Joy To Gracie… Please!

Cottingly Fairy topped with Christmas hats because Gracie loves fairies

This morning it’s very clear that the vacation “routine” (or lack thereof) is getting to Gracie.  She’s overly sensitive, agitated, moody, grumpy, argumentative, bouncy, and flappy.

It’s always difficult for her when she’s out of the school routine even though she would almost always rather be home.  This time is more difficult because I’ve been sick since the middle of the night on Christmas.  At least it waited, right?

She’s testing her sisters’ patience this morning, so they’re going back and forth between having some fun at her expense and trying to teach her life lessons.  In the life lessons they go back and forth between taking a hard tack and being gentle.  No matter the angle they take, they get the same result: screeches and shouting and nothing for their efforts.

Anneliese finally simply said, “Gracie when we make you mad no matter what even when we aren’t trying you just have to ignore us.”

Gracie: “No I do not.”

Anna: “Gracie, you just have to learn to ignore us.”

Gracie, clearly disgusted and incredulous: “That is not something you can ‘just LEARN!’ You can not ‘learn’ to ignore! That is hard!”

Anna: “I don’t know what to tell you.  You just have to.”

Gracie: “Brat!”

Now the trick will be getting her to allow me to get her to do some sensory activities.  She hasn’t been receptive so far.  I got a kick in a shins and a swat toward the face for my efforts several minutes ago.

It’s time to go re-teach the sisters that when their sister is on the verge of a meltdown, you back away.  It’s the whole Burning Building comparison.  If a building is on fire, would you run into it? No? Well, when your sister has days like this she’s a burning building.  Move away from the burning building.  You likely won’t teach her anything, because it will just burn up.  Wait until the fire is out and it’s been rebuilt.  And she stops using the very literal, “Wwaah” to get across the point that she’s upset and to start her wailing.

I probably should have said, “It’s time to go rescue the sisters…” and I said, “re-teach” instead ha ha.  It’s because they really are so good about teaching her.  They’re wondering teachers for her, and she pays exceptional attention to them.  Most of the time they actually can calm her down without using sensory tools.  She doesn’t want to be upset with them, and she doesn’t want to hurt them.  When things like this morning happen she comes away from it feeling like a bad sister.  In fact, yesterday she accidentally-on-purpose-but-really-accidentally ruined something Anna had set up.  It could easily be redone with some patience, but the look of hurt and annoyance on Anna’s face made it clear to Gracie that she had done something wrong even though Anna told her that it was all right.

Gracie: “I feel like I must be a bad sister.”

Anna: “No, Gracie, you’re not.”

Gracie: “I feel like I must be always doing the bad thing.  I am a bad sister.”

Anna: “No, Gracie, you’re not.”

Gracie: “But… I feel like I always hurting my sister! I not acting like loving my sister!”

Anna: “Gracie, I know you love me.  I love you.”

Mom: “Awww, girls, why don’t you hug and make up?”

Anna: “Mommy, I’m just not ready to hug Gracie yet.  She did upset me.  Gracie, you need to help me fix this.”

Gracie, sniffling: “Okay.”

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Word Play and Autism

Gracie 9 yrs old

Bathing time is a battle nearly every single time.  It’s rare that The Girl will ask to bathe without prompting.  Oh, and by the way, she hates it when I refer to her or her sisters as The Girl when I’m talking to the cats.  ”Awww, Luna, did The Girl annoy you while you were sleeping?” Yeah, that gets a reprimand from Gracie.  She’s not The Girl in real life because of course she has a name that must be used.  I think that’s funny because she’s a child who loves word games.  She loves words that have dual meanings and dual spellings.  She despises similes, metaphors, analogies, and idioms, but she loves other types of word play.  However, that doesn’t mean I don’t use all of that to my advantage.

Sometimes all it takes is a play on words to get Gracie to do something that I need her to do.  I guess it’s a form of reverse psychology along the lines of, “Oh no, you locked yourself in the bathroom!” versus “Oh no, she locked us out of the bathroom!” wording.  I figured out how to get the child to bathe.  This is a Very Big Deal.   The ODD part of the Autism takes over and it’s almost always a battle.

“Gracie, it’s time for a bath.”

“I don’t need a bath.  I don’t stink.”

“It’s a good time to have a bath.  Your hair will be soft and we can get the marker and dirt off of your skin.”

“I DON’T WANT A BATH! I HATE BATHS! SHUT UP!”

“Gracie, if you don’t take a bath, I’m going to take your bath for you!”

“NO! IT’S MY BATH!”

::stomps upstairs while stripping::

Part of the trick is being willing to follow through with my “threat.”  Sometimes I have to go so far as to step into the tub with my clothes on, although she’s called me on that one once or twice so I also sometimes have to start taking my own clothes off.  That gets her to shove me out of the way and hop into the bath tub with a fierce,

“HA! I GOT IN FIRST! YOU’RE TOO BIG! IT’S MY BATH! YOU! CAN’T! TAKE! IT!”

Of course once she’s in the tub, she doesn’t want to get out.  :-)  I’m guessing this won’t work through the teen years or into her twenties.  WTF will I do then?

It was once explained to me that while it feels wonderful to be in the bath, as it’s great for sensory processing, it’s the transition from wearing clothesto “not wearing clothes” … then from being in the air and dry to being in the water… then from the water changing temperatures … dry hair to wet hair

… and then having to get out again and the anticipation of it all on top of the transitional changes and sensory issues.  I get that, I really do.  Which is why I’m relieved that for now, playing with words the way Gracie seems to enjoy doing distracts her so much from the initial transition of difficult sensory changes.

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Succinctly Put: Why You Can’t Blame Vaccines For Autism

This is a continuing controversy that has been debunked over and over and over ad nauseum scientifically.  It’s been discussed in circular arguments.

This is an excellent blog post as to why that e-mail forward about monkeys somehow proving the MMR vaccines and/or mercury in vaccines are to “blame” for autism is so ridiculous.

The Thinking Person’s Guide to Autism: Whacking Monkeys In the Name of Science.

 

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Tick or Tic?

My girls all came home from school happy and cheerful and it was a wonderful homecoming.  They all greeted me, smiled, and there weren’t any hints of sibling armageddon.

Then came the e-mail titled simply, “Grace.”

FYI!!

Mrs. Para-Professional pulled a tick off of Grace’s pants today after recess. You might want to give her a good look when she gets home today.

Teacher

*names have been changed to protect those who have not given permission to participate

Is it horrible of me that my first thought was, “Of course it’s the child with Sensory Integration Disorder that I have to do a tick check on.”  My next thought was, “Of course it’s the child with the thickest, curliest, coarsest hair, longest hair.  This is going to be so much fun.”

For the record, it was the opposite of pleasant.  This is one part of parenting that “they” don’t tell you about before becoming a parent.  The necessity of tick checks and the joy of doing them.  How thorough you have to be in doing them.  How you have to explain it to your child adequately and get across how important it is without giving them panic attacks.

During the tick check, Gracie did help.  I had her in the bath tub to make it easier, and we made sure that her freckles weren’t ticks.  The girl who hates freckles.  I think she was hoping her freckles were ticks so that they would come off.  She kept trying to convince me that each freckle was a tick and needed to be scraped off.  Yeah… one freckle has a soon-to-be scab next to it now.

Luckily we came away mostly unscathed.  My daughter is tick-free.  Being such, it’s time to go prepare the lovely rotisserie chicken that The Mister was kind enough to pick up from the grocery store for me.

By the way, every time I use Gracie’s name in a post, my tag suggestions from W-P are hysterical.  They are God, Theology, Christianity, Religion and Spirituality, Heaven, and other religious related tags. I only just now figured out why those tags pop up in so many of my posts.

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Anti-Autism Drug GRN-529? Rubs Me Wrongly

EEG of brain; via childrenshospitalblog.org

This could be the Mama Bear coming out in me (gosh, it really must be because I HATE the term Mama Bear), but this so-called experiment and drug GRN-529 (article pressed below with link) that supposedly reduces autistic symptoms in mice rubs me completely the wrong way. The article is very careful to refrain from calling  GRN-529  a cure and to state that it’s treating…  no wait… REVERSING symptoms of autism, such as making the mice more sociable and minimizing obsessive-compulsive behaviors.  But tagging it as a drug that specifically reduces ASD symptoms… especially when those qualities are present in so many other different disorders and are so often simply personality quirks in people… it bothers me as a whole.

Of course there’s the whole “messing with the synapses and neurotransmitters of the brain” thing.  Considering these mice weren’t actually given autism, since that’s impossible, but that they were manually given symptoms that’s one of my reservations with this experiment.  I also have issues with the mice being inbred on top of their manufactured “symptoms.”  Maybe that’s a mountain out of a molehill, and I can’t quite articulate right now why that one bothers me so very much, but it does.  I think it’s also a bit disingenuous to claim that it’s not trying to cure ASD when it’s attempting to target the neurotransmitters the way that they would.

Don’t get me wrong here, I’m not against medications when they’re warranted.  I’m not against researching Autism Spectrum Disorders and all of the surrounding issues.  I think part of what’s bothering me is that the more I learn, the more it seems to me that ASD is a collection of neurological differences and disorders.  I believe that at its core, ASD is genetically based and ASD’s affect a wide array of neurological issues.

The behaviors can be so very difficult to deal with as a family, as a parent, and especially the child who becomes a teen and later an adult.  The destructive behaviors in high functioning individuals should be approached on an individual basis.  I worry, I think, that a drug like GRN-529 might end up being something that is “pushed” much the way ADHD medications are pushed for highly active and spirited children that aren’t actually ADHD.  Don’t like the symptom? Drug it up even if it’s not therapeutic.  Let’s make everyone else’s lives easier.  That might sound contradictory coming from me, since we have Gracie (my darling 3rd grader who has Autism) on a low dose of an ADD medication along with her seizure medication.  She’s able to concentrate and work at school.  She’s been better able to follow directions.  In her own way she has commented on her improved ability to focus, and that she likes that feeling.  She has less anxiety while at school because of it.  She has less anxiety about bed time than she used to (granted it’s still there, but not like before).  We’re also in the decision-making process for our eldest daughter regarding her ADHD.  It’s not easy making these decisions and figuring out if what we’re considering tips the scales in “we’re doing this for her and not for us” favor.

This particular bit of mouse research feels a bit misdirected.  I know that the research itself is much more complicated than the article is laying it out to be, but ASD is so much  more than that area of the brain.  It’s so much more than OCD and social awkwardness.  So maybe my feeling is that this bit of research is missing the point more than anything else.

Or maybe I’m over-reacting or misunderstanding or being overly critical or (gasp) all three.

Experimental drug reduces autism symptoms in mice, gov’t study shows – HealthPop – CBS News.

April 26, 2012 1:13 PM
Experimental drug reduces autism symptoms in mice, gov’t study shows

(CBS News) Autism affects one out of every 88 American children and while there are available treatments for early intervention, there is no cure. A new government-funded study has found an experimental treatment is effective at reversing symptoms of autism in mice.

For the study, published in the April 25 issue of Science and Translational Medicine, researchers from the National Institutes of Health bred a strain of mice to display autism-like behaviors. Similar to how children with autism have social deficits and engage in repetitive behaviors, these mice did not interact and communicate with each other and spent an inordinate amount of time engaging in repetitive behavior – in this case self-grooming.

Cue the experimental drug called GRN-529. The drug was designed to inhibit a type of brain cell receptor that receives the neurotransmitter glutamate. Glutamate is typically involved in learning and memory processes and stimulates other areas of the brain and nervous system.

When mice with the autism-like behaviors were injected with the experimental compound, they reduced the frequency of their repetitive self-grooming and spent more time around strange mice, even sniffing them nose to nose. When tested on a different strain of mice, the experimental compound stopped all repetitive jumping behavior.

“These new results in mice support NIMH-funded research in humans to create treatments for the core symptoms of autism,” Dr. Thomas R. Insel, director of the National Institute of Mental Health, said in a statement. “While autism has been often considered only as a disability in need of rehabilitation, we can now address autism as a disorder responding to biomedical treatments.”

The researchers said although most mouse brain findings often don’t translate to humans, the fact that these compounds are already being tested for an overlapping condition strengthens the case for the drug’s effectiveness. This class of compounds is currently being studied in patients with the genetic disease Fragile X syndrome, the most common inherited form of intellectual disability. About one third of patients with Fragile X syndrome also meet criteria for autism.

“These inbred strains of mice are similar, behaviorally, to individuals with autism for whom the responsible genetic factors are unknown, which accounts for about three fourths of people with the disorders,” noted study author Dr. Jacqueline Crawley of the NIMH. “Given the high costs – monetary and emotional – to families, schools, and health care systems, we are hopeful that this line of studies may help meet the need for medications that treat core symptoms.”

Some experts exercised caution with the new findings. In an accompanying editorial in the same journal issue, Baltazar Gomez-Mancilla, executive director of translational medicine neuroscience at Novartis, wrote, “It is too early to speculate as to whether or not autism spectrum disorders can be reversed by small molecules.”

Dr. Uta Frith, a professor of cognitive development at University College London, told BBC News that neurotransmitter problems have long been suspected as an origin of autism, “However, it will be a long time until these findings can be translated for human patients. Tampering with the synapse may well result in undesirable side effects,” he said.

Related articles

• Experimental Drug Improves Autism-Like Symptoms in Mice (abcnews.go.com)
• Agent reduces autism-like behaviors in mice (naturenplanet.com)
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Eff You, School Vacations!

Transitions.  Transitions suck.  I detest them because my daughter detests them.  Because of our difficulty with transitions on a daily basis I’ve come to despise school vacations with a passion.  My daughter already hates school because she has to transition from sleeping to waking and from indoors to outdoors and from the bus to off the bus into the school.  Granted, she does really well leaving school and coming home.

Just to give you an idea, she also hates leaving home to go just about any place else.  We have to use very strong motivation to get her to go almost anywhere that isn’t home, including playing in the yard outside.  Being in the house is comfortable and safe and stable.  Things don’t change much.  The lights, scents, colors, and textures don’t change at all.  The sounds are within her control for the most part.  Anywhere else, those things are out of control completely.  There are only a few other safe places to her, but we still need to coax her to get to those places most times because of the transition it takes to get there.

You can well imagine now why we have such issues every single morning getting ready for school.  Even if I home schooled her, I suspect we would have this problem.  Although if I home schooled her she would want to play video games all day long and wouldn’t comply with the program, let alone the fact that I would have no idea how to educate her.

When we have school vacation, or even just a day off from school due to a teacher inservice day or a sick day, it throws off our entire routine.  We have our home routine and school day routine, and once we get her involved in the school routine she does get invested in it.  The difference is she’s much  more emotionally invested in the home routine even if she feels as if she MUST follow through with whatever routine she starts.  That’s one benefit of the need for routine when it comes to transitions.

The last two mornings haven’t been pleasant.  Yesterday was simply… tragic.  She gets so distressed at the fact that she’s awake even when she wakes up on her own, and then the thought that she has to get out from under the covers.  She becomes combative over beginning the routine.  She screams insults and edicts, and hurts her own ears and body.  I can commiserate on some level since I’m going through a particularly difficult Fibromyalgia flare-up of my own since Sunday.  Everything feels excessive to me, and I’m having some trouble handling the physical parts of her lashings out.   Today was better for Gracie than yesterday was, and luckily once she does get to school she hops off the bus and actually SKIPS TO CLASS.

She freaking skips.  She skips into her class room with a smile.  This happens most mornings, I’m told.  She’s a pleasure to have in class.  When I have to visit the school for one reason or other and I happen to see her in the hallways she’s always looking happy.  She used to get so distressed at seeing me at school whether it was planned or not that I’d have to take her home with me.  She fusses a bit now, asks if she’s supposed to come with me, but if I say no there aren’t tantrums.  Of course if I do have to pick her up for an appointment she’s ecstatic to leave and that transition is nearly seamless except for the fact that it’s an appointment and not coming directly home.  Unless we’re going to her Auntie Tracy’s house.  Any time we go there it’s a perfectly seamless transition.  Every single time, because her best friend Ella is there.

Anyway, it’s not as if she actually hates school.  I know that when she screams in my face and is kicking and flailing at me that she hates school every morning that what she means is she hates the transition process no matter how gentle we try to make it.  We have some good mornings, but statistically they’re the opposite of good.  Especially after school vacations.

Therefore, eff you school vacation.  Especially Spring Break, since Summer Vacation isn’t very far off and February Vacation wasn’t very long ago and we had to deal with that shit barely two months ago.

Eff you unkindly.

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“Dear Shopper”

Bobbi Sheahan | Guest Articles: Dear Shopper (click here).

Oh boy, can I relate to this article.  Four years ago I had an incident with a woman at a store where there was a very ugly confrontation on her part and I was forced to stand up for myself and my daughter because I not only had her with me, but my other daughters too.  I’ve never had quite as bad an incident unless you count insensitive teenagers at  Six Flags and other places, but we do get our fair share of idiots almost wherever we go.  Many of them are Mommy Drive Bys and they don’t know any better, but I do wish people would think before they speak.

Just Call Me Advocate Mom ever so gently (click here)

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A Mom Commisserating

I know most moms tend to get a bit misty-eyed when their children are sick.  Most moms would take the germs and illnesses and disorders into themselves if only it meant their children wouldn’t have to suffer.

Oh, if only.

We had a snow storm blow through during the night dumping about three inches on us last night.  My sweet Gracie is sensitive to barometric pressure changes as I am, so on top of her other “not feeling well” problems she had a headache.  She slept fitfully last night, waking repeatedly to check to see if she was still in bed with me and to make fearful trips to the bathroom.

She was a trooper this morning driving her sisters to school.  There was a snow delay so she could have stayed in bed longer but she was so  uncomfortable she got up when she normally would have.  We had to drop off the urine culture we collected last night before dropping Anna off at school, and Gracie could smell it before we even walked into the office.  I couldn’t smell a thing, and neither could Anna but it was all she could smell.  When we got back outside she just kept breathing in the snow-scented air as deeply as she could.  She even preferred black burning diesel smoke from a passing tree cutter to the smell inside that lab.

When we came home she snuggled up with me and Daisy for a while, but kept wandering because she’s having trouble getting comfortable.  She even ate some yogurt.  She’s been napping on the couch for a while getting some much-needed rest, hopefully fighting off some germs.  I’m praying that we’ll get the results of the cultures soon so that she can get her medicine and start to feel better.

I know how awful these things feel.  I know how uncomfortable they are, how miserable they get.  I feel horrible no matter while child gets them.  It just seems more… I don’t know… pitiful? sad? heartbreaking? when it’s Gracie because I know it’s progressively worse for her than the other girls.  She waits longer to say something.  But she also feels the pain differently and more profoundly.  It’s harder for her in so many ways because she has to work so hard to communicate how she’s feeling.  She’s forced to communicate yet that’s the last thing she wants to do.  She’s been nonverbal all day except to tell me her stomach hurt and then the screaming in the bathroom.  She starts a sentence and then stops.

I know this will end.  I do know this.  Today feels like the longest day ever, yet it’s only 1:15 PM.  We’re further along than we were yesterday and even last night.  But it’s dragging on.  I can only imagine how she feels, especially since her concept of time is so different.

UPDATED:  Our pediatrician is great.  She called to check on the little princess to see how she’s doing.  They called the lab but the results weren’t ready yet, so the doctor agreed to do a broad spectrum antibiotic because of how much pain Gracie is in.  I didn’t even ask her to do that.  She just saw how miserable Gracie is during the appointment and knew that it’s getting worse.  She even made sure that the Rx is in pill form since the girl won’t take liquid meds.  She’s already had her first dose and gets her last one at bed time.  We’re on the road to feeling better!

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Illness and Autism

Gracie got to pick up her glasses this past Thursday.  She’s barely taken them off because she loves them so much.  She loves how the frames look and she loves how they look on her.  I can’t blame her, she really looks beautiful in them.  It’s a side bonus to her that she can see better.    The fact that she hardly takes them off is beneficial in that they’ll be less likely to get scratched.  She loves the fact that in the sun they turn into sun glasses.  At night she’s vigilant about getting them into a case, but she needs help keeping track of it.  Otherwise she’s very proud of herself and her glasses.

Apart from that, we’ve had deteriorating moods from her.  I noticed that she was having more toileting accidents by Friday night, worsening through the weekend and planned to take her to the doctor if it didn’t improve.  She dreads going to the doctor, like many children, but mainly because she worries that she’ll get Dr. The Man.  She loves Dr. Lady.  But when it has to do with the girlie bits, and she knows she’s going to have to pee in a cup, it doesn’t matter who the doctor is.  She hates peeing in public and semi-public bathrooms. It became unavoidable even though she’s been trying not to drink enough to pee.  She screamed because it hurt so much, and the poor thing couldn’t hold it any more.  That did it.  I forced her into the shower and then the car and made her drink water and then told her if she drank her big cup of V-8 it would help fight the UTI germs.  She gladly drank it up but resisted her hardest at the doctor’s office to comply.

We sat in that bathroom for an hour while I tried to coax her to pee in that damned cup.  My ears are still ringing.

“I HATE YOU!” as I closed the bathroom door.

“I HATE PEEING!” as she sat down.

“GET YOUR HANDS OFF ME!” as I eased her back onto the toilet.

“YOU! ARE! HURTING! ME!” as I gently gave her sensory on her arms.

“Good for you for using complete sentences!”

“I HATE COMPLETE SENTENCES!”

“Just a little bit of pee, that’s all we need.  I can hear drips so I know you have to go.”

“I HATE PEEING AT THE DOCTOR! YOU HEAR NOTHING! YOU DON’T HEAR PEE!”

“The sooner you pee, the sooner we can go home.”

“AAAHHHHHH! I WANT TO GO HOME!”

“Let’s calm down first.  Maybe the doctor will just take a look at you and let you pee in a cup at home.”

“I HATE PEEING IN CUPS! ANYWHERE! I DON’T! WANT! TO! PEE! I DON’T WANT! TO! HURT!”

“I’m not fooling around here, honey.  You have a couple choices:  pee now in a cup and we can get medicine and a treat on the way home and get better sooner OR pee in a cup at home and come back tomorrow, get medicine tomorrow, and get better later.  What’s your choice?”

“YOU FOOL AROUND! PEEING IN CUPS IS STUPID! I! WILL! PEE! ON! YOUR! HAND! DON’T! LOOK! AT! MY! BUH! GYNA!”

“I promise I won’t look.  I just want to catch pee in the cup.”

“CUPS ARE STUPID!”

::sigh::

::knock knock::

Doctor Lady: “Why don’t you come on out and I’ll examine her, she can give her voice a rest, and she can pee in a cup at home?”

Yes, lets.

The doctor then asks a ton of questions that are common and easy to answer when you have a child that a.) doesn’t have Sensory Integration Disorder and b.) doesn’t have Autism.  I can tell you that her stomach hurts, but “stomach” is subjective.  I can tell you that her appetite sucks.  I can tell you that she’s smart enough to stop drinking fluids so that she doesn’t have to pee much.  She’s been grumpy and more and more nonverbal the worse she feels.  She’s been clingy and had high separation anxiety lately.  She’s even been a bit snugly when this girl is rarely snugly but shies away from touch.  She’s showing some classic signs of a UTI and/or bladder infection but the not-peeing-in-a-cup thing throws a kink in narrowing it down.

But don’t you know that girl did it in the clean catch cup within an hour of getting home?

And shock of shocks, she asked for turkey tacos tonight.  But not just that… she ATE a whole taco plus some rice and then asked for full seconds and ate them.  Then ate thirds on the rice.  She also had another cup of V-8.  Absolute shock.  I told her how proud of her I am and she gave her shy smile and said, “Yes.”

Then she spent the evening asking me for definitions of phrases and words.  She asked me about sound-alike words and their different spellings.  She fell asleep peacefully next to me on my bed.  She looks like a sweet little angel.  You’d never know that her demon-voice was screaming and shouting and hurling insults in a doctor’s bathroom just five hours earlier.

This was easy compared to past bouts with illness.  And we have to get up and do it again tomorrow.  Luckily I already have the liquid gold in the fridge already, so that’s one horror down.

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Where’s That “How To” Autism Manual?

The beginning of the school year honeymoon is over. I got my first e-mail from Gracie’s teacher this afternoon that she had a really good morning but that her afternoon was “very rough.”  She had difficulty following directions from (it sounds like) both the teacher and her para, and earned a strike for it… which means it was really rough.  She gets a lot more leeway than the other kids do when it comes to certain behaviors and if she got a strike it had to be serious.  She apparently was also intentionally writing “messily” repeatedly.  You know… because she could.  It’s a spite thing when you piss her off.

Some things are just universal amongst all children.

I can read between the lines.  She was being uncooperative and combative.  The teacher couldn’t tell me what it was that turned her around because once Gracie gets like this she’s nonverbal.  You might eek out an impassioned,

“YOU! ARE! MEAN! and you hurt my feeling!” ::weep::

… if you’re lucky.  But at least then you know that it was a specific incident that triggered the behaviors.  That didn’t happen at school today as far as the teacher could tell.  And Gracie wasn’t talking.

But sometimes there isn’t a reason.  Or it’s not a reason she can express.  If she feels like she’s being punished for her feelings, then she gets withdrawn and mopy and fresh.  Then, of course, a strike for going over the limit of tolerance allowed in the classroom but to her it’s not justified or it’s overblown or it’s too much to handle or it came out of nowhere or she’s feeling guilty and horrible about her behavior.  It might even be a combination of those things.

At least I knew it had been a Very Bad Day before she got off the bus.

The first thing Anna said to me getting off the bus was,

“Ohhh Gracie is upset! She tried to hold her tears in the whole bus ride home! She won’t tell me what’s wrong! I couldn’t make her happy! I tried! I tried!”

The first thing Gracie did getting off the bus was put her little mouth into that upside down U like when she was a baby and tears sprang to her eyes.  I asked her if she needed a hug before leaving to get her big sister from school.

“I quit! I…” ::lip quivering:: “I just give up!”

Oh, the heartache. Then came her choking sob because she didn’t want to cry.  I let her know that I had heard she had a bad day and we didn’t have to talk about it right away.

The worst thing you can do with her when you know she spent the day being upset and “not talking” is to make her talk.  You have to wait and not ask lots of questions right away, and just to be reassuring and take control.  You also have to hold back on the hugs.  She doesn’t like to be touched, hugs and kisses included, spontaneously.  She needs warnings plus permission, so I try to remember to let her lead.  She allowed a small “side hug.”  You know, the kind guys give to each other on the sly.

When we got home a few minutes later, we just sat together on the couch and I told her about the e-mail I received saying only that the teacher let me know she had a rough afternoon after a really great morning and that the teacher felt badly that she didn’t know what was wrong.

Through my other daughter and The Mister, I discovered that she didn’t sleep well at all last night.  I’m actually still shocked about this because if she doesn’t sleep well then I don’t sleep well.  She always tells me when she can’t sleep especially if she’s not feeling well or having trouble getting comfortable or whatever it is.  Not last night.  She was tossing and turning and (per Anna) snoring until at least 4:00 AM.  Of course she’s overtired.  I know that played into it.

I promised her that tonight would be early supper, early bed, and plenty of rest and if she has trouble sleeping to come get me.  I got slow nods from her, as she carefully avoided meeting my eyes.  I told her that tomorrow will be a new and better day, and we would both have to work at it and her teacher will be too.  By this time she was on my lap (!!!) and snuggling with me, killing my left arm trying to get me to hold her 9-year old self like a baby.  She was going back and forth between relaxed and needing a lot of comfort.

I knew, though, that I had to get to the root of it out of her.  How else can we avoid a repeat? I gave her some time to physically relax and loosen up, gave her some sensory, and told her I wanted to figure out what happened with her but I would need her to talk to me.  Tears.  Pout.

Let me just pause here for a moment tell you how difficult it is trying to have a back and forth interview with a child who is nonverbal due to emotional upset and inability to string together the words needed until she hears the right combination:

It’s so difficult it’s like trying to build a child’s toy you’ve never seen and have no idea what it is using directions without a diagram in a language you’ve never heard spoken, let alone read, while trying to simultaneously brush your cat’s teeth.

But after this 30-minute it’s-easier-to-brush-an-angry-cat’s-teeth-than-interview-this-child session, it came down to something simple.

“I needed my mommy.”

I was going to write more, but I’m crying now.  How do you fix that when your Autistic child is having a bad day at school?

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