Welcome to Our House - The Analogy ©

Having a baby is special. For some, it’s a lifelong dream, for others, a wonderful surprise. Either way, many of us have thought about taking this journey and whether it’s planned or a pleasant surprise, we all have preconceived ideas about what our child will look and be like. But what if it isn’t what we planned or expected? This is a short story I have written for parents who have or are expecting an exceptionally special child.

Welcome to our House – An analogy

After many months of dreaming, you finally decide it’s time. You are going to build that perfect house of your dreams. You have saved and saved, and now it’s time to put your plan into action. You find a wonderful, perfect piece of land in the city. It’s exactly what you are looking for – because it’s the plan that everyone talks about. You envision the all brick house sitting on luscious green grass, surrounded by a white picket fence. Inside is a marble foyer leading into a family room with beautiful oak hardwood floors. Granite lines the kitchen counter tops and there is an island sink in the middle. Upstairs has four perfect bedrooms and the master bedroom has an ensuite bathroom and an enormous walk-in closet, of course. It’s truly a dream come true, and it’s only a matter of time. You purchase the land and think to yourself, in nine short months, you will have it all.

But suddenly your agent calls to tell you, the land is not properly zoned, and the city has not approved it for building your perfect home. They have instead, given you land in the country, where an old country home sits. You are absolutely devastated, your dreams vanishing right before your eyes. You know you can’t back out now, you need a place to live, and despite it not being what you wanted, you know that somehow you will manage and that you can continue on.

You tell everyone what has happened, and everyone is disappointed, some even offering their condolences. You know that everyone else has a nice city home, and that was what you had planned, but you have to come to terms with the fact that you must learn to live in the country.

You go to see the property every month until closing and something funny happens. You start to fall in love with the place. The air is fresh, it’s peaceful and serene. There’s a pond on the land, and the house, though not a new all brick home, is quaint, and has lots of hidden potential. You soon realize it’s not a awful place, it’s just a different place. It’s slower paced than the city, less noisy and flamboyant, but it’s beautiful none the less. And in the process, you soon realize you may even get to meet some new and wonderful neighbours.

Its closing day and you suddenly find yourself full of anticipation, but you are still a little worried. After all, it isn’t what you had originally hoped for, and the house may need some repairs. But you are determined to accept it, and tackle everything one step at a time. You open the front door, and suddenly you are thrilled with what you see. The house is lovely, and has lots of character. The rooms are smaller but it’s decorated with beautiful attention and detail. The kitchen has marble instead of granite, and the bathroom has a soaker tub instead of a Jacuzzi. There isn’t a walk-in closet in sight, but the rooms all come with an indescribable view. Somehow, you just know that it was always meant to be and that this is now home.

This is my analogy of what it will be like for people who discover that they will be caring for a baby with Down syndrome. For us, it is not a terrible place to be, it is a journey full of surprises, milestones and discovery like any other child. And as the story suggests, sometimes it’s only a matter of ‘point of view’, and surprisingly, once you have been there, you don’t want to be anywhere else. The journey, like all others doesn’t come without some bumps in the road, but once you find your way, it’s all about the place you discovered, in most cases - quite by random chance
Author: Sandi Graham-McWade, Copyright

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Monday, April 25, 2011

My Journal - Week 87 (25Apr11)

Did the Easter Bunny visit you??

We had a fantastic weekend, and I do believe Hunter now knows the meaning of Easter... in the kiddy way of course!  We decided to get Hunter a Bunny after all - yes a real live BUNNY rabbit.  This is Hunter's first pet of his own, even though Mommy & Daddy have to care for her while Hunter is little.  Here are a few photos of Hunter's Bunny... who to this day still has no name other than Bun-Bun....  She's only 12 weeks old and is a Holland Lop rabbit.  It seems that she will get to be a whopping 10 pounds when full grown (in about 3 more months) and she's a grey/brown colour.  Great kind of bunny that is perfect for younger children.

Introducing the newest member of our pet family!

Such a curious little bunny!

But ever so loving and cute!

Daddy getting down to my level to play!

Meeting the kitty cats... and nope I'm not afraid!

A little bit of hide and seek with Twiggy?!

And loving to rest in Mommy's lap of course!

Also, we had a wonderful Easter (turkey) dinner at my cousins home, and it was scrumptious!  Hunter has definitely come out of his shell, back to being the cutie boy that he is.  Walking around causing mischief everywhere and at every turn he made.  Hunter's latest mischief is opening drawers, cupboards and doors of all kinds.  We have had to purchase latches and other additional safety devices in order to save precious little fingers!

Sunday was a restful day but since it was so beautiful out, we decided to take Hunter for a walk, (well - Hunter had a first class ride...) to get fresh air.  Mommy wasn't able to go very fast or far but Hunter didn't seem to mind one little bit.  When Mommy's back started to give out, we retreated back to the house where we decided to put Hunter's last year birthday gift to some use, and swing swing away!

This is my new ride!  Daddy loves to push me around in it!

I know it's a bit of work for Daddy but I really enjoy the ride!

Can we go now Daddy?  I don't want to sit still any more!
I still love my swing!!  SO much fun!

I wish I could go higher and higher!  Just wait!

I love that my Daddy wants to play with me!

And Mommy helps too!

I just love my Mommy so much!

And it seems Mommy loves me that much too!

One last swing as the sun goes down!

And I get to slide down too, before going inside!

And last but not least, here are the next usual three videos of Hunter's swimming lesson (which was last Thursday) - lesson number four!

Hunter's 4th Swimming Lesson - Part 1

Just another day in the pool! While it is obvious that Hunter is a lot more relaxed with the whole swimming environment as well as his instructor Bonnie and Pool Deck Supervisors, what isn't as obvious is his demeanour. If you watch closely, you will notice it doesn't take more than a few seconds for Hunter to trust Bonnie and also lay back in the water to "float". You can clearly see it looks like he's sunbathing in the water with his arms back above his head!

Part 2

More and more fun for Hunter in the water! He really enjoys each progression and loves to splash while with Bonnie. Hopefully everyone can see the little advances that are being made.

Part 3

This time around I caught the last bit of his lesson before running off to the change room to get Hunter back. You will notice how Bonnie has him stand up at the edge of the pool, and gets him to enter the water from a standing position. Something else I have noticed while watching his videos is that she has been provoking Hunter to "jump" into the pool even when he's seated at the edge, by coaxing him with her hands behind his back. I noticed each time she does this, she tries a few times to see if he will come in to her but knowing at this stage he wont, she follows up by bringing him into the water herself shortly after. To me (and I am presuming only) this is the way you entice muscle behaviour and repetition for him to realize that this is the action she wants him to do, and has him do it with her help each time. I am guessing eventually we will get to see Hunter access the water on his own into Bonnie's arms.

Thursday, April 21, 2011

My Journal - Week 86 (21Apr11)

Unassisted, Unaided Standing up!!

It's official, we have it on video.  Today, I was able to get a video of Hunter "self-standing up".  To me, it's funny, all it takes is a simple dryer sheet, tissue or paper and even an empty tissue box!  It's all about distraction and confidence.  One allows the other to cultivate and grow.  It's the story of Hunter's life.  What we know he can do, he wont - for lack of confidence.  What he eventually does he does out of distraction or deception!

So, Yay for Hunter!  With today's repetitive self standing occurring we are hoping the many amounts of times that he completed this new milestone will ensure that he is much more confident with his new ability and that he will continue to do it without looking for walls or furniture to go to first!

So what did we do to encourage this?  I know that Hunter is both a visual and kinesthetic (physical) learner - where being a visual learner is how he recognizes what to do, and is his motivator and kinesthetic is his practical way of getting there.  I figured it would help for Hunter to see how to stand up by himself (thus watching various children who were already doing this) and then to also to position him to physically go through the motions of standing up using his own body and not furniture or walls.  After watching his cousin standing up and also watching his friend Taylor Rose a couple of weeks ago, I noticed the way they each stood up by themselves.  With his (typical) cousin, "tripoding" (bum up hands down) worked and watching his friend Taylor Rose (also has Ds) she "tripoded" but used her knees to get the rest of the way up.  I noticed for our kids, where their bodies may be perhaps less muscular or shorter in certain areas such as length of arms or legs - they need to go through an extra step of figuring out what works best for them.  Most people don't realize that having to learn an action or milestone and then secondly learning a completely different way to do it (which would be physically unnatural for most others) is what can cause or is the delay.  Think about it though, is it really a delay or is it just that there is something more!  Children with Ds, or perhaps Hunter more specifically as an example, are going though more stages to accomplish physical events which in hindsight may obviously take a bit more time if more steps are involved!  I had to laugh however, it may seem backward to some, walking and running first before being able to get to a standing position unassisted, but I think Hunter is a smarty pants to have figured out how to do it this way.  Why not be mobile first?  He knew he had access to getting up so, there was no reason to delay walking whatsoever!  Whatever and whichever the way, practice does make perfect!

Oh and for the record, just how cute is it that he gets mad when I want to take the tissue away, or that he says "Bye Bye" at the end and of course the best part of all is that each and every "stand up" was done with only one hand!?!

Tuesday, April 19, 2011

My Journal - Week 86 (19Apr11)

Swimming continued; Walking continued & now 
- Self Standing!

A lot has been going on these past few weeks and while it's not a great excuse for not posting, one thing is for sure, I have a lot of material!

First things first, lesson three of Hunter's swimming!  Without getting overly wordy, Hunter has made wonderful little progressions that without writing about wouldn't probably be that evident to everyone else.  He's now able to put his face in the water (his head goes more than half way under water), float by only being held by the back of his head with one hand, and stand up to "jump" into the pool.  (Not really jumping, but being brought into the water from a standing position as opposed to from a seated position).  Lesson four will be this Thursday.

Part 1

Part 2

Part 3

Last weekend (16th April) we went to the Toronto Baby Show sponsored by the Babies R Us and we were lucky to get (pay for) a photo shoot of Hunter with two live bunnies!  Here are a few of the precious photos.

Cool, I have an Easter Egg!

Ah ha!  Bunny's make Easter Eggs!

Mommy, can I have this Easter Egg?

Hey, what do you mean they don't lay Easter Eggs?

Are you sure?  It seems that there are a ton of Easter Eggs here and two bunnies?!

Now I am confused.  I have eggs and these two bunnies.

Mommy, can I have some of these Easter Eggs?

Yay!  My Mommy said I can have some Eggs!

Maybe if I am good they will get me a Bunny too!?!

Humm, I wonder how good I have to be to get a Bunny for Easter....

Maybe they will just give me one since they call me Hunter Bunny?!

And I have been soooo good, I think they will want to get me a Bunny!

Onto Hunter's latest milestone.  SELF-STANDING:  Just today, (and I have been saying that this would be happening within the next few days) Hunter surprised me with his newest effort.  I was talking to a few people during the day, exclaiming how well Hunter has been walking, and running.  The only thing left to do was to get Hunter to stand up on his own without the use of any furniture.  I had been noticing that (like in all Hunter's past actions of learning) Hunter can do things that we want him to do, but convincing him that he can do them is another story.  This latest confidence issue pertained to his self standing.  I had noticed that when Hunter holds something in his hands, he forgets that he "CAN'T" do something.  And today was no different.  He concentrates so much on whatever he's holding (aka the distraction) that he does things like walk, talk or stand up by himself.  I had just mentioned to my own mother earlier in the day that all it would take for Hunter to get up without using anything furniture or walls would be for him to be distracted and be holding something else.  Sure enough, after his shower (yes, Hunter wants to take showers now, not baths...) he walked out to our bedroom, sat down in front of my laundry bin (which happened to be full of clean clothes and had a Bounce dryer sheet inside the clothes pile) pull out the dryer sheet with his left hand and used his right hand to push up from the ground to stand up.  I knew it was only a matter of "distraction" time!  I was so proud of him, clapping and telling him he did a great job, and I am sure Hunter was so confused about what I was praising him about, that likely he's made an association to pulling my dryer sheets out of my laundry bin!  There is something to be said after all about leaving your clean laundry in bins and not putting them away!  Now, it would appear that all we need is to remove all other access to cheating to stand up.  Ya, right.  Funny though, in order for Hunter to master his skills, we need to take away anything that makes it easier to do it the easier way.  This time around though, it would be extremely difficult if not impossible to remove walls, furniture and everything else he uses to get himself to a standing position.  So, I am gathering it might take him longer to realize and remember he can do it on his own.  Never the less, he did it and I saw it!  It's so rewarding.

As always, more to come!

PS -  I have created a brand new Play to Learn & Parent Support Group YMCA flyer for 2011.  See here for link to flyer:  https://acrobat.com/#d=igeBlRPgpWU1XmRPQnZ9fA

Or see actual flyer here:

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