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?

I know the perpetual child, it is not mine

*contains cursing, sarcasm

A lot of hell gets raised within the Autism community (and for a great reason) that Autism isn't a child only diagnosis, should not be discussed as such, should not be promoted by charities/organizations/parents/politicians/etc as such and moreover, that Autism never, ever, EVER goes away. Yet, people, neurotypical people, seem to be fine with discussing Autism as if this is only something that "afflicts" children. So then, what happens to Autistic children? Do they, as some recent -and panned- reports suggest "grow out" of Autism? Um, no, no they don't. If Autistic children did grow out of Autism, then I doubt that there would be so damned many Autistic adults running around the planet and writing so many blogs, two of which are pinned to the right over there. >>>

I think I know why neurotypicals like to promote Autism as a child-based "disorder" and that's because it looks more tragic and therefore stands to gain more attention, more money for organizations, etc. I don't get it, but it makes sense in only that fashion. Yet, it discredits all of the adult Autists I know. This thinking discredits all of the adult Autists, period.

However, that's not what this post is really about. No, this post is about something that is really, truly bothering me and doesn't have so much to do about Autism.

This post is about something which must be stopped because it is the true epidemic, not Autism.

I have found the perpetual children hiding in society. They are in our midst. You might even know one. Or two. Hell, you might know several dozen if you're truly unlucky.

Perhaps upon first or twentieth or, God forbid, one millionth, glance the perpetual child seems fun and always has something loosely planned. That plan is always something better that what you yourself could come up with. The perpetual child may not appear to have a job, yet always has money. This does not make the PC (sorry, that was getting to be a pain to write) wealthy by any means. The PC might seem like your friend and will always be surrounded by people. The PC will be the wittiest person you meet. The PC might take place in environmentally friendly activities or profess a love of organic farming; these things seem "cool" and gives the PC rights to wear witty and chemically faded shirts proclaiming him/her as the crunchy granola type.

The PC must love beer. That beer must be better than yours, always. Same goes for any other alcohol choices. The PC is going to be snarky. Snarkier than me snarky- this is saying something, people.

So, what is "wrong" with the PC? Well, on first, twentieth, or millionth glance, nothing really. However, then you really get to know the PC. Maybe it's a feeling that tips you off. Maybe it's when you cross that person. Perhaps the PC doesn't get his/her way and, like a child, pitches a tantrum- which they often and always will. That's when you get to dissect everything.

The reason why everything is always loosely planned? Something better might come up. You can't come up with something better because likely, they ripped it off from a professional or Pinterest.

The money? Parents. This is pathetic especially if the PC is over college age. The circle of friends? That is ever evolving due to the PC not wanting people to catch on to his/her truest of true nature, this could be dangerous and would thus end any and all friendships. You know, people talk.  God forbid if you have a child who is in some way "less better" than their child, because you will hear about it in the form of subtle digs... though you'll never be completely sure- you'll always just be a bit paranoid.

The witty remarks? Double edged sword which goes along with the snark. Be careful of anything that PC says to you. Likely or not, it's an insult disguised behind a compliment.

Organic farming/environmentally friendly? See Pinterest comment. For the beer remark, also see Pinterest comment.

The PC actually leads a shell of a life. Those the PC seems to have it all, he or she does not. The PC lacks more than the most basic of social skills and graces. The PC might be highly educated, but incredibly stupid for, if he or she were really smart, he or she would know what matters most in life is being loved for who you are and not for how others perceive you. The PC does not allow anyone to scratch the surface of his or her existence because that would be allowing someone too close, too deep. The PC is, without you really knowing it, the most shallow and lonely person you know. Also, the PC's life expectancy might run as short as 40 years or as long as 90, but always will end lonely and ostracized.


Why do I choose to write about this? Because it hit me not so long ago and keeps hitting me that some of the very people who are supposed to be our closest allies are, unfortunately, the furthest things from that. They are the real perpetual children in the world.

Thank God my son and thousands like him are growing up every day. Hey, maybe that therapy is giving him a jump start on life skills!

Just imagine

Editor's note: This is going to contain some swearing and is going to be lengthy, guaranteed. This is painful for me to write about and more than a bit of humility has to go into it. Please understand that ignorance, even when applied carefully, can mask anything. However, even when one is wearing a mask, one knows that mask is just what it is: a mask. Please also understand, I'm giving a very watered down version of events that have happened.

I beat myself up regularly. You see, my son, Morgan, wasn't diagnosed with autism until the summer of 2010. I've known my son to be autistic since 2007, at the very earliest remembrances. So, why the long wait? Lack of services? Please, don't be so quick to judge me. I write this only to get it out of my system and to put it forth as my own "come to Jesus" meeting... with myself and whomever is reading this.

Morgan was born a big baby- 10.5lbs. Looking back, I can see where, from the first, there were clear signs of autism. Morgan rocked as a baby. As in, the night we brought him home from the hospital, I was afraid to put him in the cute cradle because the damned thing was tippy and the child kept mysteriously flipping himself over. NOT KIDDING. I thought it was because of something I was doing. Maybe it was, but my son never stopped moving much, even while sleeping.

He never liked to sleep on his back (anti tummy people, LAY OFF). In fact, by the time Morgan was two months old, he'd completely rolled over and refused to sleep on anything but his tummy. Again, I thought I was doing something wrong.

Morgan began sleeping through the night at three or five months, except for a feeding. "Great, I thought, I can sleep!" Except I really didn't. I remember feeling puzzled as to why my baby woke up in the morning and would lie in his crib and just stare at things- for minutes or hours, if I let him.

When Morgan was seven months old, he was crawling everywhere. Except he still enjoyed being on all four and rocking back and forth.

When he was walking at nine months, he took a screw driver and disassembled every single interior door knob in our condo. Yeah, good times!

We thought we had a genius. We thought our baby was Einstein. He was doing things early. Things like crawling, walking, puzzles, those shape sorters (though I ignored that he had a hard time with getting the cubes into the actual shapes)... then, hand, foot, and mouth disease struck us. More to the point, a 105* fever struck Morgan.

It was right before his second birthday. The fever stayed above 104.5* for too long. Hospitals were too far away in either direction to matter. I did what I knew to do- Motrin, Tylenol, and a room temp bath. The temp dropped lower, but not low enough. Morgan's temp never went below 104 for 30 agonizing minutes. Finally, it lowered itself to 103*. And my son slept. At the pediatrician's the next morning, it was back down toward normal. It was the last time I'd be in a doctor's office in SC and think "normal" ever again with my son.

You see, we had Morgan in a private day care. A wonderful place! I dropped him off one day, about three months after the fever. I'd noticed his words seemed to have slowed down, but he'd picked up a new one, a curse word. I warned them and they asked "Morgan can speak?!" That feeling I'd had in my gut started to blow up. He'd gone there for nearly six months by then and they'd never heard him say more than "bye." I went home and cried.

About this time I noticed that the tantrums that are supposed to be common at that age were explosive. Noises really freaked him out. He'd gone from calling me "Mommy" to "Ma...Ma."  My husband and I estimated that he'd gone from a 60 word vocabulary to 4. Four words. "Mama," "dada," "car," and "kiki" for cat.

That Christmas, we were at my mom's in Florida and Morgan was screaming over going to bed. He'd been just... bad... all day. I was past a breaking point. I remember sitting on the couch and looking at my mom and my bonus dad and saying, "I don't know if it's me or him! It's like he's a bad seed! I'm doing what I know to do and nothing right is coming from it!" I was lost.

So began what we knew of autism, though we couldn't get a diagnosis, but still, we knew.  We got our son into speech therapy. The speech therapist... God, I loved her and hated her. She said everything I knew I should be hearing and everything I didn't want to hear. I was selfish, okay? I wanted my "perfect" child, even though I couldn't see him standing right there in front of me. Morgan and I did a lot of crying in those days. Him more than me, obviously. Family and friends thought, if we just spanked our kid, he would behave. If we spanked him, they thought, he wouldn't freak out over loud noises. Or paper ripping. Or garage doors. Or trick-or-treating. Morgan kept playing with trains and cars. And flapping. And rocking.

In the meantime, we welcomed Bailey into the mix. I was scared. I didn't know about this autism thing. I didn't know if Bay could have it. I didn't want it in our lives because I was afraid of it.

The ST kept saying that Morgan lacked imaginative play. Hmmm, well, he lined up cars perfectly. Ah-ha! I thought, he was playing "traffic." He lack "modeling behavior," practiced "echolalia," and a host of catch phrases that in that past five years, I've grown uses to as autism related jargon.

However, it couldn't be autism because the state of SC wait-listed my son. For over 18 months. This is what private insurance looks like, folks. Before autism insurance reform, anyways. It takes a while for that sort of thing to be cemented.

In the meantime, I had friends help me out. Great friends! I didn't completely realize it, but they had me doing ABA on my own with Morgan. I took everything the ST was doing for 30 minutes a week, twice a month (it's all we qualified for) and replicated it at home 5 days a week, at least 6 hours a day. I figured out that flashcards could double as PECS, I made my own version of social stories. I read every single fucking thing about autism I could get my hands on. Sensory play. Sensory Aversion. Nonverbal Communication. GFCF diets (yeah, not happening again). PECS. Learning to bide our time. Learning to count down on a wait list that wasn't getting shorter. Watching our son be left out of kids playing on the playgrounds. Hearing him be called a "retard." I cried. I yelled at people. Morgan kept playing with trains and cars.

The miracle happened over time.. Morgan talked. I mean, he talked. Not just echolalia. But sentences. They were odd, most were scripted, but all were beautiful. But still, the meltdowns continued. But still, potty training took forever. But still, Morgan kept rolling trains and cars back and forth, back and forth. But still, family members and friends thought we just needed to discipline our child better. 

 But still, it wasn't autism.

We moved to Tennessee when Morgan was four and a half, too old for TEIS (Tennessee Early Intervention Services). We allowed time for him (and us) to settle and try to be "normal." What a laugh. That was when, we learned, that "normal" was just a setting on the dryer.

We sent Morgan to a Christian-based preK. First day, the teacher, now a friend of mine, told me sternly, "Your son wrote like THIS. THIS is the level I expect out of my students!"  Scared the hell out of me! I explained to her that, honestly, we'd been so focused on getting him to talk that we hadn't spent a lot of time on writing. We were sending him to preK for that. The next day, Morgan got in trouble for "sitting on, frightening, and LICKING" students. That would continue. Well, SHIT.

This continued, but Morgan eventually learned to write his name. His social skills? Well... he didn't lick so much? He did get an award for best manners. Echolalia RULES for learning manners!! Please understand, this is sarcasm.

But still, there was no play dates. Morgan didn't interactively play. He was content to play with cars and trains. Unless it was his brother, there was very little interaction with other children. I would sometimes see him look longingly, I thought, at the other kids playing that summer before kindergarten. I kept waiting for him to jump in. He never did. I even facilitated play between him and some kids quite a few times. The other kids were mean, I took my sons home and cried.

During this time, I brought up ASD to my pediatrician over and over. He kept telling me, "Jessi, ain't nothin' wrong with that boy! He's gonna play football! Look at how big he is!"  This was usually over my son screaming, "No doctor, no doctor, no doctor!" Or calling all medical staff doctors because, in his mind, if you worked in a medical office, you must be a doctor. That summer, it took me, five nurses, and a technician to hold Morgan down to have blood drawn. He was five.

Kindergarten would have been harder, I think, had it not been for Morgan's wonderful teacher, Mrs. V. She was, and is to this day, a teacher who has a genuine passion for her students. When we were called to the "horrible meeting" to discuss why my son didn't socialize, she sat next to us, not "them." When the county shrink got out of hand, Mrs. V was wise and ended the meeting for us. She made Morgan feel secure. She pointed out to me were Morgan's strengths were before she ever pointed out his weaknesses. She was always quick to say that she had to grade him based on state protocols. But she watched. She listened.

But still, Morgan played with trains and cars. But still, my pediatrician insisted nothing was "wrong."

I lost all patience that summer after kindergarten. I realized one day that a great majority of what my son was doing was scripted, by rote, by memory, whatever you want to call it. By writing this down, it makes it even more shameful to me. I failed my son.

The day after I and my husband finally, finally said "Screw the professionals, this IS autism!"  I made an appointment at Morgan's pediatrician. He finally said, that yes, I had made my point. But still, it could be something else. He ran tests for everything. Fragile X was the scarier and one of the most expensive ones. He referred us to a developmental pediatrician whose specialty, it seems, is to not let a single child out of his practice without a diagnosis- bad form, by the way. I already knew what Morgan's would be. He spent five minutes with my son after his nurse had spent two hours and gave us a diagnosis of high functioning to moderate functioning autism, possibly Aspergers. I clung to Aspergers like an idiot thinking, "this isn't real autism, right?"

Before a month was out, I was an "expert" on autism. I'd spent every waking moment that I could reading and reading more. I knew the IDEA act cold before our first meeting with the staff at Morgan's school. Morgan had his first IEP. He had services through the school. Finally, my son was going to learn coping skills and learning skills from someone other than me. Not that I'm complaining, but when you've been stressing yourself to the gills for years and have illnesses of your own, autism wears you down. A diagnosis is a relief, to an extent.

We were schooled in what it is to have private insurance deny you in a state without autism insurance reform- twice, really. You see, our insurance was able to deny us basic "rehabilitative services" for our son because we couldn't prove that any of the services weren't "restorative in nature at the onset of therapy." We were shocked. We thought that the hardest part had been gone through, the diagnosis. Instead, we were now fighting the insurance company AND the school on a weekly basis.



This brings me to today. If you're still reading, thank you. I know this was long. The reason I wrote this is to display the holes in some states systems. Autism insurance is important. Services are important. Had the full extent of Ryan's Law been ratified when we lived in SC, Morgan would have been diagnosed and services would have been obtained- when he was 4. Instead, Ryan's Law does not include self-funded insurers (my husband's company). We switched insurance companies when he transferred jobs to Tennessee of that year.

In Tennessee there aren't real autism insurance reform laws. There is the The Autism Equity Act of 2006. It states that children up to the age of 12, with an autism diagnosis, must be covered for speech and occupational therapy (OT). However, that's usually covered/offered in schools from what we could see, it's what we were told we could get- after our private insurance flat out denied us. OT and speech aren't the end all, be alls. Thousands of children are discriminated against every single day, just as my son was. Plus, there is a serious lack of providers (non quacks) in eastern Tennessee. This post would have been five times longer if I had railed against insurance companies. Just throwing this out there, but where there is no or little autism insurance, there is bound to be very few providers of autism related therapies. Like Occupational Therapy. Developmental psychiatrists. Or Applied Behavioral Analysis (ABA). Take your pick.

Many of you reading this either know me personally or are blogger friends of mine. Imagine going through what my family went through. Imagine not being able to obtain a diagnosis and then services for your child due to lack of knowledge in the medical community. Imagine it. Now, get mad. I still am. We moved across the south in order for our son to have a better life, with insurance. This month, he qualifies for state residency and his autism Medicaid waiver. My husband's work is not self-funded and is under 50 employees, so we're good.

Morgan will be able to gain coping skills that will, hopefully, enable him to live an independent life one day. One day, maybe I won't mentally flog myself for him not being diagnosed at age three instead of age six. One day, maybe he'll go to college. But today, I'm still mad and I still cry. Because it wasn't right.

We let him BE

Editor's note: I probably don't parent like you parent and that's okay. I probably am not raising my Autist child in a fashion that you can relate to or appreciate, that's also okay. This post might offend some people because they might see me placing a joyful childhood above the rigors of constant therapy. This is also okay. I just want what I feel is the best for my child. Everyone's opinions differ.

People, meaning neurotypical people, will say or ask the silliest things to me. "I couldn't do what you do." Parent my kids? "How do you do this?" What? Parent my child? He's only an Autist and I'm only a proud parent. This is our parenting of Morgan then and now.

I believe that my husband and I are parents with good intentions. That we, as parents, are allowing our son to be the individual Autist he is. We love our son and, at the end of the day, just want our son to be happy. We believe that he is or else he wouldn't laugh and want to dance so much. He dances more than he cries now. This wasn't the way things were not too long ago. Before we were schooled in Morganese. Before we learned about "our autism."

You see, I firmly believe that each and every Autist, like each and every neurotypical, is as much of an individual as are snowflakes. Hokey and novel concept, I know. Shocking for some, even, I realize, but please, be patient with me.

I was once one of those neurotypicals that read and believed the crap out there that seems to express a cookie cutter definition of autism. Scratch that, I don't know if I believed it, because I wasn't seeing it personally at home or in the Autists I began to talk with, see, or hear about. I was so damned ignorant to what was in front of me and so I stopped and listened and looked and took notes.


Morgan stims and has tics. I wrongly thought I should shut those down completely. Not just divert from those that could seriously injure him or cause infection, like his dermatilliomania, but his rocking, humming, peeping like Thomas the Tank, and others that don't cause a damned bit of harm. In school, in order to not disturb others, I encourage his teacher to put Velcro strips under his desk for a sensory fulfillment and it's worked. But when he's home? My son is one big "if you're happy/sad/mad/bored and you know it, flap your hands" and I don't do anything to discourage it. He's not hurting anyone. He's happier now that we've done this.

Morgan loves to script his Thomas the Tank stories. I mean loves. Do I get tired of hearing them? Oh, yes. However, when that little boy asks me if he can tell me a story, I say usually yes. I say yes because not too long ago, he couldn't or wouldn't say more than a couple of words as a sentence. What parent would say no to this? Granted, sometimes I schedule a time for said stories, and I also head him off at the pass when he breaks into one spontaneously as an answer to a question which is unrelated (diversion), but I still just love to hear him talk.

Morgan, as a younger child, would have meltdowns that were, from what I read in psych, textbook typical of an autistic child. They could last for hours. We're talking screaming, kicking, biting... As he's grown older, he's cried. Sobbed, really. I recognize all of this now as his frustration of not being able to verbally express emotions. When he is able to, he doesn't cry for as lengthy periods of time. I would like to say that in this new year, we've had fewer tears, but it's only January. Morgan is a sensitive kid. So, we have tears and we live with it. We also work out coping strategies, it's what we do in order to teach our son how to navigate grade school and, for the future, the world.

This is our strategy now: We let him dance, sing, script, play with trains, and BE.

We're trying to not get bogged down in the therapies, the IEP (we just make sure it's being followed), and the "what ifs" in life. The thing is, we've been stressed out for most of his young life with therapy (with the exception of one year, he's been in at least speech since he was nearly three), with the "what ifs" of life and for the last two years, I've freaked out regularly about IEP violations.

This year, the IEP was fairly easy. No tears on my part and adherence to everything I've asked for from what I can see.

We've worried about what he might be missing out on and that's never going to go away. I worry about his lack of a circle of friends, but honestly, I'd rather him have one great friend than five so-so friends. I try not to worry about what could lay in his future because my child is full of surprises. I try to presume competence. It's what all parents, no matter their child's neurology, should do.

We're focusing on what we have as parents and what he has as an Autist child. We're raising him to be proud of his Autism, that it's nothing to be ashamed of, the same as race or gender. At the end of the day, we just try to let him BE.

Happy Mardi Gras from Morgan!

But He Doesn't "Look" Autistic...

Editor's note: Some of the language and snark in this post may offend, and honestly, I hope it does. It is never my intention for my son to "pass" in society as a neurotypical child or adult, unless he expresses to me that is what he wants. However, all of this comes from my heart and I hope that each of the five people reading this gets something out of it. You know what they say, "If one person tells five, and those five tell five..."


 I am truly hoping that this is the year of Autism Acceptance. That this is the year where people around the country, because, let's face it, the world might be too much to hope for, will accept autistic adults and children for who they are - Autists. Yes, I realize that I am probably being silly, dreaming too big, but what I am really wanting is to never hear "but he doesn't 'look' autistic" uttered from another person's lips ever again. Or at least this year.

You see, sometimes, when we meet new people, they are often confused by this giant kiddo of mine. It goes kind of like this:
They ask him, "How are you?"
He usually will reply something along the lines of, "My name is Morgan."
They will shoot me a puzzled look and try again. "No, your mommy told me that! I asked, how are you?"
Morgan: "I'm in second grade. I like pizza. Wanna hear a story? It was a dark and stormy night on the Island of Sodor...'


I, out of my own preservation of sanity (don't judge, if you allow one Island of Sodor story, you're in for ALL of them), usually tell Morgan "thank you" and have him run along to play. Then I tell the new person, who is usually looking at me askance, that Morgan has autism. I oftentimes get anything from "I saw Rain Man, the Temple Grandin movie, Mozart and the Whale, etc" "I know someone with autism!" or, the worst one, "but he doesn't look autistic." Sigh.

Why? Why say that? Do Autists have tattoos and crossed eyes that give them away? No, no they do not.

Lining things up, stereotyped behavior

Autism, while the neurology does present with different "signs" such as self stimulating behaviors, awkward speech or even no speech, lack of eye contact, and a host of stereotyped behaviors (such of lack of affection, which my son defies- he licks you, hugs you, and kisses), does not really have "bell ringer" symptoms. Unless you're there. Unless you're in the thick of it. Unless you're one of us, a parent with an autistic child. Unless you're an Autist yourself. Or, in some cases, a health care professional without a stick up your behind.


Then, after that horrible question, oftentimes there comes the most horrible for me, at least: "Do you ever think he'll grow out of it? Or be cured? Or pass as normal?"

First, just what the hell is normal? I know, I know, a setting on the dryer. But seriously, have any one of you ever met someone, that after scratching the surface of their existence, you could deem as this "normal" thing? I can't say that I have.

Cured? Yeah, I'm going to leave that one alone or I'll blow a gasket. Just note that offends most Austists and a lot of parents, okay?

On "passing," that I will leave up to Morgan. He's 100% autistic and proud to be so, especially after reading a wonderful book by Landon Bryce, "I Love Being My Own Autistic Self." According to his teacher, he tells his class daily that he's autistic. I love that. To me, this indicates that although he might not know exactly what autism is, he knows that autism is not to be feared, because he is autistic. I want my children to love who they are; it would not matter if they were gay, black, or whatever. To me, as a parent, you teach love and acceptance, not to hate something that you cannot control, such as your neurology.

Reading "I Love Being My Own Autistic Self

I've had arguments with family and friends on if we're doing the right thing in telling our son about who he is. Or, as they phrased it "what." Well, he isn't a lab specimen, he's a boy, an Autistic boy. I cannot separate the Autism from the boy, nor do I want to. To take away Morgan's Autism would take away the quirky little boy I love so damned much. Some of my family members don't believe in his diagnosis. That's okay, they don't live our life. They don't see the struggles, the outbursts (few and far between, but three last week), the horrendous IEP meetings, the bigotry, the stares, the tears- ours and Morgan's, the worries, and then, the joy over the smallest of milestones and when someone just accepts him.

Milestone: Cutting soft foods, after a prompt

Milestone: FINALLY playing with Legos bigger than Duplos

It's okay with me if my son never "passes" as neurotypical. If those that I see claiming to be that way are what he needs to personify, I'll encourage him to "act autistic" as much as humanly possible. Yes, that was sarcasm. I'm not sure how to "act autistic" any more than how to "look autistic."

This is what Autism looks like

This is also what Autism looks like, in our house

Year End Stream of...Crap

Today wasn't a great day. For starters, I awoke to find what I thought was chocolate covered cherries by my Christmas tree. I even picked one up. Guess what? It was dog crap. Yep, that's how my super early morning started- with dog crap. Oh well, I thought.

Then, things just went... blah. I couldn't set anything to rights. So, therefore, I decided to hit a mental and physical (I was in pain due to an RA and lupus flare) "reset button." It lasted all of 20 minutes, but you know what my sweet moment was? My sweet, sweet, adorable, oldest child coming in and giving me "night, night" kisses. It was lovely. He thought I needed it. See there, Mr. Baron Cohen? That's called EMPATHY, ya jerk.

While I was laying in bed, thinking of all I needed to do, it occurred to me that I needed and wanted to write. I want to write more in the new year because I enjoy the hell out of it, even if five people read this thing. I ran through my mind all that has happened this year and believe me, a lot has. It would take a novella to describe all that has happened directly to me, but this is about Morgan and my life with him. Actually, I've written a lot about Morgan's major things lately, but I wanted to touch on the milestones again or the ones I've missed. So, here goes...

Morgan, this year, has learned to read! He cracks us up while we drive down the street by reading signs out loud. Sometimes, since we live outside of New Orleans, those signs aren't exactly "kosher," but we still laugh because he's reading. I love that.

We moved this year and Morgan, while he misses TN, loves his new home. It dawned on me not even two hours ago, that in the six months we've lived here, we've had more kids come over to play and vice versa with Morgan than we've EVER had in his whole little life. That's sad, but I'm wanting to celebrate it more. It means that the wonderful people we're surrounding ourselves with (if you're reading this, Mrs. S and Ms. A, especially!!!) are truly great people and that they don't judge our child for carrying the "A-card" like a disease or for being different. It helps that these two particular women I've mentioned are both funny as hell and love Morgan.

Morgan loves his new school. I mean, really loves it. He loves his teacher, has made friends, loves his paras (aides), and has buddied up to a male figure that "puts him to work" to make him feel special. His school is a great place and though we're still working out kinks, he's doing really well.

He's cutting his own food!

He put together his own Lego truck!!! I know, I know, I did that whole post about "what not to buy my autistic child," but my hubby and I caved and bought the kiddos the 405 piece tub of catch in the feet in the middle of the night Legos for Christmas. They begged, okay? Then, the day after Christmas, Morgan startled me with this:


Morgan showing off his "lorry."



I am not saying that this year has been all roses, because it has not. My son has watched me be sick more than healthy at times. I have a disorder that made him think on a few occasions that I was DEAD- that sucks. He still tantrums, but not much.

What I'm choosing to highlight in this current climate of "panic about autism leading to psychotic behavior" (thanks, media!!), are our great moments. We're in a good place. We're happy. We're healthy. Morgan's in a safe and welcoming environment. And man, I'm damned proud of my child.



An Autism Wishlist

Dear Santa and the general public,

For Christmas, there are some things I would like for my son and the estimated 1 in 88 other people like him.

Understanding. I want for people to understand that autism doesn't mean that my son and other people like him are less. They are not unable to feel, they are not unable to function, they are not unable to think. They just do it differently than neurotypicals do. You know what? That's okay with me and it should be okay with other people, too.

Acceptance.  I want for my son to be accepted by his peers, not just his autistic peers (they parallel play just fine, thanks), but by the little boys and girls that you other neurotypicals are raising. I want for Morgan to be able to go to school and not get teased for his monotone voice, his vocal stims, other stims, or love of the demonic blue engine. I want for other autistic people to be able to gain acceptance in society by people looking at them as PEOPLE, not science experiments. Let me know if I'm wishing for the moon here.

Services. We're wasting precious time and money, I think, pushing for cures and looking for causes when we could be looking at the big picture- services. Teaching people (note that I keep putting this in italics?) on the spectrum life skills is important. Funding ABA (Applied Behavioral Analysis) is damned important, something that insurance companies all too often don't do and it's costing a lot of us somethings that we don't have- time and money.

If we're parents, we're freaking out wondering how our children are going to manage as adults in a very cruel world that will not accept our children. Because that world is not likely to change, as evidenced by some of the behaviors shown at the recent Congressional hearing on autism. Congressman Issa was good enough to call this hearing- the first in a decade, but some of his peers, some of the people who spoke, referred to autistic people as "burdens." My son is not a burden. However, paying through the nose for services and going deeply into debt for those services can be, yes.

Congressman Issa, thank you for showing that you care about us and about our people by heading that hearing and implying that there would be more in the future. There has to be. Services need to rendered. Our 1 in 88 can't wait any longer.

Just, please... Let's please, for once, get our crap together in the autism community and have a community! Please?

Warning, going into a rant now...

Why won't some of us <parents and lawmakers> listen to autistic people?! Some of us NTs listen to and applaud autistic self advocates such as Temple Grandin, Landon Bryce, Karla Fisher, etc., for what they have achieved not in spite of their autism, but because of it. When will people get that autism isn't this "burden" (borrowing a phrase here)at all times. I understand that the people I named are so called "high functioning" individuals, but what about other people that aren't? Don't their lives have value? Is there a run on life tickets if autism is caused by something in utero or by something in the environment? Does it really freaking matter?

I think what matters the most, if we are the parents of an autistic child or children, is finding the best way to help said autistic child or children through life and into adulthood. We have to love them. Not treat them like they are our cross to bear in life or society. Not treat autistic people as anything but human beings. Am I the only person getting that we are doing more to help with foreign aid than autism? Am I the only one that sees that helping Egypt's military since 1979 as compared to helping autistic people with healthcare might be wrong? Or am I the one that's wrong? 

**Also, it is incredibly offensive to call an autistic person a burden. I cannot repeat that enough. The burden lies in the way NT people think about autism.


So please, Santa, the general public, the five people reading this... please take some of this to heart. We have "stuff" we need to work on in our community.

Thank you,

Jessi

Sticks or stones?

The old saying, "sticks and stones may break my bones, but words will never harm me" was obviously thought up by an asshat parent trying to comfort their child.

Sticks and stones, while they leave there visible marks, have a way of traumatizing yet making someone angry in the NT and Autie world. But those marks fade, they always do, even if scarring occurs. I'm not saying that assault in any form is acceptable, but let's face it- most of us would probably rather take a literal slap than a verbal one. I would.

Morgan seemed "fuzzy" this afternoon. He was hyper- for him. He couldn't focus at all and was over emotional, even by autistic standards.

I had to run over to a neighbor's apartment to print something off for his homework and her son came running in to inform me that Morgan was crying, a LOT, because the kids wouldn't play a game of tag. The neighbor and I, being adults, just said, "play the dang game and be a big kid- set the good example!"

When I came out to the stairwell, the kids were all in a huddle around Morgan, chattering like magpies. I knew that would set him to crying. Well, he already was- a LOT. My "mommydar" went off. I knew something wasn't right.

B, a girl that has become Morgan's bestie lately, piped up that Morgan had been bullied by two boys at school today. God, I felt my heart just... squeeze. With all of the kids around us, I coaxed out what had been bugging him (three cheers for him even telling, I think he felt encouraged due to the other kids being there). Apparently, some little jerks named Z and let's call him B told Morgan that he's fat. "Lard ass" is the word Morgan later used. That is NOT a term I allow in my house. Derogatory terms referring to weight rank right  up their with gay slurs and racist terms.

After Morgan confided in the crowd, I pointed out that those morons aren't his friends and that he needs to stay away from them. Also, that everyone standing there IS his friend. The kids were very quick to chime in (they're super sweet, honest to goodness great kids!). Then, J, the comic in the group, raised his shirt, grabbed his tummy and shook it yelling "Morgan, THIS is fat!!" J does have a bit of chub. Funnily enough, he's the exact same size as Morgan, but six years older!

I think this has been going on for a while. Morgan has been making comments since last month about being fat. The child stands 5'1 and weighs 110lbs. He's a big kid! Overweight some, yes. But geez. HE TURNED DOWN CANDY TONIGHT, PEOPLE!

My point in all of this is this: I've been on a tirade lately against the word "retard." Begging, ordering, asking, etc., people on Facebook, Twitter, in my everyday life to just eliminate it for fear that (a) it'll reach Morgan's ears, (b) they need to get a flippin' thesaurus and another word, anyway and (c) why use it?

Don't people understand that words hurt? I know that I still sting every time I think of my former stepfather telling my mom that I was "fat as mud," "could be pretty if I laid off the food," and a zillion other things. I know that my sister still hurts from the godawful crap I said to her about her speech and gums (Sorry, Riah- I really do love you and you are a beautiful person... hate that I gave you that phobia about closed hands and spiders).

I lay awake some nights, like most parents and mentally replay my day. More than 80% of the time I can come up with something that I've said that will likely scar one of my kids. I'm ashamed as hell and yet, it's probably small beans compared to what other parents do to there kids. This is in no way excusing my own behavior. I've gone on tirades that would make Marilyn Manson blush.

I just want my 10 readers to ask themselves... would you prefer your child to be bullied for something they cannot help (like autism), be made fun of for their weight, or be physically hurt? Of those things, which do you think would hurt worse? If it has happened to you, what are your thoughts? 

Our Autism These Days

Since my last post, we've packed up the family and moved from Deliverance, TN, to the greater New Orleans area, LA. We. Love. It. Here. 

Morgan is not as ostracized here for his differences as he was in TN. Maybe it's because in the land of odd, he's not so damned odd. Or maybe it's because we're living in an apartment complex where a whole bunch of kids (some his age, some younger and some older) have embraced Morgan and protected him from the very few bullies that roam the complex.

In his class, he actually has four other auties around him! You know what that means? A para (paraprofessional) is in his classroom at all times giving the teacher - and the auties - much needed support. Morgan even gets his speech in class, thus not being singled out.

Morgan is HAPPY!

Best part about living in Louisiana? With six months of residency under our belts, Morgan will qualify for something that is nonexistent currently in TN- autism insurance! I commend my friends fighting for it still, but state senators there told my husband point blank that it would not happen, period. I hope that this will soon change, as many people would benefit from autism insurance reform.

This has been a great change for our family. My own outlook on autism has changed.. While I never really have, I don't want to cure my son. Or fix him. I want to help him succeed.

Some might ask why I don't support a cure... well, if I were to cure Morgan's autism, I would being "curing" my son of everything that I hold dear.  The things that I would do with away- such as his lack of friends, are what make him Morgan. And... He's the friendliest kid I've ever met, but society deems him "weird." So he takes things literally, talks too damned loud, and stims like crazy over things that I cannot possibly understand. So WHAT if he likes Thomas the flippin' Tank Engine (still) at the age of almost eight? WHO CARES? 

Why would I want to cure my sweet, caring (squash that not having empathy thing, people- my kid has it in spades!), quirky kid. We got lucky in a lot of way on this spectrum of ours. Morgan is verbal, in a Yoda sort of way. He's a whiz at math. He has an ear for music. He's just... different from how society wants him to be.

You know what? My view on autism has changed a helluva lot in the year. When I began this blog, I was mad as hell that someone had finally labeled my kid with something that I viewed as nearly a death sentence. I was so very ignorant and wrong. 

Autism, in so many ways, is a beautiful thing. I wish more people would see it as I do. Sure, sometimes I flip out and stay awake worrying, like a lot of autism parents, but not as much as I used to. There is no light at the end of the tunnel- yet. However, there are a lot of colors in my kaleidoscope. 

The Junior Advocate

As I've mentioned before, I worry- a lot. I worry about Morgan 24 hours a day, seven days a week. If I were to be given an extra hour in a day, I'd use it to worry even more. However, I'm proactive in my worrying sometimes. Some people call this crazy, I call this being an advocate.

I get the whole family in on this act, down to our toddler, Bailey, or Bay, for short. Bay is a real spark plug. He knows the basics of autism and Asperger's. People, who shall remain nameless (you know who are you are), think that I am over burdening a child that already has and is going to have the "heavy burden" of an older brother that is "different" to help guide through life. They think that I give my children too much information about autism and life in general. I call bullshit. That's right, I said bullshit. Allow me to enlighten.

Bay is an exceptionally bright four year old. He already can spot differences in how he operates from how his brother does (interactive play, imaginative play, dressing up, making up names for himself, appropriate answers to small talk, no stims). It saddens and frustrates him that his brother doesn't play with him like he wants Morgan to. It does the same for me and my husband. Tonight when it was brought up to me by Bay (for the millionth time, I might add), I decided to break it down and be deadly honest with my son.

You see, Bay is about to enter preK. He's nervous about the other kids being mean to him like some kids have already bullied his big brother (thank, bullies!). I told him, as bluntly as I could, that bullies, while they are everywhere, aren't as likely to bother him as they are Morgan. Bay doesn't do things "differently." He's neuro typical. The most he might get teased for is his slight speech impediment and ginger hair. Oh, and the kid loves pink and purple. But other than that, Bay's 100% neuro typical, all around American, boy.

I explained to Bailey that God makes all children special. I mean, really, really, really special. However, he made Morgan with an extra dash of special with his autism. Autism wired his brain differently and makes him see the world in a different way, takes away his ability to filter sounds, find patterns in things, notice things that other do not see, and most importantly, in a social way, it hinders Morgan's ability to act like other kids (in my case, I silently scream thank God when I go to the grocery store and observe other people's offspring). I told Bailey that one of Morgan's special talents include echolalia, which is how Morgan can spit out phrases of a movie or the actual whole movie when they're playing. However, I asked Bay if he's ever noticed that when someone asks Morgan a question, Morgan might answer with a movie phrase that makes no sense. Bay answered in the affirmative. That, I told Bay, is echolalia. That, I told him, is an ugly side of autism, according to the looks we get.

Another one of his brother's talents is building. Morgan loves to build- train sets only. This irritates Bay to no end since he wants to builds lots of things. I told Bay not to take that away from his brother by making Morgan feel wrong for that. Morgan already got teased, you see, for his love of Thomas the Train and all things train related at school and only at home and in his homeroom does he really get to express that love. Realization dawned on Bay. He'd been really mean a lot to his brother, without really realizing it. I've always told him "no teasing or hurting your brother."

As I explained to Bay that, because of things related to autism, Morgan has to be taken out of his regular classes for therapies and resource, something that Bay will never have to do, Bay looked sad. He asked, "but why? Why does Morgan have to do those things? Can't you tell them to let Morgan stay in classes?" I told him, "Baby, I signed papers saying that Morgan has to be there; those extras help your brother learn better. The classrooms are too loud and the other places are giving him skills so that he can be more independent one day." "But I won't have to do that?" "No Bay, you'll be a regular student, learning reading, writing, math, geography, and going to recess- when you're good and do your work."

Then the hardest part... Bay asked why his brother didn't want to play with him a lot. Morgan can usually manage maybe 15 minutes, tops. After that, he needs what I now recognize as a sensory break (soccer practice and games take some slick maneuvering). I've tried explaining it to Bay before, but he's either been too young or ignored me. I explained tonight in the school terms that although he wants to, Morgan can't take the overstimulation and the noise. It sends his brain into a tizzy and causes it to crash, like a computer. Bay got it. He asked what he could do to help his brother.... and that's when I explained about God making HIM with an extra dash of special, too.

As best as I could explain to a four year old, I laid out what I expected from my younger son. I told him that some day, he might feel like the older brother. He might feel like he is guiding his brother through life and that's okay. It might not feel fair, but that's why God gave him that extra dash of special. That dash is made up of compassion, love, and all good things. It is going to help him and Morgan. That when he sees his brother getting teased and Morgan's not understanding it, Bay is to stop it ("yeah, I'll stop those bad guys!"). That when we're in public places and he sees Morgan wandering, to hold his hand or to call out to him. When Morgan's needing space, give him space. That when someone asks, tell them, "My brother has autism, and you're issue is?" That might be wrong of me, but Bay already sees me doing all of this and is my own personal mynah bird, you think he's not going to copy me?

I pointed out to my younger son that Morgan wants lots of friends, and even has a few. He asked me, then, why didn't I have a lot of friends. Hmmm, I thought.... Well... I told him point blank that I'm very protective over him and his brother. That I can't take people being thoughtless of either of them and treating them like crap. Case in point, the "friend" that stupidly told me that she imagined shopping with Morgan must be like shopping with a two year old. She smiled as she said it. It was like being stabbed. He's one of the best behaved children I've ever met and sweet, to boot. I told Bay about that and he nodded and agreed that the former friend was, indeed, mean to him, too.

My point in all of this is that if your child on the spectrum has a sibling, it's never to early to turn that child into an advocate for their sib with autism- and the thousands of kids similar to them out there. Your NT child will one day grow up as all children do. Your child will hopefully be compassionate towards everyone they meet, but especially those in the special needs community. I hope that my own ginger haired younger child will see one of his classmates in gym, one that acts an awful lot like his brother and is getting teased, walk right up to that kid and announce, "Hey, you overstimulated? You want a friend? I'm your guy!"

I'm raising an advocate, not a jerk.

Love & the Aspie First Grader

Morgan had his first real Valentine's day, I think. It was great, for me because it's been a hallmark in a way. Morgan and I had our first real, stretched out day of conversations. Real, reciprocal conversations. It took a lot of effort, but some things clicked into place and it just worked.. and today, when he got his cards back, it was even better.

 It was the first time I picked out the type of cards that I knew he'd like - that had appropriate sayings that he would "get," for the most part. We sat down with a list of the children in his homeroom and suddenly, Morgan talked. He would see the name, repeat it and tell me all these funny little quips as he decided if a boy was a "U R Awesome!" or "Cool" (just a note, Morgan refused to hand out most of the "U Rock" cards because that made zero sense "A person can't be a rock, Mom, that's weird"). Every girl had to be either a "Be Mine" or a "U R Sweet" and the color coding meant something to him as he told me what was special about each one. Scientists say that Aspies/autistics aren't supposed to always notice the world around them, but I beg to differ with my exhibit A, Morgan.

He's never told me any of this stuff before because unless I ask a direct question, he cannot give me a direct answer. Like in the car today when I asked if handing out cards had been crazy, Morgan piped up "yep, but I did really well! I didn't mess up once, Mommy, I was a good boy and no one got the wrong card!" I didn't know that he'd been nervous about messing up because I hadn't thought to ask. Morgan wouldn't think to tell me.

He made sure to include his homeroom teacher in his cards, his vice principal, his resource teacher, his brother, his daddy, and me- all unprompted. Maybe it's because he's seen me make out cards so many times, but how else did he know to do this? I love getting a card, not picked out by his dad, addressed by Morgan and signed by Morgan because he at least knows it's what's supposed to happen on this day. He's picked up a social cue but at the same time, Morgan's always been one of the sweetest kids I've known- period.

The funniest moments in all of this? Morgan's spots of pure lack of filtration. On Saturday, he and I went grocery shopping together- a rare event. Morgan saw a child misbehaving horribly and the mom was saying, "I'll beat your butt when we get home!" Morgan being Morgan pipes up, "just do it already! Mom, that baby's a brat!" We would be walking down an aisle and he'd just be chattering away about whatever was catching his eye... We're working on that inner voice thing...

A little girl in his class gave him a sweet, hand drawn Valentine- with Thomas the Tank engine on it! She's his friend, obviously knows his love of the blue terror of the rails and my son tells me when, when I ask him what he said to thank her, that he told her she had "left off the coal car on accident." ugh... I'm hoping this girl just smiled like Morgan said she did.. we had to have another talk about that inner voice thing. Dating's going to be hell, I can tell.

Oh. and Morgan announcing to me that God, does indeed find him special. Yep, it's true because the Valentine Card that J- gave him says so. And that card has bunnies and a kitty, all curled up to show diversity, I'm guessing. Best card ever.

This is not a happy post

Sometimes I feel like I suffer from multiple personality disorder. One side of me wants people to recognize Morgan as having Asperger's/autism (trying to get used to saying just autism in case the changes to the DSM's definition go through- thanks for screwing over THOUSANDS, asshats!) and accept him as just a boy- with some different abilities. One other side of me wants people to just think that Morgan's a neurotypical child that's slightly quirky; he just likes to say weird things, lick around his mouth repetitively, find patterns in things, LOVES Thomas the flippin' Tank Engine, and exhibits signs of autism, but ASD isn't the case- he's just quirky and quirky is GREAT! Bullshit of me, huh?

I have these imaginary steel bands wrapped around my rib cage that make it difficult to breathe or relax. Whenever I get stressed/panic/anxious, somehow those bands tighten just a bit, sometimes more.  I stay stressed- constantly- and I'm prone to anxiety attacks in some crowded places or when I'm well, stressed out. The reason for some of my anxiety or stress? Well, it's hard to put my finger on it...

• What if Morgan never reaches grade level in reading? What if he falls through the cracks?
• What if I'm not a good mom? Am I missing something? I must because my kid didn't get a diagnosis until he was SEVEN and I KNEW something was wrong, but I let other people tell me otherwise- including my damned pediatrician.
• What about Bay? I have him at home during the day and not in a preK program because, to be blunt, we can't friggin afford it. I mean, I can teach him, right? Those workbooks and worksheets will prep him for school, right? Playdates with other kids and outings to the park are okay, right, since I'm socializing him? Quality time with me is important, right? If I get him in speech soon for that slight impediment, he'll be okay and I'll feel like people aren't looking at him with suspicion as if "your brother's autistic/weird, what' wrong with you," right?
• What if Morgan never meets a girl that looks past any of this crap that can be autism? What if he never gets married? I know this is a while away, but I worry about it, though I have no control over it.
• My insurance has approved Morgan's therapy finally, but who exactly is right for him? When are we supposed to take him? In the afternoons? During school times? And how in the hell are we supposed to pay $40 (technically, it'll be more like $60- $20 for gas each time) a pop when we worry about splurging on dinner out? 
• I just bought new shoes yesterday, dressy shoes. Shoes I technically needed (okay, I wanted them- so shoot me for wanting pretty red heels) to attend a function. I was excited about them, they're perfect and I got them on sale. Know what woke me up at 3am? The knowledge that the money I spent on those shoes could have gone to Morgan's therapy fund.
• Am I doing enough for Morgan at his school? Probably no on that one. I don't volunteer and frankly don't plan on it unless it's something for his homeroom class.
• That mom of the boy from Morgan's class we ran into yesterday, the one that Morgan really likes and always talks about, she took my number after the kids played at Chik-Fil-A. She said she would love for Morgan to come over, was she for real? I mean, really? Don't toy with my emotions, lady.
• Does Morgan know how proud of him I am? I tell him, but when I push him to try harder, does he realize it's to help him reach his fullest potential? To get him out of a lower level class?
• Why can't my child read a calendar? He 'learned' how to in math class... he can't do it though... which brings me to my next worry...
• Is Morgan cheating in school? He admitted that he looks at other kids' papers sometimes when he doesn't know the answer. I don't know if it's for tests or what- reading tests are proctored in a room where he's the only kid and spelling tests he nails because he KNOWS the words. I know he gets stuck on word problems in math (deficits in reading, got it), but OH MY GOD. Cheating? My kid? Thomas and I have always told him how bad that is! I know he's not doing it for numerical equations, he does those right in front of me. But other things? I now have to contact his teachers... shit.
• Morgan told me that he doesn't want to be "dirty Morgan" anymore and has to take more showers. He showers daily, sometimes skips a day if he's running late. What the hell? Who called my kid that? He won't say...
• People think I've gone insane due to my rants on the word retarded... is it that bad that I want to punch those that call me oversensitive? I'm not oversensitive, I just want to punch people, that's all.
• Morgan is overly affectionate. He loves to hug, kiss, cuddle, "pet" (have his head/back rubbed- he also tries doing that to other people, but sometimes comes off as kind of creepy, lol), hold hands... when is this really going to go south for him/us? I think it might have already on the boy front since he's brought home the words "fa***t" and "gay" and I'm pretty sure they didn't get tossed out loosely. Or what if he tries to "pet" some girl and she gets scared due to his size? He wouldn't hurt a soul, especially a girl, but my God... So we're doing behavior modification- a lot.

So, as you can read, I'm a worrier. I'm a warrior for my child, too. But I worry A LOT. I worry so much that, at times, I literally get sick. I can't stop it even though I know it doesn't help and is in fact detrimental to  Morgan (and Thomas and Bailey). But when so much seems unknown and out of my control, I don't know what else to do.  I try to be proactive about things in my life, but look at the list above me, a lot of these things are more of  "wait and see" kind of affairs rather than immediate "let's kick ass" types.

All I know is that I get exhausted/energetic and angry/sad/happy all at once and most of the people closest to me don't seem to get it. My friends who have NT children don't understand why I have mostly autism to talk about- that's my life, get with it or get out of it. My family, I think, sometimes feels the same way. I vent on my blog so I guess the six that read it know afterwards, but until you've walked in my shoes...  don't judge me or assume you know what's going on in my head- you don't. Autism is/can be a frightening place for a parent- unless you're in my Spectrumville, you're probably not letting it keep you up at night.

Summer 2008 "summer of hell", photo by Mariah Bibbey

May '07 pre ASD symptoms, photo by Mariah Bibbey

On being "one of us"

I noted a topic on an AS discussion board  tonight entitled "What's the best/worst thing about being an Asperger's parent?" All I could think, in my own overly analytical way, was "Am I supposed to give a sentence or novella for each part?" So, since I'm incapable of short answers...



The bad & ugly side


I'm not going to lie- Autism can suck. I watch my child struggle so hard that he's near tears (or in them) just by trying to complete a simple task- like learning to tie his shoes, which he still has not learned. Damned fine motor skills.

Seeing other kids make fun of my kid when he's really trying to play with them... and seeing those kids' moms allow or even encourage it. The worst part of that? Morgan sometimes won't even notice the teasing, name calling, or that crap. What he notices is that the kids don't want to play with him.

You notice why the kids don't want to play with your kid. My son is literally the nicest person I know. He drives me up the wall, but I'm his mom. However, Morgan talks constantly about his trains. I mean, constantly. Kids his age usually have more than one thing to talk about extensively.  He's recently latched onto Transformers and Angry Birds, so there's hope that one day Thomas the flippin' Tank Engine's boiler will burst for good in our house, never to reappear.

As a parent, anytime that autism is mentioned in conjunction with your child, one of your initial thoughts is "I can't die." It's horrible. You can't die, you have to live one day longer than your child because who is going to look after your child the same way you do? What if, God forbid, you die while your child is young? To a neurotypical child, it would be horribly traumatic, but how would an autistic child adapt?

I can't get sick or Morgan gets upset. True story, and a very hard thing to deal with sometimes. Morgan spent the first two and a half to three years of his life with me in fairly good health. The last four have been awful. I have some autoimmune disorders that cause me a lot of pain when they're not in remission. When Morgan knows I'm in pain, he cries at school. He worries about me. He misses me. It makes me feel like the worst mother on the planet.

When your child is stimming, you can be driven to the point of absolute insanity.

Not every Autistic is like the guy from Mozart and a the flippin' Whale, okay? Just like not every Autistic is like Rainman, got it? Not every frickin' person on the spectrum is a savant! So quit telling me that ALL Autistics are highly intelligent or that ALL of them are savants! Quit generalizing about crap you don't know about!

IEP meetings....

Insurances companies- like mine, who don't cover any therapies unless they can be proven restorative in nature before the onset of therapy. I wish I was making this stuff up.

Don't assume because autism is mentioned that my child is a moron, either.



Best things

My son can manage to entertain himself for hours on end, no kidding. I rarely hear "I'm bored" come out of his mouth and he actually seem to mean it. He's always been that way. Even as a baby, Morgan amused himself by figuring out complicated locks, puzzles, pestering the cat, or locking Mommy out of the house- that wasn't fun. Seriously, my less than a year old brilliant child dead bolted the door behind me without warning during a freezing downpour. I was in my jammies. Not cool man.

Being the parent of an Autistic make you appreciate the details in life that you wouldn't notice otherwise. Be it a speck of mud on a window, a faint whistle in the wind, or a cloud that looks like Bertie the Bus from Thomas the Tank Engine, at least 1,000 times a week there are moments when Morgan points things out to me that I would have never taken the time to stop and notice. He finds patterns in everything and that's incredibly, well, cool, for lack of a better term. That he can find patterns in random forms and find it beautiful is striking to me because as an artist, I crave composition, too.

Having an Autistic for a child makes your other child instantly compassionate towards people with different abilities. The other night, we were in a crowded bookstore and without being told, Bay grabbed his brother's hand to guide him along in order for Morgan to step out of the way for a lady in a wheelchair (he spaces out sometimes- kind of like sensory overload). Most four year old kids would stare at the woman or point, or wonder aloud how she got in that chair. Not Bay. No, my younger son somehow always gravitates towards the children that are in leg braces, have developmental delays, autism, etc., whenever we're out at the doctor's office, playground or elsewhere. I don't tell him to, but he does. I'd like to think that he's just instinctively knowing who needs a friend, like his brother (who he worships without apology).

Having an Autistic child makes you grateful as hell for that diagnosis because you know how much worse it can be.  A kid cannot die from Autism. He'll grow up to be an adult with Autism. He'll struggle, sure... but with the right therapies, interventions, supports and educations, he can be "fine" - whatever that is. This is not to say that I'll ever get into a normal sleep pattern and quit worrying about my child. I don't think I'll ever stop worrying about Morgan until he has a career, relationship and kids. And even then...

The best thing about being an Autism parent? You get to define your own sense of normal- and feel great about it. I used to feel like crap because my child wasn't/isn't "normal." What the hell is that anyways? MY normal is a kid that might just lick someone else. MY normal is a soulful boy that memorizes whole episodes of Thomas the Train, The Nutcracker Suite, Adele, The Temptations, BB King, and Kenny Chesney. MY normal is a boy that has fears about everything but what would seem rational to me to fear (like heights- hello?). MY normal is now IEPs, The OASIS guide, Temple Grandin memoirs, prowling online at midnight scoping out new information, and dissecting for the billionth time the proposed changes of the ASD definition in the new DSM. Normal is worrying so much that my stomach feels weird if it's not in knots.

Also, another best part are the surprises when your beautiful, amazing, wonderfully introverted flamboyant child does something that he (or she) isn't "able" to do.

Blessed in the new year

I haven't blogged in a month due to the craziness of the holiday season, so I'm just going to give the synopsis.

Morgan did very well over the holidays, even though we traveled. It helped tremendously that we went to my mom's place, which he's always loved, and his grampa was there (he works out of state)! There was some misunderstandings (mild) over Morgan's tone of voice and if he was being rude or not and honestly, I stayed more on edge and stimmed my butt off more than Morgan did. This means I pretty much chain smoked. I know it's going to take a while for everyone around me to get used to the way they have to approach Morgan.. it's different from how we've been doing it, that's all.

My gramma must have found something on Oprah or in her magazines about AS because she came up to me and suggested that Morgan was "high functioning" and had really "opened up" to her for the first time (he came up to her, hugged her and said "I like you"). Haha, she bribed him gave him a present like she always does at the very start of the visit. So yeah, Gram, he's thawed- toward your wallet. He hung out around all Christmas day hoping to get another $10 bill off of her! Also, according to him, not all old people smell funny anymore. His brother disagrees.

Also, my kids got Lenovo tablets from their Granny (my mom is Babe, Thomas' is Granny). Now they can play educational games Angry Birds on trips! They can also say "poop" "potty" "butt" "pee" and other gross things to a Transformers Autobot in an app where it repeats it back to you, total echolalia, if you ask me.. but they enjoy it.

Morgan touched my heart the way he shopped for his brother's Christmas and birthday presents. Normally, Morgan is in and out of a store when shopping for me or his daddy. Now, for Bay? Or one of his peers? NO. He'll take over an hour if he has to- especially Bay. He wants it to be the perfect gift, Bay's favorite. I think this year he succeeded :)

I'm so very blessed to have these two boys that love each other so much. They've brought color and life into my world. Morgan has expanded my boundaries and my heart from the very beginning and Bay has turned all of our world's upside down :)

Just not getting him

I'm just.... not. I overthink things and don't think like him. I crawl people's asses for not taking Morgan into consideration when I don't even think that I do. I get upset for other people raising their voices and scaring him and yet, when I'm stressed out, I yell. He's had two meltdowns that were awful in the past few days and I know that those managed to put a bigger wedge between us. Morgan's asking his daddy to pick him up from school (Thomas takes him, I pick him up) and then do homework with him.

What am I doing wrong? I push Morgan because if I didn't, he'd sit in front of Thomas the Tank engine or play Angry Birds until bedtime. Does that make me a bad mom? I cuddle with him, but I'm not going to let him hug me repeatedly when I'm explaining something- that's his way of tuning me out. I reinforce good manners, should I not? Right now, his face is horribly red and chapped from a stim that he's had going since October. He licks his face.. and licks and licks and licks. His father told him that he looks like he's been burned. Morgan's gotten teased for it, but won't let me put cream on it. So when I do, he screams, cries, throws a fit. He actually told a store manager in Old Navy on Friday that I beat him and could someone please call the cops? What the HELL? This was after a GREAT day. On Saturday night (after another GREAT day- he even went to a birthday party of a girl he just adores), same deal with the cream. Only this time, he told me I never do anything for him ever. Gee, thanks kid! I get he doesn't have a way to process the behind the scenes stuff, but my Lord, it's like having a teenager in the house sometimes.

I feel like my son is punishing me for doing all of the right things by him. I know it's ridiculous- he's seven for Christsake. But this child... it's like I don't know him sometimes and that scares the hell out of me. I was told to repair my relationship with Morgan last night. I didn't even know it was broken....

 From the ballet on Friday... The first picture shows Morgan's face chapping, unretouched. The second I retouched. He was pretty excited, especially since his Mommy was his "date" for the day :)

To be like him

I spend a lot of my time, no matter what I'm doing, with the thought of what it is to be the essential core of my son. Not just Morgan, my sonwithAspergersSyndrome as I feel I now spit out sometimes- I hate that and myself for it, he's not the syndrome, he's Morgan, dammit.

He's Morgan, the seven year old first grader who loves Thomas the Tank, Optimus Prime, cars, trucks, swimming, his "Babe" (my mom), his Granny (Thomas' mom), his little brother, his dog, cats, kids, math, books, Halloween, Christmas, and millions of other things. He's smart, my Lord is that child bright. He's genuinely a sweetheart of a child. I'm not saying this as his mom, I'm saying this as the person who has spent more time around him than anyone else in his life.

Morgan loves people and all he's ever wanted is just to simply be loved in return- that's all. He doesn't want to be hurt or to hurt anyone or anything else. He's a little boy. He wants to know he has friends. He used to assert to  us last year who all  his friends were (though we were never sure of it), up until about September, he was still doing that.

Then, the vortex fired up. By vortex, I mean whatever this thing is that is AS that has come along and taken my slightly off kilter kid and made him uncommnicative to his peers. The vortex that has made Morgan think that he's being teased and bullied far more often than he actually is (who in their right mind is going to pick on the 5' 100lb kid??)... no, no, Morgan- the child who, his daddy observed during lunch today, apparently has a lot of school friends and has no idea of it now.

Thomas, his daddy, told me that the kids were very friendly to him during lunch, yet Morgan's been crying about lunchtime since his lunch schedule has changed. Thomas told me that Morgan might be the one being rude sometimes- even on accident, which we've thought before.  He also had to explain to our son that when a little girl made a silly face, she wasn't being mean- she was just being silly and trying to make him laugh. After that, Morgan smiled.

He keeps telling me "everyone laughs at me" or "he says I'm rude!" or the worst refrain "I feel left out" and yet I've wondered, how much of this is Morgan's perception?

What's it like to look at someone and have to ask them if they're having a good day, evening, lunch, class, car ride, etc- all because you can't read their face and they aren't screaming, crying or saying to you "I'm having a wonderful _____".  Lately, I've noticed Morgan is coming up to me asking me "Mom, are you liking to mop?" Or, "Mom, are you not enjoying that book? Or "Mom, is Bailey liking that movie?" It's like he's lost his ability to discern. Did he ever have it though is my question. Did I always assume and now my son knows how voice the question?

What would it be like to look at 100 faces around you and think that everyone dislikes you - even though they don't - seeing their smiles, hear their laughs, and think they're laughing at you, all because you've just spilled a tiny drop of something on yourself? Or thought a sad thought and it made you cry or frown? A very familiar refrain from Morgan is "Hey, you stop laughing at me!"

How awful it must be that, because of a neurological disorder, your voice comes out with an insane lack of volume control (too low or too high), monotone no matter how you intend it to sound (if you give it any thought- even when Morgan does voices for characters, they all sound the same) and quite rude sounding most of the time, even when you back up requests with "please" like your momma taught you.

How does it feel to be my son when he's in class? NTs like me walk into a room, sit down at our desk, chatter with our friends as we're taking out our work, complain about what's coming up, all the while thinking about a test that might be next week or tomorrow, then teacher comes in and it's times to hush- just like that. Not my son. My son comes into class like a bull in a china shop, I'm sure, because that's how he enters most rooms, lol. He finds his desk and is hearing all this racket around him. He can't separate the voices from one another, there's too many. So he sits. He might get out his work. His progress report in math says he's doing better at this. He talks to the kids around him,  but he's labeled disruptive due to the tones of his voice. The teacher starts the lesson and he tries to pay attention but the sweater I put him in today is scratchy and the kids three and five desks over are whispering and someone is squeaking a shoe and the denim from his pants is rough on his legs and did he forget his homework from last night- is it in his purple folder? Okay, yes it is. "Morgan!! Pay attention to the lesson!" He snaps to, realizes that todays lesson was already done as a game on the computer days ago and he's now bored. Papers are handed out for deskwork. Oh God, scissors, his hard thing. He tries so hard to do the good work that the other kids do, but it's HARD. His hands feel like rocks- they don't move right at all. Why don't they cut on the lines like everyone else's do? Tears of frustration start to slide down his cheeks. "Crybaby," someone whispers nearby. "It's okay, Morgan," says the little girl next to him, "just calm down. But Morgan now is twitching. His stimming is coming out as bouncing his legs, wanting to twirl his hair, making his train sounds.... He thinks, "if there wasn't so much noise..."

Morgan told me and his resource teacher two weeks ago he hates his math class both because it's too loud from all the yelling and it's boring (he's holding a 98 average). When doing the homework (unfinished work from class or work he's correcting handwriting on) he starts stimming whenever there's noise other than music. Not much I can do for him in a classroom other than teach him coping skills. But still.... to be seven and not really know what the world's doing around you, to you, or for you?