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!”
“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?
Hard Core Canadian
It’s bloody cold here. Again.
We’re expecting another snow storm here this weekend and it’s minus a-billion-and-seventy right now.
OK, it’s really only -22 °C (-8 °F), but still. It is COLD.
So, like any good Canadian, we go into hibernation.
That means cranking the furnace, adding a couple layers of clothes, and fattening up for the winter.
Which means making home made ice cream!
No, really!
This is a great winter craft. I swear.
Alright, maybe it’s not the *best* winter craft, but this is what separates the pansies from the hard core Canadians.
So, here’s what you’ll need:
| Ingredients | Supplies | |
| 1 cup | Milk | 1 medium Ziploc freezer bag |
| 1 tbsp | Sugar | 1 large Ziploc freezer bag |
| 1/4 tsp | vanilla extract (optional) | measuring cup |
| 6 tbsp | Rock salt (or I just use Kosher Salt) | measuring spoons |
| 2 cups | Ice cubes | Mittens for the kids |
- Into the medium Ziploc bag add the milk, sugar, and vanilla extract (if you’re using it). You can also add other flavorings like some Nestle Quick syrup or 1/2tbsp of cocoa powder. Or just use chocolate milk.
- Squeeze all of the air out of the Ziploc and seal it shut.
- Take the large Ziploc and add half the ice and half the salt.
- Put the sealed bag with the milk and other ingredients (now’s a good time to double check that it’s totally sealed) in the large Ziploc.
- Add the other half of the ice and salt.
- Seal the large bag shut.
- Double check to make sure it’s really sealed.
- Triple check so you’re not cleaning salt and ice off your floor.
- Put mittens on your kid.
- Hand them the bag of ice.
- Force them to shake it / roll it / smush it around for about 10 minutes so
youthey can have delicious ice cream.
Once the inner bag is becomes a frozen, solid-ish, ice creamy concoction, take it out of the bag of ice and salt. Wipe the bag down, or just rinse it quickly under the tap, so your ice cream doesn’t end up full of salt.
Cut the corner of the ice cream bag and squeeze it into cups for you your kids to enjoy.
Congratulate yourself on proving, once and for all, that you’re a total badass.
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.
Plug It In
Last night we were comparing ‘ZOMG it COLD’ stories on twitter (and possibly cursing everyone in the south) when I tweeted this:
And most of the responses I got (from my southern followers) was “Hahahaha…wait…What? You don’t really plug in your truck, right? You’re just kidding…right?”
On the other hand, I can guarantee you that my followers in Western Canada were merely nodding their head and making a mental note to go plug their own cars in.
So, to all of you who live a nice warm life, I present: Yes, We Really Do Plug In Our Vehicles In The Winter
If you’re wondering why I sound like I’m talking like like Captain Kirk, with the pauses, it’s not because I’m out of breath or trying to talk funny. It’s because it’s that cold out. And when you breath in -40 cold air it tends to freeze your lungs and it makes it hard to breath and talk. No, not even joking. Your nostrils also have a tendency to freeze shut at these temperatures. Fun times.
If a maglight and MacGyver had a baby in my craft room while watching Toy Story 3…
Let me explain…
No, there is too much. Let me sum up.
Your kid takes a teddy bear to bed. Mine takes a flashlight. And yes, she cuddles up with it. Yeah, she’s weird. Really.
Only, the other night, while having a fit, Vista threw her flashlight across the room and broke it.
Now we could have taken the ‘too bad, so sad, sucks to be you for breaking your flashlight’ route. But I prefer to stay sane. So of course we went out and bought her a new flashlight.
And, of course, we couldn’t find the same pretty pink princess flashlight, so she picked out a Buzz Lightyear one instead. (great…my kid as a thing for space cadets)
Anyway… The new flashlight? Blindingly bright. Which is great if you’re looking for something in the damp dark recesses of a crawl space. Not so great if you’re handing it to a 3 year old who hasn’t quite grasped the concept of not shining the bright things in her eyes. What? She’s cute. Back off.
So we did what any parents would do. Tried to crazy glue something onto the top of the flashlight so it wasn’t so bright.
This? Did not work. At all. I may have gotten really high on the fumes produced by the attempt, though.
So, in true MacGyver fashion, we turned to the next best thing. Duct tape. Only…. we couldn’t find any in the house. We think it ran away with the roll of electrical tape that’s also missing.
After some scrambling, we tracked down a roll of packing tape, decided it would do.
Fifteen minutes of digging through all my craft scraps produced some fabric we decided would work just fine as a dimming agent.
So voila, a dim, but still functional flashlight, that would do MacGyver proud.
Now all I have to do is trim it with some pretty pink ribbon so it’ll be a Princess Buzz Lightyear flashlight, as decreed by her highness, Queen V.
Insomnia
“Maaaaaaammmmaaaaa”
*whimper*
“Maaaaammmmaaaaa… I dropped my flashlight…”
I roll over and look at the clock.
2:22am
What a weird time to wake up.
I can hear V’s whimpers in the other room threatening to become sobs.
*sigh* So much for sleep.
I slip into her room, pick up the flashlight off the floor and tuck it in with her again. She curls around it and falls back asleep.
My odd child. She cuddles that flashlight like most kids cuddle a teddy bear.
Quietly, I close her door and start roaming around the house. Too awake to go back to sleep.
Suddenly it strikes me that Bil isn’t around. Not in the bedroom. Hasn’t fallen asleep in the living room. Odd. I check for his car. Gone. I look at the clock again.
2:34am
I find my cell and dial his number.
“What’s wrong?” he answers the phone.
“Nothing. Where are you?”
I can hear the sound of the car radio in the background.
“On the road”
“You’re going to work already? It’s 2 o’clock in the freakin morning.”
“Yeah, well, I got a couple hours of sleep and then woke up. It didn’t seem worth going back to sleep for two hours, so I decided to catch up on some work.”
We talk for a few more minutes, before I say my goodbyes, hang up the phone, wander over to my laptop, and flip up the lid.
As it boots up I look at the time.
2:43am
I wonder if this is the legacy we’re leaving to our daughter.
Insomnia.
Reality Can Blow Me
Every Wednesday morning, Vista and I jump into the truck and head down to the Parent Link centre in town for our weekly therapy group.
It’s an opportunity for her to connect with other kids and work on her social, motor, and sensory skills and it’s a chance for me to connect with other parents of special needs kids.
In the past month, we’ve added a bunch of new families to our group, as many of the kids from the spring group have moved on to preschool or kindergarten.
Many of these new parents are where we were two years ago. No diagnosis. No support. Only the rock solid knowledge that there is something just not quite right with your child.
It’s a difficult place to be. I know. I remember.
With all the progress she’s made in the past few months, it’s easy to sit back and enjoy a sense of semi-normalcy.
Until, of course, reality butts in.
====================
We finished up V’s bottle of meds last night, so this morning I opened up the new bottle we had just picked up from the pharmacy.
I drew a syringe full and looked at it. Hmmm…. that’s not right. Vista’s meds are dark red. This stuff is almost clear with a slight tinge of pink. Was there water in the syringe that I hadn’t noticed?
I squirted the meds down the drain, grabbed a new syringe, checked that it was clean and dry, and tried again.
Still clear.
*shit*
I paced the kitchen waiting for the pharmacy to open.
Watching the clock. Mentally calculating in my head how far I could push the delay in her meds and still leave enough time for 12hrs between her doses.
I finally got the pharmacist on the line. And found out they had switched the brand of her meds. They couldn’t get her normal ones, a problem at the source, no longer able to order the old brand, so they switched it to a new brand.
And. Didn’t. Tell. Us.
Shouldn’t be a big deal, right? Only it is.
Each brand is formulated differently.
And that means switching brands in anti-seizure meds can be like yanking them off old meds and suddenly starting new meds. Which? Can cause major seizures.
I’ve spent the morning on the phone with pharmacies, trying to find someone who carries her old brand.
I have a call into our Neurology pharmacist asking what we should do.
I called our Neurology nurse and asked if she thought it might be OK just to go with the new brand (she confirmed that it was definitely NOT OK and that I needed to talk to the neuro pharmacist to see what he recommended).
I’m frustrated.
I’m angry.
My nerves and feelings are raw.
I’m back to grieving the child I thought I was going to have three years ago. The one that was healthy. The one that didn’t need three doses of anti-seizure meds every day to keep her alive. The one that didn’t need therapy. The one that didn’t know the inside of the children’s hospital like the back of her hand.
One day, maybe I’ll get to the end of that grieving process. But not today.
Inside My Brain Is A Scary Place
The past few weeks have been too busy. I need to stop and catch my breath.
Every time I come to write here, I manage to write once sentence before something comes up and I have to leave it.
I’m just not so great at the coming back to finish what I was writing part.
I have so many things rattling around in my brain, that I feel like I just need to brain dump, so I can start fresh again. So feel free to skip this whole post and it’s randomness.
The requisite Vista update
Meds are still a several times a day battle. She’s in therapy for it. The therapists are stumped (yay for having the most stubborn child in the world!). But I’ve decided to write a little e-book with all the things we’ve tried with her (that would work on any normal kid), for other parents going through this challenge. Because, you know, I don’t have enough on my plate. *snort*
Bil captured a video of the last few minutes of one of our evening med battles. Watching it after made me cry… and laugh. I haven’t decided whether to post it or not. It’s not pretty to watch as I try and pin her down to force feed her meds. But it sums up our life in a 2 minute video.
Medically, she’s doing well. The current cocktail of anti-seizure meds she’s on have kept her seizure free for 2 months, which is a personal record. Fingers crossed, it stays that way.
They’re going to be assessing her in the coming months for Autism. Meh… I don’t know. I’m not convinced she has it. Time will tell I guess.
Belgian Shepherd for Sale…
I love the fury creatures in my life. But they’re a lot of work when I’m trying to look after V. There are days when I consider rehoming all of them, but I know V would be heartbroken.
And as much as I love my Belgian Shepherd, he has the ability to be a grade-A asshole sometimes. He likes to conveniently forget that I’m in charge. If I were to ever get another dog, I’d look for a dog with the temperament of my border collie. He’s still a handful, but MUCH easier to manage…and has an off button.
Not all PR firms are created equal
The longer I’m in blogging the more I realize that there are REALLY good PR people and REALLY bad ones. That’s it. There is no middle ground. Mark’s hired an amazing PR firm. They’re delightful to talk to. Kudos to them.
However, if your PR firm sends me an unsolicited press release with the following title (and yes, it was typed all in caps) and no actual stated purpose in the body of the email:
BLISSDOM CANADA BRINGS WOMEN ENTREPRENEURS AND SOCIAL MEDIA MAVENS TOGETHER FOR SOLD OUT CONFERENCE OCT 27-29TH IN TORONTO
….I’m pretty sure I’ll refer to them as douches.
Add the 5, carry the 1…
I’m seriously thinking about converting our garage to an extra room at some point. Say $15K for a complete garage reno compared to $100K or so for an addition to our house. If we end up homeschooling V, we’ll need the extra space for the school area (I have no desire to use the kitchen as our classroom). Anyone have $15K they want to lend me? No, really.
Won’t you be my neighbor?
My nextdoor neighbors just put their house on the market (he got a promotion, which meant moving to another province). *insert sad panda face here*
So…..Who wants to move in? We’re really nice. Honestly. And remember…..Free healthcare in Canada…..
It wasn’t ad-ing up
I decided to remove BlogHer ads from my site. The money they were bringing in wasn’t worth the real estate they were taking up and the rules they imposed. Like not being able to do giveaways on my own site.
So now that they’re gone, and if you’re still reading, lets do a giveaway. Just cause I love you guys. And cause I can.
One of the guys Bil works with also owns a company called Simply Nail Art (if you live in Calgary and ever go up to the Crossiron Mills mall, they have a kiosk just outside of the food court).
They sell Konad nail art kits and Bil bought me a set to try out, for the fun of it. I love it. Really. I can’t do my nails without using it. Seriously.
It’s basically a way to stamp pretty designs on your nails without the cost of airbrushing.
It dries instantly (almost too quickly), which means V’s always after me to put pretty flowers on her nails. And they are pretty darn cute, so who am I to say no?
Since I liked the set so much, Bil’s coworker gave me a set to give away to my lovely blog readers (that means you guys).
Up for grabs: a Konad Stamping Nail Art kit
So, all you have to do is leave me a comment telling me when the last time you got to go sit, relax, and have a manicure (or a pedicure!) was.
That’s it. I’m all about keeping it simple.
Fine Print:
- Contest is open to everyone cause I hate contests that I can’t enter just because I’m Canadian.
- I’ll draw a winner Friday, Oct 8 at 5pm MST.
- Enter as many times as you like. One comment = one entry. BUT (you knew there was going to be a but), every comment has to be unique. No copying and pasting the same comment over and over.
Disclosure: This nail set was provided to me, at no charge, to give away to my darling blog readers. I didn’t receive any other compensation (monetary, sexual favors, or otherwise).
A REAL Dog
When I was a kid we always had a dog. But my parent always opted for terriers or other small lap dogs.
We longed for a REAL dog. You know. Something big. Something we could play with. Not something that would hide under the couch during a thunder storm.
When our terrier-crossed-with-god-knows-what died, we begged and pleaded to our parents.
“Please, please please, can we get a real dog now??”
A German Shepherd. A Border Collie. Anything that couldn’t be used as a dust mop if you suck a stick up it’s ass.
Then the day came when dad announced he was going to get us a new dog from the pound. A. Real. Dog.
OMG. We were over the moon. Finally!!
We sat by the door waiting and waiting (none to patiently) for him to come home with our new REAL dog.
Dad finally came in and we crowded around him to see what he had brought home.
*silence*
“What the hell is that thing?!”
There in my dad’s hand (it literally fit into his palm) was a shivering rat. Except that’s an insult to rats.
My dad had brought home a chihuahua crossed with a wire hair terrier. What little hair she had stuck up everywhere. She was ugly. And? Dad had a really funny idea of what a real dog was.
We contented ourselves with giving her mohawks and dressing her in my doll clothes, while still waiting for the day we would get a REAL dog.
It was a long wait.
I was in my late 20′s before I finally decided to get a dog of my own.
There was no doubt about what I was going to get.
It was going to be BIG.
Something no one could question was a dog.
And no one can question the fact that my big black hell hound, Spyro, is all dog.
He’s big, he’s loud, he looks like a wolf.
When he smiles at you, he’s all teeth.
I’ve had guys wearing gang colors cross to the other side of the street when I’ve been out walking him in the city (which might have made me laugh out loud).
When he was younger, my brother walked into my house without knocking. I was upstairs with the dog. Spyro heard the door and went flying down the stairs and launched himself, half way down, aiming for my brother’s jugular. Luckily my brother had the presence of mind to say “Hey, Spyro, it’s just me!”. As soon as Spyro recognized my brother’s voice, he spun, mid leap, to land at my brother’s feet. Needless to say, my brother knocks before coming in now.
As I laid down in bed last night, Spyro curled up on the floor next to my side of the bed. I realized that just his presence made me feel safer.
It’s not that he’s some big, bad, attack dog. But, rather, the fact he looks like he is. And the fact he can be if he really, really needs to be.
In this case, I’m OK if people judge a book by it’s cover.
Just as long as they don’t see him with his teddy bear.
Find Me
