Welcome back, halfpastnormal

 

20131219-202612.jpgWelcome back — it’s great to see you all again!

Funny how things turn out around here, looks like I’m pulling good ol’ halfpastnormal out of retirement for a bit, time to work on some new material and all that.

So welcome back to the land of special needs, and a big hello to Prader-Willi Syndrome and Duchenne Muscular Dystrophy folks, folks from the land of ASD and the ADHDers who drop in and forget to comeback for a while. (just kidding, the ADHDers forget their car keys here, so they ain’t going no place😉

Soooo… what the heck have we been up to?

Family of (now) six (!) successfully relocated to a smalltown in rural Ontario is now moving again (just to the other side of town, but still, we gotta pack everything).

We’re still an alphabet soup kinda family – ADHD, LD, DMD, PWS… the list goes on, with additional diagnoses and varying complexities.

We’ve been rocking smalltown life – community events, familiar faces everywhere you go (not a day goes by that you don’t bump into somebody you know around here), outdoor living, playing in the creeks, puddles and snow.

Baby #4 has become Toddler #4, or T4 as we like to call her – the most fiercely neurotypical one of the bunch of us, and a true force of nature. She keeps the rest of us in line.

 

So welcome back folks, hope you stick around and check things out. Let me know what you’ve been up to!

 

Posted in Duchenne Muscular Dystrophy, Halfpastnormal is who we are, Prader-Willi Syndrome, Special Needs | Tagged , , , , , , , | 2 Comments

halfpastnormal is who we *still* are

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Welcome to halfpastnormal, a blog about our super-powered special needs family.  We try to live life to the fullest as we juggle the strengths and needs of all family members.  Hubby has ADD, my six year old has Duchenne Muscular Dystrophy, my four year old has Prader Willi Syndrome and my two year old is typically developing, not that we love him any less for it.

Regular readers may notice that I’ve fallen behind in frequent updates – my apologies, but we’re expecting Baby #4 in January, so I’m spending naptime napping, rather than blogging.  I hope to fix that now we’ve settle into our new home in Smalltown, Ontario.  We’ve recently moved from the busy Greater Toronto Area, population 6 million and famed for traffic, condos, and a high cost of living to Smalltown, Ontario, famed for farms, forests and lakes, and close ties to family and friends.  And you can bet we’re thrilled to be living in Smalltown.  The kids are happier, Hubby and I are happier and we are truly living life to the fullest.

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Right now our days are spent with me as SAHM – tackling housework and visiting our local Ontario Early Years Centre with two year old The Dunk.  The Dunk is such a regular at the centre that staff ask him to help with chores such as loading the dishwasher, cleaning, and vacuuming!  He loves it.

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Little Miss Adorable, a proud four year old with Prader Willi Syndrome started Kindergarten this year in our local public school.  School is a place she shines, super social and outgoing, all 360 students know her by name.  The day she started walking independently all staff knew about it 15 minutes after her arrival.  Little Miss Adorable loves animals (especially our latest addition, a new dog named Maggie) and is a veteran of therapeutic riding and dance class.  She also has the Princess Gene (it’s not a coincidence that her first steps were in a large urban shopping mall, where she then proceeded to march into high end jewelry and clothing stores).

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Six year old Mr. Sensitive has Duchenne Muscular Dystrophy and is considered to be ‘in a good place’ with this progressive disease.  Check out Right Now for more on this.  He can walk, run, and hop (sort of) and fatigues easily and gets muscle cramps, but he loves exploring the forests, lakes and wetlands that surround our new home.  Mr. Sensitive loves rough and tumble play with other kids, visits to the library and Early Years Centre and joining the boys in Beavers on their adventures.

Welcome to our halfpastnormal life, stick around, have a cup of tea and visit for a while.  We’re thrilled you dropped by.

Please check out:

The Adventures of Little Miss Adorable

Mr. Sensitive vs. His New Winter Coat

My Husband is Superman

A Story of Angels – Before you were born

In Praise of Slow

Big Truck – A Day in the Life of The Dunk

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Posted in Big City to Small Town, Duchenne Muscular Dystrophy, Halfpastnormal is who we are, Parenting, Prader-Willi Syndrome, Sensory Processing Disorder | Tagged , , , , | 4 Comments

Halfpastnormal – Moving with kids

 

Thoughts on moving with kids:

One word – don’t

OK, sometimes you have no choice. We had to move, and the place we’re at now is WAAAAY better for our quirky needs.

Accessible bathroom – check

Wheelchair ramp – check

Accessible bedroom – check

Huge backyard for the kids to play in – check that too

Office for me – absolutely

So we’re now in what could be our dream house, of sorts, a haunted 1930’s house with a modern addition tacked on set on a huge property in the middle of our town. And we can see the lake from the end of our driveway.

But honestly, the kids would’ve been happy moving into an RV and roaming the continent. (Requests included Florida, Mexico, and Hawaii😉

What we’re left with is dealing with stuff. And there’s SOOOO much of it. It feels like we’re living in an episode of hoarders – furniture, boxes and clothes scattered all over the place. The day after our move, Hubby set up my office for me, and three days after our move and we still haven’t assembled the kids’ beds. They’re actually pretty happy sleeping in a heap of sleeping bags on the living room floor. (TV and internet services were set up even before we moved in.)

Of course, there’ve been a few glitches in our move. Like the fact that we have no hot water. It’s truly not the landlord’s fault, just a service repair issue (something to do with the flood that filled our basement on the night we moved in) and a now dysfunctional hot water heater. And given the fact that it’s a weekend and service people seem to take a while about these things, we haven’t had hot water for three days.

So we make due. My stove works, so do the kettles, so boiling water for doing dishes gives a whole rustic feel to the place. Welcome to our halfpastnormal life.

But if you’ve been following me on Twitter, you’ll know we had some MAJOR issues with Uhaul. Now, I don’t want to disparage anyone, but if I’ve booked a 26’ truck and they confirmed the reservation, and then switched it to a 9’ van that I had to pick up in another town half an hour a way, I have a right to be pissed off.

Can you imagine fitting all the crap six people have in a 9’ van? I think not.

So Uhaul tried to fix things, apparently. Last reservation showed a booking in a town over two hours away. A total of four hours of driving to pick up and drop off, plus loading all my stuff.

Uh, no.

Fortunately my local smalltown storage company came through; I got a small truck and did a few runs over a couple days with some heavy backbreaking lifting by Hubby.

In short, we made it work.

And this, my friends, is our halfpastnormal life – aka the land of special needs. Stuff happens, things don’t go according to plan, and some flexible thinking, hard work, and stick-with-it-to-itness (yes, it’s a word) are what carries you through. Some of my Christian friends might call it grace and perseverance.

But it’s what special needs parents go through every day.

Welcome to it. Halfpastnormal is who we all are.

 

 

Posted in Big City to Small Town, disABILTY, Halfpastnormal is who we are, Parenting, Special Needs | Tagged , , , , , , , | Leave a comment

Nine.

What matters to the average nine year old? Birthday party invitation and the stuff of a nine year old with DMD

What matters to the average nine year old?
Birthday party invitation and the stuff of a nine year old with DMD

Nine.

A couple days ago a nine year old with Duchenne Muscular Dystrophy passed away. Nine years old. Nine.

Dogs live longer than this child did.

For you folks out there that know me, the long-time listeners, first time callers kinda people, you know I tend to shy away from the serious stuff. Because there’s enough of it out there already, and I’m already so busy with the challenges of daily life (unpacking after our recent move and getting the kids to school and various appointments) I’ve become kinda short sighted in all this.

Most days I can barely see beyond my cup of coffee.

And honestly, that’s not a bad thing. The land of denial is a safe and comfortable place. But, sometimes something happens that jolts you out of complacency and hits you. Hard.

Like a nine year old passing away from complications resulting from a common cold.

A freaking nine year old.

I don’t pretend to know the family and this is their story to tell, so I’m leaving it here; but I just want to say that Mr. Sensitive is turning nine this summer. Nine. And we’re truly blessed with good health or freaking good luck – I don’t know which it is – although all the kids had very bad colds and upper respiratory issues this winter (the Dunk ended up on inhalers); not one child had the pneumonia that swept through our town. Friends, family, and even their teachers did.

So we’re lucky, I guess.

Nine.

I can’t imagine what this boy’s family is going through right now, but my thoughts and prayers are with his family, and all families touched by DMD.

xo

Angela

 

 

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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.

 

Posted in disABILTY, Halfpastnormal is who we are, Special Needs | Tagged , , , , | Leave a comment