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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Wednesday, September 29, 2010

My Journal - Week 58 (29Sep10)

DOWN SYNDROME AWARENESS/ADVOCATE MAGNET

NOW IN STOCK....

Ds Awareness/Advocate Magnet:  $8.00 CAD Each
Note:
  • The Magnet dimension is 8in x 4in
  • The centre of the ribbon has a "kiss cut" meaning it can be punched out for a cool pie shaped secondary magnet
  • The price of the magnet is $8.00 CAD each.  (Shipping is extra)


I have received the shipment from my manufacturer of my newly designed Down syndrome Awareness/Advocate car ribbon magnet.

Anyone can order a magnet through this blog using PayPal.  Visit the "Sandi's Publication Page" to see the magnet and other available products to order.  Coming soon, orders can also be made through my new website:  http://welcometoourhouse-ds.com

We have stuck a magnet on each car in our household!  We are proud to show the world:  We are Down syndrome Advocates.  I hope that you will share in our method of promoting Down syndrome awareness.


Tuesday, September 28, 2010

My Journal - Week 58 (28Sep10)

CONGRESS ELIMINATES "R-WORD" - just in time for Hunter...

According to CNN's blog website: http://pagingdrgupta.blogs.cnn.com/2010/09/27/congress-eliminates-the-r-word/ .


"And now, it’s a step closer to elimination from the federal government language.
The House of Representatives approved a bill that eliminates the use of the words “retarded” and “retardation” in health, education and labor laws.
The bill changes the terms from “mental retardation” to “intellectual disability” and “mentally retarded individual” to “individual with an intellectual disability.” This shift would make it more consistent with the language already used by the Centers for Disease Control and Prevention, the United Nations, and the White House." - CNNhealth.com Writer/Producer

I decided with the onset of Hunter's watching wordy commercials with bright colours and fancy tunes that it was time for us to deploy one of my purchases, "Your Baby Can Read" - a program designed to teach babies to read using words, pictures and sounds.  Using a multi level approach.  The first time I played the starter DVD, Hunter watched the whole thing.  I was completely pleased with the presentation and style of the product.  I have no doubt that the system will work, providing I am able to follow the schedule that the program outlines.  The whole reasoning behind the product makes complete sense.  The important fact is, it's only good if Hunter will watch it and so far he seems to like it.  (We are only on day two though.)

I am posting some photos I took of Hunter watching the DVD today.  I am no doctor or scientist, but it's apparent that Hunter knows exactly what the word "Wave" and "Nose" mean....  I have to take responsibility for those however, I made it a point to teach him those two words over and over in the last few months.  It's no wonder he understood them when they were said on the screen!

This is the new program Mommy bought me to watch!
It's called, "Your Baby Can Read!"
Daddy is holding me and helping me to "read".
After the word they show me what it means! 
I think this is so neat!  I am learning a lot of words from this first DVD.
I think I know this word!  I usually say "Baba" when I see a baby!
And look!  There is a "baba"!  I am so smart!
There is a lot of different words for me to learn.
It even sings my favourite song, Twinkle Twinkle Little Star!
Lots of repetition helps my mind to learn!
And lots of pictures of Babies!
Before this, I didn't even know what a "Gorilla" was!
Now I know!
I love "clapping"!
And see?  They showed me a Gorilla clapping and I can do it too, all by myself!
Now the only thing is, I have been waving toward myself (with my left hand) lately!
Mommy & Daddy help me with this one... "Arm's up".
And I have to learn to put my "Arms Down"!
But so long as we can "clap", it's my favourite!
I do such a good job with "Clapping"! 
AND, because Hunter got a hair cut yesterday, (and yes - it was still somewhat of a disaster...) I am posting the outcome.  I did initially think that it was going to go alright since the first two minutes of using the shears Hunter was really good and happy.  It was a false sense of security though, because after those first quiet two minutes, all heck broke loose and the tears and a "scared" Hunter returned.  I managed to finish despite his being so upset and thrashing wildly about.  Thank goodness they are shears and not much can go wrong.... I think he looks very sweet and handsome.  It would also seem that since he has lost about 10 pounds of hair, that he looks like he lost the same in body weight!  Removing all that hair makes his face look so thin now!  Here are some cutie pie photos after the hair cut.

"What do you say about this Mommy?!!"  "I mean, where did my hair go?"
I am not even sure what to say...  But if you think I look good then it's okay.
I am starting to agree.  I think I look like a cool dude.

Ah ha!  Fooled you!  I know I am one handsome looking baby boy!

Friday, September 24, 2010

My Journal - Week 57 (24Sep10)

Birthday presents & PRO Basketball All Star in the making....

Today (the 23rd) was my birthday - and it had been a fantastic day.  My day started off with a visit from Jenn (Hunter's EI) who was here to do a small evaluation on Hunter's progress to date.  I always enjoy these visits because I am not worried about Hunter being behind or unable to accomplish milestones.  If Hunter was ever behind or delayed - I take the opportunity to learn what it is that I can help him with.  We have been very lucky indeed that Hunter hasn't had many obstacles that required a great deal of concern.  Everything that he is to do, he has either done or learned.  I never look at Hunter's development from a Down syndrome perspective.  I embrace the fact that Hunter (Down syndrome or not) will develop when he can and when he is ready to, which to me is and should be no different then any other child.  Perhaps it might be easy for me to think this way because he is my first child and with that, I do not have preconceived expectations.  But I think in all fairness and honestly, I just know and realize that each and every child does develop at their own pace, 46 or 47 chromosomes.  It matters not to me how fast or why it doesn't happen all together if it doesn't.  To me, it's just the way it is.
I do smile at the fact that people tell me their stories - such as my "sister" (cousin as adopted sister) who recently reminded me that her son did not walk until he was 21 months old.  My other cousin, did not walk until 20 months either and he's a doctor today.  In both these cases, they have the typical 46 chromosomes.  If not for the fact that I walked at around 10 months, I would probably have just thought that walking at 20 months was actually the norm!   I learned long ago (even before Hunter and Down syndrome) that milestone charts and the like, are actually precursors to stereotypes.  Yes, professionally there are reasons for them - but as far as in the home for comparative use, I have no "use" for them.  However, don't get me wrong - I love to cheer, clap and praise Hunter when he meets or makes a milestone!  That to me is what is important, not the comparing or pointing out that my child did it first or better then someone else's child.  I am simply happy that my son did it for himself.  Again, that is what is important and what I celebrate!!

With all that in mind, Jenn got her dose of Hunter today and he was mostly all smiles for her.  (He was hungry though, and no amount of love for anyone can put hunger out of one's mind).  He showed his standing, his stepping/walking, his (not so great) balance - we are working on that.  And his favourite ball play.  Our suggestion for Hunter's balance is to hold his legs by the knees, (force him to use his core to balance), allow him to stand on our legs while in our laps, (wobbly encourages balance too).  More rough housing with Daddy (airplanes etc.) and stepping onto and over pillow mountains!  All of these are great ways to encourage balance.

I have to brag about Hunter's latest trick - (and I had not posted about this because it happened on the 22nd September a couple of days ago) Since Hunter decided that he is once again confident in pulling up on the furniture again (had taken a bit of a break on the independent pulling up) he has been cruising the furniture as well as holding on with one hand.  The other day, he tried this with one of our storage poofs (box benches) and the poof started moving away from him because he was facing it and ultimately pushing against it.  I thought to myself (since Hunter was facing the poof) as it was moving away from him, he was going to do a face plant within seconds.  But to my surprise, as the poof moved away from him along the hardwood floor, he stepped toward it to keep up with it.  He took at least 3 to 4 steps with it - all on his own.  I was actually too far away to be of any use, should he have not decided to step forward with it.  I was holding my breath, (while cursing for not being closer) and nearly paralyzed with fear.  I could not believe my eyes.  Hunter took his first few steps assisted (like using a walker) but unassisted by human hands.  What do you say to that?!  I knew that I couldn't say much at the time, I didn't want to scare him!  (Inside however, I was jumping up and down!!)  Next thing I know I will be telling everyone how he is walking without my help - can you imagine?!

Onto just a few moments ago.  I figured, one last fun game before bed - with hopes of tiring him out.  We had come home from dinner out and as usual, Hunter was all wound up.  I sat down with him (of course everyone else was in bed) to settle him down.  I noticed that he was trying to pull up on his basketball hoop but since it isn't meant for pulling up on, I figured I would show him how to put the ball into the hoop.  The light switch sort of popped on in my head since I noticed that during Hunter's assessment with Jenn, she wanted to see if he would sort some play pegs into their shapes, but he would have no part of it.  I wanted to see if Hunter would actually "sort" the basketball into its hoop.  I figured that I could get him to "sort" and work it out in his mind from a different angle.  Playing basketball is a fun way to sort!  Ball into circular hoop.  Worked for me in my head!  So, I showed him a couple of times (and this boy loves to play with balls, so I figured this shouldn't be too hard to compute) and he was definitely excited and interested.  I handed him the ball and just like that, my son "sorted".  How proud do you think I am now??!!  Take a look at the videos below.  Hunter had done about 10 baskets before I actually moved fast enough to get the video camera out, but I did manage to get some of them on camcorder.  I hope that you enjoy this as much as I did.  I know that for me, it was probably much more rewarding simply because I didn't know that he would or could do it after only seeing it a few times before hand.  But, I am guessing that it will make you at least smile.



Talk about a great birthday present. Not for Hunter, for me! For my birthday it seems that Hunter was able to give me the gift of comprehension! And what a fantastic gift he gave to me.
After I showed him what to do with the ball, he promptly demonstrated that he could do it himself for me.
All star Hunter. Pro basketball all the way!! I am so proud - yet again!



Do you see how much fun this boy is having?!!  I wish I could find that much happiness in the small things!  I love that it made him so happy - never mind me!  Thank goodness when he was finished playing he opted to go to bed shortly after that.

NOW, before I forget (this is definitely one packed post) - here are a few photos of tonight's birthday dinner.  But of course.  Enjoy!

Mommy has just gotten her free brownie cake & sparkler... Wow, look at the sparkle!
This is Mommy's parents.  My Grandpa and Grandma!  They took Mommy out to dinner!
Mommy, there will be no tickling of me even on your birthday!
What do you think?  Do you think I am handsome?  Mommy thinks so!
Hey?  Is that cake?  Can I have some??!!  I wish it were my birthday again!
Thank goodness Mommy loves to share with me!  This is the first time I tasted chocolate!
Wow!  No wonder everyone loves chocolate!  It's really good!  Right Daddy?
Look at my Mommy & Daddy.  Don't they look happy?  I think they are!
This is me and my Daddy!  I love my Daddy so very much.  I look just like my Daddy!
Daddy, you are so much fun!  I love to play with you!  I am going to get your hat....
I think you would look better without your hat... Humm, can I take it off?
I know I can get this hat off.  And when I do... I will see what's under there!
I know my Daddy is thinking "Hunter... not my hat" But I'll get it off it's the last thing I do!
See!  I knew I would get Daddy's hat off!  And look at all this hair!  I will pet you Daddy!
We sang for Mommy's birthday and I clapped!  Yay for my Mommy!
Mommy!  I am going to give you a birthday kiss.... get ready!
Here I come... are you ready Mommy??  I am perfecting this making sure it's just right....
Muhaaaaa!  I give you a HUGE birthday Kissy!  I love you Mommy!
And our server was so nice - she told me all about her nephew!  I bet he's a cool dude like me!
AND - because I didn't get a chance to post these on Wednesday...

This is my Uncle Richard & Aunty Catherine from England!  I love them so much!
There is a reason why great Nanny's are English!  Aunty Catherine was so amazing with me!
Hummm, (thoughtful moment) I think my Uncle Richard looks like Grandma!
Unfortunately the week is over &  I am sad to see them go.  Even Twiggy cat says bye-bye!

And finally....

Playgroup update:

Just a quick note (which I will elaborate on further tomorrow), I believe my playgroup opening will be postponed until the week of the 26th.  We have been having a bit of a delay getting our flyer completed and out to all the families.  The original date (19th October) I posted was a tentative date and had yet to be firmed up.  At this point (Jenn, myself and Angela at the YMCA) we discussed the likeliness of being ready for the 19th and I hate to say we think it will probably be the following week.  Boo!  I was really hoping to have this started as soon as possible but we want this to be perfect when it opens.   I will definitely post an update tomorrow or as soon as I can, after I look over the flyer details that the YMCA sent to me.

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