Vista

Read The ****ing Manual

V: *holding new TV remote* “This button makes the TV quieter”

Me: *going over to check* “Yes it does. How did you know that?”

V: *rolling her eyes a bit at her obviously simple mother* “Because… it says volume…”

 

Having a 3 year old that reads kinda freaks me out sometimes.

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.

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.

Therapy. We Needs It

Conversations in our house are never normal.  Sometimes they’re weird.  Sometimes they’re scary.  Sometimes they’re borderline psychotic.  Kinda like me.

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*standing in the kitchen talking to Bil while I fill a glass with ice*

Me: “Do I ever scare you? I mean, do you ever worry that one day you’re going to come home to find I’ve finally totally and completely lost it?”

Bil: “There’s an ice pick in the drawer over there….”

Me: “Right.  Okay then.”

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Bil: “God… another damn email with Microsoft trying to convince the world how awesome SharePoint is.”

Me: “Isn’t it awesome?”

Bil: “Have you read my blog and twitter stream??”

Me: “Well…why do you specialize in it, then?”

Bil: “You can still specialize in something if it sucks.”

Me: “Good point.  I want to specialize in something that sucks too…. What sucks?”

Bil: “Pauly Shore?”

Me: “Perfect.  Going to watch Encino Man now.”

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*Vista’s playing with her toys and she has Little People horse.  She’s making neighing sounds that are progressively getting louder and angrier sounding*

Me: “Vista, it sounds like you have a very disagreable horse there.  Maybe he needs to be put down.”

Bil: “I wonder if they make the Fisher Price Glue Factory?  *in his best announcer voice* Now with real glue sounds!”

Me: “I meant she had to put the toy down, not kill the horse…”

Bil: “Oh…right….”

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So, yeah… if anyone can recommend a good therapist…

Tastes Likes Chicken

“Vista!  Leave the cat alone, already!”  I said for the umteenth time today.

Vista:  “But he’s a chicken…”

Me: “He’s not a chicken he’s a cat.”

Vista:  “No.  He’s a chicken!”

Me: “You were not thinking of putting him in the stove in your kitchen, were you?!?”

Vista: “No….. I was going to put him in the microwave…”

Me:  *facepalm*

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.

It’s A Match

I woke up this morning to the sound of Vista sobbing hysterically.

A glance at the clock told me it was a smidge after 6am.  In other words, too damn early to be awake.  Ugh.

“Vista, sweetie, what’s wrong?”  I called out dragging myself out of bed.

She came crashing into my room at the sound of my voice.

“I can’t find it!!!” *sob, hiccup, sob*

*sigh*  “Sweetie, what can’t you find?”

“I can’t find the matching sock.  I can’t find ANY socks that match!!!”  *cue fresh sobs*

“Are you kidding me?  Really?  You’re crying at six o’clock in the morning because you can’t find a matching sock?”

By this point I was resisting the urge to slam my head repeatedly on my night table.

*sniffle, hiccup, sniffle* “Yeah… cause they DON’T MATCH!”

socks 300x219 Its A Match

“Vista, I love you, but your OCDness drives me nuts sometimes.”

I get myself out of bed and head over to her sock drawer.  The offending missing sock that matched the other one she had pulled out, was of course sitting right there on top.

I picked it up and handed it to her. Immediately she was all smiles.

It makes me think back to the days when my dad used to call me ‘Jekyll and Hyde’.  I’m pretty sure Vista is karmic punishment for my mood swings as a teen.

On the bright side, she was actually able to put on her socks by herself.

This is a new skill she’s acquired recently, so we’ll celebrate that instead.  Is it too early for champagne?

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.

It’s Time

My friend Melissa came over for coffee yesterday.  It’s a weekly ritual we’ve had since our girls were only a few months old.  A break from the usual routines to stop and enjoy someone’s company.

It’s funny how with some people, you never run out of things to talk about.

And I think that’s the sign of a good friend.  When the most mundane details of your life are interesting and important to them.  And vice versa.

As we sat chatting yesterday, I quietly told Melissa that I had finally handed in the papers to qualify Vista for an aide.

“This is a good thing,” she said, leaning across the table.  “It’s time.”

It’s time.

Yes it is.

When we first started down this path of diagnosis with Vista, we were told by several medical professionals “well, I wouldn’t worry too much about her delays.  Most kids normalize around the age of 5  and you can’t even tell there was any issues when they were younger.”

Part of me has been holding on tight to that.  Tighter than tight.

It’s was like a mantra.  “She’ll turn 5 and then she’ll be OK.  We just have to wait until she’s 5.”

I know it sounds ridiculous reading it.  But it was that light at the end of the tunnel.  Five was the magic number.

And so I put off getting an aide.  After all, we really didn’t need one.  By 5 or so she’d catch up.  I mean, look at her.  She looks perfectly normal.  She’s not one of those kids that needs an aide.

Only she does.

And it’s time.

Time to let go and realize that Vista isn’t going to magically be all better on her 5th birthday.

Time to admit that we need help and we can’t keep doing it all on our own.

It’s time.

Only… I wish it wasn’t.

 Its Time

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