Why special needs parents need to connect with each other

Thanks to Deb Farnham

Thanks to Deb Farnham

Why special needs parents need to connect with each other

Or who the heck is really normal out there anyway?

Before you start to raise your hand and say, hey, wait a gosh darned minute, I’m normal, take a look around you. You are probably normal based on your immediate social group – or those folks you choose to surround yourself with. You compare yourself based on seeing similarities, and ignoring those subtle differences that could make you appear strange or different in contrast to your peer group.

Yep, I said it. Peer group.

Although you’re probably not in high school, I’m talking about those folks you hang out with regularly, maybe friends and relations might be a better term than peers, but those folks are probably a lot like you in terms of income, ethnicity, political view, religion, and so on. If they weren’t, you wouldn’t be hanging out with them, would you?

So the concept of normal is mostly statistically based, it describes a curve that summarizes data points on a graph, and yep, you got it, it can really only capture stuff you can measure. Like income, and physical traits like height, and some crazy quantifiable things like IQ scores. So you are probably hanging with folks who are as ‘bout as rich or poor as you are. If you were to plot your incomes, it’d be a nice, normal curve. (I’ve talked about this before over here.)

But what about the idea of being normal socially?

Well, go back to your group you’re comparing yourself to.

Is your peer group (or buds) primarily white, Christian, republican Trump supporters? If you are too (no shame, just saying), you are pretty ‘normal’ or to use the colloquial term loosely, ‘average’ for your group. Your social and societal norms and expectations are based on the folks you hang out with. They see the world pretty much the same way you do.

So let’s take that white, Christian, republican Trump supporter and drop them into a pit of liberal lesbian feminists. Or a biker gang. Or a gay disco. Whatever. It doesn’t really matter, because now all of a sudden, you’re the odd one out.

Your peer group, the one that formerly shaped your societal norms and expectations has dramatically changed. So either you change, or you find a new peer group.

Kinda like culture shock.

But, under it all – are you normal?

You no longer fit in with your peer group (I’m looking at you, Trump supporter now fending off libreral lesbian feminists) so technically, you’re not normal – you are in fact an outlier, and now not at all reflective of your group in the least.

So what the heck does all this have to do with special needs?

The land of special needs is two things at once – it’s a sudden immersion into a strange and baffling world that overwhelms you (aka culture shock). And it’s also a wedge that divides you from more prosaically ‘normal’ folks.

Like Hotel California, once you’re in this place, you can never leave.

What is it to sit and listen to another parent talk about benign childhood issues like homework or nighttime waking when you’re terrified your kid’s gonna have another seizure and you won’t be there. Or they might just stop breathing during the night. Or you know that no matter how hard they try, your child will never learn to read.

So although on the surface, this parent and you might seem very similar (same neighbourhood, school, similar income) – your realities are worlds apart. You implicitly understand this, the other parent (teacher, coach, grandparent, whatever) might never get it.

You have lost your normal – for good.

Welcome to it. Halfpastnormal is who we are, what about you?

How do you bring your normal back? You look for it, wherever the hell you can. Twitter, Facebook and the good ol’ web are great places to start. Find a Facebook group of similar (or not so) folks who face the same kind of issues you do. You’d be surprised at what a small place this world truly is.

And honestly, Trump supporters aside (or heck, maybe even including them), you’d be surprised at how sharing a common diagnosis truly does bring people together.

My friends and followers come from all kinds of places, geographically and politically – folks span from Christian (or not) right to liberal left, to an anarchist mixed up libertarian middle place. We might have different opinions on all kinds of things (and often see eye to eye in surprising ways); but, let me tell you, that if somebody’s kid is sick or having a rough time, folks come together to support each other.

And that’s as it should be.

Welcome to halfpastnormal, just one stop in the land of special needs.

 

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Happiness is just enough

Happiness is a matter of perspective!

Happiness is a matter of perspective!

As the Christmas season draws near and Hanukah passes I’m thinking about holiday spirit and what makes someone truly happy.

I’d say we’re pretty happy. And we’re very thankful for what we have.

Our family has two kids with special needs, one unique toddler, and baby #4 due sometime in the New Year. So we’re a busy family, but we’re a happy one. Some would say we have more than our share of stressors – two major special needs, the endless challenges and rounds of appointments that go with that. But we’re still happy.

And yes, Hubby and I bicker at each other (usually over household chores, with futile promises to stop fighting in front of the kids) enough for our toddler to say ‘stop arguing!’ (He learned that one from his older brother;-)

FYI – I’m writing this post because I have insomnia and don’t want to face the mountain of dirty dishes leftover from last night.  But I’m happy we had an excellent meal and enough food on the table.  And I’m happy that our evening was spent with the kids, instead of doing dishes.

And yes, we have days where I want to lock the kids / myself up. But I still love them and we go to bed exhausted, but happy, most days.

We don’t have tons of ‘stuff’ – the latest and greatest toys and gadgets that so many households seem to accumulate.  But what we do have we use or value.  Most days, as I trip over Lego pieces or baby dolls, I would say we have too much.

We don’t have a big house, in fact the three kids love sharing a bedroom with each other. (Sharing a bathroom is a whole other story;-)  We do however have enough space to spread out and the kids love having their own playroom.

But what we do have, we really appreciate.  And most of what we enjoy are non-tangible items anyway – friends, family, community.  As a family our focus is on doing things – going outdoors, joining activities – rather than dwelling on the stuff of life.

At a time of year where people are wrapped in a frenzy of consumerism or super stressed about chasing perfection, I say make a choice.  Look for things that make you happy.  Let go of the stuff that doesn’t.  And if you truly appreciate what you have, you will be happy.

It’s pretty simple.

Happy Holidays Everyone!

Please see Lazy Hippie Mama’s You Need to Go Out of Your Head for excellent advice on enjoying this holiday season.

What makes you happy during the holiday season?    

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I, Toddler

The Dunk is now 25 months old, and by all accounts, a typically developing toddler. An affectionate and rough and tumble little guy, he is a unique blend of the influence of older siblings (Lego! Purses! Fire Trucks! Baby Dolls!) and his own personality.

With his emerging language skills we’re seeing his own personality shine through.

When I was talking to the older kids about their respective roles in life (‘You’re a Grade One, you’re the oldest,’ and ‘You’re a Big School Girl now,’) The Dunk looked on expectantly. I turned to him, and proclaimed, ‘You’re a Toddler.’

‘I, Toddler,’ he proudly announced.

And he is, though and through.

Toddlerhood is a magical time where Baby and Big Kid blend together to create something amazing, frustrating, adorable, and perplexing – all at the same time.

Honest to a fault, every mood, desire, and state (I hungry – NOW!) is completely unfiltered. And every idea must be acted on – instantly. There is only Now.

For the pint-sized dictators in our lives, is no sense of time, except Toddler Time. As paradoxical as the toddlers themselves, Toddler Time can mean staring at the cracks on the sidewalk for half an hour or running into traffic at lightning speed. Waiting for juice to be poured can take an eternity while a favorite movie or show seemingly lasts only seconds (MORE MOVIE!!)

Add these traits together and any attempt to do housework or run errands takes on the tactical challenges of invading a foreign country.

Outing to Grandmas. Diapers? Check. Sippy cups? Check. Snacks? Enough toys? Special DVD? Check, check, and check!

We’re good to go.

ARGH! We forgot wipes and a complete change of clothing. And the spare rubber boots! How could we leave the house for ten minutes without the spare rubber boots????

That day The Dunk rode home wearing Granny’s old sweatshirt and mittens on his feet.

One of the key traits of Toddlers is that they are busy little people. The entire world is theirs to explore – rocks to turn over, puddles to jump in, people to talk to, and strange food items to taste – all before naptime.

So any infringement upon their rights to explore or quest for independence (I DO IT!) leads to catastrophic meltdowns. Usually by both parties.

I have taken to grocery shopping at a local Big Box store before the sun (and Toddler) rise. Bleary-eyed and giddy with freedom, I trudge through long aisles comparing prices and brands in blissful silence while Hubby is home with the kids.

Otherwise a shopping trip is reminiscent of the movie The Exorcist. Toddler forcibly restrained, screaming, spitting and spewing while the poor parent attempts to grab bread, eggs and milk and run out the door. Anything within Toddler reach is subject to their wrath. Bread squashed, clothing removed (and thrown!), eggs crushed and milk cartons chewed open – shopping with a toddler is not for the faint of heart.

Once in the parking lot the parent realises that they forgot the diapers they came in for and have to make a decision to either go back into the store *shudder* or abort the mission and try again another day. Really, with potty training just on the horizon, diapers are overrated anyway.

Lest you think I’m exaggerating, during a recent shopping trip with The Dunk we left the store with three of his shoes. Now, The Dunk only has two feet, and he was wearing a pair of shoes when he went into the store. My goal that particular trip was to buy him a new pair. That means mathematically speaking, we should have left the store with four shoes, total.

I’ll spare you the details, but the very kind Big Box store staff held onto the worn toddler shoe (mysteriously found in the dairy aisle) for nearly two weeks before I could inquire about it at Customer Service. A smiling cashier retrieved the shoe from an enormous box labelled ‘Found’ which I can only suspect contains the remnants of other Toddler shoppers.

Being part Baby and Big Kid is challenging for the Toddlers themselves. I do not think the quest for independence is as strong in anyone’s lifetime, outside of the teen years. When asked if he needs a diaper change, The Dunk will declare, “No, I fine.” And usually he is. He recently had a self-declared pyjama day at our local Ontario Early Years Centre, arriving at Circle Time in fuzzy pyjamas. (I had his regular clothes packed in the diaper bag in hopes of changing him into something more socially appropriate.) Nope. I was told to, “Leave my ‘jammies.”

Anyone experienced in the Toddler Years will tell you to offer choices, pick your battles, redirect, and try again later. 36 hours into wearing the same pyjamas I managed to remove them from The Dunk and change him into fresh clothes. And honestly, for me it wasn’t a big deal, I figure it saved on doing laundry.

Cute little dictators, NO! I DO IT! is interspersed with cuddles and kisses, naptimes and sippy cups. Routines become a big deal in for little people in an unpredictable world, where they themselves are equally unpredictable.

Recently Hubby was struggling to get The Dunk to bed. Requested stories were read, Toddler cuddled, and Hubby was attempting to force a screaming toddler into his crib.

I called out – did you sing the Baby Robin song?

On cue The Dunk started singing “Rock me gently, Rock me slow, Rock me where the Robins go.”

I turned to Hubby, “See, he knows all this stuff. He does so much. He’s really amazing.”

From his crib, The Dunk proclaimed, “I, amazing.”

Thanks to the Ontario Early Years Centres for keeping us sane during the Toddler Years. FYI – here’s a songbook from the Ontario Early Years Centre that has the Baby Robin song (sung to the tune of Love Me Tender)

How do you survive the Toddler Years?

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