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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Thursday, February 3, 2011

My Journal - Week 76 (03Feb11)

Standing, Laughing, Playing... it's all so much fun!

Today we had our monthly visit from Jenn (Hunter's Early Intervention) and we wanted to see how well Hunter is doing.  As usual, he's doing excellent and the only things that we can think of to work on are the normal things like walking and speech.  One thing that is extremely consistent with Hunter is his laid back personality which leads to the sit back and take it easy strides.  It's clear that ever since Hunter was little, despite the progress he has made, if he doesn't feel confident with something - he wont attempt it.  Case and point is his walking.  This child can motor around our home in a few seconds flat using his V-Tech Train walker, and doesn't even really require it to walk.  BUT don't tell him that.  He really believes that he needs his walker to walk.  How do we know it's not true?  If ever you have watched Hunter walk, or hold onto anything, you will notice that it's simply a "crutch" for support.  If Hunter becomes distracted or busy he will completely not realize he's not even holding onto whatever he's holding - all the while continuing to walk or stand up.  The hard part of all this is convincing him he doesn't need things to assist him.  Take for instance standing.  We have caught Hunter standing up holding on to his straw cups with both hands, and not bracing anything while doing it.  As soon as he realizes that he's not actually holding anything but the cup, he immediately plops down onto his butt.  The same thing happens when it's his books or toys.  One would think then we should just distract him... well that is always the plan but he's so smart to figure it out that we have to come up with newer and newer ideas on how to keep him completely distracted.  The saddest thing is, I can't prove or show Jenn just how far he actually gets because he is literally become audience shy.  So, today after our home visit I decided to video Hunter doing what he does best... standing without paying any attention.  Next time it will be showing off the walking without the walker.... (or at least walking with my one hand - which he currently does but not on command!)

It can be puzzling for anyone who doesn't see what happens with Hunter on a regular basis.  To wonder perhaps why he isn't walking or doing something else but the truth of the matter is when we catch him actually having balance when he's distracted only goes to prove that he is quite capable of using it for walking.  It's actually amazing that he has fooled himself into believing he can't do it, when we have seen him do it.  An example of this is when we watch him with the walker, walking with literally a finger on his train and then remove the train and hold his hand and see him miraculously turn into a non-walking boy!  All we can do is find other ways to help him gain his confidence.  Jenn has recommended removing the train (and I completely agree) and forcing him to walk with things (such as a tea-towel or hula-hoop) that will make him use his balance but fool him into thinking it's all the other items.  As for the talking??  Well when the body is focusing on Gross motor skills such as walking, speech can take a natural back seat.  I am not worried at all about this because I know Hunter is still working on talking with his sometimes "one-time" words and his newest word "ADAT or AT" which is what he calls each and every cat he sees... be it in book, TV or for real - not to mention we have four in our home.

So for now, here are a few clips we took tonight which I thought were just simply great.  Not only is he standing on his own, but he's laughing, playing and actually says "Bye-Bye" at the end of it all.

Part One 
It was quite the plan to figure out what to use to distract this boy so that he would forget that he was actually able to stand up all by himself unassisted.  But just when you think he's forgotten, he quickly remembers and plops back down!

Part Two
Here Hunter is less distracted and while still standing, he's having a bit more fun now that he's figured out that it's not all about standing!

Part Three
Standing has obviously become more of a chore but sometimes it's just more funny to laugh and play!  How about making Mommy and Daddy laugh... and even a "bye-bye" at the end to finish it off.

So for now, we are just trying to come with all kinds of newer ideas, staying one step ahead of Hunter in order to distract him.  Crazy thing is, he catches on so fast that we have to change "ideas" everyday.  No worries here, we know he can do it, it's all just a matter of time.

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