the water supply after the spelling bee. If the Stepford Wife who lives next to you is a raging bulimic/alcoholic who drives her entire household to the brink of insanity, all the while looking great and never chipping a nail.

No, we see the surface of things. I don't think that we ever really acknowledge this fully or often enough. I often poke fun at just about everything because of my own insecurities in life. I'm hoping this is "normal," whatever that means.

I'm always relieved whenever I go into someone's home and see that they, too, are "screwing up" this model of supposed perfection. Clean laundry left in baskets, toys scattered, an enormous to-do list, all of these things make me feel somehow better about how I'm "failing." Or, when out and about, I see a kid pitching a tantrum. That can make me smile because my own kids do it. Sick, huh? No, because, with me, it goes deeper.

I get how I'm really screwing up. The big stuff, not the things that separate me from other moms. My to-do list probably looks incredibly different than friends with only neurotypical kids. I'm sure that they don't have "find a friend" for their kid on there. Also pretty certain that they don't have "teach kid not to lick everything/one" on there, either. But this isn't failing, not really. It's normal for me. This is called life skills in my house.

The bigger things... well, they're very personal and not entirely relevant to this post. I  acknowledge that I have made mistakes in my life. I have hang ups from things that happened before kids. Maybe that's screwing up, but maybe, just maybe, this is a different version of "normal." I feel like our past shapes us, but should never define us. However, I need to take my own advice.

My friend Lexi Sweatpants wrote a great piece called "I'm Jealous of You" (I know this isn't the correct way to cite it, but Blogger sucks, okay?).  In it, she writes about how she's jealous of NT parents who don't have to worry about things that special needs parents do, specifically her, but it hit a cord with a lot of us.

It made me think of how I'm jealous of myself when I parent Bailey during the day, while Morgan attends school. We go to the park, do little craft projects, easily transition from one thing to the next, and, in general, have it easy. I watched him the other day on the playground, in the midst of about a dozen kids. He didn't get overwhelmed, he just played. No meltdowns, not even when we had to leave. He has it easy in a lot of ways which his brother never will and for that, I'm jealous for Morgan. I have massive guilt that I parent two totally different way with these two totally different boys.

I'm jealous that some parents never have to think twice before planning an outing, signing their kids up for sports, or even school. They don't have to consider sensory overload, bullying as an everyday problem, or "gross motor deficits." They might not to explain at a very young age to any of their children what the r-word means. They didn't slug out potty training longer than the "appropriate" time period. They certainly don't have a small fortune in Thomas the Tank Engine crap. Their kids, because of neurology, aren't regarded as lab specimens or freaks. They're just kids. I'm jealous of that. How easy it must be to go through life and not have to think things over fifty times before you leave the house. Or freak out over insurance companies and legislation regarding special needs. It's just... easy. 

But is it easy? I wouldn't know, I can only assume and I know what happens when you do that. I do love my life, I just wish it were easier sometimes, less stressful, and without so much bs for Morgan. I wish that life were easier for him, not me. I can take it, but right now, he's just a kid. I wonder, does he get jealous?

I tell myself that this is life. That this is what it is and I've accepted it. But I know in a lot of ways, I haven't. I'm probably always going to be slightly messed up when I see other moms. When I think, "she makes it look so easy," as a random woman loads her kids without problems into her car. Or, as Lexi said, watches her boy or girl at a game.

What messes me up is the continuous loop in my head of how I always imagined things should be.

Monday, March 11, 2013

No, I'm not okay with that

*Contains strong language

Dear woman in my apartment complex,

I know you don't like me and I'm okay with that. Honest. In a very high school fashion, my friends and I don't care for you, either. You're entirely too loud, crass, and rude.

However, this evening, when you saw Morgan happily "chugging"... flapping his arms, making his noises, excitedly heading off with his brother and me to walk his dog and observed him and his "problems," you didn't need to look so disapprovingly at him.

When I was walking back, carrying his little brother because he had clearly fallen and was upset and Morgan was chattering up a storm.. and licking his face because he was nervous.. and flapping.. and saying hello repeatedly to all of the children, your little "darlings" (who openly reject him, by the way - great parenting!) included... you didn't need to loudly say to my neighbor "you know he's not right?"

Just.. no. Hell no.

I'm not okay with this. You said that within earshot of me, as I clearly displayed... while shaking.. holding on to my child.. while Morgan was standing next to me. I'm sure he heard you, too, but I'm not sure if it was clear to him that it was he you were referring to.

I did not respond in the fashion I so dearly wanted to because there were children present - mine, yours, the neighbors...

I did not tell you everything I wanted to because, unlike you, I have some modicum of decorum within me which dictates that I not unleash on you. This is in spite of  having years worth of pent up rage from dealing with parents, teachers, and strangers just like you. 

 I'm so not fucking okay with this. 

I see you and people like you every day. Your children are less behaved than mine. To look at my Autistic son and say "he's not right?"

You, and people like you, are what is wrong with society. I get I ask people to not judge, so in the case of pot calling kettle, I'll be the damned pot. You are teaching your children that it is okay to openly criticize my son. You are saying, by example, that it is perfectly alright to hurt him with words.

At a birthday party last fall, when your son and another boy snuck up on my son, who was having a sensory break, and screamed, "Morgan's a RETARD! Morgan's a RETARD!" you acted as if my son was to blame. Why? Because he was there? Because he's Autistic? Because you aren't raising your properly? What crap!

I admittedly went temporarily insane because you had the gall to tell me, "You see my son? You see his tears? Your son did this! My son feels bad and you should feel bad." Tell an Autism mom something that batshit crazy and see if she doesn't respond in a similar fashion as I did.

*(For the record, I told her she was raising an asshole, okay? And I might have said she was allowing him to be a terrorist.)

So, no. I'm not okay with any of this. I'm not okay with people like you. People like you make people like me want to scream. I can't stay calm... and collected.. and rational. The only reason I can even project that sort of image is because I have my children around me 99.9% of the time.

Count yourself lucky.


One Seriously Pissed Off Mom

How do I do this?

I get asked, or told, the well intentioned "How do you do it?" or "I don't know how you do it." a lot. It's a common refrain that special needs parents report hearing quite a bit. While I cannot speak for the rest of them, I can only answer for myself.

I just do it. My life can be like a Nike ad. I'm a parent and do what everyone else does, or should do. I do what is best for my children and try to do what is best for myself. Sometimes I fail on both accounts. My friends and I are probably not that different from our NT parent friends... well, maybe a bit.

I admit to not being perfect. I try to be, but I fail every single day. I say the wrong things to my kids and random strangers more often than I can count. I try to apologize, but sometimes I fail.

I cry, just like everyone else. Things are said and done which hurt. I try to reserve tears for behind closed doors, but sometimes emotions leak out in supermarkets and the car. I'm human. The first time I ever saw my son tie his shoes was a big deal and I cried. I used to not be this way. I used to see crying as a weakness. God, I was wrong.

I laugh, a lot. I laugh at things like those cat memes, ecards, sarcastic humor, and probably a lot of the things most other people do or don't. I love to hang out with people who make me laugh and that I can laugh with, such as my husband and my girlfriends. Chances are, my closest friends are people who have slightly twisted minds, love a good drink, and are just plain silly at times. My kids crack me up with their antics, though they don't always make other people laugh. That's okay.

I honestly have to take sedatives sometimes. I have an anxiety disorder and suffer from panic attacks. They used to be more frequent and my medications were more regular. A change in lifestyle has helped to manage my anxiety to a great degree. Indulging in writing, art, and books helps to relax me when I have the time. This blog is a great stress reliever and so is connecting with other special needs parents. There is never any shame in seeking help, make no mistake about that. Mental health is important. I've even seen a psychiatrist. This doesn't work for everyone, but it helped me.

I view a trip to the grocery store by myself as a mini-vacation. Don't laugh, especially once you find out that my grocery store is less than a mile down the road from my house. If a great song comes on the radio, I crank that up. Can we say concert? I pat myself on the back whenever I see that other parents do this, too.

On the weekends, and sometimes during the week, I drink wine. Apparently, I post on Facebook about this a lot, too, gauging from how often my friends put funny things on my wall. If I drank as often as I joke about it, I'd never get anything done. And no, I don't mix my meds with my wine, okay? That is both dumb and dangerous, so please, no calls to family services.

Sometimes, I lock myself in my bathroom, sit on the edge of the tub, and pin things to Pinterest. My kids think I'm on the toilet and this is only good for ten minutes, max. But, when things are stressful, it's a go-to measure. Don't judge. Hey, I used to have the kids go to a window and watch for Dora for a few minutes of peace. This, I found, is only good every other month. Little minds have big memories.

My husband travels a lot. I mean, a lot. There was a period of time when he was gone more than he was home. Sure, it made things hard as hell, but you know what? It wasn't the end of the world. Military spouses have it harder. I felt sorry for myself but it took an actual military friend pointing out how often his wife was alone during deployments to put this into perspective. Now, I just try to plow on through. I grin and bear it. It's what I do.

I meltdown as much as my Autistic kiddo or my NT preschooler do. I'm a big enough person to admit it. As a parent, you're supposed to stay in control. I'm supposed to do all this crap as both a NT parent and a special needs parent. Guess what? Sometimes I get incredibly friggin' overwhelmed and go batcrap nuts. I try to not do it around my kids, but life happens. This is why I try not to judge other parents when I see them yelling at their children. It just happens. You feel bad, apologize, hope you haven't scarred the hell out of them, and move on. This is life, it's not perfect.

As a special needs parent, I'm not so different from other parents, I guess. This is the only life I know. I don't have all of the answers to the universe. I am not deserving of any praise or a halo (mine melted as a kid, swear). There is no mystery in this. I just strive to do what is best and get through life without permanently scarring my kids, just like most parents.

I'm just trying to parent- with a few extra steps thrown in.

Tuesday, March 5, 2013

That r-word

*Contains language. 

There are few words within the English dictionary for which I take offense. I'm an adult and know that words cannot really hurt someone like punches or slaps can. However, that really is not true, is it? Some words hurt more than others because certain words carry connotations of pure malice or disrespect given your situation or background, even if the bearer of those words is not aware of your situation or background. One word in particular stands out to me - retarded.

I hate to even write that word. I loathe that word with a passion. When I hear or read it, I feel slapped. Since I am on Facebook and Twitter (though infrequently), I unfortunately read it unintentionally almost daily. I see it used as a synonym for "stupid," "lame," and "idiotic," among other things. The r-word, it seems just won't die.

People, when I correct them, tell me one of two, or both, of these things: (1) the medical establishment has used the term "mentally retarded" for an incredibly long time to describe individuals who are intellectually disabled or (2) First Amendment right- right to free speech (this is usually not expressed so eloquently).

1. The medical establish has effectively phased out that term, so that argument is invalid. If you catch a doctor saying this, slap him/her- they deserve it.

2. I'm not trying to infringe on First Amendment rights. I love my First Amendment rights! That I am writing a flippin' blog says I am exercising them, doesn't it?

What I am asking, when I ask for someone to not use that hateful word, is for people to not be assholes. To consider who they hurt. People like me. People like my son. He can read and hear, you know. Ask yourself, before you say it, if you would be willing to say that to this face:

pretty cute kid

Morgan was first called retarded when he was about three. At least, that's the first time I was clear headed enough to comprehend what was being said. A very pretty little girl with pigtails said, "get away, you retard!" on a playground in South Carolina. Furious, I marched her over to her mom to tell her what her daughter had said, expecting for some reason some civility. But no, what I received was, "well, is he?" 

That wouldn't be the last time. Morgan has been called that by quite a few people, both children and adults. Other words have entered the fray, but that one sticks in my brain and his. My husband and I have both admitted to using that awful word before but not after Morgan. We're ashamed. Neither of us ever realized exactly how much it could hurt. Now that we do, we want to end its use. This isn't hypocritical as I know I've been called, this is a learning experience and a hard one. To anyone I may have ever hurt, I am deeply sorry.

So, remember the next time you go to utter that word or words that can be used interchangeably for something else. You know which ones I speak of - they're bad and words hurt. If you are unsure as to the substitution you may use for the r-word, get a dictionary. Or, you can refer to this handy little picture I've been posting on Facebook. It's available as a poster! Hey, poster and thesaurus in one!


March 6 is Spread the Word to End the Word Day. Please, click here to sign the pledge to help end the use of the r-word. No, I'm not enough of a dreamer to think that this will actually end this awful word. But I'm enough of one to hope that this movement will eventually catch on and help weed out jerks. Tell a friend. Hey, tell five.

Monday, March 4, 2013

Different Autism Experiences And Why They Are Okay

*This post, like all on my blog, is written from a parent's perspective. It is not meant to infatilize Autism because parenting Autism is the primary perspective that I have.

I used to believe that motherhood, or parenthood, would be the great equalizer. The wonderful, hold that baby in your arms, end all, be all, equalizer which would end high school-eque cliquey divisions. I was wrong. With parenting comes more divisions such as breast versus bottle, co-sleeping versus crib sleeping, attachment parenting versus detachment (still have not figured this one out five years after my last baby), etc. There are, apparently, a lot of things which people can argue on how to be "the best" in the parenting game.

Then came Autism. Or rather, first came the signs of Autism, the ridicule of our parenting skills, the ridicule of our child (both are still occurring), and then the Autism diagnosis. "Finally," we thought, "a place with answers and a community." But I, and we, have been wrong before.

A dear friend of mine is fond of saying, "their Autism experience isn't my experience and that's okay." I've adapted this to my own way of thinking because it's so true.

For instance, we parents in the Autism community have a way of paying backhanded compliments to each other. Things like, "Oh, you're SO lucky he/she does that!" Yes, we might be lucky, but things like that reek of condescension, especially if it's related to verbal abilities. Your Autism experience is not identical to my Autism experience, but you know what? That's okay!

I do not feel that because Morgan is mainstreamed with a ton of supports that he is any less autistic than another child who is in a resource room or an Autism school. Yet, I've been attacked on message boards for not "properly" seeking out an education for my son. Just because someone feels that the best possible education for their child is different than my child's does not mean that I am doing something wrong. Their Autism is different than my Autism and that is okay.

A gluten free and casein free diet may work for some people who have stomach problems or allergies to those things. Guess what? Morgan does not have those issues and therefore did not benefit from going GF/CF. If this works for you, great. This is your experience and that's wonderful, but it is not mine.

I've been attacked for vaccinating both of my children (this happens outside of the Autism community, too). I have serious issues with this. I, personally, don't believe that vaccinations caused Morgan's Autism. However, I wouldn't outright attack someone else for believing that their child's Autism was caused by a biomedical issue. I do not like getting into debates with people who believe that vaccinations are responsible for their children's Autism because I feel as if no matter what I say, I'm wrong. Not all anti-vax people are this way, but I still steer clear of vax debates. Their Autism experience is not mine. That is okay.

My son has poor fine motor skills, but we have seen improvement with OT. If this does not apply to your child in either direction, that's fine. This is my Autism experience.

My son has zero feeding issues. I'm genuinely sympathetic if your child does. Honestly. My NT son refuses to eat half of the food I put in front of him, so while I cannot possibly understand food related sensory problems, I can at least empathize with how frustrating this scenario can be. However, if you write to me and ask me if my son has food problems, and I reply "no," please save the attacks. This is not our Autism, and this okay.

I've been spoken to with sarcasm because my son is toilet trained. I'm still taken aback by this. I have nothing but empathy for those parents whose children - no matter the age - are not toilet trained. However, I am not particularly comfortable discussing this either privately or publicly. Again, not my Autism.

Morgan has some self care issues. If your child does not, more power to you. This is our Autism.

Morgan has seizure problems, though they are not severe. I do not put us in the seizure bracket of things because I know how much worse things could be. I have seizures and they can scary, no other word for them. This is our Autism, if it is not yours, that is okay.

My son, identifies as - ugh, I hate labels, but for the sake of this blog.. - HF Autistic, but is not, in fact, considered a savant. I'm thrilled for you if your child or someone you know identifies as such.  However, this is not my Autism experience. If you are a NT reading this, just stop asking parents of Austic children if our children are savants. Or telling us that our children are secretly "brilliant." Any one of us who have had to go through the process of testing our children's IQs and been made to feel like crap do not want to hear this. You are not making us feel better, you are being condescending. 

 If you have great Autism related insurance for your child, my hat's off to you. If you have never had to battle an insurance company, please tell me your secret! This is honest to God not my, or more than half of the community's experience, so please share. Please, for the love of all that is holy, don't put yourself on a pedestal and act as if parents, advocates, or whatever you want to call us who are seeking out a way to pay for our children's supports/therapies are lesser than you. Some of us are going deeply into debt, losing homes, and, in general, flipping out and wondering how to provide basic services for our children. If this is not your Autism experience, just keep it to yourself. This is one area where I'm not willing to be nice. I think that I would be willing to sell my soul in order for each Autist to be provided with services they need. End of story.

I do not use chelation, bleach enemas, hyperbearic chambers, and a host of other things that some use to "cure" Autism... I don't support any of those things, or things related to them. If you do, sorry, this isn't the blog for you. Not to be rude, but do a bit of reading through my blog, or look at the pages I support to the right; none of them support these things either. This is pretty much another area that I'm not willing to debate. Not our Autism, not on my blog, not on my page, either. Pestering me about them will get you nowhere. Thanks.

Not everyone will agree with me when I say that I seek to provide life skills, coping mechanisms, and yes, some therapies, for my kid and not "cure" his Autism. I want what I feel is best for Morgan and to me, that is to not make him feel as if he is "wrong" for being Autistic. I don't expect his Autism to go away or be miraculously cured so therefore, I do not seek a cure. However, though I snark at groups of people seeking said cures in private (it seems a little unreal), I try to not do it here (okay, so I just did it) on this blog or on my page. Yes, you can read through this blog and find places where I am/was mad at Autism, but part of being a parent is being a hypocrite. At least this is true for this parent.

We Autism parents take enough grief from society in how our children act, how people perceive us as parents, and how people view our children in general. Why is it we feel the need to attack each other? Is it jealousy? Spite? Yes, I am jealous, at times, of parents of NT children, though I have an NT child. I am jealous that those NT children do not appear to having learning difficulties, speech delays, fine motor skill problems, etc. I'm jealous that those children, and even my own NT child, will have experiences which Morgan will not. Sometimes, in my lowest points, I will rail privately and cry. Okay, maybe I do that on Facebook, too. But I don't attack other parents, at least I try to not attack other parents, especially not other special needs parents. They cannot help their child's neurology anymore than I can help Morgan's. They cannot help their child's ability to verbalize or not, toilet or not, etc. Attacking or crying about this does not help.

Is this a projection of our own fears of not doing something right? I cannot say that I have never privately nor publicly questioned someone's approach to parenting an Autistic child, or a NT child for that matter. I think that this is a natural part of being a parent, or even being human.

Part of life is to have differing opinions. Part of being in a community is to support each other, isn't it? The attacking within the Autism community really makes me wonder, at times, how much of a community we have.