Sunday, January 22, 2012

This is not a happy post

Sometimes I feel like I suffer from multiple personality disorder. One side of me wants people to recognize Morgan as having Asperger's/autism (trying to get used to saying just autism in case the changes to the DSM's definition go through- thanks for screwing over THOUSANDS, asshats!) and accept him as just a boy- with some different abilities. One other side of me wants people to just think that Morgan's a neurotypical child that's slightly quirky; he just likes to say weird things, lick around his mouth repetitively, find patterns in things, LOVES Thomas the flippin' Tank Engine, and exhibits signs of autism, but ASD isn't the case- he's just quirky and quirky is GREAT! Bullshit of me, huh?

I have these imaginary steel bands wrapped around my rib cage that make it difficult to breathe or relax. Whenever I get stressed/panic/anxious, somehow those bands tighten just a bit, sometimes more.  I stay stressed- constantly- and I'm prone to anxiety attacks in some crowded places or when I'm well, stressed out. The reason for some of my anxiety or stress? Well, it's hard to put my finger on it...
  • What if Morgan never reaches grade level in reading? What if he falls through the cracks?
  • What if I'm not a good mom? Am I missing something? I must because my kid didn't get a diagnosis until he was SEVEN and I KNEW something was wrong, but I let other people tell me otherwise- including my damned pediatrician.
  • What about Bay? I have him at home during the day and not in a preK program because, to be blunt, we can't friggin afford it. I mean, I can teach him, right? Those workbooks and worksheets will prep him for school, right? Playdates with other kids and outings to the park are okay, right, since I'm socializing him? Quality time with me is important, right? If I get him in speech soon for that slight impediment, he'll be okay and I'll feel like people aren't looking at him with suspicion as if "your brother's autistic/weird, what' wrong with you," right?
  • What if Morgan never meets a girl that looks past any of this crap that can be autism? What if he never gets married? I know this is a while away, but I worry about it, though I have no control over it.
  • My insurance has approved Morgan's therapy finally, but who exactly is right for him? When are we supposed to take him? In the afternoons? During school times? And how in the hell are we supposed to pay $40 (technically, it'll be more like $60- $20 for gas each time) a pop when we worry about splurging on dinner out? 
  • I just bought new shoes yesterday, dressy shoes. Shoes I technically needed (okay, I wanted them- so shoot me for wanting pretty red heels) to attend a function. I was excited about them, they're perfect and I got them on sale. Know what woke me up at 3am? The knowledge that the money I spent on those shoes could have gone to Morgan's therapy fund.
  • Am I doing enough for Morgan at his school? Probably no on that one. I don't volunteer and frankly don't plan on it unless it's something for his homeroom class.
  • That mom of the boy from Morgan's class we ran into yesterday, the one that Morgan really likes and always talks about, she took my number after the kids played at Chik-Fil-A. She said she would love for Morgan to come over, was she for real? I mean, really? Don't toy with my emotions, lady.
  • Does Morgan know how proud of him I am? I tell him, but when I push him to try harder, does he realize it's to help him reach his fullest potential? To get him out of a lower level class?
  • Why can't my child read a calendar? He 'learned' how to in math class... he can't do it though... which brings me to my next worry...
  • Is Morgan cheating in school? He admitted that he looks at other kids' papers sometimes when he doesn't know the answer. I don't know if it's for tests or what- reading tests are proctored in a room where he's the only kid and spelling tests he nails because he KNOWS the words. I know he gets stuck on word problems in math (deficits in reading, got it), but OH MY GOD. Cheating? My kid? Thomas and I have always told him how bad that is! I know he's not doing it for numerical equations, he does those right in front of me. But other things? I now have to contact his teachers... shit.
  • Morgan told me that he doesn't want to be "dirty Morgan" anymore and has to take more showers. He showers daily, sometimes skips a day if he's running late. What the hell? Who called my kid that? He won't say...
  • People think I've gone insane due to my rants on the word retarded... is it that bad that I want to punch those that call me oversensitive? I'm not oversensitive, I just want to punch people, that's all.
  • Morgan is overly affectionate. He loves to hug, kiss, cuddle, "pet" (have his head/back rubbed- he also tries doing that to other people, but sometimes comes off as kind of creepy, lol), hold hands... when is this really going to go south for him/us? I think it might have already on the boy front since he's brought home the words "fa***t" and "gay" and I'm pretty sure they didn't get tossed out loosely. Or what if he tries to "pet" some girl and she gets scared due to his size? He wouldn't hurt a soul, especially a girl, but my God... So we're doing behavior modification- a lot.

So, as you can read, I'm a worrier. I'm a warrior for my child, too. But I worry A LOT. I worry so much that, at times, I literally get sick. I can't stop it even though I know it doesn't help and is in fact detrimental to  Morgan (and Thomas and Bailey). But when so much seems unknown and out of my control, I don't know what else to do.  I try to be proactive about things in my life, but look at the list above me, a lot of these things are more of  "wait and see" kind of affairs rather than immediate "let's kick ass" types.

All I know is that I get exhausted/energetic and angry/sad/happy all at once and most of the people closest to me don't seem to get it. My friends who have NT children don't understand why I have mostly autism to talk about- that's my life, get with it or get out of it. My family, I think, sometimes feels the same way. I vent on my blog so I guess the six that read it know afterwards, but until you've walked in my shoes...  don't judge me or assume you know what's going on in my head- you don't. Autism is/can be a frightening place for a parent- unless you're in my Spectrumville, you're probably not letting it keep you up at night.

Summer 2008 "summer of hell", photo by Mariah Bibbey

May '07 pre ASD symptoms, photo by Mariah Bibbey

Tuesday, January 10, 2012

As a side note....

Morgan's teacher brought up to me an interesting scenario that had taken place in the classroom last week. A father of one of the students had brought in a volcano set to erupt (thrilled the kids) and as he was showing it off, a tiny black piece popped off and flew across the room. Naturally, the whole class, minus my kid, went looking for it.

I say naturally because Morgan was more fixated on studying the mechanisms which make the volcano work. Mrs. M said that Morgan looked around him and found a green component, same size and shape as the black component, and handed it to the Volcano Dad.

Volcano Dad exclaimed, "What a smart boy! This will work!" It did. It made the volcano go off without a hitch.

How did Morgan know? How did he notice that thing? Why did he notice? Does his AS make him note details in a room that no one else would ever think of noticing? I think so.

Mrs. M said that the class cheered for Morgan and that made him very happy- for a minute. Then he "peeped" (Thomas the Tank Engine style) and tried to talk Thomas, which is what he does whenever he's nervous, excited, or just plain doesn't know what to do. She says that she asked the school shrink what to do about this behavior, since it's really not harmful, but it is "odd." She, Mrs. M., loves it because Morgan can use his echolalia to tell her full stories with huge words in great detail. The school shrink gives a resounding "NO" to this, as do a lot of backassward leading psychologist and psychiatrists. It's as if they believe that children who seek comfort in the familiarity in their part of the spectrum of stims (the autistic hallucinations I've heard about and would honestly love to see - they sound beautiful, the comfort zones, the fixations on spinning/spinning objects, etc) will somehow damage them. I disagree- let them do it. It harms no one. It comforts them and frankly, if kids are teasing them, drag those children's parents in and have a meeting to ream out the parents for not teaching their kids to not make fun of a differently abled child.

And another thing, if one more person refers to my child as handicapped or special needs, I'll scream! When I think handicapped, I see the placards in my mind and think literally physically handicapped. My child is neither of those. A good portion of the kids on the spectrum who are being mainstreamed are in the same boat- so knock it off. Special needs is definitely a semantics issue for me, but I believe that every child has special needs- some more than others. Give me "differently abled" and we're good. In a day and age of people trying to be PC about race, gender, and sexuality, why can't we be more PC about DSM labels?

Setting expectations

Morgan brought his report card home today full of wonderful news! It shows what we already know- that he's making progress in leaps and bounds in a lot of areas, and progressing slowly but surely in others. He actually brought home an "E" for excellent in math!

What tickled me the most was his IEP (Individualized Education Plan for those that aren't familiar with the terminology) report and the social skills section of his regular report card. His social skills have gone from Ns to Ss!! From 3s (BAD) to 1s (GREAT)!!! His IEP report says that he's on track to complete his goals by the end of the year and, in two cases, he's gone from a 2a (no progress being made) to a 3 (your kid is surprising us, kicking ass and taking names). All the comments on it indicate that he is doing great and believe me, his teachers don't often mince words.

 We've been having the issue of Morgan rifling through his folders in the afternoons before I pick him up for some time now. It's annoying due to his taking things out of place and not putting them back. Since he changes classes, I need to know what came from which class, especially if it needs to be reworked.

However, Morgan, no matter what I do, still goes through his folder- especially on test take home days... For instance, last Friday was spelling test day. He comes home- no test. We ask him how he did and he got visibly agitated and began to stim saying, "I'm sorry, it was bad. I threw it in the trash!" How odd, we thought. We'd reviewed with him as usual and he had the words down cold. We asked the score (his thing for numbers means he memorizes a lot of his scores) and he answered "69," this worried us. Thomas went back to the school, where Morgan's teacher caught him going through all four of the trash cans in her room. She laughed her butt off about that to me. His test was recovered and the actual score was a "92." Now, my son HATES turning ANY test in to me or his dad unless it's a 100 or above for some reason. What in the world? Out came a number line with divisions for what's "good" and what's not.

To elaborate more on the perfectionism... Morgan keeps telling me he has writing assignments for Mrs.M, his main teacher. No biggie, I expect him to do those. I look at the papers he's bringing home and I see her red pen where she's written out his words he's wanting to write and he's brought home the specially lined paper for those writing assignments. Thing is, the yesterday, Morgan had an odd sentence that made me stop and think. It was "Respect means no pushing and for you to be fair." I asked Morgan what this was about and he said it was a write off. I freaked a bit and left a message for Mrs. M at home. He did the assignment- neatly- and went about his business. I talked to his teacher late last night and she told me that he never has homework from her. He goes to study hall to finish work. The sentence was okay'ed by her in class as an assignment for a segway into a civil rights lesson.

Morgan's been bringing these things home for practice! He complains bitterly as I'm getting frustrated with him, he wriggles around, stims, cries, etc., but knows that he doesn't HAVE to do these assignments. He picks up extra paper and decides to do all of this on his own, just to get better. He knows he gets graded and wants to get the best grade. I know all of this because I sat down and asked him today. I asked if he knew about the lack of assignments. He said, "But Mommy, I'm always going to specials and I never get to work on handwriting. I need that handwriting grade!" 

Every time I think that I set reasonable expectations for my wonderful kid, he blows them out of the water. I understand that he's doing the same at school a lot of the time, too. Which is great- it keeps us all on our toes. Lately some people have told me that I'm selling my kid short and that hurt. I don't feel like I do because I know my child is highly intelligent and know that he's going to surpass any expectation anyone might have for him. It's just that I think that the route that the experts, family, and some friends think that Morgan (and I, along with him) should take might be wrong. And so, this roller coaster ride/learning experience called Autism and my son continues.

Wednesday, January 4, 2012

On being "one of us"

I noted a topic on an AS discussion board  tonight entitled "What's the best/worst thing about being an Asperger's parent?" All I could think, in my own overly analytical way, was "Am I supposed to give a sentence or novella for each part?" So, since I'm incapable of short answers...

The bad & ugly side

I'm not going to lie- Autism can suck. I watch my child struggle so hard that he's near tears (or in them) just by trying to complete a simple task- like learning to tie his shoes, which he still has not learned. Damned fine motor skills.

Seeing other kids make fun of my kid when he's really trying to play with them... and seeing those kids' moms allow or even encourage it. The worst part of that? Morgan sometimes won't even notice the teasing, name calling, or that crap. What he notices is that the kids don't want to play with him.

You notice why the kids don't want to play with your kid. My son is literally the nicest person I know. He drives me up the wall, but I'm his mom. However, Morgan talks constantly about his trains. I mean, constantly. Kids his age usually have more than one thing to talk about extensively.  He's recently latched onto Transformers and Angry Birds, so there's hope that one day Thomas the flippin' Tank Engine's boiler will burst for good in our house, never to reappear.

As a parent, anytime that autism is mentioned in conjunction with your child, one of your initial thoughts is "I can't die." It's horrible. You can't die, you have to live one day longer than your child because who is going to look after your child the same way you do? What if, God forbid, you die while your child is young? To a neurotypical child, it would be horribly traumatic, but how would an autistic child adapt?

I can't get sick or Morgan gets upset. True story, and a very hard thing to deal with sometimes. Morgan spent the first two and a half to three years of his life with me in fairly good health. The last four have been awful. I have some autoimmune disorders that cause me a lot of pain when they're not in remission. When Morgan knows I'm in pain, he cries at school. He worries about me. He misses me. It makes me feel like the worst mother on the planet.

When your child is stimming, you can be driven to the point of absolute insanity.

Not every Autistic is like the guy from Mozart and a the flippin' Whale, okay? Just like not every Autistic is like Rainman, got it? Not every frickin' person on the spectrum is a savant! So quit telling me that ALL Autistics are highly intelligent or that ALL of them are savants! Quit generalizing about crap you don't know about!

IEP meetings....

Insurances companies- like mine, who don't cover any therapies unless they can be proven restorative in nature before the onset of therapy. I wish I was making this stuff up.

Don't assume because autism is mentioned that my child is a moron, either.

Best things

My son can manage to entertain himself for hours on end, no kidding. I rarely hear "I'm bored" come out of his mouth and he actually seem to mean it. He's always been that way. Even as a baby, Morgan amused himself by figuring out complicated locks, puzzles, pestering the cat, or locking Mommy out of the house- that wasn't fun. Seriously, my less than a year old brilliant child dead bolted the door behind me without warning during a freezing downpour. I was in my jammies. Not cool man.

Being the parent of an Autistic make you appreciate the details in life that you wouldn't notice otherwise. Be it a speck of mud on a window, a faint whistle in the wind, or a cloud that looks like Bertie the Bus from Thomas the Tank Engine, at least 1,000 times a week there are moments when Morgan points things out to me that I would have never taken the time to stop and notice. He finds patterns in everything and that's incredibly, well, cool, for lack of a better term. That he can find patterns in random forms and find it beautiful is striking to me because as an artist, I crave composition, too.

Having an Autistic for a child makes your other child instantly compassionate towards people with different abilities. The other night, we were in a crowded bookstore and without being told, Bay grabbed his brother's hand to guide him along in order for Morgan to step out of the way for a lady in a wheelchair (he spaces out sometimes- kind of like sensory overload). Most four year old kids would stare at the woman or point, or wonder aloud how she got in that chair. Not Bay. No, my younger son somehow always gravitates towards the children that are in leg braces, have developmental delays, autism, etc., whenever we're out at the doctor's office, playground or elsewhere. I don't tell him to, but he does. I'd like to think that he's just instinctively knowing who needs a friend, like his brother (who he worships without apology).

Having an Autistic child makes you grateful as hell for that diagnosis because you know how much worse it can be.  A kid cannot die from Autism. He'll grow up to be an adult with Autism. He'll struggle, sure... but with the right therapies, interventions, supports and educations, he can be "fine" - whatever that is. This is not to say that I'll ever get into a normal sleep pattern and quit worrying about my child. I don't think I'll ever stop worrying about Morgan until he has a career, relationship and kids. And even then...

The best thing about being an Autism parent? You get to define your own sense of normal- and feel great about it. I used to feel like crap because my child wasn't/isn't "normal." What the hell is that anyways? MY normal is a kid that might just lick someone else. MY normal is a soulful boy that memorizes whole episodes of Thomas the Train, The Nutcracker Suite, Adele, The Temptations, BB King, and Kenny Chesney. MY normal is a boy that has fears about everything but what would seem rational to me to fear (like heights- hello?). MY normal is now IEPs, The OASIS guide, Temple Grandin memoirs, prowling online at midnight scoping out new information, and dissecting for the billionth time the proposed changes of the ASD definition in the new DSM. Normal is worrying so much that my stomach feels weird if it's not in knots.

Also, another best part are the surprises when your beautiful, amazing, wonderfully introverted flamboyant child does something that he (or she) isn't "able" to do.

Monday, January 2, 2012

Blessed in the new year

I haven't blogged in a month due to the craziness of the holiday season, so I'm just going to give the synopsis.

Morgan did very well over the holidays, even though we traveled. It helped tremendously that we went to my mom's place, which he's always loved, and his grampa was there (he works out of state)! There was some misunderstandings (mild) over Morgan's tone of voice and if he was being rude or not and honestly, I stayed more on edge and stimmed my butt off more than Morgan did. This means I pretty much chain smoked. I know it's going to take a while for everyone around me to get used to the way they have to approach Morgan.. it's different from how we've been doing it, that's all.

My gramma must have found something on Oprah or in her magazines about AS because she came up to me and suggested that Morgan was "high functioning" and had really "opened up" to her for the first time (he came up to her, hugged her and said "I like you"). Haha, she bribed him gave him a present like she always does at the very start of the visit. So yeah, Gram, he's thawed- toward your wallet. He hung out around all Christmas day hoping to get another $10 bill off of her! Also, according to him, not all old people smell funny anymore. His brother disagrees.

Also, my kids got Lenovo tablets from their Granny (my mom is Babe, Thomas' is Granny). Now they can play educational games Angry Birds on trips! They can also say "poop" "potty" "butt" "pee" and other gross things to a Transformers Autobot in an app where it repeats it back to you, total echolalia, if you ask me.. but they enjoy it.

Morgan touched my heart the way he shopped for his brother's Christmas and birthday presents. Normally, Morgan is in and out of a store when shopping for me or his daddy. Now, for Bay? Or one of his peers? NO. He'll take over an hour if he has to- especially Bay. He wants it to be the perfect gift, Bay's favorite. I think this year he succeeded :)

I'm so very blessed to have these two boys that love each other so much. They've brought color and life into my world. Morgan has expanded my boundaries and my heart from the very beginning and Bay has turned all of our world's upside down :)