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Posts Tagged ‘ASD’


Photo from GabeZimmer.com

Tongue Tied

My eldest is watching some show about a boy band, and there was a song with a catchy tune.  Gracie was half-listening while watching her little sister play a video game.  All of a sudden she comes into the living room paying more attention to the song with a horrified look on her face.

“It would not be good to be tongue tied!”

“What are you talking about, honey?”

“Having your tongue tied would hurt! It would be BAD!”

I realized that she had a mental image of someone’s tongue being tied in knots or something similar.  Maybe it was tied like a bow on a shoe.  Still, I had trouble hiding the slight smile on my face because she had misinterpreted the phrase but mainly because I was imagining what I knew she was imagining.  Then suddenly we were both giggling.  After a few minutes she was puttering in the kitchen making a snack and I could hear her giggling.

When she came back into the living room I explained what being tongue tied meant according to the song.

“So honey, when someone says they’re ‘tongue tied’ it’s a saying.”

“Oh no.”

“Yes.  It means that they’re having trouble saying what they really want to say.  Like in the song the boy wanted to tell the girl that he really likes her a lot and maybe loves her but she makes him nervous so when the words come out of this mouth they come out jumbled and garbled.  Tongue tied.”

::eye roll::

When I showed her the photo I’m using for this entry she smirked.

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Image From Rainy Day Gal

Girl Scout Samoas Cookies

We got back from Gracie’s Girl Scout meeting a little while ago. We have the meetings in one of the historical houses in the historical district, and the girls have their meetings in one room while waiting moms like me usually wait in the kitchen and listen at the doors or play on our cell phones or help with the meeting when asked (well actually, I’m there on hand in case The Girl needs me for some reason although she’s at a point recently where she would probably do better if I weren’t there).

It was a difficult meeting for her today because her SPD was in high gear. At first she came to me begging to leave, telling me,

“It is Too Loud. I need to leave now.”

I was proud of her for the fact that she self-advocated and told me very clearly what she wanted and why.  That said, I asked her to try to find a way to make it through the meeting in case Miss Girl Scout Leader had something fun planned.

She took some “emergency gum” from my purse and chose to sit at the kitchen table, listening to the meeting that took place in the next room.  When it came time to participate she would go in briefly but she still couldn’t handle the noise for long.  At times it got so loud that she would close the kitchen door leading to the meeting room to almost-shut.  When that happened,

“They are too loud.  I need to close the door so that I do not hear them.”

Again, she self-advocated for herself in action and explained her actions.  She was polite about it, but firm.  She didn’t announce it to anyone except to me.

She got to do her crafts at the kitchen table and was so happy about that.  Thank you, Miss Troop Leader, that made her day.  The girls made little cookie trays with tiny felt cookies that were turned into a pin.  The felt cookies were supposed to be chocolate chip, but since Gracie’s favorite cookie is the Samoa she turned hers into a tiny batch of Samoas.  She’s the only that did.  There was another cookie pin that was supposed to be a cute Thin Mint with a bite out of it and a phrase on it that said, “Hey who took a bite out of my Thin Mint cookie?!?” She was appalled at the thought of anyone taking a bite out of her Thin Mint and then pinning it to herself or her vest, so we didn’t cut out a bite of cookie.  Instead we pinned the little tag with a Samoa sticker on one side and her cookie sale goal on the other (100 minimum).

She kept pretending during all of this that the tiny cookie tray she made was burning hot just-from-the-oven, giggling as she did so.  On the way home, Gracie couldn’t speak but she processed the meeting.  Every now and then she giggled while holding the “hot hot hot tray.”

By the time we got home the slight rainy drizzle had turned to pellets of … frozen something … but she liked the sound so we sat in the parked car for a few minutes to listen to the quiet sound of the almost-snow pelting the car.  She sighed, gathered herself, and when I asked her if she was happy that I had “made” her stay at the meeting instead of leaving when she asked, she didn’t respond …

… but she didn’t say “no.”

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I meant to reblog this earlier in the week.  It’s a holiday safety post for families with special needs children that have Autism Spectrum Disorder and Sensory Processing Disorder with tips on how to prepare for a more pleasant experience.

Prepare For July 4th ASD-Style | Ever So Gently.

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Due to textural “issues” my middle daughter, dear sweet Gracie, detests many foods.  We can thank Sensory Processing Disorder for this.  She has recently figured out that there are some foods that she might otherwise enjoy if it weren’t for the texture.  I don’t press her on the issues, ie. I don’t force her to eat what she doesn’t like.  I will offer her foods I’m sure she would dislike and has declined in the past just in case she chooses to try it.  Sometimes there’s success and sometimes there isn’t.  Sometimes she’ll taste it and swallow it, but never takes another bite.  That’s a success.  Most times she lets it sit on her tongue, or touches it with the tip of her tongue, and then runs to the sink or garbage can to spit it out and then rinses her mouth with a drink she enjoys.  If she remembers to spit it into a receptacle that’s success.  The rest of the time it ends up spat out vigorously on the floor complete with facial expressions and vocalizations letting me know just how offensive it was. 

Tofu in any form typically ends up on the floor.  In the past couple of weeks, she held it in her mouth long enough to make it to the garbage can.  I was just happy that she was willing to taste it to see what spices I was using to prepare it.  Each and every time, she insisted it was nasty with a nasty texture.  With vigorous spitting.  

Last night I cubed up some extra firm tofu.  I put it in a pan with a little butter and olive oil, chili powder, cumin, dried onions, and Lawry’s salt.  Just enough to season the olive oil and coat the tofu.  Then I tossed the tofu enough to heat it through and soften the dried onions.  Anna took half, and I took the other.  

While watching TV with our bowls of tofu, Gracie came over and started sniffing the air.  I looked at her suspiciously, and wondered if I should bother making the offer or just give up.  She was expecting me to make the offer, so I told her what I used to cook the tofu with.  

“Hm. Spicy.”

So she was anticipating what the flavors would be like.  Interesting.  She still looked at the bowl and came closer, so I offered her a small bite.  She chewed it and rolled it on her tongue which alone was progress regarding tofu.  Because it was expected behavior, she ran to the toilet and I could hear her spit and flush.  

But then she came back with the same expectant look that I would offer her a bite.  I’m a glutton for punishment, so I offered her another bite.  

“Mmm.  Mmm.”  

And she CHEWED IT.  

And she SWALLOWED IT.

And she OPENED HER MOUTH FOR MORE.  

What?

She gobbled down half of my bowl.  That means she ate a quarter of a container of tofu.  She was extremely proud of herself for ignoring and then “getting over” the texture enough to decide that maybe it could be enjoyable.  She even asked me to make it again the exact same way.

WHAT? 

I’ll be honest… it’s the next day and my head is still spinning.  

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Cottingly Fairy topped with Christmas hats because Gracie loves fairies

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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Gracie 9 yrs old

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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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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Ixodes ricinus (Linnaeus, 1758)

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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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.

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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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