Ever since Morgan was diagnosed, I've come across this attitude from some parents, teachers, and other people of him not being "autistic enough" because he now speaks. Or, the fallback response of "but he seems so high functioning!" from pretty much everyone.
I feel, sometimes, as if it says, "Oh, he's autistic, but just a smidgen. You got lucky!"
I don't think that anyone means harm by this. But by saying my son is so high functioning, a term that really does nothing to describe him in any way, negates most of the struggles he has, I think.
It negates that he would rather spend time with his trains than people. And can recognize a train before a person. And hold a conversation about a train easier than he can hold a conversation with a person about his day.
It negates the hours of therapy, work, and the difficulties he still has with understanding the world outside his cocoon. Or even the cocoon itself.
It negates the several pages long IEP he has with accommodations that I've fought hard to get for him in the last few years.
It negates the fact that he still, at age nine, cannot tie his shoes, needs multiple prompts and help for hygienic issues, and dressing himself properly.
It negates that, even though he can Google "Bachmann Thomas," he's reading below grade level and needs quite a bit of help in most areas of academia.
It negates his bolting and eloping into traffic on occasion, which is scary as hell.
It negates him giving out his newly acquired personal information to perfect strangers and inviting them over. While we're in New Orleans. In bathrooms.
That's where my mind goes when I hear "high functioning" when addressed toward my son, whom I never let out of my sight.
The term "high functioning," as one of my autism mom friends put it to me, indicates that "they don't really know what your kid has been through, where they're coming from, and now they're slapping a random label on your kid because that kid can read a bit, write some- with help, and talk. Oh, and can convey thought? Yeah, makes perfect sense!" She and I agree that while it shouldn't feel like a slap in the face, it does. Like Morgan, her daughter speaks in scripts a lot of the time. Our two children are fairly different, but very much alike.
When I'm around some of my other autism moms with their children who have been labeled "low functioning or moderately functioning," I feel guilt. Those moms don't treat me any differently because of my child's label, and none of us really discuss those labels, but for me, those labels are hanging over our heads, like a thought bubble.
I want to burst that bubble with a pin. Our kids parallel play next to each other and are usually fine.
But still, I feel as though I must justify Morgan's autism in some way. My friends never ask me to or make me feel like I'm being put on trial like others do- they have great "A-dar." They see him bouncing, flapping, hear him scripting, note the lack of eye contact, etc. I just think that they're surprised when he hugs (which is nearly a stim for him) or wants to kiss them.
Then there's me. Am I autistic enough? The DSM-5 and my doctor think so. My husband and the majority of my friends who have spent significant amounts of time with me think so. Yet, if I say I'm autistic, people are quick to point out I function, which is laughable.
I function on my own level, which changes daily, as does Morgan's. Some days are better than others. There are days when I cannot take care of myself well because it eats up whatever tokens I have. I save up my energy for the kids when they come home. I'm laconic, withdrawn, and anxiety ridden (let's face it, I'm always anxiety ridden).
Then there are days when I put on my best face, go out, do all the things I can do, and come home so drained I can't see straight. I'm tapped out. I've had to interact too much. I can pretend to enjoy it, and sometimes I even really do, but damn. It's hard.
So... how high functioning is that? What kind of functioning is that? Is it because I live in a home with my husband and two children that I'm HF? Would it matter that I'm not sure if I could do this without my husband's help and freely admit it?
When you ask about or address functioning levels, be it toward children or adults, be careful, please.
They're relative and change daily, weekly, or monthly. They really don't matter and don't convey the bigger story at all. They're not able to prove autism "credentials" or anything of that sort. For some, all they do is slap someone in the face.
Perhaps ask instead how the person is doing. Or how how far they have come. Don't assume to know the full story when you've been on board for barely a chapter.
Showing posts with label autism children. Show all posts
Showing posts with label autism children. Show all posts
Sunday, January 26, 2014
Friday, October 11, 2013
Sleepover Night
When we lived in Tennessee, the boys had the entire top story of our house to themselves. Each one had a room on one end with a tiny bathroom in the middle.
Sometime around the end of summer between kindergarten and first grade, Morgan began to complain of nightmares. They really horrified him. The descriptions horrified us. His behaviors during the day had us all scared, too.
Somehow, I think Bay knew the solution before we did.
During Morgan's rough time in first grade, Bay's hero worship of his brother hit an all time high. Not only was Morgan the "bestest," but he had a super power called autism, too? Cool. But Morgan was having nightmares, still. He was being bullied.
I would come upstairs during the nights to check on them and find Bay snuggled up in his brother's bed across the hall. I knew it disturbed Morgan's sleep, so I would move him back to his own smaller bed. But by morning, I would find Morgan grumpy and complaining that his brother had not only crept back to his room, he had also staged an all night rager to boot and kept him up.
"Look," I told them, "only weekends are for sleepovers. Bay, you have to stay in your own bed and let Morgan sleep."
Morgan didn't like this idea. His bed was his bed. Why in the world would he share it with the ginger?
But we... did some test runs. First, it was that Fridays were "sleepover nights." I would allow Bay to bring "Oafie," named after his older brother's bear Oaf, and wiggle in beside his brother. They would watch a movie in bed, maybe eat some junk food and go to sleep. I would then move Bay back to his room.
After a couple of weeks, Morgan was looking forward to "sleepover night." Then Saturday was added as another sleepover night.
Morgan's nightmares, while they didn't stop, died down. I think knowing that Bay was there to help him slay the boogieman helped with that.
I would still hear the pitter patter of my youngest son's feet across the ceiling above as I laid in my bed during the week, but I would get up, redirect him, and wouldn't have to make so many trips back upstairs.
Morgan learned the days of the week because of sleepover nights, so did Bay. When we moved to Louisiana, we took a three bedroom apartment. We worried about them sharing a room, until the solution of bunk beds was pointed out.
Would sleepover nights be canceled since they shared a room? Oh no... they are still, after a year of living here, very much alive. The boys look forward to them- a lot.
They are each other's best friends. I'm so thankful for that.
Sometime around the end of summer between kindergarten and first grade, Morgan began to complain of nightmares. They really horrified him. The descriptions horrified us. His behaviors during the day had us all scared, too.
Somehow, I think Bay knew the solution before we did.
During Morgan's rough time in first grade, Bay's hero worship of his brother hit an all time high. Not only was Morgan the "bestest," but he had a super power called autism, too? Cool. But Morgan was having nightmares, still. He was being bullied.
I would come upstairs during the nights to check on them and find Bay snuggled up in his brother's bed across the hall. I knew it disturbed Morgan's sleep, so I would move him back to his own smaller bed. But by morning, I would find Morgan grumpy and complaining that his brother had not only crept back to his room, he had also staged an all night rager to boot and kept him up.
"Look," I told them, "only weekends are for sleepovers. Bay, you have to stay in your own bed and let Morgan sleep."
Morgan didn't like this idea. His bed was his bed. Why in the world would he share it with the ginger?
But we... did some test runs. First, it was that Fridays were "sleepover nights." I would allow Bay to bring "Oafie," named after his older brother's bear Oaf, and wiggle in beside his brother. They would watch a movie in bed, maybe eat some junk food and go to sleep. I would then move Bay back to his room.
After a couple of weeks, Morgan was looking forward to "sleepover night." Then Saturday was added as another sleepover night.
Morgan's nightmares, while they didn't stop, died down. I think knowing that Bay was there to help him slay the boogieman helped with that.
I would still hear the pitter patter of my youngest son's feet across the ceiling above as I laid in my bed during the week, but I would get up, redirect him, and wouldn't have to make so many trips back upstairs.
Morgan learned the days of the week because of sleepover nights, so did Bay. When we moved to Louisiana, we took a three bedroom apartment. We worried about them sharing a room, until the solution of bunk beds was pointed out.
Would sleepover nights be canceled since they shared a room? Oh no... they are still, after a year of living here, very much alive. The boys look forward to them- a lot.
 |
| Sleepover, last night. Sometimes we make a fort, too. |
They are each other's best friends. I'm so thankful for that.
Tuesday, July 9, 2013
Storms
Our days are sometimes complete crap shoots. We wake up and have the schedule. It's there and waiting. In this house, Monday though Friday, we follow the damned schedule. Even with the schedule, nothing can really be predicted. We bump into people in the outside world. Anxieties about the future lurk. Setbacks happen, they always happen. But I've got this.
I've been wrong before.
Sometimes, two hours go by and it seems like everything is different but the surroundings haven't changed.
This morning was bright and sunny. No clouds. Perfect and hot. I took Morgan to school and we chatted, sang along to songs. He seemed happy, content and excited to be going to his reading program. He was goofing off. We posed for a silly picture before he headed off.
Two hours later, I picked up a completely different child. He didn't recognize my car, even though his therapist was steering him toward it and I was waving. His functional (as in, conversational) expressive language had shut down. Scripted speech only and that was coming in two word snatches. He was so stimmy. Oh so stimmy. He was bouncing up and down like Tigger.
He said he had "a pain" and pointed at his head, so I figured it was headache. When I asked, he started crying. I called his dad, who wanted to talk to him. By then, Morgan's speech was incoherent, but the crying had stopped.
I examined his pupils, gave him some water and asked some questions, none of which he could answer. I knew we are out of Motrin, so I'd have to stop by the store on the way home. God, the store. I hate the store. I hate bringing Morgan into stores when he's like this. Not because of how people might react to him, but because of how painful I can see this experience is for him.
I told Morgan the four steps we had to take in the store: return the movies to Redbox (okay, I could have skipped this one, but he was kind of calming down, it's quiet over there and he likes hitting the "return" button), grab some Motrin for him, pick up sunscreen, and check out. Redbox was easy. The store wasn't crowded. My hopes went up, slightly. We went to the medicine area to get Motrin, everything's fine. Sunscreen was a breeze. Morgan wasn't talking still, but he was humming, chugging, chuffing, whistling and bouncing around. He was touching all the things!
Then, somehow, he ran out of steam. He lost his little bubble of happiness he had going right before the checkout. My giant of a boy needed to deflate, it seemed. He just kind of slumped down on the floor, taking me with him, sitting, and began to cry great, huge sobs. His fingers were in his ears, his eyes looked scared, and he couldn't tell me what exactly had made him feel this way.
If people stared and looked, I didn't notice or give a damn. He's my son, he was hurting, and he wanted his mom. It took me to a time when Morgan couldn't talk and cried a lot. When all I could do was try to hold him and let the storm pass.
Within a few, or fifteen, minutes he decided it was time to go. He decided he wanted to help me checkout, so I let him. We came home and had lunch, me worrying the whole time.
He began speaking more again, in sentences, but all in scripts. He built a "roundhouse" out of the chairs in the living room. He lined up the trains along his floor in his room. He's licking his face- if he doesn't stop, it will be raw by morning. There's more, but this is what I'm comfortable telling about my son.
He's in the pool now. Calming down. I'm not there yet. I'm still worried about what made him upset in the first place. He's still scripting more than usual. Where did the kid from this morning go? What just happened? This was like going through a squall. Is there another meltdown coming? Can I get radar with this?
Tomorrow, we will again stick to the schedule and hope for a storm free day. I'll pack an umbrella just in case.
I've been wrong before.
Sometimes, two hours go by and it seems like everything is different but the surroundings haven't changed.
This morning was bright and sunny. No clouds. Perfect and hot. I took Morgan to school and we chatted, sang along to songs. He seemed happy, content and excited to be going to his reading program. He was goofing off. We posed for a silly picture before he headed off.
 |
| He won't stop making this face. |
He said he had "a pain" and pointed at his head, so I figured it was headache. When I asked, he started crying. I called his dad, who wanted to talk to him. By then, Morgan's speech was incoherent, but the crying had stopped.
I examined his pupils, gave him some water and asked some questions, none of which he could answer. I knew we are out of Motrin, so I'd have to stop by the store on the way home. God, the store. I hate the store. I hate bringing Morgan into stores when he's like this. Not because of how people might react to him, but because of how painful I can see this experience is for him.
I told Morgan the four steps we had to take in the store: return the movies to Redbox (okay, I could have skipped this one, but he was kind of calming down, it's quiet over there and he likes hitting the "return" button), grab some Motrin for him, pick up sunscreen, and check out. Redbox was easy. The store wasn't crowded. My hopes went up, slightly. We went to the medicine area to get Motrin, everything's fine. Sunscreen was a breeze. Morgan wasn't talking still, but he was humming, chugging, chuffing, whistling and bouncing around. He was touching all the things!
Then, somehow, he ran out of steam. He lost his little bubble of happiness he had going right before the checkout. My giant of a boy needed to deflate, it seemed. He just kind of slumped down on the floor, taking me with him, sitting, and began to cry great, huge sobs. His fingers were in his ears, his eyes looked scared, and he couldn't tell me what exactly had made him feel this way.
If people stared and looked, I didn't notice or give a damn. He's my son, he was hurting, and he wanted his mom. It took me to a time when Morgan couldn't talk and cried a lot. When all I could do was try to hold him and let the storm pass.
Within a few, or fifteen, minutes he decided it was time to go. He decided he wanted to help me checkout, so I let him. We came home and had lunch, me worrying the whole time.
He began speaking more again, in sentences, but all in scripts. He built a "roundhouse" out of the chairs in the living room. He lined up the trains along his floor in his room. He's licking his face- if he doesn't stop, it will be raw by morning. There's more, but this is what I'm comfortable telling about my son.
He's in the pool now. Calming down. I'm not there yet. I'm still worried about what made him upset in the first place. He's still scripting more than usual. Where did the kid from this morning go? What just happened? This was like going through a squall. Is there another meltdown coming? Can I get radar with this?
Tomorrow, we will again stick to the schedule and hope for a storm free day. I'll pack an umbrella just in case.
Thursday, April 18, 2013
But I want it, too
Bailey loves his older brother so much. "To the moon and back," we say. He does a lot of things to emulate Morgan. For a while, he even flapped, cut his eyes to the side when speaking, and imitated some of Morgan's vocal stims. He loves him so much, he told me today that he wishes he had Autism, too.
I asked him, "why?" Why would he want Autism?
"Because I want to be smart like Morgan and I love him. I want to be like him. But I don't want meltdowns, those look like they hurt," he said.
I contemplated how I would talk about this. I didn't want to put down Autism to my son because, to me, that would be to put down his brother. At the same time, I really wanted to be honest with Bailey and not spare that many details. I wanted to make him see that being Autistic isn't a picnic, just as being the brother of someone who gets so much attention isn't a picnic, either. Not to offend anyone, but this is what it is.
"Bay, you're smart, too. You don't need to be like anyone else because you're great being you."
I explained that while, yes, Morgan has an innate ability to discern math problems, find the details in some things, and remember the scripts to movies and shows, he also has some learning difficulties. For instance, he's in a special class for reading. We don't know if he'll ever be out of those special classes. We hope so, because that's the goal, but we just don't know.
"But if they're special, that means they're 'good,' right?" he asked. "Well, one would hope so and in this case, it looks that way, yes," I replied, "but there are 'special' classes all over this country which aren't doing what is best for those kids. You hear me speak about Special Education a lot? Well, I say it's 'special' because it's often overlooked. Those kids are often overlooked or treated badly. Bay, it keeps me worried."
We talked some about how Morgan's been bullied just by being Autistic. How, because of his stimming, scripting, and love of trains, he's been a target for jerks in the past (and present, but not so much). Bay's response was awesome. "Mommy, next year, Morgan and I will be in school with each other. Those kids won't mess with my brother. Know why? I'll go tell them 'Don't you mess with my brother or I'll tell Santa AND Jesus. Then I'll snatch you baldheaded!!'" The ginger spark plug has spoken, future bullies. You're warned.
I pointed out to Bailey today that he doesn't have to be Autistic in order to be smart or have meltdowns. He's already smart and he definitely has had meltdowns.
I know that was a lot for my five year old to absorb. He sat quietly, thinking... then he asked, "Am I special?"
Without missing a beat, I told him, "Of course. Everyone is special, sweetie. It's just that some people are special in different ways. You're my special redheaded kiddo. Morgan's my special brown haired kiddo. He happens to be Autistic, you happen to not be. I love you both equally."
Morgan hung the moon, as far as Bay is concerned. I love that even though they fight, they are each others best friends. It worries me that I might be failing Bailey at times by concentrating so much attention on his brother. I worry that I spoil Bay to make up for the lack of time I might give him when his brother is home, which is kind of silly because he's with me all day. I worry about what I am teaching him about his brother.
Yesterday, when we picked up Morgan from school and a meltdown was ensuing in the carline... Bay reached over to his brother and said, "Morgan, it's okay... Mommy's here, Bailey's here. We're here. Cheer up, please? Hey, I gotcha an Icee!" He kept stroking his brother's hair and saying, "shhhh" as I was doing the same. He worked with me to calm Morgan down. It worked.
I asked him, "why?" Why would he want Autism?
"Because I want to be smart like Morgan and I love him. I want to be like him. But I don't want meltdowns, those look like they hurt," he said.
I contemplated how I would talk about this. I didn't want to put down Autism to my son because, to me, that would be to put down his brother. At the same time, I really wanted to be honest with Bailey and not spare that many details. I wanted to make him see that being Autistic isn't a picnic, just as being the brother of someone who gets so much attention isn't a picnic, either. Not to offend anyone, but this is what it is.
"Bay, you're smart, too. You don't need to be like anyone else because you're great being you."
I explained that while, yes, Morgan has an innate ability to discern math problems, find the details in some things, and remember the scripts to movies and shows, he also has some learning difficulties. For instance, he's in a special class for reading. We don't know if he'll ever be out of those special classes. We hope so, because that's the goal, but we just don't know.
"But if they're special, that means they're 'good,' right?" he asked. "Well, one would hope so and in this case, it looks that way, yes," I replied, "but there are 'special' classes all over this country which aren't doing what is best for those kids. You hear me speak about Special Education a lot? Well, I say it's 'special' because it's often overlooked. Those kids are often overlooked or treated badly. Bay, it keeps me worried."
We talked some about how Morgan's been bullied just by being Autistic. How, because of his stimming, scripting, and love of trains, he's been a target for jerks in the past (and present, but not so much). Bay's response was awesome. "Mommy, next year, Morgan and I will be in school with each other. Those kids won't mess with my brother. Know why? I'll go tell them 'Don't you mess with my brother or I'll tell Santa AND Jesus. Then I'll snatch you baldheaded!!'" The ginger spark plug has spoken, future bullies. You're warned.
I pointed out to Bailey today that he doesn't have to be Autistic in order to be smart or have meltdowns. He's already smart and he definitely has had meltdowns.
I know that was a lot for my five year old to absorb. He sat quietly, thinking... then he asked, "Am I special?"
Without missing a beat, I told him, "Of course. Everyone is special, sweetie. It's just that some people are special in different ways. You're my special redheaded kiddo. Morgan's my special brown haired kiddo. He happens to be Autistic, you happen to not be. I love you both equally."
Morgan hung the moon, as far as Bay is concerned. I love that even though they fight, they are each others best friends. It worries me that I might be failing Bailey at times by concentrating so much attention on his brother. I worry that I spoil Bay to make up for the lack of time I might give him when his brother is home, which is kind of silly because he's with me all day. I worry about what I am teaching him about his brother.
Yesterday, when we picked up Morgan from school and a meltdown was ensuing in the carline... Bay reached over to his brother and said, "Morgan, it's okay... Mommy's here, Bailey's here. We're here. Cheer up, please? Hey, I gotcha an Icee!" He kept stroking his brother's hair and saying, "shhhh" as I was doing the same. He worked with me to calm Morgan down. It worked.
Friday, April 12, 2013
Putting words in his mouth
This week, Morgan had a book report due on a non fiction topic. We'd had this coming for a while and two trips to the school's library were required because the first trip wasn't well... good. Morgan brought back a book that I would never deem "okay" for a report. I wrote a note to his teacher asking her to please have someone help him pick out something during library time last week. The two books he brought home seemed below his reading level (currently at entry level of 2nd grade- we're moving up!), but I decided to go with them because I didn't want to make Morgan uncomfortable.
So, we read the books. We chose one book for the report, which is pre-printed with questions. Morgan did very well, his handwriting was laborious and neat. The last question of the report, however, was what killed me.
"Did you enjoy this book? Why or why not?" Morgan said he did because it was easy. As in, easy to read. Okay... I asked him why would he pick an "easy" book to read when the instructions for the report were to choose a book at or above his reading level.
"Mom, I'm stupid. I can't read." I'm paraphrasing here, but that was the gist of the conversation we had. He'd chosen those books to read because he thinks he's dumb. He knows he has a hard time reading. He knows that it's difficult for him to comprehend or "know" (his word) what he's reading about. Morgan putting his insecurities into words made my gut clench.
Reading has been his biggest weakness since we can remember. In every IEP, there have been instructions for someone to read aloud tests, assignments, etc. Every night during homework, I read Morgan's instructions, reading assignments, English work, science if it's given... all of it. I make him read it, too, but he doesn't comprehend a lot of it. If it's spoken, he gets it. But he tells me that the words "swim" and tests show that his reading accuracy is 31 words per minute. History has shown that normally, I don't believe in most school issued tests, but in the case of reading, I might be willing to make an exception.
But he's not stupid. I was wondering where Morgan gets that from, because I won't even allow his brother or him to say, "that's so dumb/stupid" or "you're an idiot" in conversation. I kind of poked and prodded him and, turns out, something might have been said to him about him going to his Reduced Numbers Class (RNC) every day at school. The RNC class he attends is for reading. Morgan told me that the class is because he's "dumb" at reading. That makes me so sad. I corrected him and told him that the class is for him to read quietly in, to learn in an environment which isn't so noisy, and to be able to get more help since there are so few students. That seemed to make it better.
This little tidbit this week has made me think about what I'm teaching my son(s). With these extra supports, extra classes, lightened load here, overhearing me talk about Autism there, what am I teaching my son? Better yet, what are all of us teaching our kids about their self-worth? Are we teaching them that they are the best that they can possibly be or that they must work twice as hard as the other kids in order to not be "stupid" or "different?" We want functioning adults, but what's our definition? Are we accidentally emotionally crippling our children somehow by doing what we feel is best?
I get that by reaching for the best possible resources for Morgan, I really am helping him, please don't mistake this. I understand that by signing him up for a summer school reading program (Monday through Friday, 8:30am-10:30am, end of May until the end of July), I am trying to help him be the best Morgan he can be. However, I try to check myself by asking "When does he get to be a kid? Is this going to hurt him in the long run by sending the message that his best effort wasn't good enough? Am I not presuming enough competence?"
Am I the one who put those words into my son's mouth?
So, we read the books. We chose one book for the report, which is pre-printed with questions. Morgan did very well, his handwriting was laborious and neat. The last question of the report, however, was what killed me.
"Did you enjoy this book? Why or why not?" Morgan said he did because it was easy. As in, easy to read. Okay... I asked him why would he pick an "easy" book to read when the instructions for the report were to choose a book at or above his reading level.
"Mom, I'm stupid. I can't read." I'm paraphrasing here, but that was the gist of the conversation we had. He'd chosen those books to read because he thinks he's dumb. He knows he has a hard time reading. He knows that it's difficult for him to comprehend or "know" (his word) what he's reading about. Morgan putting his insecurities into words made my gut clench.
Reading has been his biggest weakness since we can remember. In every IEP, there have been instructions for someone to read aloud tests, assignments, etc. Every night during homework, I read Morgan's instructions, reading assignments, English work, science if it's given... all of it. I make him read it, too, but he doesn't comprehend a lot of it. If it's spoken, he gets it. But he tells me that the words "swim" and tests show that his reading accuracy is 31 words per minute. History has shown that normally, I don't believe in most school issued tests, but in the case of reading, I might be willing to make an exception.
But he's not stupid. I was wondering where Morgan gets that from, because I won't even allow his brother or him to say, "that's so dumb/stupid" or "you're an idiot" in conversation. I kind of poked and prodded him and, turns out, something might have been said to him about him going to his Reduced Numbers Class (RNC) every day at school. The RNC class he attends is for reading. Morgan told me that the class is because he's "dumb" at reading. That makes me so sad. I corrected him and told him that the class is for him to read quietly in, to learn in an environment which isn't so noisy, and to be able to get more help since there are so few students. That seemed to make it better.
This little tidbit this week has made me think about what I'm teaching my son(s). With these extra supports, extra classes, lightened load here, overhearing me talk about Autism there, what am I teaching my son? Better yet, what are all of us teaching our kids about their self-worth? Are we teaching them that they are the best that they can possibly be or that they must work twice as hard as the other kids in order to not be "stupid" or "different?" We want functioning adults, but what's our definition? Are we accidentally emotionally crippling our children somehow by doing what we feel is best?
I get that by reaching for the best possible resources for Morgan, I really am helping him, please don't mistake this. I understand that by signing him up for a summer school reading program (Monday through Friday, 8:30am-10:30am, end of May until the end of July), I am trying to help him be the best Morgan he can be. However, I try to check myself by asking "When does he get to be a kid? Is this going to hurt him in the long run by sending the message that his best effort wasn't good enough? Am I not presuming enough competence?"
Am I the one who put those words into my son's mouth?
Monday, March 11, 2013
How do I do this?
I get asked, or told, the well intentioned "How do you do it?" or "I don't know how you do it." a lot. It's a common refrain that special needs parents report hearing quite a bit. While I cannot speak for the rest of them, I can only answer for myself.
I just do it. My life can be like a Nike ad. I'm a parent and do what everyone else does, or should do. I do what is best for my children and try to do what is best for myself. Sometimes I fail on both accounts. My friends and I are probably not that different from our NT parent friends... well, maybe a bit.
I admit to not being perfect. I try to be, but I fail every single day. I say the wrong things to my kids and random strangers more often than I can count. I try to apologize, but sometimes I fail.
I cry, just like everyone else. Things are said and done which hurt. I try to reserve tears for behind closed doors, but sometimes emotions leak out in supermarkets and the car. I'm human. The first time I ever saw my son tie his shoes was a big deal and I cried. I used to not be this way. I used to see crying as a weakness. God, I was wrong.
I laugh, a lot. I laugh at things like those cat memes, ecards, sarcastic humor, and probably a lot of the things most other people do or don't. I love to hang out with people who make me laugh and that I can laugh with, such as my husband and my girlfriends. Chances are, my closest friends are people who have slightly twisted minds, love a good drink, and are just plain silly at times. My kids crack me up with their antics, though they don't always make other people laugh. That's okay.
I honestly have to take sedatives sometimes. I have an anxiety disorder and suffer from panic attacks. They used to be more frequent and my medications were more regular. A change in lifestyle has helped to manage my anxiety to a great degree. Indulging in writing, art, and books helps to relax me when I have the time. This blog is a great stress reliever and so is connecting with other special needs parents. There is never any shame in seeking help, make no mistake about that. Mental health is important. I've even seen a psychiatrist. This doesn't work for everyone, but it helped me.
I view a trip to the grocery store by myself as a mini-vacation. Don't laugh, especially once you find out that my grocery store is less than a mile down the road from my house. If a great song comes on the radio, I crank that up. Can we say concert? I pat myself on the back whenever I see that other parents do this, too.
On the weekends, and sometimes during the week, I drink wine. Apparently, I post on Facebook about this a lot, too, gauging from how often my friends put funny things on my wall. If I drank as often as I joke about it, I'd never get anything done. And no, I don't mix my meds with my wine, okay? That is both dumb and dangerous, so please, no calls to family services.
Sometimes, I lock myself in my bathroom, sit on the edge of the tub, and pin things to Pinterest. My kids think I'm on the toilet and this is only good for ten minutes, max. But, when things are stressful, it's a go-to measure. Don't judge. Hey, I used to have the kids go to a window and watch for Dora for a few minutes of peace. This, I found, is only good every other month. Little minds have big memories.
My husband travels a lot. I mean, a lot. There was a period of time when he was gone more than he was home. Sure, it made things hard as hell, but you know what? It wasn't the end of the world. Military spouses have it harder. I felt sorry for myself but it took an actual military friend pointing out how often his wife was alone during deployments to put this into perspective. Now, I just try to plow on through. I grin and bear it. It's what I do.
I meltdown as much as my Autistic kiddo or my NT preschooler do. I'm a big enough person to admit it. As a parent, you're supposed to stay in control. I'm supposed to do all this crap as both a NT parent and a special needs parent. Guess what? Sometimes I get incredibly friggin' overwhelmed and go batcrap nuts. I try to not do it around my kids, but life happens. This is why I try not to judge other parents when I see them yelling at their children. It just happens. You feel bad, apologize, hope you haven't scarred the hell out of them, and move on. This is life, it's not perfect.
As a special needs parent, I'm not so different from other parents, I guess. This is the only life I know. I don't have all of the answers to the universe. I am not deserving of any praise or a halo (mine melted as a kid, swear). There is no mystery in this. I just strive to do what is best and get through life without permanently scarring my kids, just like most parents.
I'm just trying to parent- with a few extra steps thrown in.
I just do it. My life can be like a Nike ad. I'm a parent and do what everyone else does, or should do. I do what is best for my children and try to do what is best for myself. Sometimes I fail on both accounts. My friends and I are probably not that different from our NT parent friends... well, maybe a bit.
I admit to not being perfect. I try to be, but I fail every single day. I say the wrong things to my kids and random strangers more often than I can count. I try to apologize, but sometimes I fail.
I cry, just like everyone else. Things are said and done which hurt. I try to reserve tears for behind closed doors, but sometimes emotions leak out in supermarkets and the car. I'm human. The first time I ever saw my son tie his shoes was a big deal and I cried. I used to not be this way. I used to see crying as a weakness. God, I was wrong.
I laugh, a lot. I laugh at things like those cat memes, ecards, sarcastic humor, and probably a lot of the things most other people do or don't. I love to hang out with people who make me laugh and that I can laugh with, such as my husband and my girlfriends. Chances are, my closest friends are people who have slightly twisted minds, love a good drink, and are just plain silly at times. My kids crack me up with their antics, though they don't always make other people laugh. That's okay.
I honestly have to take sedatives sometimes. I have an anxiety disorder and suffer from panic attacks. They used to be more frequent and my medications were more regular. A change in lifestyle has helped to manage my anxiety to a great degree. Indulging in writing, art, and books helps to relax me when I have the time. This blog is a great stress reliever and so is connecting with other special needs parents. There is never any shame in seeking help, make no mistake about that. Mental health is important. I've even seen a psychiatrist. This doesn't work for everyone, but it helped me.
I view a trip to the grocery store by myself as a mini-vacation. Don't laugh, especially once you find out that my grocery store is less than a mile down the road from my house. If a great song comes on the radio, I crank that up. Can we say concert? I pat myself on the back whenever I see that other parents do this, too.
On the weekends, and sometimes during the week, I drink wine. Apparently, I post on Facebook about this a lot, too, gauging from how often my friends put funny things on my wall. If I drank as often as I joke about it, I'd never get anything done. And no, I don't mix my meds with my wine, okay? That is both dumb and dangerous, so please, no calls to family services.
Sometimes, I lock myself in my bathroom, sit on the edge of the tub, and pin things to Pinterest. My kids think I'm on the toilet and this is only good for ten minutes, max. But, when things are stressful, it's a go-to measure. Don't judge. Hey, I used to have the kids go to a window and watch for Dora for a few minutes of peace. This, I found, is only good every other month. Little minds have big memories.
My husband travels a lot. I mean, a lot. There was a period of time when he was gone more than he was home. Sure, it made things hard as hell, but you know what? It wasn't the end of the world. Military spouses have it harder. I felt sorry for myself but it took an actual military friend pointing out how often his wife was alone during deployments to put this into perspective. Now, I just try to plow on through. I grin and bear it. It's what I do.
I meltdown as much as my Autistic kiddo or my NT preschooler do. I'm a big enough person to admit it. As a parent, you're supposed to stay in control. I'm supposed to do all this crap as both a NT parent and a special needs parent. Guess what? Sometimes I get incredibly friggin' overwhelmed and go batcrap nuts. I try to not do it around my kids, but life happens. This is why I try not to judge other parents when I see them yelling at their children. It just happens. You feel bad, apologize, hope you haven't scarred the hell out of them, and move on. This is life, it's not perfect.
As a special needs parent, I'm not so different from other parents, I guess. This is the only life I know. I don't have all of the answers to the universe. I am not deserving of any praise or a halo (mine melted as a kid, swear). There is no mystery in this. I just strive to do what is best and get through life without permanently scarring my kids, just like most parents.
I'm just trying to parent- with a few extra steps thrown in.
Monday, March 4, 2013
Different Autism Experiences And Why They Are Okay
*This post, like all on my blog, is written from a parent's perspective. It is not meant to infatilize Autism because parenting Autism is the primary perspective that I have.
I used to believe that motherhood, or parenthood, would be the great equalizer. The wonderful, hold that baby in your arms, end all, be all, equalizer which would end high school-eque cliquey divisions. I was wrong. With parenting comes more divisions such as breast versus bottle, co-sleeping versus crib sleeping, attachment parenting versus detachment (still have not figured this one out five years after my last baby), etc. There are, apparently, a lot of things which people can argue on how to be "the best" in the parenting game.
Then came Autism. Or rather, first came the signs of Autism, the ridicule of our parenting skills, the ridicule of our child (both are still occurring), and then the Autism diagnosis. "Finally," we thought, "a place with answers and a community." But I, and we, have been wrong before.
A dear friend of mine is fond of saying, "their Autism experience isn't my experience and that's okay." I've adapted this to my own way of thinking because it's so true.
For instance, we parents in the Autism community have a way of paying backhanded compliments to each other. Things like, "Oh, you're SO lucky he/she does that!" Yes, we might be lucky, but things like that reek of condescension, especially if it's related to verbal abilities. Your Autism experience is not identical to my Autism experience, but you know what? That's okay!
I do not feel that because Morgan is mainstreamed with a ton of supports that he is any less autistic than another child who is in a resource room or an Autism school. Yet, I've been attacked on message boards for not "properly" seeking out an education for my son. Just because someone feels that the best possible education for their child is different than my child's does not mean that I am doing something wrong. Their Autism is different than my Autism and that is okay.
A gluten free and casein free diet may work for some people who have stomach problems or allergies to those things. Guess what? Morgan does not have those issues and therefore did not benefit from going GF/CF. If this works for you, great. This is your experience and that's wonderful, but it is not mine.
I've been attacked for vaccinating both of my children (this happens outside of the Autism community, too). I have serious issues with this. I, personally, don't believe that vaccinations caused Morgan's Autism. However, I wouldn't outright attack someone else for believing that their child's Autism was caused by a biomedical issue. I do not like getting into debates with people who believe that vaccinations are responsible for their children's Autism because I feel as if no matter what I say, I'm wrong. Not all anti-vax people are this way, but I still steer clear of vax debates. Their Autism experience is not mine. That is okay.
My son has poor fine motor skills, but we have seen improvement with OT. If this does not apply to your child in either direction, that's fine. This is my Autism experience.
My son has zero feeding issues. I'm genuinely sympathetic if your child does. Honestly. My NT son refuses to eat half of the food I put in front of him, so while I cannot possibly understand food related sensory problems, I can at least empathize with how frustrating this scenario can be. However, if you write to me and ask me if my son has food problems, and I reply "no," please save the attacks. This is not our Autism, and this okay.
I've been spoken to with sarcasm because my son is toilet trained. I'm still taken aback by this. I have nothing but empathy for those parents whose children - no matter the age - are not toilet trained. However, I am not particularly comfortable discussing this either privately or publicly. Again, not my Autism.
Morgan has some self care issues. If your child does not, more power to you. This is our Autism.
Morgan has seizure problems, though they are not severe. I do not put us in the seizure bracket of things because I know how much worse things could be. I have seizures and they can scary, no other word for them. This is our Autism, if it is not yours, that is okay.
My son, identifies as - ugh, I hate labels, but for the sake of this blog.. - HF Autistic, but is not, in fact, considered a savant. I'm thrilled for you if your child or someone you know identifies as such. However, this is not my Autism experience. If you are a NT reading this, just stop asking parents of Austic children if our children are savants. Or telling us that our children are secretly "brilliant." Any one of us who have had to go through the process of testing our children's IQs and been made to feel like crap do not want to hear this. You are not making us feel better, you are being condescending.
If you have great Autism related insurance for your child, my hat's off to you. If you have never had to battle an insurance company, please tell me your secret! This is honest to God not my, or more than half of the community's experience, so please share. Please, for the love of all that is holy, don't put yourself on a pedestal and act as if parents, advocates, or whatever you want to call us who are seeking out a way to pay for our children's supports/therapies are lesser than you. Some of us are going deeply into debt, losing homes, and, in general, flipping out and wondering how to provide basic services for our children. If this is not your Autism experience, just keep it to yourself. This is one area where I'm not willing to be nice. I think that I would be willing to sell my soul in order for each Autist to be provided with services they need. End of story.
I do not use chelation, bleach enemas, hyperbearic chambers, and a host of other things that some use to "cure" Autism... I don't support any of those things, or things related to them. If you do, sorry, this isn't the blog for you. Not to be rude, but do a bit of reading through my blog, or look at the pages I support to the right; none of them support these things either. This is pretty much another area that I'm not willing to debate. Not our Autism, not on my blog, not on my page, either. Pestering me about them will get you nowhere. Thanks.
Not everyone will agree with me when I say that I seek to provide life skills, coping mechanisms, and yes, some therapies, for my kid and not "cure" his Autism. I want what I feel is best for Morgan and to me, that is to not make him feel as if he is "wrong" for being Autistic. I don't expect his Autism to go away or be miraculously cured so therefore, I do not seek a cure. However, though I snark at groups of people seeking said cures in private (it seems a little unreal), I try to not do it here (okay, so I just did it) on this blog or on my page. Yes, you can read through this blog and find places where I am/was mad at Autism, but part of being a parent is being a hypocrite. At least this is true for this parent.
We Autism parents take enough grief from society in how our children act, how people perceive us as parents, and how people view our children in general. Why is it we feel the need to attack each other? Is it jealousy? Spite? Yes, I am jealous, at times, of parents of NT children, though I have an NT child. I am jealous that those NT children do not appear to having learning difficulties, speech delays, fine motor skill problems, etc. I'm jealous that those children, and even my own NT child, will have experiences which Morgan will not. Sometimes, in my lowest points, I will rail privately and cry. Okay, maybe I do that on Facebook, too. But I don't attack other parents, at least I try to not attack other parents, especially not other special needs parents. They cannot help their child's neurology anymore than I can help Morgan's. They cannot help their child's ability to verbalize or not, toilet or not, etc. Attacking or crying about this does not help.
Is this a projection of our own fears of not doing something right? I cannot say that I have never privately nor publicly questioned someone's approach to parenting an Autistic child, or a NT child for that matter. I think that this is a natural part of being a parent, or even being human.
Part of life is to have differing opinions. Part of being in a community is to support each other, isn't it? The attacking within the Autism community really makes me wonder, at times, how much of a community we have.
I used to believe that motherhood, or parenthood, would be the great equalizer. The wonderful, hold that baby in your arms, end all, be all, equalizer which would end high school-eque cliquey divisions. I was wrong. With parenting comes more divisions such as breast versus bottle, co-sleeping versus crib sleeping, attachment parenting versus detachment (still have not figured this one out five years after my last baby), etc. There are, apparently, a lot of things which people can argue on how to be "the best" in the parenting game.
Then came Autism. Or rather, first came the signs of Autism, the ridicule of our parenting skills, the ridicule of our child (both are still occurring), and then the Autism diagnosis. "Finally," we thought, "a place with answers and a community." But I, and we, have been wrong before.
A dear friend of mine is fond of saying, "their Autism experience isn't my experience and that's okay." I've adapted this to my own way of thinking because it's so true.
For instance, we parents in the Autism community have a way of paying backhanded compliments to each other. Things like, "Oh, you're SO lucky he/she does that!" Yes, we might be lucky, but things like that reek of condescension, especially if it's related to verbal abilities. Your Autism experience is not identical to my Autism experience, but you know what? That's okay!
I do not feel that because Morgan is mainstreamed with a ton of supports that he is any less autistic than another child who is in a resource room or an Autism school. Yet, I've been attacked on message boards for not "properly" seeking out an education for my son. Just because someone feels that the best possible education for their child is different than my child's does not mean that I am doing something wrong. Their Autism is different than my Autism and that is okay.
A gluten free and casein free diet may work for some people who have stomach problems or allergies to those things. Guess what? Morgan does not have those issues and therefore did not benefit from going GF/CF. If this works for you, great. This is your experience and that's wonderful, but it is not mine.
I've been attacked for vaccinating both of my children (this happens outside of the Autism community, too). I have serious issues with this. I, personally, don't believe that vaccinations caused Morgan's Autism. However, I wouldn't outright attack someone else for believing that their child's Autism was caused by a biomedical issue. I do not like getting into debates with people who believe that vaccinations are responsible for their children's Autism because I feel as if no matter what I say, I'm wrong. Not all anti-vax people are this way, but I still steer clear of vax debates. Their Autism experience is not mine. That is okay.
My son has poor fine motor skills, but we have seen improvement with OT. If this does not apply to your child in either direction, that's fine. This is my Autism experience.
My son has zero feeding issues. I'm genuinely sympathetic if your child does. Honestly. My NT son refuses to eat half of the food I put in front of him, so while I cannot possibly understand food related sensory problems, I can at least empathize with how frustrating this scenario can be. However, if you write to me and ask me if my son has food problems, and I reply "no," please save the attacks. This is not our Autism, and this okay.
I've been spoken to with sarcasm because my son is toilet trained. I'm still taken aback by this. I have nothing but empathy for those parents whose children - no matter the age - are not toilet trained. However, I am not particularly comfortable discussing this either privately or publicly. Again, not my Autism.
Morgan has some self care issues. If your child does not, more power to you. This is our Autism.
Morgan has seizure problems, though they are not severe. I do not put us in the seizure bracket of things because I know how much worse things could be. I have seizures and they can scary, no other word for them. This is our Autism, if it is not yours, that is okay.
My son, identifies as - ugh, I hate labels, but for the sake of this blog.. - HF Autistic, but is not, in fact, considered a savant. I'm thrilled for you if your child or someone you know identifies as such. However, this is not my Autism experience. If you are a NT reading this, just stop asking parents of Austic children if our children are savants. Or telling us that our children are secretly "brilliant." Any one of us who have had to go through the process of testing our children's IQs and been made to feel like crap do not want to hear this. You are not making us feel better, you are being condescending.
If you have great Autism related insurance for your child, my hat's off to you. If you have never had to battle an insurance company, please tell me your secret! This is honest to God not my, or more than half of the community's experience, so please share. Please, for the love of all that is holy, don't put yourself on a pedestal and act as if parents, advocates, or whatever you want to call us who are seeking out a way to pay for our children's supports/therapies are lesser than you. Some of us are going deeply into debt, losing homes, and, in general, flipping out and wondering how to provide basic services for our children. If this is not your Autism experience, just keep it to yourself. This is one area where I'm not willing to be nice. I think that I would be willing to sell my soul in order for each Autist to be provided with services they need. End of story.
I do not use chelation, bleach enemas, hyperbearic chambers, and a host of other things that some use to "cure" Autism... I don't support any of those things, or things related to them. If you do, sorry, this isn't the blog for you. Not to be rude, but do a bit of reading through my blog, or look at the pages I support to the right; none of them support these things either. This is pretty much another area that I'm not willing to debate. Not our Autism, not on my blog, not on my page, either. Pestering me about them will get you nowhere. Thanks.
Not everyone will agree with me when I say that I seek to provide life skills, coping mechanisms, and yes, some therapies, for my kid and not "cure" his Autism. I want what I feel is best for Morgan and to me, that is to not make him feel as if he is "wrong" for being Autistic. I don't expect his Autism to go away or be miraculously cured so therefore, I do not seek a cure. However, though I snark at groups of people seeking said cures in private (it seems a little unreal), I try to not do it here (okay, so I just did it) on this blog or on my page. Yes, you can read through this blog and find places where I am/was mad at Autism, but part of being a parent is being a hypocrite. At least this is true for this parent.
We Autism parents take enough grief from society in how our children act, how people perceive us as parents, and how people view our children in general. Why is it we feel the need to attack each other? Is it jealousy? Spite? Yes, I am jealous, at times, of parents of NT children, though I have an NT child. I am jealous that those NT children do not appear to having learning difficulties, speech delays, fine motor skill problems, etc. I'm jealous that those children, and even my own NT child, will have experiences which Morgan will not. Sometimes, in my lowest points, I will rail privately and cry. Okay, maybe I do that on Facebook, too. But I don't attack other parents, at least I try to not attack other parents, especially not other special needs parents. They cannot help their child's neurology anymore than I can help Morgan's. They cannot help their child's ability to verbalize or not, toilet or not, etc. Attacking or crying about this does not help.
Is this a projection of our own fears of not doing something right? I cannot say that I have never privately nor publicly questioned someone's approach to parenting an Autistic child, or a NT child for that matter. I think that this is a natural part of being a parent, or even being human.
Part of life is to have differing opinions. Part of being in a community is to support each other, isn't it? The attacking within the Autism community really makes me wonder, at times, how much of a community we have.
Thursday, February 28, 2013
He's not a number
I often wonder if other parents with children on the spectrum - or with some form of learning disability - feel that gut wrenching awfulness whenever they get some form of test results on their child. The kind of tests that are not medical in nature, almost always coming from school. "Intelligence" tests, benchmark tests, report cards, other comprehensive evaluations...
With the exception of report cards, I think I've always had that sick feeling. That feeling of "so this is where you want to place him in the scheme of things?" No matter how many of those pieces of paper come into my house, it's punching me in my gut.
It shouldn't; it really shouldn't. Morgan is not some "well below level" on a piece of paper. He's an intelligent kid and anyone who spends time with him knows this. So what if standardized tests are not his thing? They aren't good for a lot of kiddos, neuro typically inclined or otherwise, right? So, why does this crap even matter?
I suppose it matters and upsets me because I know that someone, somewhere, is going to see my kid's score and think he's "less than" when I know good and damned well he's not. Someone, somewhere, might think that he's not capable of doing something when his teachers and I know that's not true. Someone, somewhere, might think that my completely wonderful boy doesn't deserve respect for what he's accomplishing because he didn't nail a test.
This morning I've been pouring over Morgan's IEP and the rest of his file. Every test result is in it. Every single upset in an IEP is there, peeking out. Every fight I can remember. None of those papers are representative of my child.
Maybe it's because I've been on guard for the last seven years of his life that things like this matter. I've wanted to protect him even more ever since a playground mom told me "You know, your kid ain't right." Yes, stupid people shouldn't get to me, but I have a fiery temper and she was one of many since then that could not see there is nothing wrong with Morgan wanting to sift sand through his fingers repeatedly to calm himself (it's better than what her kid was doing- snark), or peep like a train, or play by himself, or (now) introduce himself and tell someone they're pretty.
Maybe I'm selfish and just want him to prove the jerks, the so-called "experts" wrong. My psych books would tell me I'm projecting my fears and I know I am. I keep everything hidden from Morgan because I know very well what it's like to have someone tell you your best is not good enough. His best will always be good enough for us. It's the system that is not.
There are a lot of maybes. There are a lot of asinine statements I can make to myself or that others can make for me.
At the end of the day, though, Morgan's not a number any more than any other child. His intelligence, hard work, and dedication cannot be measured on paper. He works harder than any other child I know and seems to be happy. He loves school. He loves learning.
I won't ruin that for him or allow anyone else to do so. He's a child, not a number.
With the exception of report cards, I think I've always had that sick feeling. That feeling of "so this is where you want to place him in the scheme of things?" No matter how many of those pieces of paper come into my house, it's punching me in my gut.
It shouldn't; it really shouldn't. Morgan is not some "well below level" on a piece of paper. He's an intelligent kid and anyone who spends time with him knows this. So what if standardized tests are not his thing? They aren't good for a lot of kiddos, neuro typically inclined or otherwise, right? So, why does this crap even matter?
I suppose it matters and upsets me because I know that someone, somewhere, is going to see my kid's score and think he's "less than" when I know good and damned well he's not. Someone, somewhere, might think that he's not capable of doing something when his teachers and I know that's not true. Someone, somewhere, might think that my completely wonderful boy doesn't deserve respect for what he's accomplishing because he didn't nail a test.
This morning I've been pouring over Morgan's IEP and the rest of his file. Every test result is in it. Every single upset in an IEP is there, peeking out. Every fight I can remember. None of those papers are representative of my child.
Maybe it's because I've been on guard for the last seven years of his life that things like this matter. I've wanted to protect him even more ever since a playground mom told me "You know, your kid ain't right." Yes, stupid people shouldn't get to me, but I have a fiery temper and she was one of many since then that could not see there is nothing wrong with Morgan wanting to sift sand through his fingers repeatedly to calm himself (it's better than what her kid was doing- snark), or peep like a train, or play by himself, or (now) introduce himself and tell someone they're pretty.
Maybe I'm selfish and just want him to prove the jerks, the so-called "experts" wrong. My psych books would tell me I'm projecting my fears and I know I am. I keep everything hidden from Morgan because I know very well what it's like to have someone tell you your best is not good enough. His best will always be good enough for us. It's the system that is not.
There are a lot of maybes. There are a lot of asinine statements I can make to myself or that others can make for me.
At the end of the day, though, Morgan's not a number any more than any other child. His intelligence, hard work, and dedication cannot be measured on paper. He works harder than any other child I know and seems to be happy. He loves school. He loves learning.
I won't ruin that for him or allow anyone else to do so. He's a child, not a number.
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 |
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| Seemingly "odd" interaction - this was tickling, no Bay's harmed! |
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| Imitating Mommy |
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| 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!"
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| These boys are my <3 |
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.
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| 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.
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| 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 |
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| 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."
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| This is what Autism looks like |
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| This is also what Autism looks like, in our house |
Tuesday, January 1, 2013
Year End Stream of...Crap
Today wasn't a great day. For starters, I awoke to find what I thought was chocolate covered cherries by my Christmas tree. I even picked one up. Guess what? It was dog crap. Yep, that's how my super early morning started- with dog crap. Oh well, I thought.
Then, things just went... blah. I couldn't set anything to rights. So, therefore, I decided to hit a mental and physical (I was in pain due to an RA and lupus flare) "reset button." It lasted all of 20 minutes, but you know what my sweet moment was? My sweet, sweet, adorable, oldest child coming in and giving me "night, night" kisses. It was lovely. He thought I needed it. See there, Mr. Baron Cohen? That's called EMPATHY, ya jerk.
While I was laying in bed, thinking of all I needed to do, it occurred to me that I needed and wanted to write. I want to write more in the new year because I enjoy the hell out of it, even if five people read this thing. I ran through my mind all that has happened this year and believe me, a lot has. It would take a novella to describe all that has happened directly to me, but this is about Morgan and my life with him. Actually, I've written a lot about Morgan's major things lately, but I wanted to touch on the milestones again or the ones I've missed. So, here goes...
Morgan, this year, has learned to read! He cracks us up while we drive down the street by reading signs out loud. Sometimes, since we live outside of New Orleans, those signs aren't exactly "kosher," but we still laugh because he's reading. I love that.
We moved this year and Morgan, while he misses TN, loves his new home. It dawned on me not even two hours ago, that in the six months we've lived here, we've had more kids come over to play and vice versa with Morgan than we've EVER had in his whole little life. That's sad, but I'm wanting to celebrate it more. It means that the wonderful people we're surrounding ourselves with (if you're reading this, Mrs. S and Ms. A, especially!!!) are truly great people and that they don't judge our child for carrying the "A-card" like a disease or for being different. It helps that these two particular women I've mentioned are both funny as hell and love Morgan.
Morgan loves his new school. I mean, really loves it. He loves his teacher, has made friends, loves his paras (aides), and has buddied up to a male figure that "puts him to work" to make him feel special. His school is a great place and though we're still working out kinks, he's doing really well.
He's cutting his own food!
He put together his own Lego truck!!! I know, I know, I did that whole post about "what not to buy my autistic child," but my hubby and I caved and bought the kiddos the 405 piece tub of catch in the feet in the middle of the night Legos for Christmas. They begged, okay? Then, the day after Christmas, Morgan startled me with this:
I am not saying that this year has been all roses, because it has not. My son has watched me be sick more than healthy at times. I have a disorder that made him think on a few occasions that I was DEAD- that sucks. He still tantrums, but not much.
What I'm choosing to highlight in this current climate of "panic about autism leading to psychotic behavior" (thanks, media!!), are our great moments. We're in a good place. We're happy. We're healthy. Morgan's in a safe and welcoming environment. And man, I'm damned proud of my child.
Then, things just went... blah. I couldn't set anything to rights. So, therefore, I decided to hit a mental and physical (I was in pain due to an RA and lupus flare) "reset button." It lasted all of 20 minutes, but you know what my sweet moment was? My sweet, sweet, adorable, oldest child coming in and giving me "night, night" kisses. It was lovely. He thought I needed it. See there, Mr. Baron Cohen? That's called EMPATHY, ya jerk.
While I was laying in bed, thinking of all I needed to do, it occurred to me that I needed and wanted to write. I want to write more in the new year because I enjoy the hell out of it, even if five people read this thing. I ran through my mind all that has happened this year and believe me, a lot has. It would take a novella to describe all that has happened directly to me, but this is about Morgan and my life with him. Actually, I've written a lot about Morgan's major things lately, but I wanted to touch on the milestones again or the ones I've missed. So, here goes...
Morgan, this year, has learned to read! He cracks us up while we drive down the street by reading signs out loud. Sometimes, since we live outside of New Orleans, those signs aren't exactly "kosher," but we still laugh because he's reading. I love that.
We moved this year and Morgan, while he misses TN, loves his new home. It dawned on me not even two hours ago, that in the six months we've lived here, we've had more kids come over to play and vice versa with Morgan than we've EVER had in his whole little life. That's sad, but I'm wanting to celebrate it more. It means that the wonderful people we're surrounding ourselves with (if you're reading this, Mrs. S and Ms. A, especially!!!) are truly great people and that they don't judge our child for carrying the "A-card" like a disease or for being different. It helps that these two particular women I've mentioned are both funny as hell and love Morgan.
Morgan loves his new school. I mean, really loves it. He loves his teacher, has made friends, loves his paras (aides), and has buddied up to a male figure that "puts him to work" to make him feel special. His school is a great place and though we're still working out kinks, he's doing really well.
He's cutting his own food!
He put together his own Lego truck!!! I know, I know, I did that whole post about "what not to buy my autistic child," but my hubby and I caved and bought the kiddos the 405 piece tub of catch in the feet in the middle of the night Legos for Christmas. They begged, okay? Then, the day after Christmas, Morgan startled me with this:
 |
| Morgan showing off his "lorry."
|
What I'm choosing to highlight in this current climate of "panic about autism leading to psychotic behavior" (thanks, media!!), are our great moments. We're in a good place. We're happy. We're healthy. Morgan's in a safe and welcoming environment. And man, I'm damned proud of my child.
Tuesday, November 13, 2012
Ho, Ho, Hummmm
This marks the start of yet another holiday season where family and friends ask me what Morgan would like for Christmas. Yet again (6th year in a row!), I get to tell them "Thomas the Tank Engine trains" and send them a run down of the engines he doesn't have. I know to some, writing about this seems silly. To an autism mom, this makes perfect sense.
Auties have obsessions. Well, most of them do. My son does and I've written about his obsession with the demonic blue train before. My best friend and his god mother, Reese, got him started on the peeping train on his second birthday. I love you, girl. But honestly, I could KILL you sometimes. He really got into the Thomas and Friends brigade later that year and the obsession has never stopped. I mean never.
Sure, we've had our dalliances with the Cars characters (but really, unless they were lined up...?), he humored his brother (and, I swear, screwed with us) by sort of liking Optimus Prime, he loves books, and the tablets the boys' Granny gave them last year were probably the best gift ever. One thing always holds true: no Thomas = plenty of tears. Last Christmas, there was not a single Thomas in sight under that tree. No tears... for a little while.
I swear, my husband, mom and step-dad (holidays at the 'rents house) tiptoed around the subject and barely breathed for fear of upsetting the delicate balance established in our cosmos. Okay, maybe that was just me. Then, Morgan pipes up with the 'T" word. None of the engines he'd asked for had been under the tree. CRAP. Mom and I had actually looked for the dang things, but none were to be found in either of our small towns and NO WAY was I ordering online at double the price.
He was so upset, that I think it was his Grampa who finally took him to town and pick out some trains. I'm pretty sure that I hid away and cried that day. I felt like a bad mom for not giving my son the only damned thing he'd asked Santa for and for also feeling almost hateful towards my son and his engines. I think I just wanted for Morgan to appreciate what he had, but in his mind, all he could focus on what was he didn't get- the only thing he'd asked for. Actually, looking back, I'm a horse's ass and expected something that was entirely unreasonable. I put myself into the "those people" category. Even still...I really want to burn those freaking engines.
Then again, I also feel intense toward those that "don't get it." The "those people" category. Let me lay this out for you.
You, there! That box of K'nex you gave my kid? Either his little brother plays with it (the "acceptable" way- actually building things) or Morgan uses it as "cargo" for his trains. That is, after he's done happily running his fingers through the box of pieces over and over again.
That super complicated (by this, I mean over 25 or 35 pieces) jigsaw puzzle you gave Morgan year before last (or hell, the one I gave him for his bday last year- made for age 3+) because it was "cool and age appropriate?" Yeah, the dog or Bailey probably chewed it after Morgan got frustrated and chucked it on the floor or under his bed.
That gazillion piece "age appropriate" mad scientist kit? Oh, well done and seriously awesome. However, my son couldn't read at the time and still has great difficulty with comprehension. I love that your son can. I'm not even jealous anymore about that (well, not most of the time). Morgan has a lot of fine motor skills deficits and handling all those tiny pieces was so frustrating, he threw the damned thing in the trash before I had the chance to do so or to help him set it up and take pictures.
I get that unless you're there, you don't know. So ASK.
My point, all five readers, is that if you have someone on the spectrum in your life, throw the stupid rule book out when it comes to gift giving. Shut your mouth when the child is still into something that he or she was into five years ago. Don't assume, you know what that does.
Ask the parents what their child would want! Please, don't be offended if they ask you for a return receipt. We are raising completely different children than you are and frankly, if it comes down to making our kids happy or catching a sharp object in a foot due to an ill thought out gift, I think you know which we would choose- the same that you would.
I didn't write this to piss anyone off. I am writing this to offer my own experience and perspective. Holidays can be overwhelming for anyone. But when you're on the spectrum or have a kid on the spectrum, and are trying to manage any of the things that go along with the holidays... it gets, well, emotional. At least it does for me.
Remember what the holidays are about for kids. They could give a rat's behind about half the things we do. So, in that light, stop sweating that little "Age *+" down in the corner, buy what the kid likes and put a smile on the child's face. It's freaking Christmas. Oh, and when all else fails? My kid loves gift cards.
Auties have obsessions. Well, most of them do. My son does and I've written about his obsession with the demonic blue train before. My best friend and his god mother, Reese, got him started on the peeping train on his second birthday. I love you, girl. But honestly, I could KILL you sometimes. He really got into the Thomas and Friends brigade later that year and the obsession has never stopped. I mean never.
Sure, we've had our dalliances with the Cars characters (but really, unless they were lined up...?), he humored his brother (and, I swear, screwed with us) by sort of liking Optimus Prime, he loves books, and the tablets the boys' Granny gave them last year were probably the best gift ever. One thing always holds true: no Thomas = plenty of tears. Last Christmas, there was not a single Thomas in sight under that tree. No tears... for a little while.
I swear, my husband, mom and step-dad (holidays at the 'rents house) tiptoed around the subject and barely breathed for fear of upsetting the delicate balance established in our cosmos. Okay, maybe that was just me. Then, Morgan pipes up with the 'T" word. None of the engines he'd asked for had been under the tree. CRAP. Mom and I had actually looked for the dang things, but none were to be found in either of our small towns and NO WAY was I ordering online at double the price.
He was so upset, that I think it was his Grampa who finally took him to town and pick out some trains. I'm pretty sure that I hid away and cried that day. I felt like a bad mom for not giving my son the only damned thing he'd asked Santa for and for also feeling almost hateful towards my son and his engines. I think I just wanted for Morgan to appreciate what he had, but in his mind, all he could focus on what was he didn't get- the only thing he'd asked for. Actually, looking back, I'm a horse's ass and expected something that was entirely unreasonable. I put myself into the "those people" category. Even still...I really want to burn those freaking engines.
Then again, I also feel intense toward those that "don't get it." The "those people" category. Let me lay this out for you.
You, there! That box of K'nex you gave my kid? Either his little brother plays with it (the "acceptable" way- actually building things) or Morgan uses it as "cargo" for his trains. That is, after he's done happily running his fingers through the box of pieces over and over again.
That super complicated (by this, I mean over 25 or 35 pieces) jigsaw puzzle you gave Morgan year before last (or hell, the one I gave him for his bday last year- made for age 3+) because it was "cool and age appropriate?" Yeah, the dog or Bailey probably chewed it after Morgan got frustrated and chucked it on the floor or under his bed.
That gazillion piece "age appropriate" mad scientist kit? Oh, well done and seriously awesome. However, my son couldn't read at the time and still has great difficulty with comprehension. I love that your son can. I'm not even jealous anymore about that (well, not most of the time). Morgan has a lot of fine motor skills deficits and handling all those tiny pieces was so frustrating, he threw the damned thing in the trash before I had the chance to do so or to help him set it up and take pictures.
I get that unless you're there, you don't know. So ASK.
My point, all five readers, is that if you have someone on the spectrum in your life, throw the stupid rule book out when it comes to gift giving. Shut your mouth when the child is still into something that he or she was into five years ago. Don't assume, you know what that does.
Ask the parents what their child would want! Please, don't be offended if they ask you for a return receipt. We are raising completely different children than you are and frankly, if it comes down to making our kids happy or catching a sharp object in a foot due to an ill thought out gift, I think you know which we would choose- the same that you would.
I didn't write this to piss anyone off. I am writing this to offer my own experience and perspective. Holidays can be overwhelming for anyone. But when you're on the spectrum or have a kid on the spectrum, and are trying to manage any of the things that go along with the holidays... it gets, well, emotional. At least it does for me.
Remember what the holidays are about for kids. They could give a rat's behind about half the things we do. So, in that light, stop sweating that little "Age *+" down in the corner, buy what the kid likes and put a smile on the child's face. It's freaking Christmas. Oh, and when all else fails? My kid loves gift cards.
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.
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