Monday, December 5, 2011

Just not getting him

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

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

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

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

Wednesday, November 30, 2011

To be like him

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

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

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

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

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

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

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

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

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

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

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

Monday, November 21, 2011

"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....