The Vista Diaries

Silly Simple Words

Thank you to everyone for your hugs and love over the past few days.  They’re both needed and appreciated.

We’ve been watching V like a hawk the past few days.

Super vigilant and on high alert.  The ultimate helicopter parents.

It’s hard not to be.

Luckily though, it seems like the after effects from V’s seizure are mild.

She was a bit unsteady on her feet Sunday morning, but that has corrected itself, and we haven’t seen any other physical issues.

There doesn’t seem to be any behavioral issues from the seizure, either (everyone cheer!!).

It looks like this seziure went after her language center instead.

She’s had seizures in the past where she lost words, and when as a toddler you only have a few words to begin with, it meant she lost her ability to speak.

Thankfully, this isn’t the case this time.

But it’s the weird things that you take for granted that hits you like a punch in the gut when you least expect it.

Last night V wanted to dress up as a kitty cat.  She loves to dress up as a cat with a nose and whiskers painted on her face using my eyeliner.  A couple of weeks ago, I ordered a cat costume for her off Etsy.  Just a little set of ears and a tail.  And so last night when she wanted to dress up, I mentioned that we’d have to wait for the costume to come in the mail.

“Mail?” she said.  “You mean like press send?”

“No sweetie,” I replied.  “Not email.  Mail.  It will come to the mailbox and then we can go get it.”

“Mailbox?” she looked at me confused.  “What’s mailbox?”

“You know… a mailbox… don’t you remember how we walk to the mailbox to get the mail?”

A memory.  A word.  Something simple, and really, without a lot of meaning.  But *poof*, it was gone.  She had no idea what I was talking about.

I saw it again this morning.  She wanted to dress up in one of her play silks.

“Can you tie it around my elbow?”

I looked at her, “Where do you want me to tie it?”

She pointed at her shoulder “My elbow.”

I sat next to her and gently said, “That’s your shoulder, not your elbow.  Where’s your elbow?”

She again pointed to her shoulder.

We proceeded to do a body inventory.  Body parts she’s known and been able to name for years.

She knew where her knee was, but the word ankle was also missing for her again.

*gut punch*

Silly simple words.  Word I know will come back.  Words I know we can easily correct and reteach her if we need to.

But, oh those words.

Their absence says so much.

Please Send Comfort Food

I’m one of those people who can cry at the drop at the hat, sometimes.  If I’m frustrated?  Waterworks.  Angry?  Yup, I’ll tear up.  Watch that commercial on TV with the cute kid?  Well, you get the idea.

I’m having one of those overly emotional days, today.

Vista had a bad seizure last night.  It took her a long time to come out of it, which is very unusual for her.  Usually her seizures are short, and she’s fine right after them.

This one lasted longer and when we were finally able to wake her up after it, she couldn’t tell us her name.  She fell back asleep, which meant we had to continue to try to wake her up every little bit, trying to bring her out of the post seizure and make sure her cognitive functions returned.

Let me tell you… when you can’t wake up your kid, it’s scary.  V’s notoriously hard to wake up at the best of times.  But this?  This was different.  This was holding a ragdoll in my arms.  And just when we thought she might open her eyes she was gone again.

When we finally started to get some response out of her and I was coaxing her to open her eyes, she told me she couldn’t.  She was trying, but her eyes wouldn’t open.  Gah!

It took almost an hour for her to fully return.  That is a loooong 60 minutes of debating whether to bring her into to the ER, chatting with an on-call nurse, and repeating “Vista, sweetie…wake up and open your eyes for Mama” over and over.

This kid is seriously going to give me a heart attack.

She’s better this morning.  A little off on her balance, but otherwise seems to be alright.

I’ll be calling her neurologist on Monday morning to see if they want to do some level checks for her meds, since she’s had a couple growth spurts over the past could months.

But the fact that this seizure was so different than her normal ones… doesn’t sit well with me.

It makes me nervous that they’ll want to talk brain surgery again.  Which REALLY doesn’t sit well with me.

 

So while I’ve been doing the classic ‘worry about things you have no control over’ this morning I realize… wait… where the hell’s my cat?

I haven’t seen him since yesterday.

He always comes home.  Several times a day.  To eat, and get pets, and shed all over my floors.

But, no sign of him.

I couldn’t be Bil’s annoying useless cat that goes missing.  Noooo…it has to be my cat who I love and adore.

*sigh*

 

So I quit this weekend.  And in lieu of crying I’m eating ice cream, and carbs, and other random junk.  Please send wine and margaritas to wash it all down.

 

 

It Started With A Simple Stencil

I’ve been wanting to repaint Vista’s room since before she was born.

In fact, I had this whole beautiful nursery planned out.  But V had other plans with her early arrival.

And so her room went unpainted.

Instead I stuck up some Winnie-the-Pooh decals and, later, Disney Princess decals.  But anything within her reach was quickly pulled down.  So, her room was a very stark and drab, with it’s beige walls and white furniture.  And it’s been like that for 4 long years.

I finally decided I was sick of looking at it and made up my mind that this summer we were giving her room a paint job.  It was way past time she had a room fit for a little girl.

So, I did what any geek would do.  I scoured the internet looking for ideas.

The only thing I knew was that decals were out, as far as decorating went.  Other than that, I was at a complete loss as to what to do with her room.

After months (yes.  really.  months) of looking, I finally settled on a design of pale green walls with pink and white accents.

But, once again, V had other plans.

I was looking at a wall stencil site one evening when Vista crawled onto my lap.

She immediately pointed to a picture.  “That.  I want my room to look like that.”

I brought up some other pictures for her to look at, but she wasn’t budging.  She wanted fairies on her wall and the walls better be pink… or else.

So I did what any parent would do.  Caved and bought the stencil package  (never mind the fact I’ve never stenciled anything in my life).

And things just went downhill from there…

This is what the room looked like before we started (well, we had gotten as far as clearing stuff out of her room, removing the horrid shelving units from her closet and wall cubby and patching holes before we had an ‘Oh crap…we need before pics!’ moment)

 


before1 It Started With A Simple Stencil

Her armoire (complete with tacky Disney Princess decal) and bed.  Her bed was one of those crib- to -daybed-to-full bed deals.  I love her bed.  She, of course, hates it.

 

 

before2 It Started With A Simple Stencil

Her massive dresser and the weird in-the-wall cubby hole.  The cubby in the far corner originally had a wire shelving unit in it. It came that way when I bought the place and I just never bothered to remove it, despite my intense loathing for the thing.  I figured since we were pulling it out to paint, it could stay out.

 

 

before3 It Started With A Simple Stencil

The closet also had a horrid wire frame shelving unit in it.  Buh-bye.

Vista’s room is fairly small, with several large pieces of furniture.  Too many large pieces.  One of them had to go.  Which kinda made me sad because I really like her furniture.

We made the decision to take the armoir out and got it as far as the living room before realizing that the thing weighed a billion pounds and there was no way we were going to be able to carry it downstairs to the spare bedroom as we had originally planned. We *might* have had an ‘Oh shit’ moment before Bil came up with the genius idea to put it in our kitchen as an extra storage pantry.  Since our appliances are all white, it fits in nicely.  And also makes me want to redo all the kitchen cabinets so that they’re white too.  And maybe refinish the kitchen table.  It’s funny how projects snowball, isn’t it?

Well, Vista’s room was no exception.  It started with a simple stencil kit.  It ended up being a total room makeover.

After pulling the armoire out, we decided it was probably time to get Vista a full sized mattress.  She’s been complaining that her bed it too small for a while.  She’s also been begging me to paint her bed pink.  I really, really, don’t want to do that. Really.  Like I would cry if I had to.  So instead we headed to Ikea to look at new (cheap) beds.  Because we’re giant suckers and our daughter is spoiled.  Oh, like you wouldn’t do the same.

We wandered around the kids bedding section at Ikea for an hour.  The single beds were ugly.  The full size beds would be to big for her room.  Well…this wasn’t working out how we had planned.

We saw a loft bed that we thought might work, but the reality is we would have to make huge modifications to it in order to make it safe for V to go up and down right now.  That sounded like work.  And effort.  Neither of which I’m terribly fond of.  But, wait! We found out that same bed can be flipped upside down!  Twin bed today, loft bed if she ever get’s coordinated enough to handle it.  Those crazy Swedes.

So we had our new bed.  And then we decided, oh what the heck… lets find a shelving unit to go in the closet while we’re here.

And of course a new bed means new sheets and comforter.

Oh, and then we saw this adorable light fixture that was just PERFECT!

(You see where I’m going with this…right?)

Yeah.

That $80 stencil kit turned into a $1500 complete room reno.

Which we are going to invoice her for on her 18th birthday.  Plus the cost of labor, because ZOMG it was a lot of work.

So….

*drumroll*

This is how the room turned out (and it’s still a work in progress).

 

 

after1 It Started With A Simple Stencil

The new bed.  I hate the canopy on it.  I wanted to do some pretty pink drapes or something more feminine.  V and Bil love the ‘tent’.  I totally got out voted.

The walls look like a pale pink in this picture…they’re actually quite a bright pink.  I had a bit of buyers remorse on the paint once we got the second coat on, because, ZOMG, it’s a lot of pink.

On the to-do list is to paint the wooden bed frame in either a dark pink or white (what say you, my readers?).  I just ran out of time this weekend.

 

 

after2a It Started With A Simple Stencil

The ugly cubby was painted a darker pink and turned into a little reading nook.  I still need to find and put up some little book shelves on the far wall of it.

We ended up, with taking the armoire out and the new furniture arrangement, being able to put V’s toy kitchen in her room.  And she still has more floor space then she had previously.  Bonus.

 

 

after2 It Started With A Simple Stencil

A close up view of the cubby and the wall stencil.  V was totally head over heals in love with this mushroom stencil.  I’m pretty sure that means she’ll be a drug addict when she’s older.

 

 

after3 It Started With A Simple Stencil

Rather than a shelving system, typical of closets, we opted for a wooden bookcase type unit.  I like how it recesses into the closet, but still has plenty of storage space.

 

 

after4 It Started With A Simple StencilThe stencil as you walk into the room.  I have to say I’m really happy with the look of the stencils.  They can be a bit of a pain to place on the wall properly, then time consuming to paint (especially if you want to layer them).  But the final results are amazing and totally worth the effort.

I only had time to get a couple stencils on the wall, but I will be adding more in the weeks to come.

Overall, I’m happy with how things turned out (I could have done without the attached price tag, though, but hey).

Now… to do something about those kitchen cabinets…

 

 

Girls with Guitars

Sunday morning

Guitar

Tutu fashionista

Rock on little girl

Vguitar 468x750 Girls with Guitars

Putting the Kid To Bed…It’s a game the whole family can play. Even the cat.

Around here, putting Vista to bed is a team effort.

You say the world b.e.d and there’s immediate waterworks and wailing and gnashing of teeth.  And Vista gets pretty upset too.

She has a distinct aversion to the thought of going to bed.  Doesn’t matter how much we stick to routine, how much warning we give (or don’t give)… there’s always tears involved.

And lately she’s started insisting that Daddy come and lay down in her room while see falls asleep (because she knows that Daddy is a big sucker who’s wrapped around her little finger and there’s no way Mama’s playing that game).

But lately we’ve discovered a secret weapon.

Our gigantic ball of fur, known as Xander.

Xander gets mad props for not having clawed Vista’s face off (yet).

He’s tolerates her so-called petting.  He tolerates her hugs (which involve her laying across him and using him as a pillow).  He even tolerates her trying to pick him up and put him in the microwave (charming child of mine).

Xander was a SPCA rescue that we picked up.  We had no idea, really, what we were getting.

What we did get was a giant suck, a proficient mouser (judging by the number of decapitated mice he leaves around the yard *gag*), a peace keeper (remind me to tell you the story about the time he broke up a dog fight), and so much more.  But from the moment we brought V home, he was her cat.

And these days he’s our bedtime saviour.

As soon as the cat hears V start demanding that Bil sleep with her, he runs into her room, jumps on her bed, and curls up at her feet.  At that point Bil becomes persona non grata.  She settles right down, no more arguments, no more whining.

The other night she woke up at 1am crying.  I went in to try and calm her and find out what was wrong.  She wasn’t having any of it.  But eventually Xander heard her, woke up, and came took up his spot on her feet. She immediately told me to get out (no, not even kidding) and went back to sleep.

He usually doesn’t stay long in her room.  Just long enough to see her settled. Then he comes back out and takes up his normal spot in the living room.

I’ve never met an animal as perceptive as he is.

But he was definitely meant to be part of this family.

Sometimes Making a Mess is Required

While spring has sprung (sort of) here, it’s still not quite warm enough to sit outside and play for any extended period of time.

Vista has been bugging me, daily, to let her play with her Aqua Sand.  I’ve been trying to put her off because, holy hell, that shit is messy and ends up everywhere, and I would much rather she played with it outside.  But yesterday, it was just the two of us (her aide was off for the day), and in lieu of having her paint (herself, the table, her clothes, everywhere but the paper), I finally caved and pulled out the sand for her.

I found the biggest tablecloth I could find and put it across the kitchen floor in the hopes it would contain the sand. Feel free to laugh hysterically at me now.

Photo 2ECE193C BCDA FAE2 14E6 A6B873B0399E 225x300 Sometimes Making a Mess is RequiredBy the time she was done, sand and water were from one end of the room to the other.

But?

She had fun.  And happily entertained herself for over an hour.

And the bonus of the sand and water, is that it’s a great tactile sensory exercise for her.  I also give her lots of containers, spoons, and sponges, so she can practice transferring water and sand from one container to another.

For those not familiar with Aqua Sand, it’s basically colored sand coated with Scotchgard.  That means it repels the water and ans soon as you take it out of the water it’s instantly dry (no mud pies in the house).  It also means it doesn’t stick to her hands so she can play with it and experience the fun of sand and water, without the freak out of her hands being dirty.

You can apparently make your own aqua sand, which I may try, because this stuff is like $5 for a little container and quite frankly I’m too cheap to continue buying it.

A New Freedom

The past couple weeks have flown by.  We’ve been immersed in a flurry of assessments and activities for Vista.

She started preschool this week, with her aide, Lynda.  It went better than everyone thought it would.  Lynda has been a huge help in managing her tantrums and heading them off before they begin.  She’s been able to very quickly pick up Vista’s cues that she’s getting overwhelmed.

And for the first time, yesterday, Vista was able to tell another kid at her therapy group “No. Stop.  I’m playing with that toy,” rather than dissolving into an instant puddle of hysterics. It’s something so small, but such a huge thing in V’s world for her to be able to do that.

I’ve also discovered that when you’re trying to dress a kicking, screaming, squirming, crying child who is refusing to leave an activity, it’s MUCH easier with another set of hands.

Having Vista’s aide has been such a huge stress release, I can’t even begin to describe it. Even the ability to go out and do things with V in the community has been huge.  It’s a freedom we’ve never experienced before.

We also received Vista’s IPP (Individual Program Plan) today.  This is a document where each of her therapists lay out the specific, measurable goals for Vista over the next few months and how we’re going to achieve them.  It also gives her aide a framework of things to be working on with Vista in the classroom and out in the community.

In addition to her aide, V will be working with a physical therapist, an occupational therapist,  a behavior consultant, and a learning support teacher.  They’re also going to be adding a speech therapist into that mix, as well.

It means our days are booked solid.

But?

It’s so worth it.  We’re already starting to see small improvements in her behavior.

The fact that I’m not so stressed and butting heads with her all the time, also means the quality of my relationship with my daughter has improved dramatically.

And that makes us both happy.

Don’t Expect This To Be Coherent

I haven’t been purposely ignoring my blog.
Life got in the way.  It happens sometimes.

Vista finally has an aide. We met her last week for the first time and she’s lovely. I think she’s going to work out well. She’ll be spending a few hours every morning with V, either working with her at home or going to preschool or other activities with her.

We were supposed to have the aide here this week, but we had to put it all on hold because V’s been sick.  (I believe that’s referred to as Murphy’s Law.  That Murphy is  a giant douche.  He probably didn’t like puppies either.  Jerk).

It started with a mild cough Sunday night that progressed to a fever hitting 107 on Monday …and a little bit of mommy freak out when the temp was so high that the thermometer couldn’t read it.  Did you know some digital thermometers have a max temp reading, after which it just says ‘High’, which – note to manufacturers- isn’t really fucking helpful?  Yeah, neither did I.  It’s something I would be happy still not knowing.

She also had her first febrile seizure. That would be what ended up prompting hospital visit #1.

Three hospital visits later and we have a diagnosis of pneumonia with a throat inflammation that caused her to start coughing 100 times a minute. When she gets sick, she doesn’t do it half-assed.

It’s been a long sleepless week.

The cough syrup with codeine, that the ER doc prescribed for her cough, is my new best friend. And Vista actually likes to take it.  Yes, you read that right.  My child who fights every med we give her, willingly takes the cough syrup.  I don’t get it, either.  It’s a fight to give her Children’s Tylenol, but this disgusting cough syrup is OK in her books.  *sigh*  Whatever.  I don’t have to fight to get her to take it.  This is a good thing.

Unfortunately, with her being so sick, it means I’ve had to cancel my trip for next week down to California with @FlyGirlWS, to see a taping of the Ellen show.   Which sucks.  Big time.  *insert giant sad panda here*

So with all that going on, even the thought of blogging takes too many brain cells.

I promise I’ll be back when my I can think coherently again.  Which will hopefully be soon.

How To Tell If Someone Has A Disability

YOU CAN’T.

No really.  I know what you’re thinking.  “But of course you can, Jenn.  I’ve seen people in wheelchairs and they obviously have a disability, right? And that kid in my son’s preschool class who can’t walk or talk and has an aide… well, duh … disability!”

And you’re not wrong.

But you are wrong.

Not every disability is physical.  Not every disability is obvious.  Not every disability is instantly recognizable.

———————

This came up at Vista’s physio/sensory group again.

We’ve been going to this group for about two years.  It’s been good for V on so many levels.  It helps with her socialization, it definitely works on her sensory issues, it helps with her fine and gross motor.

But Vista looks and sounds normal compared to most of the other kids.

There are several new kids and mom’s to the group, right now.  So I knew this question would come sooner or later.  It always does.

“Why is Vista even here?  She looks fine to me.”

Yes.  I’m sure she does.

But you don’t notice how she doesn’t have the balance to walk up or down stairs without holding onto something.  You don’t notice her refusal to do most crafts because her hands might get dirty.  You don’t notice when we’re sitting in circle and her gaze goes vacant as she has a seizure.

Yes, I know she speaks very well.  But that’s the result of 2.5yrs of speech therapy, months spent signing, and countless hours spent reading together and working on her verbal skills.  But you don’t notice that she can’t blow out her birthday candles because she simply can’t coordinate her mouth to make that ‘O’ sound.  And you don’t notice how she mixes up syllables on certain words.  And you don’t notice how her mouth droops on one side in what looks like a mini-stroke when she tries to form words or sounds she’s not comfortable with.

I’m sure she seems charming and engaging.  That’s only because you haven’t seen her melt down and try to attack another child or hurt herself.  Her favorite thing right now, when she’s stressed, is to pinch her hand over and over until it bruises.  But you wouldn’t notice that.  All you see is my daughter sitting quietly while she does this.

And you can’t magically look into her brain and see that it looks like swiss cheese compared to most of the other kids there.

Vista is very adept at hiding her challenges.

But the fact is, my charming blond-haired, blue-eyed daughter is considered disabled.

Just because you can’t see it, doesn’t make it any less true.

Routine

One of the weird brain things Vista has going on is called ‘Partial Agenesis Corpus Callosum’ (Partial ACC). It’s sometimes called ‘split-brain syndrome’. Your corpus callosum is what connects the right and left side of your brain and lets them talk to each other. Vista’s, however, isn’t properly formed. And so it is to blame for some of her issues with impulse control, recognizing emotions, and decision making.

The other day, a blog I read that shares stories of people living with ACC linked to an interesting video on split-brain.

There’s a part where the parents talk about having to learn that getting mad and yelling at their child is a waste of time and effort, which made me laugh. This is so true of Vista. You can get upset with her and she’ll just stand there with a blank look on her face, or say something random and walk away. That would be the point where I head for the liquor cabinet.

Watching the video, though, did give me some other insight on how to get Vista into some sort of routine.

As much as she hates leaving an activity, once she’s stuck into it, she’s not a strict routine type kid.  She’s much more like her father, in that regard.  They’re both free spirits.  And it drives me crazy.  Seriously.  I’m the person who lives and dies by my calendar.  I don’t do well with unstructured.

I’ve been struggling to find a happy medium with Vista.  Something that’s easy for her to grasp and makes sense to her little brain and allows us a tiny bit of structure to the days.  Also something that will help reduce the battles for simple everyday things like brushing teeth, getting dressed, and going to bed.

So, this is what I came up with.

A ‘chore chart’.  Right now it’s meant to help her with basic life skills.  As she gets older, it will evolve to include more ‘chore’ based items like making her bed, or helping with dishes.  But for right now, we’ll start with the simple stuff.  Heh.

chorechart Routine

It’s made with a piece of white poster board, stuck with magnets to the fridge. Each chore is a piece of paper glued to poster board then mounted on magnets, so we can switch or add chores and tasks easily.
Chore Routine

For the actual success/failure of whether the item was completed, I wanted something meaningful that a 3yr old could understand. Check marks are random. She’s just not going to get that. And stickers really don’t mean much to her either. So what I settled on was circles of yellow and red paper (I used a circle craft punch to quickly make them) and drew a happy face / sad face on them. We then use small magnets (which make up a nose on the faces) to stick them onto the board. I did it this way, rather than gluing each circle onto a magnet, because it’s easier to store flat pieces of paper when they’re not in use. (that’s a Canadian quarter to give you an idea of size)

happy sad Routine

The way we’re working this is if she goes the full day with 1 or less sad face, then she gets a treat from the treat basket (which is an old easter basket filled with random dollar store items).  And so far she seems to be grasping the concept very well.  She’s asking for almost everything she does, if that means she gets a happy face on her chart.  And the mere mention of a sad face was enough to stop a tantrum in it’s tracks this morning.

The whole thing cost me about $5 in dollar store supplies to make.  Cheap and easy, just like me.  Wait…what?

For those who want to make their own, here’s the chore items you can print out.  It’s done in a Word doc and the pictures are simple clipart.
PDF version:  Chorelist PDF
Word version:  Chorelist MS Word doc

*just a tip – I glued the whole chore list page to poster board and then cut it out.  Much easier than trying to paste little strips of paper onto poster board.

** And another tip – this is a kids chore chart.  Stop trying to make it perfect.  They’re not going to notice if the lines aren’t exactly even or the faces are a little bit off.

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