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

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?    

Posted in Halfpastnormal is who we are, Parenting | Tagged , , | 2 Comments

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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Posted in Early Childhood Development, Parenting | Tagged , , , | 3 Comments

Small Town Social Life

Playdate at our house!

Playdate at our house!

People say small towns are notoriously difficult for newcomers to break into socially.  Folks who have grown up with each other or are related to each other naturally form a tight-knit community, and may not instantly include newcomers.

For parents of school-aged children with special needs, a close-knit community may present a bigger challenge.  Who will invite my child to a birthday party?  A playdate?  Does my kid have any friends at all?

Challenges such as impaired speech, social difficulties, and poor memory and motor skills can leave your child sadly standing alone on the blacktop.

Before you start worrying about Little Miss Adorable and Mr. Sensitive, let me reassure you that at this point in our new-to-small town life, we have a very full social schedule.  Little Miss Adorable has kindergarten birthday parties and playdates lined up to the New Year.  Six year old Mr. Sensitive has a gang of boys he hangs out with, and even The Dunk has more than his share of playdates, and he’s only two.

What’s a parent to do to help their child socially?

Enlist help.  At the beginning of the school year I asked teachers for a list of first names of the kids in both Little Miss Adorable and Mr. Sensitive’s classes.  Teachers happily obliged, especially once I explained I wanted my kids to learn their classmates’ names and they could not do it otherwise.

Little Miss Adorable still cannot say most of the names of kids in her class, but she lights up when you go through the list of names, and she can usually tell you who she played with that day.  I asked Mr. Sensitive’s teacher the first names of kids he plays with because Mr. Sensitive couldn’t tell me himself.  He’d mumble about some kid with a Star Wars shirt or the other kid with a Cars shirt.  Not very helpful, but we worked with it, and now we can ask about specific kids and who he played with that day.  This is great for fostering communication skills.

Be active.  We are out at community events almost every week, or invite folks into our home.  In a small town most people go to the big events (parades, carnivals, boat shows, school movie night or whatever.)  There’s a good chance you or your kids will run into someone they know.  Mr. Sensitive might not know the child’s name, but it’s a good opportunity for Hubby or myself to have a quick chat with that child’s parent.  Yes, it might seem like parents are socialising on behalf of their kids, but we’re happy to meet new people with similar interests.  Churches or other community groups (Hello Ontario Early Years Centres!) are a great place to meet like-minded people.  Get involved!

A friend of mine who works in tiny communities in the Arctic (towns with a population of 400!) would attend every community event and church service going  – sometimes two different denominations in the same day!  Although not strongly religious, she valued the time for reflection and meeting people.  As a transient member of these small communities she felt the connections she made outside of her ‘working hours’ paid off in dividends.  And honestly, it’s mentally and physically healthy to get out and do new things.  So do it!

Offer the invite.  Early in the school year we sent out invitations for a Hallowe’en themed party at our house.  Parents and kids were welcomed (and yes, we used those classlists to create our guest list).  It was a great chance to meet our children’s friends and their parents.

One thing I love about living in a small community is the informality of life here.  I can invite friends over for lunch or a cup of tea and not worry about my messy house.  (Although during my last lunch date I cleaned the kitchen while cooking lunch at the same time while our guests entertained themselves:-)  Offer to host potlucks or kid-friendly game or movie nights.

Model and Practice Manners.  This does not mean look like a fashion model, but demonstrate appropriate social skills, and support your child while they practice.  Each child is at their own speed on this one.

During Little Miss Adorable’s recent birthday party she hugged each departing guest, offered their lootbag, and said thank you for coming to my party.  This was not something we practiced before hand, she picked it up when we were saying goodbye to our guests.  Painfully shy Mr. Sensitive is lucky to mumble a goodbye to his hosts, and we prompt and help as needed.  The point is not to leave a child feeling victimized socially, but to help him feel comfortable and develop the skills for appropriate social interaction.

Be honest and helpful.  Be honest about your child’s needs so everyone has a good time.  Both Hubby and I go to parties with Mr. Sensitive because he’s too worried to be there by himself (and we wanted to supervise physical activities).  That’s fine, explain to the parents that you’ll stay to help your child out (we’re OK to hang out in the background), and make sure you help the parent who is hosting the event too!

Just today I called a parent to RSVP for Little Miss Adorable and had to ask their child’s name, as Little Miss Adorable could not say it clearly.  I didn’t get into details about Little Miss Adorable’s diagnosis, but simply explained that she could not say their child’s name.  With special needs too much information can be overwhelming and scary for outsiders, I try to tell parents what they need to know to have a safe and successful time with my children.  And yes, either Hubby or I will be around to help supervise that party too.

I realise there are many points I’m leaving out.  New culture?  New language?  New country?  All bring new challenges.  And I know some of this advice seems ‘helicoptor-mom-ish’, I mean, I’m advising mild stalking and hovering around your kid at events.  But my intent is to supervise, and help as needed with the goal of eventually fading into the background.

What is your advice for helping children develop social skills and navigate social life?

 

Posted in Big City to Small Town, disABILTY, Early Childhood Development, Parenting | Tagged , , | Leave a comment