*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!
Wednesday, February 13, 2013
Tuesday, February 5, 2013
A puzzling piece
Editor's note: I am honestly not trying to offend anyone within the Autism community with this subject. This is only me, as a parent of an Autist, stating how I feel about those puzzle piece awareness symbols.
Unless one is living under a rock, then one would know that the symbol for Autism Awareness is a puzzle piece, or a series of interlocking pieces, or even a series of puzzle pieces with one missing, sometimes a piece just hovering over it's space. Should be a small thing, right? Well, not so much, because there are also the slogans. Personally, I find some, if not most, of the slogans associated with those puzzle pieces incredibly insulting to my son. Here is a small sampling:
I have one piece of Autism Awareness jewelry, my mother-in-law bought it for me. I love it and Morgan loves it, as he does all of the interlocking puzzle pieces. Why? Because all my pieces fit together on it, nothing is missing, just as nothing is missing from my child. On the back, it is inscribed:
"Until the pieces fit.."
"..solve the puzzle of Autism"
"Figure out the puzzle."
I could name more, but you get the drift, right? All of those slogans, while catchy, are just slightly <sarcasm> offensive to me. They're incredibly offensive to most self advocates, if recent blogger chatter is any indication. Actually, that's not true, it's not just recent, it's been going on for years.
"I'm not a puzzle, I'm a person."
I've read where some - NT and Autist - think that this is a very petty thing to argue over... but I disagree. Actually, that's not entirely true. Personally, I'm a fence straddler. I can see where the self advocates and even some of the parent advocates are mad. Being represented by a puzzle piece can be insulting, especially when those signs, jewelry, clothing (let's face it, anything you can slap a slogan on) show a piece missing or not fitting.
Just think, as a neurotypical, if someone were to describe you and anyone like you as a jigsaw puzzle with a missing or improperly fitting piece. This, to me, indicates that someone out there believes that you are defective. I don't believe my son or any other Autist is defective. Would any of us say (out loud) that, say, a breast cancer survivor is defective? Okay, bad correlation between Autism and cancer. How about ADHD? In this age of PC talk, how have we done this?
On my own flip side, I promote Autism Awareness Month (all year long) and wear Autism Awareness clothing or jewelry to put in society's collective face that someone I love, my son, is Autistic. It's my prerogative to do so and it's better, I think, than for a random person thinking him psychotic or worse, stupid, when he or she hears Morgan "peeping" a yes to me or sees him stim.
How does he feel about being represented by a puzzle piece? Well, Morgan loves puzzles and patterns. To him, I think, this is just a cool thing to be represented by. However, he doesn't seem to care for the imperfect ones. Also, I'm picky... See that picture, up in the right hand corner? That's my whistle, my lanyard, my awareness ribbon. Please note that all of those pieces are perfectly matched up. I won't wear or promote any puzzle "stuff" that isn't perfect. So, maybe Morgan has picked up on that from me.
Do I believe that Autists are perfect? No, they're human, just as my son is and therefore prone to make mistakes. However, as I said, they aren't defective.
My thinking has been that while, yes, an Autist's brain is a mystery to the neurotypical world, a puzzle if you will, it is not the Autists that are missing the pieces, it's the neurotypicals. I've always thought that Morgan, and those like him, probably have an extra piece to their neurology that I and scientists weren't figuring out. Hence, the name of my blog. I'm trying to decipher my son. It's alright with me if I never get my answers because I'm finding the journey very fascinating. Plus, I don't look at my son as problem that needs to be solved.
How is it we have an entire movement for awareness and acceptance when a good majority of the people that seem to be leading it aren't listening to the people that matter- the Autists? Granted, we have some Autists that are gaining ground and fame. Heck, our government even let <gasp!> two Autists testify during last year's congressional hearing on Autism! Of course, they were railroaded... and called burdens, along with the rest of the "Autism epidemic/disease"- good going on that one, REALLY... but I guess that's not supposed to matter since this movement, that hearing, is for them, correct? (Sorry, that was snark)
However, parents and "experts," we're missing the less famous Autists. The ones whose opinions should count the absolute most to us- our kids, our family members, our friends
We need to know that we, as a society, do have eloquent, or even non eloquent, Autists to represent Autism Awareness. Yet, somehow, their voices seem to get drowned out by the fervor of neurotypicals, officials, parents and scientists alike. It seems to me, that any time an Autist, or a group of Autists, raises their voices loudly in protest, a neurotypical (or several/hundred/thousand) tell them, "Hush, you're not supposed to be able to feel that way." Or something to that extent. Is it any wonder, then, that a lot Autists don't appear too happy with a lot of neurotypicals?
I have a favor to ask of the Autists in the community that I am friends or friendly with. Please don't get angry with the neurotypical parents who are trying to learn from you. We're thick headed at times and are trying to unlearn years and years of our own rigid thinking. We look to you as what our children can become. You are our children's future inspirations; you are the trailblazers for equal rights. We're just wanting to fight along side you.
Just think, as a neurotypical, if someone were to describe you and anyone like you as a jigsaw puzzle with a missing or improperly fitting piece. This, to me, indicates that someone out there believes that you are defective. I don't believe my son or any other Autist is defective. Would any of us say (out loud) that, say, a breast cancer survivor is defective? Okay, bad correlation between Autism and cancer. How about ADHD? In this age of PC talk, how have we done this?
On my own flip side, I promote Autism Awareness Month (all year long) and wear Autism Awareness clothing or jewelry to put in society's collective face that someone I love, my son, is Autistic. It's my prerogative to do so and it's better, I think, than for a random person thinking him psychotic or worse, stupid, when he or she hears Morgan "peeping" a yes to me or sees him stim.
How does he feel about being represented by a puzzle piece? Well, Morgan loves puzzles and patterns. To him, I think, this is just a cool thing to be represented by. However, he doesn't seem to care for the imperfect ones. Also, I'm picky... See that picture, up in the right hand corner? That's my whistle, my lanyard, my awareness ribbon. Please note that all of those pieces are perfectly matched up. I won't wear or promote any puzzle "stuff" that isn't perfect. So, maybe Morgan has picked up on that from me.
Do I believe that Autists are perfect? No, they're human, just as my son is and therefore prone to make mistakes. However, as I said, they aren't defective.
My thinking has been that while, yes, an Autist's brain is a mystery to the neurotypical world, a puzzle if you will, it is not the Autists that are missing the pieces, it's the neurotypicals. I've always thought that Morgan, and those like him, probably have an extra piece to their neurology that I and scientists weren't figuring out. Hence, the name of my blog. I'm trying to decipher my son. It's alright with me if I never get my answers because I'm finding the journey very fascinating. Plus, I don't look at my son as problem that needs to be solved.
I think though, this time, with the puzzle pieces, the Autists might beat the neurotypicals to an extent. I have come across several blogs talking about "taking back" the puzzle piece as a symbol for Autism. Changing the singular puzzle piece color of blue that we all associate with Autism Speaks to something else. Whether this was in jest, I do not know, but they have my support.
Autists are speaking and it's time we listen to them
How is it we have an entire movement for awareness and acceptance when a good majority of the people that seem to be leading it aren't listening to the people that matter- the Autists? Granted, we have some Autists that are gaining ground and fame. Heck, our government even let <gasp!> two Autists testify during last year's congressional hearing on Autism! Of course, they were railroaded... and called burdens, along with the rest of the "Autism epidemic/disease"- good going on that one, REALLY... but I guess that's not supposed to matter since this movement, that hearing, is for them, correct? (Sorry, that was snark)
However, parents and "experts," we're missing the less famous Autists. The ones whose opinions should count the absolute most to us- our kids, our family members, our friends
We need to know that we, as a society, do have eloquent, or even non eloquent, Autists to represent Autism Awareness. Yet, somehow, their voices seem to get drowned out by the fervor of neurotypicals, officials, parents and scientists alike. It seems to me, that any time an Autist, or a group of Autists, raises their voices loudly in protest, a neurotypical (or several/hundred/thousand) tell them, "Hush, you're not supposed to be able to feel that way." Or something to that extent. Is it any wonder, then, that a lot Autists don't appear too happy with a lot of neurotypicals?
I have a favor to ask of the Autists in the community that I am friends or friendly with. Please don't get angry with the neurotypical parents who are trying to learn from you. We're thick headed at times and are trying to unlearn years and years of our own rigid thinking. We look to you as what our children can become. You are our children's future inspirations; you are the trailblazers for equal rights. We're just wanting to fight along side you.
I have one piece of Autism Awareness jewelry, my mother-in-law bought it for me. I love it and Morgan loves it, as he does all of the interlocking puzzle pieces. Why? Because all my pieces fit together on it, nothing is missing, just as nothing is missing from my child. On the back, it is inscribed:
I wear this for my hero
Morgan
Monday, February 4, 2013
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.
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.
Friday, February 1, 2013
My littlest boy, the ginger
Editor's note: I don't usually write about our other child, Bailey, because this is a place for me to talk about Morgan and our journey with him as we navigate Autism. However, this is also a place for me to talk about Autism and how it has impacted my family. I don't know if Bay would be any different if his older brother was neurotypical, but he'd still be a hell of a kid. Bailey has been part of the compass that helps direct his brother. *Oh, there are a lot of photos in this post. I figured the kiddo deserves it.
Bailey, even during incubation, was a kicker and a (I imagine) silly boy. The kid kicked the crap out of me regularly while I was pregnant, it felt like he was dancing with roller skates on. I mean, it was painful. Maybe the pain was worse because the stress in our household was setting off Ritcher scales. Morgan was in his nonverbal stage and we were in the beginnings of trying to find a diagnosis. There was a lot of kicking and screaming in those days. A lot of kicking and screaming.
Bailey was born on a very frigid day in 2008. He came into this world making a lot of noise and has never stopped. When his older brother first saw him, I don't think that Morgan quite knew what to do with him. However, despite the confusion, there was love born that day. Morgan, for as much as I felt that he was pulling away from me and retreating into himself at times, looked at his baby brother and smiled. But, not at first. 
As the weeks grew into months, Morgan, I believe, really learned to love his brother. There was no "baby envy" that is common of children that age (three when his brother was born). Maybe it was Autism. Maybe Morgan instinctively knew that this would be one of the first people to not judge him, to just love him. Morgan's instincts were correct. That little ginger haired, blue eyed boy was born, I think, worshiping at the altar of Morgan. Serious hero complex, people.  |
| "normal" interaction |
 |
| Seemingly "odd" interaction - this was tickling, no Bay's harmed! |
 | |||
| Imitating Mommy |
 |
| Trying to catch up |
Bay is a charmer with those big blue eyes and messy red hair. He squishes his nose and though it looks evil, it's still cute. Even when he's mad, he's adorable. It helps keep him from getting shipped to China.Bailey is always up for a good time. Whether it's creating something like an art project, or an Angry Birds set, going to the park, or taking a road trip, the kid's always game.
Now, mischief the kid has in spades. We have back talk, we have pranks, we have run of the mill things that are normal for any five year old. However, he tried to cut the dog's hair a couple of weeks ago. When he and his brother dumped an entire box of Cheerios on the floor a long time ago, Bailey happily sat down, crunched them up and made an even bigger mess. His older brother was whooping in the background with the sweeper vac, trying to clean it up so that they wouldn't get into trouble.
Bailey schemes and dreams. I love that. I love that he's so incredibly full of life that he causes me to shake my head in wonderment. Granted, those same schemes make me post statuses on Facebook that my friends apparently find hilarious. But hey, at least my frustration at raising a high spirited child serves as entertainment value.
The all time best thing my youngest son does, though, the thing that makes my heart swell with pride? He loves that big brother of his to the moon and back. He learned the days of the week because they have "sleepovers" with each other on Friday and Saturday and he counts down until then on the other days. Though he gets frustrated because Morgan really only likes to play with trains, THOSE are what he picks out for Morgan's birthdays and Christmases.
We're open and honest about Morgan being an Autist. He'll seek out SN kids to play with, especially if he notes that no one else is playing with them because his brother has taught him that kids are all just, well, kids. Morgan taught him right from wrong in a way that I couldn't have- he's led by example and by life experience. I don't think Bailey ever wants a child to hurt as badly as his brother has been, including himself- but that's another blog post. Bailey isn't always accepting of Autism because of the walls it can put in between him and Morgan, but he is of his brother. As much as a five year old can be. Boy, don't even let that child hear the "r" word, he'll school you on how bad it is. He can also probably give you a run-down on stims, tics, and the DSM's definition of autism.
He gets very upset sometimes because Morgan needs sensory breaks and cannot play with him. He doesn't always understand why his brother has to spend so much time doing those two or three pages of homework when it only takes the other kids a few minutes. But when the homework is done, when the sensory breaks are over, I know to back off and let those boys be boys together. To giggle hilariously as they sniff each other's armpits, build train sets, watch movies, and just.. be kids.
Another thing that Bay has done since Morgan was probably in kindergarten is take up for his big brother. We've had to pull him away from kids that he knows have bullied his brother just so Bay doesn't get in trouble or get his butt whipped, trying to whip theirs. I have to admit... I don't condone violence at all, but this fiery child of mine is willing to stick his neck out for his brother, that's kind of admirable. He's been doing it since he was three. Bailey has told kids, "If you can't be nice to Morgan, you can't be my friend." I think he sees the two of them as a package deal.
I'm so very thankful that I was blessed with two very individual boys who love each other so much.
Bailey's love for his brother is amazing. "You're the bestest big brother in the whole world!" is often heard in our home. Of course, so is "Mom, Morgan licked me!"
 |
| These boys are my <3 |
Wednesday, January 30, 2013
When you assume...
Editor's note: This contains cursing and me poking fun at myself.
Yesterday morning, before the sun came up, Morgan came bursting into our room. He was saying something about a nightmare.
Me: "There, there, darlin. It's okay. What was the dream about?"
Morgan: "DRUGS! Some kids were chasing me and trying to give me DRUGS, Mommy."
Me <fighting sleep, but shocked>: "It was just a dream, come snuggle, baby."
I got up after Morgan had left for school with his dad and got to thinking... Where the HELL had the idea of drugs come from? I know that his school had introduced D.A.R.E. back in the fall... but lately, in the last week, Morgan has been talking about drugs and once even brought up needles. I mean, WHAT THE HELL?
In other words, I began to freak out, Jessi style. It's not pretty. It's kind of like taking a ton of thoughts and flushing them in a toilet, only to have the toilet back up and stay that way.
I gave it some thought, which when I mix in copious amounts of caffeine and a serious lack of sleep, does not go well. I sent his teacher an email that I thought was phrased politely, asking if the subject of drugs had been brought up lately in guidance or something. Rightfully so, I think I pissed her off. Frankly, I tend to do that. I lack a filter, especially when I'm worried, upset, or pissed. I wasn't pissed, I was wondering where in the world my kid was getting this crap about drugs!
For the record, let me state this: the adults in this house are super careful about the topics of conversation around our children. Well, we try, okay? Both of the kids are little tape recorders that jot down everything in their heads and spit them back at the most inopportune times possible. In Bailey's case, he spits it out almost immediately or during the most embarrassing times and delights in it. In Morgan's, well, he likes to wait a while, sometimes a week, sometimes a month or more and inserts it almost casually and always innocently. So, I tend to forget that his memory is like an elephant. Yeah, I need to work on that.
Anyways, by the time I picked up Morgan from school, I was in a tizzy. The day hadn't gone that great. Lupus and anxiety can wreck havoc on the best laid plans and all that. I tried broaching the subject of the dream and I got this:
"I was in a haunt(ed) house. Some kids chased me. I ran outside and slipped and they tried MAKE ME TAKE DRUGS! They made you, Bailey, and Daddy take them, too. You turned into zombies."
I snickered to myself, but took it seriously. As seriously as I could, anyways. Then, I waited. I had Morgan do homework, I cooked, and waited for Tom, my husband to get home. He's great about getting to the bottom of things. Sure enough, we got the full story (and boy, it was a story) out of Morgan.
For those of you that follow me on Facebook, you'll recall an incident from a week or more back involving my son being called retarded. Well, Morgan's teacher, after I told her, arranged for an anti-bullying video to be shown. Morgan, last night acted out the majority of that video...
"A bully is someone who shoves, punches (this is complete with hand gestures), hits, or calls you names. Bullies also try to give you drugs!" It went on and on... but I'll spare you. Plus, I was too interested in how animated he was. I honestly think we got the entire video in our living room.
Then, just to see what he'd learned, I asked:
"Morgan, what are drugs?"
"Drugs are bad! They are like circles and BAD!"
His dad and I exchanged looks and explained to Morgan the difference between illegal and legal drugs. We showed him how I have to take medicine for Lupus and RA, also called drugs, every day and that he and his brother should never touch Mommy's medicine. This might end up with Morgan announcing to his class that his mom is on drugs... that'll be a fun call! We also talked about how correct he was in that bullying thing.
Yep, folks, drugs are bad. Also, I'm an overreacting moron who should have waited to speak to her son before emailing a teacher. Oh, and Morgan got the needle thing from knowing that people take medicine with needles, like shots. Yep, I'm just rockin' this parenting stuff!
Just another day in the parenthood. Ugh.
Oh, and Morgan's teacher, if you're reading this? I'm really, really, really sorry! Again.
Yesterday morning, before the sun came up, Morgan came bursting into our room. He was saying something about a nightmare.
Me: "There, there, darlin. It's okay. What was the dream about?"
Morgan: "DRUGS! Some kids were chasing me and trying to give me DRUGS, Mommy."
Me <fighting sleep, but shocked>: "It was just a dream, come snuggle, baby."
I got up after Morgan had left for school with his dad and got to thinking... Where the HELL had the idea of drugs come from? I know that his school had introduced D.A.R.E. back in the fall... but lately, in the last week, Morgan has been talking about drugs and once even brought up needles. I mean, WHAT THE HELL?
In other words, I began to freak out, Jessi style. It's not pretty. It's kind of like taking a ton of thoughts and flushing them in a toilet, only to have the toilet back up and stay that way.
I gave it some thought, which when I mix in copious amounts of caffeine and a serious lack of sleep, does not go well. I sent his teacher an email that I thought was phrased politely, asking if the subject of drugs had been brought up lately in guidance or something. Rightfully so, I think I pissed her off. Frankly, I tend to do that. I lack a filter, especially when I'm worried, upset, or pissed. I wasn't pissed, I was wondering where in the world my kid was getting this crap about drugs!
For the record, let me state this: the adults in this house are super careful about the topics of conversation around our children. Well, we try, okay? Both of the kids are little tape recorders that jot down everything in their heads and spit them back at the most inopportune times possible. In Bailey's case, he spits it out almost immediately or during the most embarrassing times and delights in it. In Morgan's, well, he likes to wait a while, sometimes a week, sometimes a month or more and inserts it almost casually and always innocently. So, I tend to forget that his memory is like an elephant. Yeah, I need to work on that.
Anyways, by the time I picked up Morgan from school, I was in a tizzy. The day hadn't gone that great. Lupus and anxiety can wreck havoc on the best laid plans and all that. I tried broaching the subject of the dream and I got this:
"I was in a haunt(ed) house. Some kids chased me. I ran outside and slipped and they tried MAKE ME TAKE DRUGS! They made you, Bailey, and Daddy take them, too. You turned into zombies."
I snickered to myself, but took it seriously. As seriously as I could, anyways. Then, I waited. I had Morgan do homework, I cooked, and waited for Tom, my husband to get home. He's great about getting to the bottom of things. Sure enough, we got the full story (and boy, it was a story) out of Morgan.
For those of you that follow me on Facebook, you'll recall an incident from a week or more back involving my son being called retarded. Well, Morgan's teacher, after I told her, arranged for an anti-bullying video to be shown. Morgan, last night acted out the majority of that video...
"A bully is someone who shoves, punches (this is complete with hand gestures), hits, or calls you names. Bullies also try to give you drugs!" It went on and on... but I'll spare you. Plus, I was too interested in how animated he was. I honestly think we got the entire video in our living room.
Then, just to see what he'd learned, I asked:
"Morgan, what are drugs?"
"Drugs are bad! They are like circles and BAD!"
His dad and I exchanged looks and explained to Morgan the difference between illegal and legal drugs. We showed him how I have to take medicine for Lupus and RA, also called drugs, every day and that he and his brother should never touch Mommy's medicine. This might end up with Morgan announcing to his class that his mom is on drugs... that'll be a fun call! We also talked about how correct he was in that bullying thing.
Yep, folks, drugs are bad. Also, I'm an overreacting moron who should have waited to speak to her son before emailing a teacher. Oh, and Morgan got the needle thing from knowing that people take medicine with needles, like shots. Yep, I'm just rockin' this parenting stuff!
Just another day in the parenthood. Ugh.
Oh, and Morgan's teacher, if you're reading this? I'm really, really, really sorry! Again.
Monday, January 28, 2013
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.
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.
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! |
Monday, January 14, 2013
But He Doesn't "Look" Autistic...
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 |
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 |
Subscribe to:
Posts
(
Atom
)