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, March 31, 2011

My Journal - Week 83 (31Mar11)

And Fun Video Clips of Hunter Walking, plus other photos!

One great thing (that I talk about over and over) is the wonderful motivation a child gets when he or she is able to see another child doing things that the observer has yet to do or try or perhaps was once unwilling to try.  I have spoken at length about why all inclusiveness is key and a necessity for children with special needs or any kind of developmental delay.  I have also mentioned that the proof has always been in the pudding, not just in medical studies or opinion.  I have seen (at various stages of Hunter's development) the benefit of having Hunter see and interact with typically developing children his own age or older.  Just this past weekend Hunter had the wonderful opportunity to see and play with his cousin who just about his age (shy 3 months) but just walking, and further was also able to meet a three year old very sweet girl who happens to have Down syndrome, who also was running circles around Hunter.  Hunter has always been very good with interacting with his peers, friends and family, whether his own age or not.  On the weekend, during play with his cousin, Hunter had a terrific time playing, chasing, talking and subsequently learning - more than we knew.  While Hunter had taken his very first steps back in the beginning of February (at 17 months), the walking had not quite yet cultivated into proper walking and despite our attempts to "push" him to take those steps more often or better, he seemed to flat out refuse with his typical nonchalant attitude, "been there done that" or, "did it once, why do it again?".  All until, seeing other babies and friends, "WALKING".  Since Sunday, Hunter has been walking up a storm, literally.  It's no longer hard to get a video, nor is it a challenge to get him to do it.

Today, Hunter's Early Intervention Consultant (Jenn) was over for a monthly assessment, which in recent times has become a major effort to get Hunter to "show off".  Once upon a time, showing off was the norm.  Until, today.  Hunter decided to break free of his recent "shyness" and perform once again like the little trooper he used to be.  For over 45 minutes straight, Hunter showed Jenn - task after task, mastering each item, moving on and demonstrating that he is in no way "delayed".  His cognitive abilities seem to be (for the majority of tasks) right at 19 months, with a few past his age and in the 21 month range.  It's no wonder that the area he excels in is his vocal and environmental recognition skills - blame Mommy and Daddy...!  Many of his gross motor skills are in the 18 month and over range such as climbing 13 stairs to the top, and stepping down (only one step), not to mention the walking.  It's hard not to be proud, even if the things he achieves are the "norm" for others and "typical", knowing fair well that it's expected that he may have delays.  For parents of a child with Down syndrome (and other special needs), every step is precious, every milestone is treasured.  Every assessment is a time where we as parents might suffer a bit of stress - wondering many different things, and sometimes the same old things.  Whether we realize it or not, we may hold our breath wondering if your child has delays and how (if anything) something can be worked on to help him meet or get to those goals.  And sometimes we are met with news or information that we might not expect - positive or not.  For example, until there is news that we consider "good" news, we might think to ourselves - have we done enough?  Could we have done more?  Often for us personally, we are pleasantly surprised, despite the worry.  When there is a fear that maybe he might have a delay in an area, we argue with ourselves that we "should" have done more.  Truthfully, what we have to remember is, (as a parent of a child with Down syndrome) if our child did not have Down syndrome and didn't meet a milestone according to a "chart" of some sort, it would not be a question.  It would be a matter of, "every child meets their milestones when they are ready", and nothing more.  So, it's important for me to remind myself and other parents, to "FORGET" the milestone charts (despite the reality of it being nearly impossible) and just relish them as they come, without question or conflict.  More thinking like our child is "typical', less about Down syndrome.  I think it's well established that thinking "Typical" can often equal being "Typical" - because truthfully, what's to stop us from thinking that way (especially when outside influences are removed)?
So for now, we need to concentrate on the here and now.  At this stage, our son is just fine and wonderfully typical.  I will not be worried about tomorrow being negative (or rather the possibility of negativity).  We know each day, we take as it comes, but we also work like there's nothing stopping us from doing "everything" that "everyone" else does.

Enjoy the short but fun clips... but I have to say, the best is definitely the last one!  And see below for photos.

Part 1

Part 2

Part 3

Part 4

Part 5

Part 6

And finally, some perfectly, absolutely adorable recent photos including some of Hunter and his newest girlfriend, at YMCA play to Learn for Kids with Special Needs!

Me & My best buddy Vaun at the Durham Ds Association Meeting

Look at me!  My Mommy & Daddy took me swinging!

Yep, I love swings.  Hey - Don't you love my outfit?  Matching sweater & socks!

My Daddy makes me giggle so much when I swing!

I keep telling Daddy to go higher, but Mommy said no!  I can take it though!

Nothing like swinging.  I bet you want to try with me - you know you wanna!!

This is my new girl friend Lexi!  She loves to give me kisses!

I'm playing shy, but I give good hugs too.

My Mommy taught me to be a gentle-boy.  Can I get your seat Miss??

I think she's independent, she said "no!".  I'm confused!

Well, I'll wait here at the "oatmeal" box for her... maybe she'll notice me now?

Looks like it worked!  Now she's playing with me!  Finally!

Ahhh!  It did work!  I am getting hugs again!  I must have done well.

My Mommy told me share my Puffs.  I gave them to her Mom.  Maybe I'll get one?

Looks like being patient works.  Two for Lexi, one for me!!

My friend Lexi is so nice, she helped to give me my Puffs to eat!

1 comment:

  1. Well, you were a nice friend to Lexi and Vaun. Keep it boy you will be a good guy on the future. And you have a nice video clips.


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