Evolution

On any given day, my living room looks an awful lot like this....

 ....only it's way more spread out and diffuse- I would need a wide angle lens to fit it all in and that just isn't in the budget!

So this blog is a place where I try to be open and honest, and give you a bit of a glimpse inside our lives. I think that it is important to share ideas and insights, and help people where and whenever I can. It's also a place for me to admit to my many parenting mistakes. I don't so much like admitting to them I'd far rather just sweep them under the carpet and pretend they don't exist. But they do. In multitudes. Parenting is a learning process and it doesn't always come easily. Even if we had instruction booklets for each kid we wouldn't have the time to read them, would we?

You are probably wondering how Lego, occupational therapy and fine motor skills somehow add up to a  parenting mistake, aren't you?

A long time ago in therapy (Owen was about 5 at the time) he was given the task of assembling a car by reading the instructions in little manual. He had a terribly difficult time with it but he kept at it-  of course the end result wasn't exactly what was pictured. The therapist was gently suggesting that it was a skill he may never develop. At the time it bothered me immensely because I knew that he really wasn't a "car" type kid- we've got hundreds of them laying around because cars are one of my stepson's favourite things in the world. Owen has always been more interested in "people" toys. One of his first favourite games was to use spoons as characters- even before he was verbal he would put them face to face and make interesting intonations with his voice. But thinking that maybe he needed some extreme help in the area of putting together Lego cars we set to work on practising that skill.

Perhaps not one of my finer moments. Oy.

If you aren't interested in something, it makes it super hard to learn. I sort of gave up after a while because while I know it was great for him to work with Lego for his fine motor skills I didn't want him to think of it as torture. It REALLY IS an amazing tool for so much learning- problem solving, hands on technology, literacy, math, lateral thinking, construction design.... soooooo many things... I'm barely scratching the surface of it's educational benefit.....

So I took a step back. And I let HIM find a passion. Mario? MAAAAARIO!! THIS-

Which then changed to THIS-

Which grew into this-

 And then turned into this-

Which transformed into THIS-

So what I learned through this process is something I already knew, but sort of ignored in a moment of weakness- we learn better and far faster if we have passion in the subject. Our imaginations and brain capacities ARE NOT LIMITED if we are provided with opportunity. And we don't all follow the same path. For Owen, (since he loves computers and Mario to the moon and back) we first introduced the larger concept of pixels. Oh my Heavens the boy thinks in PIXELS! Then he spent a lot of time reading about all of the different inceptions of Mario over the years. He can not only build them, but he can tell you which one is which. I had NO IDEA that 8-bit Mario looked different than 32 bit Mario and I am still struggling to grasp who is who! The picture below should give you a good idea of just how many Mario's we've seen over the last 2 years. I haven't taken a picture of every single one I just don't have the space on the hard drive!

And he still has no interest in building cars! :)

This  post is part of  #TherapyThursday, which I hope gives you a glimpse inside our lives.  Care to join me in raising awareness of Special Needs?  Post a blog, picture or tweet about it using the hashtag #TherapyThursday.  Feel free to post a link below in the comment section!  Remember that there are many different types of therapy- Occupational, Physical, Feeding, Speech Language and Behavioural to name a few.  I hope it will serve as yet another way to spread awareness of special needs!

Play Dough and Fine Motor

Whether you call it play dough, therapy putty, modelling clay or play clay it is a whole lot of fun to play with, and pretty easy (not to mention cheaper) to make at home.  We have spent the last few months experimenting in the kitchen with different recipes and I thought it might be a good idea to share the results.

Play dough is a really versatile occupational therapy tool at Casa Sprung. Because of the malleable nature of the clay it is an excellent tool for stretching the tendons and strengthening all of the muscles in the hands, helping prepare them for better fine motor skills. Fine motor activities include anything that requires the strength, coordination and precise movements of the hand muscles- so think hand writing, using scissors (or utensils, tools of any type really), zippers, tying shoes, manipulating small objects (think Lego- I'll post next week about that)- things that require precise motor movement to complete and often delicate task.  Both of my boys have difficulty with fine motor skills, but for slightly different reasons.  Did you notice the super bend-y fingers in the photo above? They bend both ways- forward AND backwards. The oldest has "hypermobile joints" which means that his joints bend much farther than normal. Unfortunately, this can cause a lot of additional stress on the joints. Fatigue is common (other muscles have to work very hard to compensate for the joint instability) and it's difficult to complete tasks because of it.


At Christmas we bought the Littles some scented play dough thinking that it may be a fun way to focus a bit on fine motor tasks.  It turned out to be the favourite gift- they ALL played with it for hours, big brother included. The only trouble was that Daisy wanted everything to dry so she could keep it- and I quickly realised that it was going to be expensive to keep them in play dough. I also noted that unless I bought the really expensive therapeutic putty I couldn't really purchase different dough consistencies. Therapy putties typically come in varying degrees of soft, from extra soft to firm. NOT cheap. So we "kitchen hacked" a number of popular recipes to see what we could come up with.

Here is what we found!




Cornstarch Dough (cooked)
was very soft and light. We liked it, but it tended to make our hands feel a little dried out. The recipe we used can be found  here.




Flour Dough (uncooked method) was a little firmer in consistency.  It doesn't exactly feel like commercial dough but it's fairly close. It did leave a really weird film on our hands but even my sensory boy kept on trucking. You can find the recipe we used here.




Probably my favourite dough was Jello based. Yes, this added to the cost but not only was it a pretty colour it smelled like grapes and my hands felt GREAT afterwards. You can find the recipe we used here. Note- I used coconut oil in the recipe and I think that is what I will be adding to play dough from now on.  Consistency was very similar to regular store bought dough.




To increase the resistance of any of the doughs (or to help sensory avoiding kiddo's) you can place the dough inside a heavy-duty-plastic-zipper-top-freezer-bag (I'm pretty sure that is breaking every single grammar rule on the planet but I don't want to name drop) and have them squish the heck out of it.

There really are a ton of benefits to play dough- not just Occupational Therapy! This is why it is a staple of early childhood classroom tools. Ignore anyone that suggests play dough is for preschool- I had the time of my life hanging out with the monsters and rolling dough, and I can't wait until we do it again!

The artist in me is screaming THINK OF THE CREATIVITY!

This  post is part of  #TherapyThursday, which I hope gives you a glimpse inside our lives.  Care to join me in raising awareness of Special Needs?  Post a blog, picture or tweet about it using the hashtag #TherapyThursday.  Feel free to post a link below in the comment section!  Remember that there are many different types of therapy- Occupational, Physical, Feeding, Speech Language and Behavioural to name a few.  I hope it will serve as yet another way to spread awareness of special needs!

Rare Disease Day

First Time on Skates

It is Rare Disease Day!

In honour of this, I would like you to meet Owen- my 8 year old son. He has a rare genetic anomaly- specifically 11q23.3 (x4). Looks pretty technical when I type it like that! Here is a quick explanation of what it all means. Everyone has 23 pairs of chromosomes- these are the structures in each of the body’s cells that carry the genetic information (DNA) that tells the body how to develop and function. They come in pairs, one side inherited from each parent, and are numbered 1 to 23 approximately from largest to smallest. Each chromosome has a short (p) arm and a long (q) arm. Sometimes, there are errors within these chromosomes (missing genes (deletions), extra genes (duplications), genes that have ended up in the wrong spot or wrong chromosome, or structural differences like the arms being fused). All of which can effect how an individual develops.

In Owen's case, he is triple rare- 
1. He has a small section of triplicated genes (meaning he carries 4 copies instead of the usual 2) on the (long) Q arm of the 11th chromosome- at the junction of 23.3. Deletions are by far the most common issues, followed by duplications (meaning 3 copies)- triplications (4 copies) are extremely rare.
2. The second part of the rare equation is that it is found on the 11th chromosome. It can be a lonely chromosome. So far, the only known person (in the world) that carries the same anomaly is Mr Cleverly Disguised as Cake. Sure, there are other known syndromes on the 11th chromosome (Jacobson's, Emanual, Neuroblastoma, Ewing's Sarcoma, Ectodermal Dysplasia type 4) but none are exactly what Owen has.
3.The third part you ask? He's freaking fantastic! He has a number of super powers- like hyperlexia (the ability to read before being taught- in Owen's case, he was spelling words on my fridge when he was 2- even though he didn't speak until he was 5) He has a deep understanding of empathy, and the brightest, happiest attitude I have ever encountered. He sees the world from a different angle than most- which often boggles my mind and makes me think that I need to look harder to see if I can catch those things that escape me. He is a computer whiz- no password is safe from his enquiring mind. Perhaps the coolest part? The unique and not often found ability to fall down, grin, brush off the dust and start all over...WITH A SMILE.

"It's pretty slippery out here Mommy!"

He has his challenges. Feeding difficulties. Unique language. Hypomyelination in certain areas of the brain. Motor planning, control and coordination difficulties. And while these things can be tough on a little guy that wants to be in the centre of the action, he takes it all in stride.  Not much stops him from participating and enjoying in every moment of life.  And that is something that I am eternally grateful for. He is not dis-abled, he is differently abled.

So what does it all mean?
Well, nobody really knows for sure.

The one thing that I do know for sure?
It is frightening to hear a specialist say "we don't know" in reference to your child.  But it will not stop us from enjoying every moment of every day.

xoxo

Snow Day and Heavy Work

I don't know what the weather is doing where you are, but it feels like we've had nothing but bitter cold (minus 37C with wind chill!), freezing rain and more snow than we know what to do with since Christmas.  It feels like the kids have been on an extended holiday for weeks now because of all of the bus cancellations.  The mercury is so low that they haven't been having their regular outdoor breaks at school either.

Even the kids are wondering when it will stop

All of this is throwing a bit of a monkey wrench into our daily life.

The kids are bored but also full of energy. Which spells trouble. Are your kids driving you nuts yet? Are they a bit out of sorts?

Either we all need a vacation (not likely to happen) or we need to help them sort themselves out!

Looking for the "bright side"? I sure as heck am!

One of the best parts of being a special needs parent is learning some cool tricks to make things run a little smoother. I wish I had realized the mechanics behind this a long time before now- because I find it works wonders for all three of my kids and it is so simple to do.

Heavy work activities (i.e., proprioceptive input) are used for children with sensory processing difficulties to help increase attention, decrease defensiveness, and modulate arousal.

Oh yes, the snow IS WAIST DEEP!

Proprioceptive input is the performance of tasks that involves heavy resistance and input to the muscles and joints, and is essential in helping our bodies (both typical and atypical!) assimilate and process both movement (vestibular) and touch (tactile) information. This resistive input obtained through heavy work activities is generally organizing and can improve attention, arousal level, body awareness and muscle tone, as well as decreasing defensiveness.

And it's incredibly simple and easy to build into your day- especially in the winter months.

Are your kids a little out of sync? Dress them up in their heavy winter clothes- for some kids, the heavier the clothes the better this works. Take them out in the deep snow have them fight their way over the snow drifts! Stretch! Climb! Work it!

Oh yes- while they are out there, hand them a shovel.  Heavy work is about pushing, pulling, and lifting. I'm sure you could use a hand clearing the snow from the side walk and driveway! Grab a sled and fill it up with snow. Drag it around the yard a few times.

The Trailbazers hard at work

She tried really hard, but required a tow!

Connect and engage with your kids.  They are totally worth it! Snow days can be rough on everyone but I think that we owe it to ourselves to find positive ways to use the time we are given.

Do you have any tips or tricks for coping with kids on snow days?  Please share! I am dying to know!

Leave me a comment below- don't worry, I promise I won't bite! :)

No tears here! She's a very good sport!

The Year in Desserts

 It's been a long time since I have done a post dedicated mainly to the stuff that comes out of the kitchen.  I can't think of a better time to do it than during the holiday season.  My Facebook feed has a ton of what we call "food porn" pictures, but my blogging has been shoddy at best lately.  I have a TON of things to talk about- I just have not been able to find the time to get it all out.

Where does the time go?

It seems like only yesterday I had a toddler and a newborn. Suddenly I have an *almost* 8 year old and an *almost* 6 year old.  They are growing well, and learning lots, and not a single day passes that I don't marvel at just how wonderful they are.

So without further adieu, some of the best food porn of the year-

I'm not going to lie. There was an obscene amount of chocolate. It sort of edged it's way into everything. Sometimes, like in the case of these Triple Chocolate Espresso Brownies with Chocolate Sauce and Peanut Butter Cup Ice Cream, it was present in copious amounts, as well as many different types.

You may notice another trend- peanut butter.  I am not usually much of a fan. I will happily blame it on this divine indulgence. Pretzel base, peanut butter buttercream, homemade caramel topped with melted chocolate.  I'll admit- there were more than a few kcals in them but an extra lap of the track evened it all out.  It sort of naturally led to the next recipe. Oy.

Chocolate Fudge Cake with Peanut Butter Buttercream and Chocolate Ganache. Not too shabby. Even if I do say so myself.

Of course there were cookies.  And I mean A LOT of cookies. I think I counted 50 batches of plain old chocolate chip.  If you're counting, that is almost one batch per week.  Then throw in the various other cookies I made over the year and well.... Um. Let's NOT count. Let's just say that while I made a whole bunch, they weren't always made just for us.  

There were chewy brownie cookies.





And Milk Chocolate Chunk with Salted Cashews. Oh boy.  Totally worth it. Totally.








There were an awful lot of chocolate stuffed things after I discovered Chocolate Butter.  Think of Nutella, minus the nuts.  And then let your imagination take you away- chocolate filled croissants, chocolate stuffed french toast.

I know I just said Chocolate Filled French Toast, but I feel the need to say it again. And again. And again!








Ditto for the homemade Caramel.  It took a number of tries to get it right.  Thankfully it is versatile and my family choked it back not matter how much I complained that it just wasn't to my liking and that I'd have to make it again. It goes with lots and lots (and lots) of things. Like brownies.
And ice cream.
And chocolate.
And apple crisp.
And puddings.
And cheesecake.

Heck. Who am I kidding. It goes with everything.
Like oatmeal.

And Apple Grenades.
An apple, hollowed out and filled with vanilla bean ice cream and caramel.

Did I mention just how much I hate Pinterest?

Sigh.










There were buttertarts.  And pies.  And lots and lots of crumbles and crisps.

And that brings us back to Christmas again doesn't it?  I haven't even touched on the fruit filled delights of the summer.  I've left out a lot actually. And suddenly I feel the need to do another post based on all of the healthy eating we've done.  Tomorrow is another day- and I have a ton of pictures left to talk about!

Did you like this post?  Don't be shy!  Let me know what you think in the comments below!

Happy Baking!

Banana Berry Pancakes

The Best Pancakes in the WORLD.

Well, ok, the best pancakes in Owen's world- and I figure that since he doesn't eat much, he must have a very delicate palate.  Or something like that.

Perfect for a Sunday morning- or in our case, every morning of the week and sometimes twice on Sundays.

The thing that I like best about them is that they aren't just flour. Eggs, buttermilk, bananas and blueberries, cleverly disguised.

Because in this house, every bite has to count.

Best advice we've been given so far by the dietitian- if your child only eats a few solid foods, vary your ingredients as much as you can. So switch up fat source, use different oils. The flour can be switched on a rotating basis- sometimes I use half white, half whole wheat, sometimes I use whole grain spelt, or I may use buckwheat.  Looking for a protein and kcal boost?  Replace some of the flour with ground pecans (pecan flour) or almond (almond flour)-  I change flours like some people change hair colour.

Banana Blueberry Pancakes

• 3 large bananas, mashed (they don't have to be over ripe- anything will do!)
• 4-6 eggs
• 3 tbsp Extra Virgin Olive Oil (or your favourite- mix it up!)
• 1 tsp vanilla
• 2 cups flour (again, variety is the spice of life- 1/2 white 1/2 ww, or whole grain spelt, or buckwheat)
• 2 tsp baking powder
• 1/2 tsp baking soda
• 1/2 tsp salt
• 1 cup buttermilk
• a handful of fresh (or frozen) blueberries **I spread the berries on top after they go on the griddle to make sure the batter doesn't turn all funky purple**

So if you know me well, you know I like to save time.  Toss three large bananas in a bowl- grab your electric mixer and whack the heck out of them.  Add the eggs, oil and vanilla.  Beat it well.  

In a separate bowl, mix your dry ingredients.  Dump on top of banana mixture. Mix with electric mixer on low speed, and slowly pour in the buttermilk.  My mom always said that it was best for your pancake batter to be a bit lumpy- but these seem nice and tender and fluffy even though I use the mixer.

Heat up your griddle- 350 degrees seems to be the magic number.  Using 1/4 cup measure for small pancakes, 1/3 cup measure for larger, scoop batter out of bowl. From about 3” above griddle, pour batter in solid stream onto griddle. If it is a little thick you can add a bit more buttermilk.  Top each pancake with some blueberries. When bubbles appear, flip.

Serve with butter and syrup.  Makes approximately 10 pancakes, depending how big you like to make them.  If you use 5 eggs, and eat 2 pancakes every morning, you end up with one egg/day, cleverly disguised as pancakes.   Batter keeps in fridge for 3-4 days.

Happy Birthday!

Today is the day!  Happy Birthday to my husband, Mr Cleverly Disguised as Cake!

It's been a roller coaster year.  We've had long separations in the form of unpredictable work travel. Tons of extra activities on everyone's part.  We've had politics, academia, full schedules and times so busy that we haven't been able to connect.

Health concerns that knocked the wind out of us.

Children growing and changing, challenging our parenting skills and at times, our sanity.

We've had doubts- though not of each other's ability to rise to the challenges, but of our own ability to overcome.

But all of these things were tempered with more JOY than I can possibly put into words.

I never thought that it was possible to fall in love. I'm far to logical for that.

And I truly never thought it possible to love someone MORE with every passing day.

You delight in proving my theories incorrect, don't you?

May this year bring you everything and more.

With this cake (OF COURSE THERE IS CAKE!) we wish you the best and the brightest things the world has to offer... xoxoxo

Brownie base, Chocolate Ganache, Milk Chocolate Mousse, MORE Ganache, Crumbled Espresso Meringues, Brownie Chunks, and Salted Caramel Drizzle

Happy Birthday to the Man We Love!

The Accessible Ex

It's not easy being green..... 

Local fall fairs, festivals and exhibitions bring back some pretty wicked childhood memories for most of us.  We live in a region where most of these activities signal the end of summer, the return to school for the little ones, and the beginning of the busy day to day schedule.  The rides! The food! The games! The smash up derby!  The music! The midway lights, sights and sounds!

The Pilot

Stop! Stop! STOP!

For some of us, and some of our children, the fair is a completely overwhelming experience that is not fun. The noise is too noisy, the rides are too fast, the lights are too bright and the crowds are confusing.  The rides are not easy to get on if you are in a wheelchair or have movement difficulties, and the crowds of people waiting behind you are often not very kind. I am not angry when I say this, I truly understand that waiting really stinks sometimes. But I also understand the other side of that- because we often wait longer, or go at times when there will be fewer crowds, just so that nobody has to wait for us. Sometimes, we don't go at all.

It isn't always easy to ask for special consideration.  In fact, it never is. And as a special needs parent it never really ends.

I was a bit surprised when we received an invitation to an event called "Terrific Thursday".  Families with special needs kids were invited to attend the Quinte Exhibition event, held before the official opening of the fair. This was a sensory sensitive event!  No music, no crowds, no bright lights.  The event was held in partnership with the Quinte Ex, World Famous Rides, the YMCA and the Belleville Fire Department.  Lunch was provided by Boston Pizza.  WOW!

First time ever! 

It felt almost too good to be true.  The volunteers from the YMCA registered us at the gate.  The Firefighters were stationed at every ride.  I got all teary watching them gently carrying participants out of wheelchairs and into rides. Because I'm a big sap, I cried even more when they took the time to make sure that my kids were safe and strapped into each ride.  As I said before, it's hard to ask for special consideration. But there, in that space, I didn't have to ask for anything. I didn't have to explain anything. We could just be. I was completely overwhelmed with the amount of volunteers that took time out of their day to make our day so perfect.  It was an amazing experience for us as a family, and one that we will never forget.  To the organizers and volunteers we offer our humble thanks.

The ride won't move until everyone is strapped in!

This is community.  This is accessibility. This is something that we so desperately need! 

So what I am asking from you, Quinte Region, is this type of event something that you would like to see more of?  And if so, what works for you?  We have very very few things locally that are geared toward kids with special needs.  I want ideas!  I want plans!  Leave me a message below and let's chat!

Thank you so much!

In the Blink of an Eye

We spend many of our summer days at the beach, and it is always an adventure. But remember the time we went to Florida?

Something frightening happened.  Something that I hate to talk about. Something that strikes so much fear in me that I have horrible nightmares.

I was watching.  I mean really watching- standing beside the pool, not more than six feet away from my little boy.

He was not wearing a life jacket. He wasn't particularly brave about the water.  He spent most of his time clinging to the side of the pool.

But suddenly, on the second day, he found his comfort zone and decided to let go of the side and wander toward the middle. Just to see how far he could get.

He (nor I) never anticipated how difficult a slightly sloped bottom would prove to be.

In less than a blink of an eye he was over his head. 

And under the water.

It's true what they say.

Drowning is almost silent.

No screaming, no calling for help. No splashing.

He lost his footing, his mouth opened in surprise.

Eyes full of terror.

I watched the water being sucked into his lungs.

His little body slipped under the water, arms stretched out to me.

I dropped to my knees and reached out in vain-

I wasn't close enough to reach him from the edge of the pool.

I must have cried out. Jon was in the pool in seconds (that felt like hours) and as if by magic, connected our hands. I pulled him up onto the deck.

Those terrible moments while we waited to see the water come out and the air go in.

I almost LOST you.  

And I was faced with the truth- I did not make him wear his life jacket, I was not close enough to reach him, and I was not strong enough to pull him out by myself.

Time has passed, but the fear has not.

We knew that we couldn't keep him out of the water, that we must regularly face it again and again, calmly, and safely.

Never forget that in less than a blink of an eye, our kids can be over their heads.

And drowning really is almost silent.

It has been over a year. And here we are.

I have nervously sat tub side, pool side and lake side hoping that he cannot read my thoughts or see the fear on my face.

He has been very brave, but just a few weeks ago I realized that he is only beginning to process what could have happened that day. He said:

"Mommy, I can't breathe water.  It will kill me."

Somewhere along the line his therapy has become my therapy.  And we've come a long way.  There is definitely less fear, but this was a terribly difficult lesson to learn.

Do you make your children wear life jackets when they are near water?  Have you learned how to perform CPR, and what you are supposed to do in a near drowning situation?

Caring For Kids has some great information on water safety- be sure to check it out!

A Bicycle Built for... Owen!

You may remember this post from last summer, where I had to eat my words.

Last year, I said that "Balance is such a challenge that Owen may never graduate from a tricycle."

And true to form, he was on training wheels in a matter of weeks.

He's getting so much bigger.  And much more aware that he has some special needs, and that his body doesn't always cooperate and allow him to develop as quickly as his peers.

And he looks at his big brother whizzing up and down the street on his two wheeler with longing in his eyes.

That's kind of tough to see.  I know how badly he wants to be like everybody else, but also understand that it may take a bit longer to coordinate all the things required to ride without training wheels.

My untrained eye tells me that he needs better trunk control- I think I mean *stability.  But he doesn't really develop it with the training wheels on the bike- they do that for him. And he definitely needs help with coordinating holding the bike up while pedaling, as well as coordinating looking up, pedaling and remaining aware of everything all at the same time.  If you think about all of the things that need to happen to ride a bike it can be overwhelming to any child, but especially to those that have developmental difficulties.

I'm not one to sit on my butt and wait for everything to fall together magically.  Oh, sure, it does happen now and again, but my job is to help my kids learn to fly.  I take it quite seriously.

Enter the DIY Balance Bike.

Oh how I've wanted to buy a balance bike for him!  But they are kind of pricey.  And they are all pretty little- he's 7 now, and while he is very skinny he is also pretty tall.  Most of the balance bikes that I've seen have been for the 3 to 5 age range, which are way to short for him.  

So we decided to sacrifice his current bike with training wheels.  We removed the pedals, chain and all of the other, um, parts that you would normally find in that area of bike. And we lowered the seat slightly so that his  feet would be flat on the ground while seated.

I am officially kicking myself for not doing this at least a year ago. 

You have no idea WHAT A BIG DEAL it has been for him to have a TWO WHEELER.  Last night as HE whizzed up and down and around the driveway, he could be heard shouting to the UPS man:

Is it working?  Heck YA!  So much more challenging that training wheels, a boost of confidence at having a bike that looks much more age appropriate and he has to WORK way more skills to get it moving!  Daisy can't wait until I make her one!

My suggestion for anyone not sure about the benefits of a balance bike- just do it.  Scout out a second hand bike at a charity store or yard sale.  Remove that pedals. Throw away the training wheels. 

And watch them fly! Just make sure they wear a helmet :)