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.
By 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.
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.
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)
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 Genetic
I can remember sitting in high school biology and being fascinated by genetics. All the weird traits that are inherited from one of your parents.
Did you know being able to roll your tongue is a genetic trait? So is having dimples.
That second toe that you have that’s longer than your big toe? You can blame that on your parents too.
Part of the interest, for me, came from being adopted. These little dominant and recessive genes gave me a peak at two people who were, at that time, unknown to me.
Now that I’m a parent myself, genetic has taken on a whole new level of interest.
It’s fun to sit there and stare at Vista and catalog all the things that are ‘mine’ and all the things that are from her dad.
Blonde hair – definitely from Bil.
Blue eyes – well both of us have blue eyes, so it’s hard to say who her eyes look more like.
Her chin is definitely mine. And so are her ears.
Since she’s been born, though, we’ve also been exploring genetics on a different level. Scientists sit in a lab somewhere, combing through her DNA strand by strand, trying to find that one little piece of code that’s not just right. If they ever find it, then it’s becomes Bil and my turn to have our DNA examined to see if the uniqueness that is Vista comes from one of us in particular.
As she gets older, though, we discover more and more, on our own, that has been passed on to her.
If you follow me on Twitter or Facebook, you know that V’s not been totally well lately and no one’s been able to figure out why. She’s had a rash on and off, she stopped eating, has lost a lot of weight, and had one ER visit for fluids because she’d become so dehydrated. The big discussion has been – are her new anti-seizure meds to blame.
The answer? Maybe. Depends on who you talk to. The ER doc says probably, the neuro says no, family doc say perhaps, and the allergist we saw today says probably not, but it is a possibility. Unless we take her off of them there’s no way to know for sure. They’re working right now, though, so there’s no way we want to do that. Taking her off means looking at brain surgery and we’re just not ready to face that yet.
More than likely she has some sort of virus that her body is fighting that’s caused her to lose her appetite.
And the rash? Well she can thank genetics for that.
We found out today that Vista has chronic urticaria. That’s a fancy way of saying that she’s super susceptible to hives. Anything could make her react. Being too hot, too cold, eating something that her body reacts too (not to be confused with an actual food allergy). Or, like in this case, simply coming down with a cold, flu, or other virus, can cause her to have hives on and off for weeks or even months as her overwhelmed system tries to fight it off.
She can thank both Bil and I for this. We both were like this as kids too. I still quite often get hives on my arms from eating strawberries (not that a little thing like hives will keep me away from a bowl of strawberry shortcake). And anyone who has ever had a drink with me has seen the ‘allergic flush’ that turns my skin red as soon as I have liquor (doesn’t keep me from drinking either. heh)
The good news is that it’s more a pain in the ass than anything else. And? It gives her another thing to blame us for, years from now, in therapy.
Rather than ask for donations to her therapy fund, I’d rather know – what’s your favorite trait that you’ve passed on to your kids? Or better yet… which one are you going to get blamed for years from now?
In The Mirror
I lay out her new barrettes for her to pick from this morning.
“These ones mommy. They match my shirt.”
I pick up the ones with pink polka-dots and clip them into her hair. First one side, then the other, so her sides are pulled back and won’t fall into her face while she’s playing. She hate’s having hair in her face. But at least we’ve graduated from wearing hats all the time to putting barrettes in.
I adjust the one on the left so it’s more secure, and then look at her reflection in the mirror.
My heart skips a beat and I can feel the tears pricking my eyes. She’s growing up so fast. No longer a baby. And hardly looking like a toddler.
She’s definitely a little girl now. And all girl. Pinks and purples. Dresses are her favorite. And having clothes that match are important. Very important in her world.
Her blond hair and blue eyes tell me we’ll be in trouble when she’s older. She has the same deep blue eyes as me. People are always surprised when they meet us in person. No, I don’t photoshop our eyes to be blue. They simply are.
She meets my gaze in the mirror and gives me a big smile.
“You happy Mommy?”
“Yes, sweetie, Mommy’s very happy,” I lie.
I can see the independence in her eyes. I recognize it. It is my independence. And I know trying to keep her safe in a bubble with just make her fight harder to get out.
At three, I have a glimpse of the girl and woman my daughter will become, as I look back at my own reflection.
Help. I needz it.
As Vista gets older and is able to communicate more, we discover more and more about her and the weird and wonderful ways that her little brain processes things.
Our latest discovery is the fact that consequence or cause and effect part of her brain doesn’t work. It’s just not there. She has absolutely no grasp of one thing affecting another. You cannot use ‘if/then’ statements with her.
Think about how much of our parenting is based on consequence reaction.
‘Stop hitting your brother OR you’ll get a time out’
‘Eat one more bite of dinner THEN you’ll get desert’
or our personal favorite
‘If you take your meds like a big girl, THEN you get *insert anything here*’
Vista’s comprehends none of it.
And we’re not sure if that’s just the way it’s going to be or if it’s something we’ll be able to teach her.
Right now, we suspect that may just be the way it is.
So dear internet people, I, once again, need your help.
How do you discipline a child who doesn’t understand consequences?
How do you cajole a child into doing what you need them to do when they don’t understand ‘action/reward’?
Help. I needz it.
