Just a little nuts

Just a little nuts
A blog about single parenting & autism

Wednesday, December 9, 2015

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...

Tuesday, October 6, 2015

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. 

Friday, September 18, 2015

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.


Tuesday, May 19, 2015

Dear Bitchy Bus Stop Mom,

Yes, I know the constant monkey sounds and monkey act that my kid does at the bus stop every single day is annoying. But at least she is cheerful every day. Not moody and bitchy like you, or sullen and miserable like your son appears to be (can't say I blame him). And here's a tip about dealing with autism (not that you would know or care): you have to be consistent. You can't play along with the monkey stuff only on days you feel like it, then reject it and be annoyed on the days you don't. That's why I don't play along with it at all, because every joke I laugh at or any silliness I participate in is a careful choice, because I know I could be stuck with it every day for the rest of our lives. That's why the monkey thing has lasted so long, because just enough people have laughed or humored her or played along on occasion. That's all it takes.

Friday, April 24, 2015

Locked out

Got locked out and it was another reminder that we are all alone in this. I couldn't think of who to call and of course my phone was locked inside too and I don't know any phone numbers. I went to the elderly neighbors across the street and used their AOL to look up my landlord's phone number to call and beg her to come unlock the door, and also to look up LS's music teacher's phone number and leave a message that we weren't coming.

The neighbors are very sweet and if angels smoke like chimneys then they are angels.

They put on a movie for LS to watch. At one point the grandpa neighbor made a comment on the movie, asking LS if she saw the funny part....to which LS did not even look at him and just said flatly, "I can't hear." (She hates it when people talk around her, and especially if she's watching something--though it's fine if she is the one talking and the one wandering off not even paying attention to the movie or show).

I was HOPING he didn't catch what she said and how rude it was. I whispered to her, "You need to be polite."

And I know that I won't bother explaining to them that she has autism because they won't get it.

This is just another example of what our autism looks like.

Monday, March 9, 2015

Misadventures with Methylphenidate

Little Squirrel started prozac this time last year. She's still on the very low dose and there have been noticeable benefits related to irritability and self esteem.

Before the Prozac....
 

Since the Prozac...

Because our experience with an antidepressant has gone so well, I finally decided to give ADHD meds a try, for the main reason that LS's academics are slowly going downhill. The kid whose greatest strength was academics is losing ground. The skills and abilities and gifts are there but she just can't focus to save her life, or sit still, or listen, or hold one thought in her head at a time. Every time I fill out one of those behavior questionnaires for ADHD, it's always all 3s. All 3s for all these years. The doctors and counselors never push, but their eyes say enough: they are just itching to give her their pills. But I have always said, not yet. 

Then one day I said, okay let's do it.

The good experience with the prozac softened me up. And of course, research. Hours of it. What I like best about trying the meds is that it's not like the psychopharms that have to build up in your system so it takes awhile to find out if it's helping. With most of the stimulant meds, you'll know right away. 

My greatest concern was the side effect of sleep disturbance. 

"Protect her sleep," was the advice of the very first behavioral consult we ever had when LS was 2 1/2. That is what I've done. Sleep is sacred like a religion around here. LS is a good sleeper finally now and it's all I can count on this life, that she'll be out like a light and she'll stay that way until it's time to get up. 

Yet, despite the threat against sleep, we proceeded.

I got LS involved, and used words like "potion" and "experiment." She has admitted to the trouble focusing and given hints about how really freakin' nuts it is in her head most of the time. She agreed to try the new pill. We planned to take it first thing in the morning on a weekend and see how it goes. 

At first the rx was denied by insurance. They wouldn't pay for the capsule but they would pay for the tablet, of the exact same damn thing. That meant I had drive back up to the doctor's office, get another hard copy rx and then take it back to our pharmacy. This delayed things a few days. Once I finally got the stupid pills, it was after work on the day I am off in time to have 20 (kidless) minutes to do all the grocery shopping for the week. After that I go on autopilot for the rest of the day. We got home and I threw the groceries around, set the pill bottle down with the other meds, gathered LS's piano books and off we went to lesson. 

Later that night before bed time, I set down LS's vitamins and allergy pill like I always do. Or what I thought was the allergy pill...

"That pill tastes weird." LS commented. She had already swallowed it and wandered off. She will take any pill that I set out on the table. So I have to be very careful....

I froze. 

I picked up the new pill bottle and the allergy pill bottle. They both contained round white identical tablets.

!

I had just given LS Ritalin at bedtime!

Meth before bed???!!!!

WTF!

I almost panicked then remembered her doctor said he has patients who actually take it for sleep, so they can calm down for sleeping. For real. Unbelievable. But true.

So I took a deep breath and continued the bedtime routine as if nothing was different. 

And it wasn't. 

At least not too different. She seemed to go to sleep quicker than ever. Just a few odd crashing sounds a couple hours later. I peeked in and she was sleeping sideways in the bed, which was different. 

I uneasily went to bed....

...only to be awakened at 3am by a wide awake, jazzed kid. 

"Hi, um, I'm not tired anymore," she burst into my room with the announcement. 

I patiently explained that I understood why she was up, it's the new pill, she can go read or play Minecraft, or do pretty much anything she wants, just do it quietly.

That held her off a couple hours until she came back, at 5:30am, completely dressed for school, and announced she was ready to get up.

Since it was my fault for mixing up her pills, I forfeited my last 45 minutes of sleep and got up with her. 

She was definitely focused, I observed. On Minecraft. Even more intensely than ever. Until it was time to leave for school, she gave me a complete dissertation on it, the speeded up version. 

I debated whether or not to email her teacher an FYI about what to expect for the day, but I decided it was too hard to explain. And embarrassing.

It was my volunteer day though, and I ran into her teacher in the hall and asked how LS was doing and gave a brief explanation, and her teacher was very nice about it, but it was still really embarrassing. Yet, her teacher said LS was doing just fine and that she didn't notice anything at all. 

So far so good.

And it's an 8-10 hour med, so it should be well worn off for bedtime. Except that it wasn't quite. I had to do a little extra coaxing to get her settled to sleep, but thought that could have just been because of the disruption of routine. She slept all night like normal. 

Since I always believe in jumping right back on the horse, instead of waiting for the weekend, I decided to give the med another try, but this time in the morning, as directed. I told LS to let me know how she felt during the day.

I hoped to catch another easy break like with the prozac. 

Sadly, it was not to be.

LS immediately reported that the new pill did help her focus but also made her feel tired and sad and miss me all day. Her social group teacher also said there were more tears than normal. 

If that was the only side effect, I would have encouraged LS to try the new pill one more time, just to be sure.

But that wasn't the only side effect.

Our sacred sleep was threatened! That night she had trouble going to sleep again. So much for the effects wearing off before bed, as described. Then she got up at 3am again! 

The experiment was canceled after that. No more of that "potion" for sure. It took a few days to get the good sleep pattern re-established. Even though the science claims the side effects wear off over time, we didn't see any noticeable benefits worth giving up our sleep for who knows how long and risking our health and sanity! 

*Methylphenidate is the main active ingredient in Ritalin, Metadate, Concerta and other brand name ADHD meds. Ritalin has a bad reputation and people think they are getting something better with other newer brands, but it's all the same thing. 

Tuesday, January 27, 2015

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.

Monday, January 12, 2015

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.

Friday, January 9, 2015

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."

Monday, January 5, 2015

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.