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Happy Friday [I forgot where I got this image, sorry... I just googled for Lemonade Happy Friday, although I know it's not lemonade ;-)  ]

Happy Friday [I forgot where I got this image, sorry... I just googled for "Lemonade Happy Friday" although I know it's not lemonade ;-) ]

This morning, Sweet Girl had an apple for breakfast and while munching on that apple she sat on the couch with me and watched the Today Show with me… and she was just so happy.  Since she didn’t have to get up as the asscrack of dawn (aka 6:30) for extended school year bus, she got up at 7:30 with me.  Gracie had me all to herself and she took advantage of it, snuggled up next to me on the couch.

She talked my ear off.  Yes, yes she did.  Because there was no one except Daisy the cat to listen in and interrupt and tell her she was wrong, stupid, to stop talking, to interject with something or other behaving jealously…

She just had Mommy all to herself.

She talked mostly about getting her own android so that she can show me all of the talking she won’t do on it and all of the apps and texting she will do on it.

She wants my phone when I turn it in for an upgrade.

I had to explain that when I turn it in for an upgrade, it will be considered an Old Lady phone and so decrepit it will be useless.  I wait until my phones are useless, with the exception of my last phone when I gave it to my eldest so she could have one when she started middle school.

She tried her darnedest to convince me to get her a cell phone and why she deserves one over her little sister.  You’ll note by the length of the rest of our conversation that it’s about much, much more than the cell phone.  It’s about sisterly relationships.  She must have been ruminating on this for quite some time and trying to figure out how to introduce her problem with her little sister in a way that Mommy would finally Get It.

“But you will give me your phone.”

“No, honey, we talked about this.  A lot.  My phone will be broken when I upgrade.”

“I am old enough.  Anna is not old enough.  I am starting 6th grade.  Anna is not responsible.”

“I already let you use my phone when you want to at home.  What happens during the school day with cell phones?”

“Electronics are NOT ALLOWED.  I would get in trouble if I use electronics.  I would use a Chromebook.  I do not want to get in trouble.  Chromebooks are for school.”

“You’re right.”

“Yes, because it is against the rules to use your electronics in class.  The teacher will TAKE IT” quick swipe of her arms through the air “AWAY!!!”

“I think you’re right.”

“I know.  Do I get your phone when you get a new one?” with a squeal.

“Not yet.  It won’t happen for a while.”

She paused here, and her face darkened.

“What’s wrong, Sweet Girl?”

“Anna thinks she is the boss of me.  She thinks she can tell me what to do.  She thinks she knows everything.”

“Like what? Tell me.”

“She is always saying I will get hurt and, um, she yells and it hurts my ears.”

“Do you get hurt if you don’t listen to her?”

“I… sometimes.”

“Do you want to know a secret about Anna?”

PENSIVE FACE WITH FURROWED BROW… she’s preparing to hear something she doesn’t like.

“Your little sister loves you with her whole heart.  She loves you more than anyone else in the world.  That means that if she thinks you’re not safe she’s going to try to protect you.”

“Hmm.” nods

“And do you want to know why it seems like she thinks she knows more than you?”

“Hmm.” glances at me

“It’s because she remembers some things better than you do sometimes; she remembers how things work a little bit better or that doing something a certain way might get you hurt.  She doesn’t want that to happen.  Right?”

“Hmm.” scowls but nods

“What she wants is to take care of you.  She enjoys that.  She likes to know that you’re safe and happy.  She doesn’t think you’re a little baby or a little kid that she has to take care of.  She just wants to make sure that her big sister doesn’t get hurt and that she’s happy.  Does that make sense?”

“Hmm.”

“She doesn’t like to fight with you.  She hates to fight with you.  It hurts her feelings when you fight.”

“She thinks she is more grown up.  She is not more responsible, I am more responsible.  I am older.  I am going in a middle school.”

“You are definitely learning to be responsible.  You’ve been helping around the house a lot more lately.  You help me when we go shopping together.  You did a great job with the grocery list yesterday.”

“Yes, I did.”

“I think you’re both learning and growing up, and I think your little sister is trying to help you grow up so that you can do it together.”

“She is bossy.  She tells me what to do.”

“Well, do you think that maybe sometimes you tell her what to do too?”

PAUSE

“I think that she’s trying to show you how to do things safely, and you know how she likes things to be ‘just right’ but you know what else? She also wants to do things WITH you so that you’re not alone.”

“Yes.”

“And you know, she just thinks about things in a different way than you do.  Your little sister’s brain works a little differently than your does so she doesn’t always understand what you’re thinking.”

“Yes, yes.”

“It might sound bossy if she thinks that she has to talk more loudly so that you’ll pay attention.  Do you understand?”

“Hmm.”  BIG PAUSE “Juliana is bossy.”

“Well… um… but she’s your big sister and you’re supposed to think she’s bossy.  She’s a leader too.  And not for nothing, honey, but when Mommy and Daddy aren’t here, she’s the boss.”

“Mom, did you hide your Kindle?”

“No honey, it’s plugged in.  Did you want to read today?”

“I don’t know.”

 

 

Oh my gosh, I love this girl.  Dear God, I love my daughters.  Love, love, love.

 

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My Sweet Girl doesn’t like talking on the phone.  Clarifying:  the boring land line which all you can do with is talk on it; the android, which you could speak into in order to have conversations except for the fact that she hates doing that.  She doesn’t like pleasantries, conversations of a fun or serious nature, and doesn’t “get” what’s so great about the entire vocalizing conversations thing.

She much prefers my android and the fun things the phone actually does.  Youtube, Kindle books, Angry Birds.  She looks forward to having her own one day so that she can have Youtube, Kindle books, and Angry Birds and text all of the friends and family that she doesn’t want to speak with.

During the second PPT of the school year I asked her team to build into the social therapies “telephone speaking skills.”  At 11 years old she doesn’t know, or care to know, how to make a phone call on the house phone or the android (or even her dad’s basic phone).  She doesn’t know, or care to know, how to answer any of the phones.  She does know how to view a text I’ve received.  She knows how to open any app that interests her.  She knows how to open up Chrome and do an internet search for My Little Ponies and Frozen and Angel Cat Sugar.  She knows how to do all of these things on my Kindle too.

I wasn’t sure how the social therapy regarding the phone skills was working because she’s still resistant to using the phone, and although I encourage her to take calls that come in for her, I don’t force her to do more than listen to the other person and be polite.  I also don’t force her to make a phone call, although I will have her listen to me make a phone call and watch what I do.  Her response every time is,

“I do not like the phone. I do not… know.”

I get it.  I do.  She has nonverbal learning disorder, and she has some anxiety regarding phone usage because, I’m guessing, telephone conversations generally don’t have an easily identifiable script.  There isn’t an expected beginning, middle, or end.  People say and ask unexpected things and since it’s not face to face, responding more quickly (as opposed to taking some time to respond) feels more urgent and anxiety inducing.

It’s ok.  But it’s still important that she knows how to do these things.  I want her to know how in case she NEEDS to make a call or respond to a call.  Emergencies could happen.  She needs to know emergency contact numbers too, but that’s been a very long difficult lesson that worries her.  We usually have a medical alert bracelet for her with ICE info on it, but the last one broke so it’s time to get a new one.  It helped her feel secure.

So you can imagine my surprise when my youngest princess called me today (as requested) with a grocery list I asked her to help me with.  I asked her if the Sweet Girl had helped make the list, offered suggestions, or anything.  She said no and then forced her sister on the phone.

I fully expected Sweet Girl to drop the phone and walk away.  She didn’t.  She didn’t because with forceful determination, my youngest daughter told her to speak up and tell Mom what she wanted for groceries.  I said “Hello” and asked her what she’d like when I went shopping after work.

Suddenly…

“Ummm… yes.  Tomato.”

“Ok. Tomato… sauce?”

“Yes.  But red soup.  Gramma calls it red soup.  It is red.”

“Great idea!”

“Mmm hmmm, yes.  Sauce.  Your sauce is better.  You need enough.”

“I need enough cans to make sauce AND soup?”

“Yes, you do.”

“Good idea.  What’s next?”

“I need hummus chips.  They are healthy.  I do not like hummus.  Hummus chips are good.”

“Uh, yeah.”

“I need black bean chips.  I do not like black beans.  I do not like texture.  Black bean hummus chips are good.”

“On the list.  Thanks, honey.”

“Chocolate pretzels… uhhh… Special K.  They have the chocolate pretzels I like.”

“Ok, thank you.  Anything else?”

“Yes. Apples.  Strawberries are good.  I do not like bananas.  Anna and Daddy like bananas, I do not like them.  You should buy them.”

“Great, I almost forgot those on the list.”

“Mmm hmmm, yes.  My pretzels, the ones I like.”

“Mustard?”

“Yes, mustard pretzels.”

“Well, should we get veggies? I think those would be healthy.”

“Yes, get veggies.”

I fully expected her to remind me that she doesn’t eat veggies or meat, only fruit and carbs and cheese, so this surprised me.  :-)

“Oh! Well what veggies would you like?”

“Rhubarb.  I miss rhu…rhubarb.  I like cauliflower.  You have to get cheesy, um, the giant one.”

“Sure! We did run out of the cauliflower.”

“We ran out of rhubarb.  Last summer.”

“That too, I hope I can find it.”

“Hmmm, yes.  You should get my fruit bars.  They are frozen.  I like strawberry.  I like lemon.  I want coconut.”

“But the coconut has milk in it.”

“Yes, you say that.  I like strawberry.”

“Do you miss yogurt?”

“I like yogurt.  Get one with chocolate.”

“You’re such a big help on this list honey.”

“Yes.  I need allergy medicine.  And nut clust… clusters.  I runned out of Lactaid.  I need chocolate Chex.”

“We ran out of a lot.  Are you hungry?”

“I don’t know.”

“Do you think the list is done?”

…..

…..

“Hi Mommy, Gracie just dropped the phone.”

 

Oh! My! Gosh! That girl kept me on the phone for 15 minutes! I complimented her when I got home from grocery shopping, and made sure she saw the healthy foods she added to the list.  She may not eat the majority of the food she PUT on that list, but she created a grocery list! Over the phone! For 15 minutes!

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Source:  Goista.com

Turks and Caicos Islands, Mommy’s Vacation

It’s official; I have a high school student, a brand new middle schooler, and a fourth grader.  Wow.  I’m so proud of all of them.  Today is the first day of their summer vacation, and as it happens it’s the first day of summer.  Cool.

I’m having my first real weekend day of having nothing to do or worry about.  My Darling Girl is playing on my cell phone, trying to find as many promo clips as possible for “How To Train Your Dragon 2.”  The Princess is upstairs relaxing, playing Mario something or other on her DS.  Sweet Girl is at a birthday party for a good friend at school, her first one since kindergarten.

It’s quiet, as it should be on this beautifully sunny and not-too-hot day.

I might even get a nap later.

HA HA HA HA HA!

No, really, I’m aiming for a nap.  In spite of the current seeming calm, I was rudely awakened too early this morning.  Sweet Girl was upset about something her Daddy said about her skirt and washing it.  Chocolate chip pancakes fixed all that, along with a suggestion to, you know, wear a clean skirt.

A nap will help me process just how old my girls are getting.  Yeah, that’s it.

So the girls’ vacation starts today, but mine doesn’t start until August.  I can barely stand it.  I need that beach.  If I fall asleep on it, see… my children won’t wake me up while I’m on it.  I’m going on a Momcation with a few friends in a month and a half.  It’s our 40th Birthday Year celebration.  More on that later.  I’m hoping if I get a nap later, my Momcation will be in my dreams.

Of course I’d love to take the girls somewhere this summer too.  The Husband wants to go to the Cape.  I want somewhere less… boring for the girls.  This may take some research, especially since we have to keep the drive manageable.  It may end up being near the holidays, though, to give us more time to save some money.  I’d love to bring the girls back to New Hampshire after it snows and Christmas lights are up everywhere.  Maybe it’s not too late to find a place to go camping for the weekend and we can get a decent tent with a decent air mattress.  Or rent a cabin, ha ha.  That would be awesome for “camping.”  They could use a tent, and I’ll use a cabin that has electricity.

Eh, or we do the Cape.  They’ve got beaches and hotel rooms there.

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Today’s post is inspired by this blog entry on another blog I follow:  i like being autistic | a diary of a mom.  I had this in my head for a while, but as usual Jessie over at Diary of a Mom seems to read my mind, heh heh.

A couple of weeks ago, we were out at a barbeque.  It was a gorgeous day; sunny with a few clouds and a breeze; hot but not unbearable in the sun; completely perfect in the shade.  All of my daughters were enjoying their day playing with their friends and having fun.  Sweet Girl was having a great day interacting and self-advocating and even finding foods to eat. I sat for a while talking with someoneat the party and we got to talking about Autism as frequently happens. She asked me some questions eager to learn about ASD in general and some questions specific to Sweet Girl, and she became thoughtful.

Then the Big Question that I dread more than any other, and am inevitably asked.

“Do you ever wish she didn’t have Autism?”

I tried to explain that I love her, that her ASD makes her unique, and I wouldn’t change her.  The questions came about along the lines of,

“What about the difficult moments”

because obviously, I white wash those moments for people when she’s having a great day… because I want her and our family and friends to enjoy those days.  When they see her, she’s on her best behavior most of the time.  She’s “on.”  She’s at an age now where she’s self-conscious about melt-downs, and it’s not something that I ingrained into her.  She’s never much liked anyone even seeing her cry.

I give them glimpses into her behaviors and the rough moments and hours and days if it seems they really want to know… most people who know her, though, have seen it firsthaStillnd.

Still, it’s exhausting to talk about.  I also realize that it contributes to the negative down-talk about Autism.  It perpetuates the belief that Autism is more negative than positive.  It perpetuates the belief that as a parent, I must want my “real child” rather than the autistic one.  I’ve blogged about her, and still do, about the bad days.  It’s partly what the blog is for.  It is, after all, my blog and yes, as a parent, I need support but I need it as a parent to three children.

“I would not change her, even for the most difficult moments.  I won’t lie, it’s hard.  But she’s wonderful.  I couldn’t change her.  I couldn’t take away such an important part of her.”

I tried to explain all of the positive up-talk that we’ve spent years doing, how she’s not the only one working hard to cope with a world not made for her… we’re working hard to live in that world WITH her.  We’re working hard to understand her.  We’re working hard to make sure that she knows that our efforts are never to change her, but to help her learn new things and use her knowledge to be more independent.

We’re working hard to try to allow her to become the best self-advocate she can become, and prepare her for future relationships and jobs and life and we maintain a negative outlook and view her ASD as a negative thing… it does no good. If we view the ASD as our obstacle, then we’re bound to struggle harder and grow to resent it.  Instead, the obstacles are better viewed as things that we and she need to educate ourselves on and learn to cope with.  Her personal obstacles and difficulties are things we help her with every step of the way.

Some days are great, some are bad.  Some of the concepts she gets eventually, and some are much harder. I always have to go into something with her assuming that she understands what I’m teaching and encourage her to ask questions.  I assume intellect and willingness to learn.  I want her to always assume that I love her in spite of her most difficult traits, the same as her sisters and her daddy and other family and friends.  She’s no different that way. But suddenly I could tell I was losing this person I was talking to.

I was “teaching” too much.  Sometimes I lecture without meaning it to come out that way.

I decided to try a different tack. I did something that I usually only do in private, a game that we play that has helped reinforce just how valuable her entire self is.  I knew I was taking a risk in asking her at all, at having her response be to tell me,

“SHUT UP! MAY YOU NOT SAY THAT TO ME?!!??”

I called Sweet Girl over to us and got her engaged.  I asked her the question I’ve asked before:

“Hi Honey.  I was wondering, would you like me to hold onto your Autism for a while? Maybe put it in my pocket and keep it safe?” (other variations have been asking if I might borrow her Autism)

“NO! You may not have my Autism! It is MINE! I need it!”

“Okay! Just checking!”

We had a smile over her response, I gave her a hug, and she skipped away.  I counted myself lucky that she didn’t scream at me for asking a clearly stupid question.  She would have been justified.  I felt Sweet Girl had made the point herself very firmly and more succinctly than I ever could.  My dear 11 year old self-advocate.

I’ve been catching her on my Kindle recently going through the photo album, which is directly connected to my Facebook photos.  She’ll pore through those photos for hours.  Sometimes she’s looking at the cats’ pictures; sometimes her little cousin; sometimes when she and her sisters were little.  But sometimes… sometimes she’s looking at the Autism Info-Graphics and inspirational quotes and images.  She touches them and caresses them, smiling.  Sometimes she asks me why I found them and shared them on Facebook so that she can hear me say,

“I saved them and shared them because you’re special to me, and that means your Autism is special to me too.  It’s part of you and I love every single bit of you.”

::nodding:: waiting for more:: “Yes, that is good.”

“I’m happy you think so, honey.  I love you just the way you are, just as much as I love your sisters, always, and the things that make them special too.”

::nodding:: wanting more::  “Yes, mmm hmmm.”

“I want to teach people that don’t know about Autism that Autism might be hard for you sometimes, but it has lots of great things about it too.”

“Yes, I have my Autism.  Do not take my Autism.  No one can have it, no one can take it away.” ::frowns:: “No one should take it away.” (this was after a discussion when she asked about an info-graphic that talked about ‘cures’ and the thought of curing her ASD made her angry) “These are MY pictures, Mommy.  You saved these for ME.”  ::soft smile::

And there you go.

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I figured it out! Why my shoulder/shoulder-blade/myofascial pain has been so agonizing since I got up yesterday.  I blamed my PCP from my Monday physical.  I think she’s only partly to blame.  Well, not her directly but those terrible examination beds.

I think the real cause was getting kicked and punched all up and down my entire right side from my thigh up to my shoulder from a particular child who really, really, really didn’t want to get out of bed and then didn’t want to get off the couch to continue getting ready to go to school.  I think she hit a Fibro trigger point and some nerves.

It’s only slightly better this morning.  I can function better, since I was able to keep up with the pain management, and getting some coffee into myself this morning = happier Jessica so far.  By the time I got back from, well, all appointments yesterday I was nearing “vicious” and I hope to avoid that today.   My mood certainly didn’t improve by getting stuck in traffic for two HOURS yesterday coming back from another annual appointment that women love during which my mood had lifted somewhat when I saw that their weight scale weighed me seven pounds lighter than my PCP’s scale.

A drive that usually takes 15-20 minutes.  Two hours.  No.  I almost got smushed and shoved off the road by a pair of semi-trucks when trying to merge into the insanity from other insanity because they were at the point where, you know, I had no choice but to merge and they just wouldn’t allow ANYONE to merge.  So I ended up having to take an exit and I got lost in Hartford and ended up over the river in East Hartford but got home far faster than if I had stayed in the traffic anyway.  So thank you, asshole semis.  You saved me even though you almost killed me.  It almost made the earlier 1 hour and 45 minutes worthwhile.  I should really thank my GPS for this one.  You know, since I got lost.

I need to remind myself to stay off of Facebook on the worst of the worst days.  I usually do, but not yesterday.  :-(

Ok, so can I grow flowers if my husband let grass grow in my plant bed and we just rototill? Or do we have to lay down topsoil before planting? I have a fairy garden to put out and it wouldn’t have been a problem two summers ago.  ;-)

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It’s no secret that this is not a household that supports or will support Autism Speaks, monetarily nor in action.  I won’t get into why here but will save that for another post.  One of the “things” that belongs to Autism Speaks is Lighting It Up Blue.  Before I knew or checked out that it originated with Autism Speaks, we happily did it and encouraged it.  I even turned my Facebook images blue for not just a day but all of April.

I was bound and determined that I wouldn’t wear blue in order to Light It Up Blue today, which is of course World Autism Awareness and Acceptance Day.  Swore up and down it wasn’t going to happen.  I’ve been discussing it and explaining why on my Facebook.

Then last night happened.  My youngest daughter said,

“MOM! MOM! I heard you say tomorrow is World Autism Day! The school is doing this thing!”

Then my middle daughter, my sweet autist, immediately followed up by gushing with,

“Mommy you have to wear blue tomorrow! Everyone is wearing blue for ME!”

“Yes they are, honey.  Yes, they are.”

The two of them together were quite a pair, talking about how the school made announcements and the teachers were talking to their classrooms about Autism Spectrum Disorders and what a special day April 2nd is, and how special all of April is for people touched by Autism Disorders and autistic individuals.  As a WHOLE! SCHOOL! they were going to SHOW! SUPPORT! with the WHOLE! REST! OF! THE! WORLD! and it’s just really the biggest spirit day ever for my daughters.  After all, my daughter believes that this whole worldwide day and month is set aside just for her… and the school dressed all in blue today just for her.

When she asked me to wear blue to show my support for her special autism, how could I say no? How could I bum them out with the rhetoric of “why we don’t support Autism Speaks and their stuff?”  How could I say no when my girl thinks that blue was chosen specially because it’s her favorite color?

It’s simple.  I didn’t.  I wore blue after all.

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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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