A better smeller

"Why does it smell like chicken nuggets?"

She had just gotten into the car. There were no chicken nuggets in the car. I told her so, and breathed deeply through my nose but could not smell anything.

"My smeller works better than yours," I was told.

Again I assured her there are is no chicken of any kind in the car.

"Oh! It's rain."

I guess rain can smell like chicken nuggets?

Not to be questioned, since she has the better smeller...

99.57% Mainstream!

Except for once a month to check in with the school speech therapist, there are no other pull outs. Social group was 4 days a week but it will now be a 15 minute in-class one on one session. The wording here was "inclusive approach" of course. 

I do get it. She's too good at therapy. She quickly learns the target response or reaction, but it doesn't carry over to real life scenarios. This is why we get discharged from private therapies so quickly. 

Now, this all sounds great. And I'm so glad that she does so great in school and it's not a reverse situation of being perfect at home and awful at school......but seriously! It makes me wonder if I'm imagining all the trouble we have in "real life" outside of school, and leads me into a false sense of security to believe she's perfectly normal and typical. This just makes the inevitable let downs so much farther to fall. 

A glimpse

"Remember when I said, 'Someone stole my pencils!'?"

Nope.

"Remember, I was at school."

No, I am not at your school.

Apparently, it was second grade, and she said it once and must have received some incentive to keep doing it, and expanded the schtick to include all her other desk objects (erasers, paper, water bottle, etc.).

Are you still saying it this year?

She is.

The conversation revealed that 1. She still struggles with the me vs. world perspective--"theory of mind"--by thinking I can somehow know all things even without being there 2. The perseveration is alive and well.

Hide and Seek

I was reading an article about social skills games, and it was really a pretty stupid article (one of those "content" articles hidden on a page of ads) but it gave me a particular light bulb moment when talking about hide and seek as a social skills game involving taking turns and other perspectives. Then it hit me. That's why LS usually will hide in the same place over and over, because she doesn't consider the other perspective, that the other players will probably find her easily if she hides in the same place every time. This realization was particularly amusing when I remembered just yesterday during a playdate with another 7 year old PDD child, when they played half a dozen rounds of hide and seek, each hiding in the same spot under the stairs every time. At the time I didn't get it and was like, "You guys, you're just going to hide in the same place every time? Really???" I couldn't understand how that would be fun. But it sure was to them. If considering the other person's point of view doesn't factor in, then it WAS logically the best place to hide and they could play it over and over the same way with fresh suspense and intrigue on each round.

Growing into our autism

I met up with a friend who always says, "I don't know. She just seems so normal." She says this during the 1-2 hours we hang out, a couple of times per YEAR. Today she said the same stuff, on cue. She asked, "So does she still have that....you know? Has she grown out of it yet?" I wanted to say, "No, and I'm sure glad she hasn't because if it's not autism then we've got some other kind of serious mental illness going on here--and I'm much rather have autism!"

But I'm getting better at handling it, without feeling frustrated or defensive. This friend is also really hard to communicate with due to her adhd that makes her unable to hear more than one sentence at a time before interrupting or wandering away, literally. Hard to sum up the complexities of it all in one sentence! Today I discovered a new tactic to get her to listen longer: just use an example and tell it like a story. So I told her the story of last week when the substitute principal walked LS out to me after school holding her hand, and told me of the day's events that involved LS having a misunderstanding with another student then having a meltdown when the student told on her, then spending the rest of the afternoon in the principal's office. Then finding out that LS's teacher had gone home sick in the middle of the day, and the sub principal was helping out in LS's class. So when LS had the misunderstanding with the other student, there was no one there who knows her to help her problem solve. She relies on adults to help her problem solve troubles with her peers. So with no one there, she went into a full fit. That seemed to hold my friend's attention and satisfy her doubts, for this visit anyway.

But if we had visited longer, or if I could have kept her attention longer, I would have added that the meltdown that day was a rare event since we are going longer and longer in between meltdowns, and I credit this to LS learning coping tools and self control, as well as the staff learning how to help her. Another change is that I am now understanding more about the triggers and what LS needs--in this case her need was a trained adult to help her problem solve. And now I see how that important that is for her overall.

So I guess I'd say to my friend that, no, LS is not growing OUT of anything, but that WE are growing INTO it. Yes, we are growing into our autism.

That is soooo last year

The principal walked LS out after school yesterday. Not a good sign. Turned out to be not a huge deal. I was expecting something really serious. But it was just that LS got upset in class about a disagreement with another student, then laid down kicking and screaming. Meh. Been there, done that. I just thought we were done with that by now. That is soooo last year. So 1st grade. What it took to bring that on was understandable: teacher went home sick midday and there was a sub principal too. Both the classroom sub and sub principal were helping out in LS's class in the afternoon. LS needs adults to help her problem solve, especially adults she trusts on a daily basis. Sudden change is hard. And all hell can break loose. Which it did.

What really bugs me is no matter what LS does, my concerns are completely blown off and disregarded by anyone I tell. "Oh, she's just creative." "Oh, she's just so smart." "Oh, we just love her." "Oh, she's just asserting herself."

Oh, come on!

Because it's like that, until it's not and then I'm suddenly looked upon like, "You need to do something about your kid."

holiday recap

Night and day. On and off. Flip of a switch.

Saturday so mellow and "present" and reasonable. Going out of her way to be helpful and enjoying "being good." We had a calm and successful time building her Minecraft lego village together.

Then came Sunday with no self-control and outbursts and yelling and whining and crying and frantic behavior.

So unpredictable.

The triggers are pretty clear: other people. Specifically, other kids.

At Sunday School: Panicking, frantic reactions if she has to wait her turn to speak in a group. Goes berserk if anyone makes a comment that she claims was what she wanted to say. Flips out if another child wants to say something to the teacher when LS believes she has the floor (which is always). I was on desk duty near the kid's classes at church that day so I could hear LS's outbursts, averaging about every 2 minutes. Even with the reminders that we'd go to the library to play Minecraft if she was good, she just couldn't pull it off.

Minecraft is a trigger too because it's the current intense obsession. The peak of the intense interests seem to correspond with the worst behavior problems.

Lately she's frantic and consumed with her "Minecraft time" which she gets after school and after homework. She is also frantic and consumed by the red light on the tablet because it doesn't charge well and if it doesn't charge enough then that means her "night time" music on it won't play all night, which sends her into a full panic. Even though it's not a big deal because we can just plug it in by her bed....

Today there was no Minecraft time because she came at me after school crying and sobbing and wailing, claiming her friend was mean and spit at her. I saw this friend and asked what happened and the friend said that LS had said, "My dad will smack you" or something like that. LS had left out that part of course.

LS lies.

Just flat out lies.

So I never know what to believe.

At work all day I didn't feel stressed out at all, even though I was multitasking and busy. But the second I picked up LS my blood pressure was up and I was instantly so stressed and upset by her crying and sobbing and because I wanted to go inside to look for her lunch box she was demanding, "Will it waste my Minecraft time?!" repetitively and with increasing frenzy.

So the new rule is that if she comes out of school upset like that, then no Minecraft. And if she asks, "Will it waste my Minecraft time?", then no Minecraft time.

Winter break was long. So long. And we had to go to two different daycare sites due to low enrollment issues. That didn't help. The staff reported LS had a hard time with her emotions and with other kids.

She does okay at home when it's just us. But then she zones out playing Minecraft or watching it on youtube, and at least she's quiet, but I know it's not good for her to have so much screen time.

But if she's not playing Minecraft or watching it on youtube then she's following me around doing the monkey or squirrel perseveration that goes like (lately it's the monkey):

"The monkey wants a banana."
"The monkeys are staring at you."
"You are living with a monkey for the rest of your life."
"Look at this monkey." (demanding I look at her)
"Two little monkeys sitting in a tree, KISSING, first comes love..." (and the whole bit, over and over)

And during all of it she makes a monkey face and loud jungle sounds and pretends to climb the walls and I can't get through to her. She just goes into character and she's gone and I am sharing the house with a lunatic. That's what it's like in the mornings before school because there's no Minecraft weekday mornings.

So yeah, that's why I let her play Minecraft so much, for the quiet
and for my sanity.

Elf on a shelf: Keep it clean!

You 'elf on a shelf' people need to keep it clean! At the bus stop today the parents were sharing photos of their elf on the shelf pooping out hershey's kisses. The kids all thought it was hilarious. Unfortunately, so did LS. When she's still talking about it and reliving the moment in June, and they are sick of hearing about it, I will remind them it's their fault. But all they have to do is hear about it at the bus stop once a day. For me it could be years of hearing about it daily, any time, all the time, and in appropriate places and at inappropriate times.

Piano recital

LS had a piano recital Sunday afternoon. Though it was a casual open house style recital I still wasn't able to get video of her playing her songs because it all happened so fast. Literally. She pretty much just barged into the room of quietly seated guests and announced she was next up to play. Luckily she at least let the boy who was already at the piano finish before she plopped down and started playing, without even taking a breath or waiting for her teacher to finish introducing her.

She played the pieces very well and even did an encore. There was applause, and laughter (the laughter due to her lack of hesitation to get up there and have her turn). Unfortunately, any kind of attention can cause things to take a turn for the weird...and they did. The next step toward the weird was LS marching around in the middle of the room shaking the jingle bells and yelling "everybody shake it!" That's okay. It was festive. And gained more laughter. But then it devolved to her going up to the piano again in between sets, banging a nonsense chord and yelling "goose in the toilet!"  I took her out of the room after that but then she escaped and ran back in, running around with the jingle bells yelling "everyone shake your tummies!" That was our cue to leave before things got worse, and she had already attracted the "I wonder what's wrong with her" looks. So we said goodbye to her teacher and left. Overall it was a success. She didn't pull up her dress and show her underwear during the bow like last year. And no one was hurt. 

Bloody math

The little twerp of an autism dr we visit just once a year, who doesn't even have kids, was actually scolding me about letting LS play and watch Minecraft. Meanwhile, he doesn't even know what Minecraft is.

"But what about the violence???" He lisped dramatically.

I tried to explain the game and that killing isn't really the objective. I didn't bother explaining the creative mode, the building, the fact that it helps her have something in common to talk about with other kids, that other kids are more tolerant of her behavior when they have something in common, etc.

Explaining the Stampy Cat Youtube channel was even harder--why I let her watch videos obsessively, videos of someone else playing Minecraft...

He gave a scolding, warning look and proceeded with the yearly evaluation of academics. After the reading and spelling evaluation, he gave LS the math worksheet.

"Oh, bloody math," LS muttered.

He turned to me with wide eyes, "Did she just say 'bloody' math???"

"Well yeah," I admitted. "That comes from watching Stampy Cat. He's british..."

"See...." he shooked his head shamefully. "They repeat what they hear...."

Of course I didn't tell him that Stampy actually used worse language in earlier videos, before he realized his audience was mostly kids. There was the day LS stumbled across one of these earlier videos and thankfully was fully immersed in building something in creative mode, while the video was chromecasting to the tv, so she didn't hear Stampy say "fucktard penis head."

Yep, that made my head whip around. For sure.

At least LS didn't say THAT at the dr appointment. Even though that would be the best place, of all places, to say it.

Maybe next time... : )

Obsessions and intense interests

It's normal for kids or adults to "get really into" something. The difference between them and an autistic person who "gets really into" something is that the typical people will still do other things and in the case of children, the interest will likely pass by more quickly. With an autistic child the interest is MORE intense, MORE consuming, and lasts LONGER than with a typical child. Every interest Little Squirrel has had has been this way. Her friends will get interested in My Little Pony, and LS does too, but the friends will also have interests in Princesses, Spiderman, or other characters. But not LS. It was all MLP, all the time, for a very long time. That one was over a year. Before MLP was Angry Birds. All Angry Birds, all the time. After MLP was Phineas and Ferb. All P&F, all the time. Now it is Minecraft. This one will last longer, I can tell. Because she's not just obsessed with playing it but also with watching others play it on youtube (Stampy Cat and Amy Lee and Squid are the only ones she's allowed to watch). She doesn't watch or play anything else but Minecraft.

Interests quickly become obsessions and obsessions ever more quickly become perseverations. Watching Stampy Cat again and again is familiar and predictable. Playing Minecraft brings the comfort of being in a familiar world where she can control everything.

Even the squirrel perseveration started as a joke at school over a year ago, where she made a face that looked like a squirrel, then everyone laughed, so she did it again. And again. And again. That spiraled into this whole 'schtick' about squirrels that got the whole class involved (poor teacher). But what was just casual fun for her friends, to say SQUIRREL! and make squirrel faces, was all-consuming for LS. So now that it's over a year later and her friends have long ago moved on to new things, and LS is still doing the squirrel act, but not as much at school anymore since even the word alone has been outlawed in the classroom and her friends have long since been tired of it. So she saves it all up for home. For me. All squirrel, all the time.

Except for when she is doing the newer 'schtick' that involves a monkey face and scripted repetitive speech about a monkey. She alternates between the monkey and squirrel acts pretty equally. I don't prefer either one. They both make for a very long weekend. So people probably wonder why I let her play and watch Minecraft so much, I just can't even explain that at least she's quiet and it keeps the squirrel and monkey away.

Omg the perseverations

"Squirrel!"
"Squirrel.....squirrel....squirrel....."
"The squirrel wants a nut." (she wants me to say, 'I don't have any nuts.')

"Ooo ooo ah ah."
"The monkey wants a banana." (she wants me to say, 'I don't have any bananas.')
"Monkeys everywhere."
"You're living with a monkey for the rest of your life."
"You asked for a kid and you got a monkey."

It's either the squirrel or the monkey script, all day, every day when we're together. It was a long weekend. Can't wait for work tomorrow!

Early intervention always helps; never hurts

Study: Autism Therapy Produces Greatest Gains When Started Before Age 2 

We had a bit of a delayed start in therapy at age 3 1/2 (because I fell for the "wait and see", "she'll catch up", "she'll grow out of it", etc. approach, by listening to friends and family) but the progress was still dramatic and now LS is 92.7% mainstreamed. It astounds me when I see so many diagnoses coming at ages 6, or 8, or 10.....? I don't understand how the parents didn't know until then or wonder or question. To be fair, it's not always the parents. It can often be doctors. PC drs have been so slow to get up to speed on spectrum news. Many are still only aware of classic autism, and unaware of the spectrum, and PDD-NOS--and that the DSM now categorizes them all equally under the autism spectrum disorder umbrella. This lack of current information can delay a diagnosis for so many who could have experienced greater therapy results had they been diagnosed earlier. 

Overall, I don't get the hesitation, other than cost. It's not like prescribing medication with serious side effects. Since when does therapy have serious side effects? It never hurts. At worst, there is no progress. At best, there is. 

What really amazes me is the general lack of curiosity I get from doctors, specialists, and educators. The spectrum is so vast and there is so much to be discovered still. Whenever I ask about one of LS's particular behaviors or gifts, in an effort to get to the WHY of it, I only get pacifying comments about how great she's doing. I KNOW she is. But I am CURIOUS and I am not a scientist or specialist. But I have had to be in order to find answers to my questions.

Butt Cheeks!

Except for music, I rarely, or never, watch or listen to anything around Little Squirrel. All the Facebook video clips, online news segments, funny video of whatever, etc. I either wait until night when she's in bed, or listen with headphones. This morning a short clip of a Conan interview popped up in my feed. It was short. LS was busy watching her morning lineup and eating Cheerios. The headphones were across the room. I got lazy.

The Conan interview was with Dax Shepard from Parenthood. I like him. It looked harmless. But the feed gave no indication of the topic. And all too late I simultaneously found out that part of the interview was about Dax having his butt hair shaved for a role just as LS happened to approach just in time to overhear Dax say "butt cheeks."

BUTT CHEEKS???? BUTT CHEEKS!?!? BBBUUUTTTTTT CCCHHHEEEEEEEEKKKSSS!!!!

Knowing I could be stuck with this on continuous play for months, or years, I decided denial was the best strategy.

"No, that's not what he said. You didn't hear it right." I claimed, holding my breath.

"Oh." She seemed to accept that. For the moment. But only time will tell. "Butt cheeks!" could show up AT ANY TIME. It's not a matter of IF, but WHEN.

IEP: Now that I think about it...

it's the first time I'm disappointed with the school's handling of the IEP. Dropping the speech therapy and leaving nothing much left on her IEP to work on seems lazy to me. The speech teacher is great, but she is teaching to the test. Sure, Little Squirrel can perform brilliantly when it's scripted and expected and prompted and rewarded. I don't see the same progress they do. But I'm not sure the public school system has the capability to drill down on all the gray areas, and insurance doesn't pay for enough therapy sessions to make any long term difference either.

IEP results

The IEP meetings get smaller in attendance and the IEP itself is a third of its original size from when it began 4 years ago. They are keeping her in the social group but now her speech therapy is being reduced to once a month and "check ins." I didn't argue because she is a different person at school and as long as she is performing to standards there I can't really prove what goes on outside of school. She really does live two lives. School gives her the structure and routine she needs. She is successful there but I'm also concerned that they are overestimating her since her fierce survival skills seem to enable her to cope and blend in. Yet that can leave kids like Little Squirrel vulnerable, when given less supervision and support that they actually do need to navigate complicated social situations.

However, the progress has been huge and this is the first year I haven't had a single call or email from the teacher already by this point.

IEP eve

It's IEP eve once again. I guess this will be #5. I don't feel any more prepared or experienced than I did at the first one. Back then I think I even remember saying, "I'm just along for the ride." And I wondered why there was a weird silence in the room, and looks. And I thought, am I not supposed to be just along for the ride? Should I be doing more?

Then along the way I learned from others that IEP meetings are generally pretty adversarial. Thankfully, even though we are in a lower income school district, I have never had to argue or fight to get whatever I think Little Squirrel needs. And more thankfully, the early intervention served her well so she doesn't need much, not as far as school goes anyway. Also, I am aware that the school doesn't have a magic wand, or magic wallet, to fix things that could be better for us, or remove bullies (because there will always be more), etc. They have always been great at tracking the progress toward the goals, setting new goals, and overall, for caring about Little Squirrel.

Last year at the IEP meeting there was a moment I won't forget: the whole table of educators looking at me while one spoke on the verge of tears about, "the wonderful things you've done for your daughter." Really that just means sticking with it and putting her first and being involved. But I guess that's not the norm they experience from parents. I can't imagine anyone doing any less.

But it was nice to hear.

It manifests in Minecraft

Last year Little Squirrel had cognitive testing. She scored well above average overall, after averaging out her extreme high scores and low scores within same categories, which is where the "atypical" features of autism come into play. Her highest score was in the spatial category on the "copying" task where she was tasked with replicating block patterns after just a few seconds to view the model. She scored 99.5%. I asked her psychiatrist what this could mean about how her brain works, since I'm always hoping for a glimpse. But just like every other useless specialist we've encountered over the years, he said mostly nothing, except to say, "Well, she has a gift." Yes, duh. No one should score that high on an evaluation. A test, yes. Evaluation, no. So ever then since I've been wondering how this "gift" might ever manifest outside of the evaluation.

Then the Minecraft obsession began. Cue block-model-copying gift. It's the perfect utilization.

She is obsessed with Mr. Stampy Cat videos on YouTube, then I noticed she is now building exact replicas of parts of his worlds. Example: She sees his bank with a pig in it; she builds one just like it. She sees his "doggy hockey rink"; she builds one just like it. But what would take me an hour, she does in 5-10 minutes. And they are exact replicas, without referring back to Mr. Stampy Cat's models.

Common Core, you are not our friend

What does this even mean?

Little Squirrel brought home some low scores on math assignments and tests. She tested into the superior range last year for math calculations but the format of the Common Core curriculum works against her logical, literal thinking. She couldn't make sense of the format and wrote "I don't get it" beside a lot of the problems. I didn't get it either when I helped her go through and fix the errors. I can add and subtract and solve for x, but I just can't figure out what they are asking most of the time on these pages.

I am even more opposed to Common Core now that I see how it demands that all children must learn and think the same way. It doesn't allow for any differences and appears to view different as less, or incorrect.

Context makes a big difference

The world is confusing without context. If all the pieces don't fit together. I get glimpses into Little Squirrel's mind sometimes like two from today, which are more examples of her absence of context.

We were driving, waiting at a light and she looked out the window and saw a black plastic garbage on the ground. The bag was moving slightly. "Look, there's something moving inside that bag. I think it's a dog." But what she didn't process was the rest of the scene. That the tree branches near the bag were also moving. That the man's hair, who was sitting beside the bag, was also moving. And everything else in the scene that could be moved by a breeze was moving. But Little Squirrel didn't see any of those other parts in order to make the generalization that the wind was moving the bag. She only saw the bag. And that it was moving.

The next example happens more often than just today. Everytime she plays Mario Kart wii and one of the characters says, "I hate losing!" and she always thinks he says, "I hate music!" which doesn't make any sense in the context of a race and the finish line and winners and LOSERS.