*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?
Showing posts with label autism insurance. Show all posts
Showing posts with label autism insurance. Show all posts
Thursday, March 21, 2013
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.
Thursday, December 6, 2012
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
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
Monday, October 29, 2012
Mostly smiles, some tears, no jeers
The title pretty much sums up what yesterday, the Louisiana Autism Speaks inaugural Walk was for us, as a family. Morgan had the greatest time! We had explained to him what the walk was about, leaving out Autism Speaks' mission about finding a "cure" for autism. If we had done that, he would have balked outright. He kept looking around and asking me "are ALL of these people autistic?" It kind of cracked me up. But after a while, he just, well, let go.
He became MORGAN. The Morgan that very few people really get to see. The one that toots like a train, grumbles and grunts low in his throat, tells Thomas stories non stop, and had a blast. He played with so many auties, it was just wonderful. All of those people, being themselves, in an environment where they could be themselves.
I met a lot of lovely people yesterday and witnessed wonderful, sometimes heartbreaking, tender moments. I thought I might spend my day crying. For one, that a Walk like this is even needed breaks my heart a bit. But it breaks my heart no more than childhood cancer, adult cancer, AIDS, etc., walks do. It's here, we have to deal with it, don't go all Chicken Little with it, and COPE.
You could see "it" in a lot of our faces. I say "our" because my husband and I captured it for both of us, completely candid- the LOVE. During the singing of the National Anthem, there was a mother and her daughter standing in front of us. The daughter, who must have been nearly my age (almost 30), was flapping her left hand and starting to make a keening sound. I believe she was starting to have sensory overload. She was profoundly autistic and had her left hand's fingers arched back at such an angle I honestly wondered how they didn't break. Then, her mom did "the beautiful thing." She took her daughter's hand (the left one) and converted the flapping and arching fingers into a waving motion. The autistic woman went from looking like she was going to have a meltdown to looking as if she were directing a beautiful concert; a smile came upon her face. I cried.
I walked up to the mother after the Anthem was over to tell her "what you just did for your daughter was beautiful. The world needs more parents like you." She, too, had tears in her eyes and said, "We can't help but love them, can we? They're only our children once." That statement alone made me tear up even more.
I love my son, no matter what, as do (I hope) all of those parents there yesterday. But you could see another "it" in a lot of their faces: the agony, the stress, the pure anger, almost malice, and the "I'm not coping, I'm going through the motions of having an autistic person amongst me" in their faces. Thing is, a lot of those parents had kids that seemed a lot like my child. These weren't the parents who had kids in strollers at the age of 10, who had non verbal children- they had high spirited, highly intelligent children that wouldn't, for the lack of a better term "shut up," lol.
That's what killed me. The ones who seemed, to an outsider, to have it "the worst" smiled the most.
My family and I walked for a little boy who loves trains. He was singing his Thomas the Tank Engine songs, telling the stories, talking about anything and everything, petting the dogs people brought, trick-or-treating along the path (great idea, Autism Speaks!!), tooting and beeping, and NO ONE CARED! I loved it.
I had to laugh at one woman who crawled her kid's butt for slapping one of the AS signs. He was clearly stimming his happy little behind off and I had already shooed him away from the sign, as I was taking pics of all of the signs. She apologized for her son's "behavior" and I outright laughed saying, "lady, if there is a place and time for our kids to stim and be themselves, it's today and NOW!" She smiled uncertainly and walked away.
My big embarrassment (for me, as a parent, not a member of the autism community) was that Bay was acting like such a jerk, no less than 13 people asked me how did I deal with have two auties. Do I medicate him, and my personal fave "how long has he been diagnosed?" I had to explain to those good people that as far as I can see, Bay is a NT, but very jealous of his brother's ASD. We're going through a rough patch right now and he was really showing his behind yesterday.
All in all though, yesterday was beautiful. Cold, but beautiful. I think I saw more of humanity than I ever dreamed existed in the world. The best part? Morgan was "with his people." Love that boy.
 |
| Pre-walk |
He became MORGAN. The Morgan that very few people really get to see. The one that toots like a train, grumbles and grunts low in his throat, tells Thomas stories non stop, and had a blast. He played with so many auties, it was just wonderful. All of those people, being themselves, in an environment where they could be themselves.
 |
| Walking and SINGING! |
I met a lot of lovely people yesterday and witnessed wonderful, sometimes heartbreaking, tender moments. I thought I might spend my day crying. For one, that a Walk like this is even needed breaks my heart a bit. But it breaks my heart no more than childhood cancer, adult cancer, AIDS, etc., walks do. It's here, we have to deal with it, don't go all Chicken Little with it, and COPE.
You could see "it" in a lot of our faces. I say "our" because my husband and I captured it for both of us, completely candid- the LOVE. During the singing of the National Anthem, there was a mother and her daughter standing in front of us. The daughter, who must have been nearly my age (almost 30), was flapping her left hand and starting to make a keening sound. I believe she was starting to have sensory overload. She was profoundly autistic and had her left hand's fingers arched back at such an angle I honestly wondered how they didn't break. Then, her mom did "the beautiful thing." She took her daughter's hand (the left one) and converted the flapping and arching fingers into a waving motion. The autistic woman went from looking like she was going to have a meltdown to looking as if she were directing a beautiful concert; a smile came upon her face. I cried.
I walked up to the mother after the Anthem was over to tell her "what you just did for your daughter was beautiful. The world needs more parents like you." She, too, had tears in her eyes and said, "We can't help but love them, can we? They're only our children once." That statement alone made me tear up even more.
 |
| "They're only our children once." How true. Morgan and his daddy. |
I love my son, no matter what, as do (I hope) all of those parents there yesterday. But you could see another "it" in a lot of their faces: the agony, the stress, the pure anger, almost malice, and the "I'm not coping, I'm going through the motions of having an autistic person amongst me" in their faces. Thing is, a lot of those parents had kids that seemed a lot like my child. These weren't the parents who had kids in strollers at the age of 10, who had non verbal children- they had high spirited, highly intelligent children that wouldn't, for the lack of a better term "shut up," lol.
That's what killed me. The ones who seemed, to an outsider, to have it "the worst" smiled the most.
My family and I walked for a little boy who loves trains. He was singing his Thomas the Tank Engine songs, telling the stories, talking about anything and everything, petting the dogs people brought, trick-or-treating along the path (great idea, Autism Speaks!!), tooting and beeping, and NO ONE CARED! I loved it.
 |
| With the boy I walk for, walking with me |
 |
| The nice man who took this chopped off Bay's head- whoops. |
I had to laugh at one woman who crawled her kid's butt for slapping one of the AS signs. He was clearly stimming his happy little behind off and I had already shooed him away from the sign, as I was taking pics of all of the signs. She apologized for her son's "behavior" and I outright laughed saying, "lady, if there is a place and time for our kids to stim and be themselves, it's today and NOW!" She smiled uncertainly and walked away.
My big embarrassment (for me, as a parent, not a member of the autism community) was that Bay was acting like such a jerk, no less than 13 people asked me how did I deal with have two auties. Do I medicate him, and my personal fave "how long has he been diagnosed?" I had to explain to those good people that as far as I can see, Bay is a NT, but very jealous of his brother's ASD. We're going through a rough patch right now and he was really showing his behind yesterday.
 |
| Pre-walk, bay getting a lecture on how to behave. Already had five people ask about his "autism." I actually told someone he just had "gingeritis." |
All in all though, yesterday was beautiful. Cold, but beautiful. I think I saw more of humanity than I ever dreamed existed in the world. The best part? Morgan was "with his people." Love that boy.
Wednesday, October 17, 2012
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?
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?
Wednesday, October 10, 2012
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?
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.
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