What It's Like

*Editor's note: The following was a conversation I was lucky to be privy to between my two sons, over the course of about twenty minutes. I've omitted several things for privacy, and cleaned up others, while trying to keep the language as close to the original conversation as possible. I received both sons' permissions before publishing this. 

"Morgan," Bay asked, "what's it like to be you?"

The question was asked as the boys finished dinner and I sat away from them, reading a book. I marked my place and quietly listened.

"Well," Morgan said, "it's confusing. You know I'm an autism kid. Noises are big. Clothes have to be soft. Smells are hard." He went back to eating, apparently satisfied with his answers.

"But, Morgan, what's it like? Why is it confusing to be you?"

Morgan took a deep breath, pondered this question some, and then said, haltingly, "People think I don't listen, but I do. Teacher always says, 'Pay attention, sweet boy!' but I am paying attention. It's hard. I pay attention to everything, all at the same time. I can't pay attention to just one thing... I can't always use my words."

"There are all of these sounds and thinks (thoughts) and I can't just pick one. Can you?"

I sat, stunned. Morgan's never talked to his father or I like this. He's never really been able or rather, we've never been able, to get him to talk to us like this.

"Morgan," his brother started, "why do you script? Why do you use Thomas so much and love him so much?"

"I just do. The stories are in my head, 'cause I'm a narrator. I love Thomas, he's my friend. He's a very useful, cheeky engine."

"But you know, other kids don't like him as much, right? I mean, aren't you worried about bullies? Why do you talk like that (meaning nasally quality/monotone and scripting)?"

"I don't care if they don't like him, Mama says he's mine to love. Mama and Daddy say bullies just don't get hugged enough. I told you- I talk like this 'cause Jesus made me this way. Now, stop being a bossy boiler or this conversation is over!" (note the script)

Me: "Morgan, is there anything that's really hard for you?"

"Yeah, people when they give me too many directions. That's hard." Having my own struggles with this, I agreed with him. "Going new places used to be bad, but sometimes it's fun now. But not too much. Rounding (numbers). Noise. Making people understand me."

"Haircuts used to be really hard, right?"

"Yep, but they're not so bad now. The hairs still feel like poking on my skin, and I'm scared my ears'll be chopped off." "Mama won't cut your ears off-" "But I feel the scissors coming in! My brain tells me my ears are in danger and I need to yell!"

Me: "What would you make people understand?"

"I need to chuff (when he makes train noises and moves his arms in a circular motion, bent at the elbows). Ya know, trees stim? I'm a good boy and really useful. Don't talk about me in front of me. Kids shouldn't make fun, the grown ups, either. It's mean. People should understand people." I started tearing up.

Bay: "What's easy for you? You're good at lots."

"Making breakfast (he makes English muffins with cream cheese every morning for himself). Thomas stories. Tying my shoes. Making train sets. Snuggling. Smiling. Laughing. Swimming. Remembering the way."

Bay: "What's your school like?"

"It's big like a cave. It full of noise and echoes. I don't like the gym. It's confusing and fussy. Everyone is very busy all of the time and, when you're not busy, they give you more work. It's all work, work, work. Mrs. C's room is great. That's where I go for sensory breaks. I have the bean bags, the stimmy toys, all of that. It's quiet in there, I can tell train stories. Have you heard of the (slips into a Scottish accent) twins, Donald and Douglas?"

Bay: "How come you don't have friends come over?"

"Because this is my home. I have school friends. They're at school."

"Don't you want to play with other kids at home? Other than me?"

"Sometimes. It's not important to me. I like you, Bay."

"Any other questions?"

"Do you like being autistic, Morgan?"

"Do you like being redheaded?"

"Um, I don't know how to not be redheaded."

"Well, Bailey, I'm an autism kid. I don't know how to not be one. I like being me, even the hard parts."


I like that Morgan covered the important stuff.

The boys, hanging out of a Tardis. 

So Different: Tale of Two Kindergartners

I've mentioned several times throughout the school year how jarring it is to see Bay's work come home and compare, though I shouldn't, to where Morgan was at that same age.

The handwriting is different- Bay's is neat where Morgan's barely existed. The coloring is different- Bay is in the lines, where just this year Morgan finally colored an entire picture. The drawings- Bailey draws everything he sees or imagines and in great detail, Morgan still draws mostly in trains.

My children are so different, it's nearly painful. There is not a favorite son, there are just two different sons, as if they are each from different parents.

In Morgan's kindergarten, we were speaking of him being behind, not communicating, melting down, scripting, and playing "inappropriately." There was the fear of him not retaining information. Basically, there were a lot of deficits to work on and not a lot of strengths shown except his love of patterns and math.

In Bay's kindergarten, we have a child who gets into trouble for talking, who is easily bored and blows through assignments, and who "contributes a lot" to class discussions as his teacher told me after a talk about MLK went a bit sideways with me. He absorbs everything and starves for more. There is no talk of deficits unless it's about his speech impediment. He has a hard time making friends because he blurts out God knows what, usually something he's overhead me say.

I requested Bay be checked for gifted. It hurt, for some reason, to ask. I felt like I was betraying Morgan and all of those years of "well below benchmark," "well below average," and "borderline intellectually disabled" marked on so many tests.

I felt like I was slapping my special needs mom friends in the face somehow.

So I couldn't say anything when I was told that Bay "flunked" the test by 2% . In kindergarten, a child must make a 99% on the test to be considered gifted, Bay scored 97%. I'm not upset by any means, I'm kind of relieved. It means that he won't have advanced classes this year. It means he'll be "regular" a little longer.

But then I felt like I was shorting Bay for not being upset. Am I supposed to be upset? I was told that kids his age rarely score this high, they normally are in the lower to upper 80s, maybe lower 90s. That next year, he'll be retested and likely be placed in the gifted program.

I wonder if the woman telling me thought me strange for not being excited. Or if my terror showed on my face.

There is irony in having Bay tested for gifted while ordering Morgan's three year evaluation to be done for autism, and everything that entails- IQ tests, etc.

There is also pain in that I worry about both of them, but I worry for entirely different way. I like someone is pulling me in opposite directions and it hurts my heart. What happens if, by encouraging Bay, I hurt Morgan?

I'll always encourage my children to work hard and do their best. But what happens when their best makes the other one feel awful? And how do I manage this?

A Great Autistic Brother

Sometimes I think I forget to write about how great Morgan is to Bay.

Like last week...Morgan overheard me freaking out about Bay's birthday party and the lack of RSVPs, so he took it upon himself to invite "the good kids" in his class to Bay's party. He forgot to tell them the time, date, or place of the party, but he really wanted to make his brother feel special and that he thought to do so was great.

When he told Bay in the car, I caught my youngest son's eye in the rear view mirror. He'd teared up and was holding hands with his big brother, thanking him for being "the bestest big brother ever."

I asked Morgan why he invited his friends to Bay's party. He said, "Remember that party? The one where lots of people said they would come but only two did?.... that hurt my heart. I don't want Bailey's heart to hurt."  The party he spoke of was one where no one from any of his classes came, but two kids from his soccer team did. I didn't even know if he remembered; we don't speak of it. Clearly, he does remember and clearly, he doesn't want his little brother feeling that kind of hurt.

When Bay thought that he'd lost his kraken, Christmas, that same week, Morgan offered to lend him his extra Ted. People, that's huge. Ted is like an extension of Morgan's stimmy hands and soothes him. That he has another now doesn't matter- he was willing to spare him for a day or two until we could locate Christmas.

During Bay's birthday party at Chuck-E-Cheese (known commonly as the house of mouse hell), Morgan did really well. That is, until it came time to celebrate the actual birthday.

If you've never had the "rock star Chuck-E-Cheese" experience, count yourself lucky. Imagine four or five televisions blaring music, people yelling for you to sing, kids screaming in excitement, the birthday kids "rocking out" (see pics below), and a giant scary mouse wandering from person to person, giving out hugs, all in order to pump up the kids. It's sensory hell on earth.

During the rock out from sensory hell

Watching the show from a safe place

 So, while all of this was going on, one might wonder how Morgan was doing. He was just doing. He was stimming a lot by licking around his mouth, but he didn't want to leave. He said he wanted to "watch the show and Bay." But the noise hurt him, really badly. Morgan held tight to his daddy and Thomas held tight to him, with one hand over Morgan's exposed ear.

I kept asking Morgan if he wanted one of us to take him to a quieter place, but no, he wasn't having it. He wasn't missing out on his brother's birthday party- because "that's what big brother's do (his words)." So we let him be and let him stick it out, though we both knew he was in hell.

After, I high-fived Morgan for getting through that. He was sweaty and his face was chapped from all the licking he'd done. Bay told him, "Morgan, you did so great! Thank you!" Morgan grinned hugely and then when back to playing with his friend Baylee.

The point in all of this is that we as a community tend to put siblings of autistics on pedestals when they stand up to bullies, include their autistic brothers and sisters in activities, etc., but we rarely hear about how great autistics are for their neurotypical siblings. 

Morgan is the "bestest" big brother I could ever imagine for Bay. I would have Morgan 100 times over just to give Bay the experience of having a brother who is as sweet, gentle, and loving as his older brother. Morgan is never intentionally cruel to his brother, nor does he yell at or purposefully hurt Bay's feelings. If last week was any indication, Morgan goes out of his way to ensure that Bay's feelings aren't hurt. He blows the theory of mind concept out of the water and makes it invalid for me. 

To give credit where it's due: Morgan, so far, has been a great brother, friend, and role model for his brother. That's how siblings are supposed to be, no matter the neurology. 

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. 

Sleepover, last night. Sometimes we make a fort, too. 

They are each other's best friends. I'm so thankful for that.

Conversation With the Ginger

My little gingerdemon

My ginger kid kills me. I mean, really. I have the funniest and, sometimes, most bizarre conversations with this child.

Like today, when he told me how he was going to marry off his brother but still live with him.


"Mom," he said very seriously, "ya think when I get married I can find a girl for Morgan?"


"Um, Bay, you really should let Morgan pick out his own wife. It's sweet that you want to do it, but this is pretty 18th century nobility of you."

"But Mom, I love Morgan. I know what kind of girl he needs. Listen!"

"Uh, okay?" I was trying to take the kid seriously, alright?

"Good. Because here's the deal: she needs to be smart, funny, and love, love, LOVE trains. A lot. You know Morgan likes trains, right? And we're going to have a big train room in our house when we grow up."

"Wait a sec, Bay. You know that when you're married, you'll live on your own, right? And Morgan will live with his wife, right? That's is usually how this type of stuff works. Unless it's part of your religion or something."

"Well, Mom, I've gotta get Morgan married. Gotta get him married. But we're a team, me and him. And who's gonna drive me around? MORGAN, that's who. Morgan's the driver because he's awesome at Mario Kart."

I damn near choked. He thinks his brother is going to drive him around, huh? Okay...

"And Mom?"

"Yeah, doll?"

"You're still gonna cook. I like your cooking."

"So, let me get this straight, okay? You're gonna pick out Morgan's wife for him? And y'all are going to live to together with your wives. But he's the only driver. However, I'm the one cooking? Did I cover everything?"

"Nope! This is the best part! You're gonna do the laundry! And the cleaning! You're great at that!"

I laughed. This is kid is funny. And clearly off his rocker.

As I walked away to come type this, I heard, "Mom? You know what? You're really pretty. And smart. I want to marry a girl just like you." 

My gingerbaby

Meh. That kid isn't so bad. I'll keep him for a while.

Letting him sing

This morning, Morgan was super stimmy. We're talking bouncy house lovin', Tigger was doing shots of expresso and then jumpin' around, plus scripting/singing (loudly) every Thomas the Tank Engine song known to man and then some stimmy. It smells like the new school year around here, folks. 

I was expecting the usual moans and groans from Bay in the backseat. But no, there wasn't a peep. He even sang along a few times. I peered in my review mirror at a stoplight once and saw Bay covering his ears. I cringed, thinking that I would hear, "Mor-GAHN! Stop SINGING! PLEASE!" But... nothing.

We pulled up to the school and Bay told his big brother to have a great day. 

I dropped off the big kid, who went bounding off to his para (sorry for the lack of a warning text, Mrs. S!). I was told by Bay that he could still hear his brother singing (I hear ya, bud!), ran an errand and headed home. On the way, in between chatter about zombies and the park, there was a lull in the conversation. 

"Mama," I heard from the back, "Morgan's the best brother ever. He really needed to sing and bounce this morning, huh?"

"Yeah, sweetie, he really did. He needed to get that out before school."

"Does that hurt him? To need to do that?"

"Why don't you ask him?"

"Okay."

<Lull>

"I hope I'm as smart as my brother. He's the smartest brother ever." 

"I think that's pretty cool of you think."

"Morgan's so good, Mama."

"What do you mean?"

"To me. He's always good to me. He's not mean to me, even when he's sad or being mean to you. He's a good kid to other kids, even mean kids."

"Yes, he is a good kid."

"I'm always going to let him sing before school. I wouldn't want him to hurt. He could lose his awesomeness."

I'm going to admit that I pretty much melted right there because, well, my youngest son is great. He adores his big brother. 

A few weeks ago, during a rare blow up between them, I sat the kids down and told them to say one really great thing and one thing that bothered them about the other one- but to be respectful. Bay's, about Morgan, was that he didn't play enough with him and that he's the smartest boy in the world. That's huge, folks. 

Every time I think that Bailey might be dooming me for insanity, he turns around and surprises the pants off of me. He is, truly, a great child and wonderful brother to Morgan. 

I hope that they always stay this close. And that Bailey always wants his brother to sing. Even if Morgan does sing very loudly. And off key. 

This, too, I fear

Tomorrow, I pre-register Bailey for kindergarten. He's pretty excited, especially since we just found out (for sure) he's not due for another booster shot until the age of 11.  He's looking forward to meeting new friends, learning to read, furthering his writing, playing, crafts, etc.  

I'm looking forward, with zero shame, to being kiddo free for seven hours a day starting the second week of August. I've loved being a stay at home mommy, don't get me wrong, but I've been one now for nine and a half years (pregnancy counts!) and frankly, I want to be able to pee alone, work without interruption, clean something and it stay clean for longer than five seconds, and maybe, I dunno, do something not kiddo related.

My head was already swimming with how we'll adjust our budgets for double the field trips, class fees for God knows what, lunches (my kids are so brown bagging it next year), uniforms, school supplies, etc., when Morgan got into the car today. He had been sent to school with $10.00 for the book fair and an order form for the Legos book he was supposed to get for Bailey and him. I told his para he could spend his change, so not that surprisingly, he bought a Thomas the Tank Engine book, too, and a scented marker. He handed Bay the Legos book and said, "Here's your book, Bailey- it's a chapter book!"

I peeked at Morgan's book and saw it was a counting book. I know he bought it because it had the demonic blue engine on it, but the differences between the two choices were fairly stark. I mentioned to Morgan that he can read his book to himself with very little help from me and he told me that's why he bought it. He mentioned that the rest of his class, or "everyone" is already reading chapter books and other than a couple of other kids, he's the only one reading non-chapter books. I asked how that made him feel since I know reading is a sticky subject for him and he said it's okay, but he feels "left out."

I gave him a pep talk, like I always do when he feels down, but it tipped off a flood of anxiety for me. With Bailey entering school, how long will it be before he catches up to his brother... and then surpasses him? Bailey tested at a "above average" level on a few things when I had to have him evaulated through the state last fall (he was being tested for speech, you get all tests). He is already writing his name, numbers, letters, wanting to read, legibly drawing, speaking fairly articulately (As in, even with his lisp, his speech organization is clear.), and striving to learn things that Morgan doesn't know.

I'm scared.

If Morgan feels "left out" because of where his neurotypical peers are in school, how will he feel about his neurotypical brother?

Is it wrong of me to <almost> wish that Bailey never tests as gifted? To never be above grade level?

I want what is best for both of my children... does that mean I must forsake one's feelings for the others?

This is something that I've really been struggling with ever since it was made apparent that Morgan would be "behind" by whatever standards and that Bailey would be slightly above. Morgan is ahead in math, for now, and we hold onto that. I love that he loves that subject. It's his. However, in other areas, he's deemed "behind," "odd," and "age inappropriate."

I feel, sometimes, as if I must try to hold Bay back. That is so wrong. Each child, to my thinking, must be encouraged and gently pushed to the fullest of their potential. I don't act on that feeling because I know how wrong it is to feel that way. I add it to the laundry list of things I know I'm doing or thinking wrong. Ways I might be microscopically or hugely messing things up.

I'm just stating that whatever Bailey accomplishes, I hope that Morgan does, too. I hope that Morgan never thinks Bailey's academics comes as easily to his brother as riding a bike did. I'm scared shitless of that.

My two awesome kiddos.

Those of you with both Autistic and neurotypical kiddos, is this "normal?"

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.

 Bailey was one of the first children to ever really play with Morgan and vice versa. Before his brother came along, Morgan had had only two friends, fleetingly. He had no real interest in interactive play. But with his brother, well, they interacted. Bailey gave his older brother zero choice in the matter. Sometimes, quite oddly, if you didn't know what you were observing.

"normal" interaction

Seemingly "odd" interaction - this was tickling, no Bay's harmed!

Bailey, as are all children, is an individual. However, he is an individual who loves to imitate his mommy, his daddy, and his hero, Morgan. All of this started young...

Imitating Mommy

Trying to catch up

If Morgan is who gives us our cue on how to be better humans and parents, Bailey is who trains us in hilarity, hi-jinx, and what we should never say in the presence of children. Because he'll repeat it. He's funny. Oh, God, he's funny. His giggle, I used to say, is the purest thing I've ever heard. When he laughs, he laughs. From the earliest point on, he has always been cracking us up with antics just as hard as he's been making me want to tear my hair out. Like a couple of weeks ago when he said, loudly, "that lady looks like the HULK!" This was complete with arm gestures... in the middle of his ENT's office. We received from very dirty looks.  But it was still funny. *I did make him apologize... to which he said, "I'm very sorry, but Hulk looking people scare the bejesus out of me." Yeah, he's a handful.

Bay is a charmer with those big blue eyes and messy red hair. He squishes his nose and though it looks evil, it's still cute. Even when he's mad, he's adorable. It helps keep him from getting shipped to China.

Bailey is always up for a good time. Whether it's creating something like an art project, or an Angry Birds set, going to the park, or taking a road trip, the kid's always game.

Now, mischief the kid has in spades. We have back talk, we have pranks, we have run of the mill things that are normal for any five year old. However, he tried to cut the dog's hair a couple of weeks ago. When he and his brother dumped an entire box of Cheerios on the floor a long time ago, Bailey happily sat down, crunched them up and made an even bigger mess. His older brother was whooping in the background with the sweeper vac, trying to clean it up so that they wouldn't get into trouble. 

Bailey schemes and dreams. I love that. I love that he's so incredibly full of life that he causes me to shake my head in wonderment. Granted, those same schemes make me post statuses on Facebook that my friends apparently find hilarious. But hey, at least my frustration at raising a high spirited child serves as entertainment value.

The all time best thing my youngest son does, though, the thing that makes my heart swell with pride? He loves that big brother of his to the moon and back. He learned the days of the week because they have "sleepovers" with each other on Friday and Saturday and he counts down until then on the other days. Though he gets frustrated because Morgan really only likes to play with trains, THOSE are what he picks out for Morgan's birthdays and Christmases.

We're open and honest about Morgan being an Autist. He'll seek out SN kids to play with, especially if he notes that no one else is playing with them because his brother has taught him that kids are all just, well, kids. Morgan taught him right from wrong in a way that I couldn't have- he's led by example and by life experience. I don't think Bailey ever wants a child to hurt as badly as his brother has been, including himself- but that's another blog post. Bailey isn't always accepting of Autism because of the walls it can put in between him and Morgan, but he is of his brother. As much as a five year old can be. Boy, don't even let that child hear the "r" word, he'll school you on how bad it is. He can also probably give you a run-down on stims, tics, and the DSM's definition of autism.

He gets very upset sometimes because Morgan needs sensory breaks and cannot play with him. He doesn't always understand why his brother has to spend so much time doing those two or three pages of homework when it only takes the other kids a few minutes. But when the homework is done, when the sensory breaks are over, I know to back off and let those boys be boys together. To giggle hilariously as they sniff each other's armpits, build train sets, watch movies, and just.. be kids.

Another thing that Bay has done since Morgan was probably in kindergarten is take up for his big brother. We've had to pull him away from kids that he knows have bullied his brother just so Bay doesn't get in trouble or get his butt whipped, trying to whip theirs. I have to admit... I don't condone violence at all, but this fiery child of mine is willing to stick his neck out for his brother, that's kind of admirable. He's been doing it since he was three. Bailey has told kids, "If you can't be nice to Morgan, you can't be my friend." I think he sees the two of them as a package deal.

I'm so very thankful that I was blessed with two very individual boys who love each other so much.

Bailey's love for his brother is amazing. "You're the bestest big brother in the whole world!" is often heard in our home. Of course, so is "Mom, Morgan licked me!"

These boys are my <3

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.

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.

Thank God this year was different

Saturday marked the day I gave birth to a big, bouncing, 10.5lb baby boy. My first born. My Morgan. His birth marked the start of a journey I could never have predicted, one with more ups than downs, more twists and turns than straights and narrows, and more joy than heart ache.

However, this particular post is something painful for me to think about and even more so to write about. The reason I do so is because, as a mom in the autism community, I believe, it is something we've all been through to a degree at some point- exclusion of our child.

As Morgan would say, let me tell you a story...

Last year, we planned a huge party for our great kid. I mean HUGE. Sixty invites huge. I was coaching soccer and Morgan wanted to invited ALL of the children from his classes (he switched for math and reading, so there were three classes total) and the whole soccer team (ten kids). Three of the kids from the team had valid excuses for not coming. The rest, I'll never know. His classes? I have no idea. All I know is that we had about 20 RSVPs, I  prepped about 50 goody bags, and decorated my ass off.

Then came the day of the party. We prepped food! We stuffed and hung pinatas! Morgan stimmed SO hard, he was that excited.

Then two guests showed up. With the exception of a couple that was invited for the sole reason of having a preschooler (i.e.- entertainment for Bailey... plus, the drunken wife made an ass out of herself by telling anyone who would listen "people didn't come because they think he's retarded?!" yeah, wanted to slap her- especially when MY SON heard it)... that was it. Morgan, bless his heart, never noticed until it was time to open presents and a sweet little boy piped up "shouldn't we wait til the other kids get here?" After that, we ALL had to work hard to distract Morgan.


This year, however... this year, was what I wanted for my son last year. The doorbell wouldn't stop ringing for an hour. Kids were everywhere! Anyone who came and brought Morgan a present, gave him a Thomas the Tank Engine present! Morgan was beyond thrilled.

I reserved the movie theater here at the complex, knowing he would get two movies for his birthday,  and we had kids in there from 6 until 10. Then, the kicker:  Morgan had a SLEEPOVER. His special friend, B, her brother, D, cutie little Z, and Bailey were all crowded into the back bedroom watching Peter Pan. Well, Morgan was the only one up after about 15 minutes, lol.

I'm just thrilled that my son finally got a birthday he deserved. With kids. It went above and beyond my wildest expectations. I love humanity, when it shows up.

The Junior Advocate

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

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

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

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

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

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

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

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

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

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

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

I'm raising an advocate, not a jerk.

"B-O-M, Bomb, Mom!"

When Morgan, in soapy letters, spelled that out in the shower tonight, my first thought wasn't, "Cool, the kiddo's working on his spelling skills!" Because, after all, that would be a reaction of relaxed, non neurotic mother of a NT (neurologically typical, or neurotypical for those unfamiliar with the term) first grader who isn't constantly on edge and in fear that someone, namely a school official, is going to accuse her son of even odder behavior than he's already displaying. No, no... my first reaction was to say "Darlin' it's spelled, 'b-o-m-b,' and please don't ever say that at school. We're in something called a post 9/11 fearpocaplyse and ever since Columbine- that was way before you were born- teachers are pretty touchy about kids saying stuff like that." I peered into the shower as those huge eyes looked soulfully up at me and his husky voice said, "but I was just spelling, Mommy." I felt like crap. I also felt like Morgan, without even knowing, had summed up in one word my whole evening with him- bomb.

This whole school year has been one big bundle of nerves, tears, shakes, and pent up rage for me. Yet, I always wonder how is it for my son? How does he feel? He's gotten into the car many times near tears, once actually IN tears from bullies at recess, always exhausted looking, usually talking about feeling left out. He's rarely very happy, unless something super cool has happened- like the day he brought home a 103 on a spelling test. Because of his ASD, he can't read social cues very well. He thinks kids are making fun of him when they aren't, but when they are... he doesn't pick up on it. The day he was beaten up was awful, too awful for me to want to rehash.

He has a wonderful homeroom teacher that's his savior, as is his resource teacher. Due to state standards, kids are changing classes twice as day for reading and math based on their 'level.' Since they began changing classes, they've moved math from the afternoons to the morning and also made the kids eat lunch with their math class, not homeroom.To any young child, change can be hard. To Morgan, it's been as if the Earth has fallen of its axis.

I never know what to expect. As he's gone further into school, I've literally watched my child go deeper into a rabbit hole that I cannot follow him into. His stimming has gotten worse (stimming- self stimulating behavior)... Morgan was bouncing like a damned kangaroo this evening while cutting out shapes for math homework- work he didn't finish this week, for four days in a row. He's violently twitching his head, making his train sounds (since the age of age of 4, whenever nervous, stressed, or excited), pulling on his hair, twirling his hair, wanting to be petted, petting people, picking at his skin, licking his mouth/around his mouth so that it's staying so chapped it looks like he has burns.. you get the picture.

Then there's the suspected neural seizures that his former pediatrician wanted to put off getting checked out... the ones that first got brought up when he was THREE and I've been getting the brush off from every flippin' doc since then with them saying that he'll grow out of them, they aren't dangerous, no permanent brain damage, etc. They're scary! When you see your child recede into himself, just in midsentence, like there is no soul in him and no even a bucket of ice over his head will bring him to- that's terrifying. I used to yell, thinking that he was ignoring me. Now, I just want to cry. I'm dropping off paperwork this week for a new ped and just insisting on an appointment in the next week or two- then an EEG. Period.

I do find silver linings every day, I promise. I have to look hard sometimes, but I find them...and they're always found in Morgan.

Morgan had his first ever friend sleep over. By that, I mean Morgan made a friend. I also mean that Morgan also had said friend sleep over! This was Friday night. I hope he and the boy had a good time. It seemed like they did. The boy was confused about some of Morgan's behavior, like why Morgan wasn't wanting to play sometimes,why I had to remind him a lot that he had a friend here, to be a good host, etc., but I finally did what I thought was right and told the other boy that Morgan has autism. I gave him simple terms, told him that Morgan's brain is wired differently, but that he's still great. C, the little boy, agreed and said that Morgan's still his best bud.  Then he taught Morgan 'your mom' jokes. I hope Bay, my preschooler, didn't pick any of that up....

The silver lining today was getting Morgan to actually play with his K'nex set like he's "supposed" to. You know, build things? Not load 'logs' onto cargo cars for Thomas the friggin' Tank Engine and his friends? I hate that stupid hunk of plastic so badly and all of those other trains. I get that's Morgan's thing. I get that I'm part of the fuel in the obsession and this is part of his AS. But Lord, sometimes I want to pile every single one of those on top of his train table, douse everything with gasoline and light a match. Then dance around the fire like a crazy woman. Of course, that would be truly insane. But it does make me grin. Anyways, Bay cried because Morgan wouldn't 'really play' with him- all he wanted to do was watch Thomas and play Thomas trains.

Bay wanted that K'nex set, bad. I wanted Morgan to USE the set, bad. Then it dawned on me it was a fine motor skill therapy! Oh God, if I could get him to use his fingers to build things with tiny pieces- he could, I don't know, write neatly one day or tie his shoes!!!! It took coaxing, pleading, bossing, and nearly two hours, but Morgan finally built a motorcycle in five steps!!! He only needed my help on a couple of things!!! Yay! And then Bay commandeered the rest and Thomas the Tank Engine came back on. Baby steps....