One of the things I truly struggle with, when it comes to Monkey—still—is that he is pretty much a black belt master in rationalization. He has an answer, a justification, an explanation, for EVERYTHING.
Most of the time his conclusions make no sense whatsoever. They come off as elaborate, implausible lies invented by someone who is the world’s worst liar. I often look at him and wonder HOW someone so smart can think that what he’s saying makes any sense at all. But then I (slowly, and with many internal “DUH!”s) realize that this is what life with Asperger’s is like for him; so many things make no sense to him. What we tell him is “right” sometimes feels ridiculous, so the stuff he invents as explanation seems plausible to him, because what is real-world plausible feels similarly ridiculous. (Did that make your head hurt? It made mine hurt.)
Sometimes the things he says totally delight me, because they’re hilarious. Other times they scare the hell out of me, because the conclusions he draws (particularly before/during/after meltdowns) are dark and dangerous. And other times they give me tiny little priceless insights.
Like, take today. I don’t know if you’ve looked at a weather map, today, but Atlanta and the surrounding areas are in the grips of a SNOWPOCALYPSE! School is canceled. The university is closed. Basically the town is completely shut down, because we have seven inches of snow and now it’s sleeting. Those aren’t ideal driving conditions even in New England, but in Georgia it’s a major crisis, you know, because we don’t have salt or snowplows or anyone who has any idea of how to drive in crappy conditions.
Monkey was to serve his suspension today, and was delighted, last night, when the news that school would be closed came through. This means Chickadee is home to play with him! And Otto, too! Hooray!
I think he made it all the way to about, oh, maybe 8:30 before he asked if he could have Lemur over to play. Because ISN’T IT GREAT that no one else is at school, either?
I explained that the reason no one else was at school is because the roads are treacherous and no one is driving anywhere, which would make having a playdate… impossible. This was a complete news flash to him, that there might be a reason not to get in a car. He was very disappointed.
Later, Chickadee asked if she could go to a friend’s house this afternoon. I told her that was fine. Monkey became IRATE… until I pointed out that said friend lives within walking distance. Again, it was as though first, this had never occurred to him, and second, once it was made clear, surely it was a plot by the universe designed to make his life suck more, that his friend lives a few miles away and Chickadee’s is only around the corner.
Now. When I try to explain to people about Monkey not processing illness like a neurotypical person, it’s usually met by confusion and maybe even skepticism. I’ve seen it here, even, where I struggle to explain how he is and I can see that there’s an undercurrent of “that cannot possibly be true” reaction.
All I can think is that if you are constantly bombarded by that which makes no sense and/or feels weird, you grow comfortable constructing explanations that support a position of “this is perfectly normal and I’m just being weird.”
So. This morning Monkey came to show me something he was building out of Lego. He brought it into the kitchen while Otto and I were getting coffee. With a flourish and a giant grin, he held it out for us to admire.
And his hands were shaking.
“Monkey, are you cold?” I asked him, mama-senses tingling.
“What? No, I’m fine,” he said. “Thank you…?” he added, unsure if this was a time to use good manners to thank me for my concern.
“Are you sure?” I pressed. “Here, let me have this a minute.” I took his Lego creation and set it down. “Put your hands out in front of you like a zombie, please.”
He giggled and complied. His fingers shook and twitched of their own accord. His arms waved up and down, just slightly.
Otto and I exchanged a look.
“Are you sure you’re not cold, pal?” asked Otto.
“Nope, I’m good,” he answered, while I pulled him close and felt his head.
“No fever,” I said, mostly to Otto. “Hey buddy, how about you go put your robe on for a few minutes, and then I’ll come take another look at you, okay?”
He shrugged, but agreed, and went off to put on his robe. He wandered back downstairs into my office a few minutes later, and I asked him to hold out his hands again. He was still shaking.
Now. Last week we were directed to up one of his medications; I did a quick Google search and tremor seems to be a not-uncommon side effect with that particular med. I’m not going to tell you I wasn’t freaked out, because I was (am), but I also know that it’s probably the medication. I called his doctor and he wasn’t terribly concerned; discontinue the med, symptoms should resolve in a couple of days.
That’s fine.
On the other hand, we still have the unexplained seizure. We still have the oh-maybe-this-weirdo-sinus-infection-from-hell-is-pressing-places-on-his-brain-it-shouldn’t worry, and here we are on a day when our town is literally iced into a standstill, dealing with a new symptom that is probably a medication side effect, but what if it isn’t?
And then, in the midst of all of that, we have Monkey. Dear, sweet, rationalizing Monkey. “It’s okay, Mama,” he says to me, reading the concern on my face. “It’s nothing. I think my hands have been doing that for, I dunno, maybe a few days or a week already. It’s not bothering me.”
As I gaped at him I had one of those “DUH!” moments. He is so utterly unable to notice/understand his body and its goings-on that he’ll just backward-construct an explanation that seems plausible to him. Like that it’s been happening for DAYS, maybe a whole WEEK! And it’s no biggie! Don’t sweat it!
I know it only started today, because we spent all day yesterday together. Yesterday I was lounging on the couch watching television while Otto and Chickadee ran some errands, and Monkey quietly sat down next to me, then stretched out and draped himself over my lap and fell asleep. In the middle of the day. I had rubbed his back and stroked his hair and marveled at how calm he is in slumber, when his waking moments are sometimes so stormy.
Yesterday his hands did not shake. Today they do. And Monkey not only didn’t notice it today, he’s perfectly willing to assume he hasn’t noticed it for quite a while. Because his reality, every day, is composed of things that make no sense to him. (Which leaves me wondering what ELSE isn’t quite right, that he doesn’t notice or cannot talk about, and we are left to puzzle out or overlook. On Friday, when he lost it and freaked out, his hands didn’t shake, but was there something else?)
It’s the meds. I’m sure it’s the meds. In a couple of days he’ll be tremor-free again. Because it’s pretty cold comfort knowing that even if he’s not, he’ll probably have an explanation for it.
Not sure what he’s on, but plenty of meds do that to me. Also, hunger/low blood sugar does it to me and to my 10-yr-old too, without obvious other hunger symptoms (speak nonsense much? I do).
I have no wisdom to give. But I do have plenty of gratitude. Your words have helped me deal with a child in my life and his mother who is a close and dear friend as they are crawling through the diagnosis of Asperger’s and figuring out what to do about school and etc. So, many thanks for your beautiful poignant and heart-filled prose.
And may the head-goo in his sinuses decide to find another home soon!
Hugs, Mir. Just HUGS.
Sorry you are having to deal with so much. Hope everything with the infection is cleared up soon. My daughter took Paxil for awhile for anxiety attacks. She had several seizures before it was figured out it was a reaction to the medicine. She stop taking Paxil and hasn’t had a seizure since. The not very nice neurologist said they weren’t really seizures but basically in her head because of stress,yeah like that helped. Well when someone slumps over and starts involuntarily shaking on one side it sure looked like a seizure to us. (and to the emergency room people when it happened there.)
(((Mir)))
I just finished reading this book http://www.amazon.com/Curious-Incident-Dog-Night-Time/dp/1400032717 and about halfway through I was just blown away by how utterly impossible it must be for someone with autism to function in a normal-person world. The author’s insight into the protagonist’s thought process made me see that there was a perfectly logical train of thought that lead up to the illogical (to us!) actions the character made. The things he inferred were completely incorrect and often dangerously so, but they were absolutely logical in his mind and you could see exactly why he’d think that. It just made me realize how completely alien their reasoning really is and how even the smartest of smart kids must be completely out of their depth. It’s like if we were dropped onto a totally different planet where gravity pulled up and three suns rose at night and oh by the way the aliens here EAT PEOPLE and best of luck with all that! We wouldn’t be the proper guests at dinner parties either, lmao.
Still thinking of you regularly and hoping the answers are just around the corner….
I don’t have anything helpful to say, but I know you will all get through this.
I have to second Clarity – if you (any one dealing with autism-spectrum in any relationship) haven’t read “The Curious Incident of the Dog at Night Time” – do not pass Go and do not collect $200. Read it! One of my best friend’s sisters has been diagnosed with Asperger’s and that book helped her whole family (and me) get more of a sense of what was going on in there.
Logic is still logic, regardless of whether it’s starting from a logical point or not.
Hugs, Mir! If it makes you feel any better, I’d bet even neurotypical kids at his age would have problems with “she can walk to her friend’s house but I can’t have my friend over???” That’s more the fairness meter than the logical one :)
Another round of sympathy for all of you. Yes, meds can do strange things, especially when a dose is raised to a higher level. And yes, reactions that seem illogical to most people almost always have a logical, rational basis for the person on the autism spectrum.
Another complicating issue is that there is often an assumption that because the autistic person knows something, everyone close to them also knows it. My daughter was in a horrible middle school situation. I knew it was bad, but didn’t find out how terrible it was until my daughter was safely out of it. She never mentioned what was going on, because she assumed I was aware of it, and wasn’t doing anything about it because it was okay…
So, good luck. I hope things resolve quickly, and that your roads clear up soon.
I often marvel at how the right kids (and dogs) get matched up with the right people. You, certainly, are The Most Right Person Ever for Monkey (and Chickadee, and Licorice). It’s like there’s a Plan, or something…
I think that you have an amazing handle on what’s going on with Monkey, although I understand the fear of – what’s going on that we don’t know about yet?? Monkey is so well taken care of by parents who are vigilantly on guard, that I believe he will absolutely grow up to be a productive member of society regardless of the trials he’s going through right now.
Here’s why I think that – I grew up with an Aspie boy in my church; I knew him as a toddler up through high school. I’m 35, he is a few years younger, and Aspberger’s was UNKNOWN back then so everyone just though he was, well, odd and troublesome to say the least. I finally realized he was an Aspie about 5 years ago when I saw a documentary on the disorder, and I totally recognized the physical and behavioural aspects and I was like, OH! THAT’s what was up with J! And poor J, looking back, I truly believe his entire family was Aspie, parents, brothers and sister. So of course, the poor boy had no support whatsoever, not even the refuge of a “normal” family life. It seems they all just kinda did their own things in their own little worlds. Anyway, despite his problems in school, he made it through and graduated from high school. I later heard he had gotten married and had a regular job (I can’t remember doing what). I was very surprised to hear this about J. All that to say that this poor boy had no diagnosis, no help whatsoever from family or anyone else, no coping strategies, no understanding of why he was “that way,” and he has made it work! Not to say that that one case defines all Aspie’s, but as much support, help and love as Monkey is getting from his family and community, my (uneducated) guess is that he will be a great adult :-)) Just my two cents worth! ;-P
My sister and I were just today talking about how difficult parenting is and how no one tells you ahead of time that it will be one of the hardest things you ever do. We have five neurotypical kids between us, so its not like we’re even dealing with anything different, just regular kid stuff. Please know that I think of you and your family often and offer up prayers, too.
Mir – is it Haldol? Horrible drug – gave my daughter the shakes and tremors – got her off it immediately and tremors where gone in a day or two.
Oh hugs. From Greenville, where we too, are dealing with S.N.O.W. . I’m glad they closed school as no one here knows how to drive in the stuff.
Hang in there. All of you are in my prayers, as you have been.
{{{{hugs}}}} I just think you need a hug today.
That sounds really familiar. I’ll do the same thing with emotions. They sneak up on me, and I just don’t notice their existence. Often the first sign I’ll have that I’m upset is that I’ll be going through my day and then notice that I’m crying. It could take me up to a week to parse out why I’ve been crying, and it doesn’t have to be for a complicated reason.
Similarly, it can take a long time to work out how I feel about something. This winter, my sister offered to take me to a Cirque show as her Christmas present to me. It took me a week and a half to parse out what my emotional response to that idea was and if I wanted to go. It feels like I just have to chew things over in my backbrain for ages before it becomes something I can consciously experience.
I wish I could accept my own explanations for the mysterious things in my life the way that Monkey can. What a gift in the middle of such a storm. Maddening, too, at times, I’m sure – but still, at least he’s not completely squicked about the tremor.
“this is perfectly normal and I’m just being weird.”
That’s actually a very apt description of how it feels a lot of the time.
I still have that “Look Me in the Eye” book to send you. If anyone else out there would like to read it, I highly recommend it. It’s the autobiography of an Aspie.
I second Karen’s (#11) comment. Haldol is very much a blunt instrument. My husband was taking it for Tourettes, and the only reason he didn’t commit suicide on it was because he couldn’t get enough energy while plunged into a black pit of despair (and because I was watching him like a hawk). Within 24 hours of going off of it he was functioning again.
Aspartame can also exacerbate neurological issues — my husband’s tics go from mild to severe if he accidentally ingests some (it shows up in toothpaste and foods that are not listed as being diet or light). If you haven’t done so already, you may want to consider removing it from everyone’s diets and see if things improve.
Yes the snowpocalypse is here as well. And we have plows and salt and trucks and dumb-dumbs on the roads etc… And I am here and not at work. Ehhh kinda wierd. The fairness thing came into bing with the firneds thing. Happens in every household. Amazing insight into his thought process though. You doin’ great Mir. Keep trying. He really loves you.
I have two girls who I think are neurotypical – although they both seem strange from time to time, but isn’t everyone a little strange in their own way. Not saying that to minimize anything Monkey goes through. Just to say, I don’t find your explanations that Monkey can’t tell you how he’s feeling strange at all. My two girls often don’t seem to have the words to explain how they feel. They are 8 and 10. I always chalk it up to lack of experience with life, they haven’t felt things enough to know. Often when they are cranky for no apparent reason, I have to probe deeply with them to figure out if it’s just a mood or is there something else. In the case of my 10 year old who seemed to start puberty several years ago (lucky her extra long puberty woohoo), there’s often no answer. So anyway, I hear you. Again, can’t say I am dealing with the same things, but there just aren’t easy answers for any kid.
On another note, we know a boy in our neighborhood who’s been in my older daughter’s class for several years. They are in fifth grade. I don’t know his diagnosis, but he’s had an aid for a while. He’s also had a number of Monkey-like outbursts. He was suspended from school for week this fall. His family decided after that to homeschool him. I’m not sure what their long term plans are for him. I don’t know if that was the right choice or not. But I will say, my husband and I talk all the time about how our heart hurts for him and for them, because behavior like that is so misunderstood. Sure he has violent outbursts here and there, but he’s still a young boy with a big heart. There’s so little tolerance for difference and a general inability to see that these situations are not black and white, that I just don’t know what will happen for him. I’m not even sure why I’m writing this comment, except to say, there are all kinds in this world. We’d all do better to remember that everyone is dealing with something. Some peopel have it rougher that others. But they (and all of us) could use some understanding and the benefit of the doubt.
Anyway, best to you and your family. It hurts to struggle along with your kids and the inability to kiss it away leaves some deep scars. Hang in there.
I wish I had some insight to share. I just know that Monkey is a very lucky kid to have you for his mom, and we are very lucky readers to have you to explain so much to us. Sending love and hoping for the answers you need.
I think of you and your family everyday and am sending up prayers to cut you some slack already ;) For what it’s worth, I believe you. In fact, it reminds me of my five year old boy who is completely unable to name his emotions and struggles to express them in an appropriate manner. Hugs!
I did not know that Aspartame can make things worse. Though it does explain my “allergy” to it.
I feel for Monkey, I do. Trying to (and having to) explain or defend everything you say or do gets wearying. Always on the defensive. Always. And then there’s the second guessing yourself, asking “is it normal for me to ______?”
But I’ve said it before, and it bears repeating, Monkey has the BEST possible Mama in the world!!!
Oh yes, with the difficulty processing feelings including physical feelings!
I also wanted to throw in how cool I thought this line was “Put your hands out in front of you like a zombie, please.†Imagine being able to come up with that when faced with something potentially panic-inducing. Good for you!
Thinking about you all so much today. Best wishes.
My son’s hands randomly tremor some mornings. It was much more frequent last year, but it still knocks me for a loop when I see it. He’s not on meds and they haven’t figured out why. Scary stuff. Hope changing Monkey’s meds do the trick.
I wish I had words. Words that could comfort you, or make it all go away. Words that could convey how much I feel for you, mother to mother. Words that would help explain or make sense why bad things happen, especially to people who don’t deserve it. But I don’t. Mostly because these magical words don’t exist. Also, because life is never that simple.
Just know then that is one more person in the world who is sending out prayers and love to you and your family. Who knows and cares and truly hopes for the best possible outcome in this whole saga. God bless, Mir. It’ll be okay, you’ll see.
Oh, Mir, I am so sorry. You and the Monkey man are in my prayers.
Oh Mir. If I lived in Atlanta I’d make you muffins or something. *hugs*
(((hug))) again. I have my own issues, and a sister who is definitely a never-diagnosed Aspie (violent outbursts in childhood and all). We’re both married adults now, me a SAHM and her a pilot, her dream job! One day, the universe may finally finish plotting against you all (though I have to admit, it still feels like that a lot, I just know enough not to tell anyone . . oops).
When Lurch was in 6th grade he had a medicine side-effect that freaked me so badly that we weaned him off of all medication. I am not even going to explain what happened because I do not want to make you afraid to try medications. I just decided that my family and the school employees would have to deal with Lurch as he was. It has been a bumpy ride into young adulthood.
You seem to have an observant eye and a good understanding of Monkey’s thought processes. I’d say you are doing the best you can, and God is on your side as well. ((hugs))
I think it is just so hard for neurotypicals to understand that we don’t experience reality and the world with our senses, but with our brain through its interpretation of our senses. And if someone’s brain is wired a different way, speaking a completely different language then yours, how can you expect them to draw the same conclusions?
I remember an early OT of my son’s trying to get me to understand how his sensory issues affect all of his learning and his ability to function in the world. She said: “imagine you are walking on a high wire suspended 200 feet in the air between tiny platforms, and with no net. Are you going to be able to carry on a causal conversation while you cross it, or do you have to put every fiber of your concentration into your footsteps? Well, for your son? Walking across the room on the floor takes as much out of him as the tightrope walk would for you.
Unless you’re living it or loving with someone who is? You just don’t get it.
I’m sorry this is such a hard time for your son and hope the doctors find a way to get that infection out of his head soon.
And also? Just want to say hello and introduce myself. I’ve been an (autism) mom blogger for about a year now, can’t believe I never found you before. Just goes to show it’s a wider world than we think. You’re a wonderful writer and mom and I’m glad I somehow landed here. I’ll be back.
Life as an Asperger’s parent means interpreting the world through a whole different lens. I hear you. Mine is 19!
We learned that parents of children on the autism spectrum often have weaker than normal immune systems. Siblings, however, develop stronger than normal immune systems. Huh? I don’t know about this, but my daughter was happy to hear it.