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, December 6, 2010

My Journal - Week 68 (06Dec10)

A GREAT GIFT IDEA FOR DEVELOPMENT!!!!
What YOU might want to put on that Christmas list!!

This post is really about Hunter, even though it might initially sound like it was purely about myself.  I made a purchase on Friday but it was not only for myself (even if when you hear what it is, you might not think so....).  I decided after a few years of hearing about iPods and the newer iPad by Apple to do some personal research about them.  I had no idea the capability and power that these items had and would have.  When I heard the name iPod, my thoughts originally pointed to a sophisticated MP3 player and not much more.  I never bothered to investigate what else they could do since I myself already had a personal MP3 player which I rarely use.  My tune started to change when my best friend continuously showed me day after day what his iPhone Touch was capable of doing with all the applications that he had on it.  So, with my interest peeked I figured it was time to speak to someone who I know uses his iTouch gadget daily, for business purposes - my family doctor, Dr. Mark.  After speaking with my Doctor (who advocates and uses and has both the iPod Touch and iPad) my mind was made up to purchase an iPod Touch.  This device looks exactly like the iPhone and does pretty much everything that the newest iPhone Touch does, minus have a phone (which I do not need since I have a Blackberry Mic phone).  I was all set to go out and purchase this iTouch iPod thingy when later on that same afternoon (and very conveniently) I had the wonderful opportunity to speak with the APPLE Integrated Technologist IP language programmer who works directly with the software and Operating Systems for both iPod and iPads.  I spoke with him about my earlier dilemma and asked him if I had made the right choice given the reasons and what I wanted out of the product.  He diligently and patiently explained the features of both items and asked me what I specifically was going to use the product for.  He advised that my needs directed me toward the iPad and not the smaller iTouch iPod.  For those of you who have no idea what I am talking about, it's okay - I really had no idea either... despite my computer savvy technical prowess.  These devices allow you to work with a small sized (phone like or lap pad) in the same way you would a computer.  They have Internet capabilities, camera, email, photo, accessories and most importantly a whole wide world of applications - that I had no idea existed in the way that they do.

My main reasons for investigating and then purchasing these devices were to allow me to use them for Down syndrome advocating and awareness, along with any ventures that I attend such as Conferences, shows or for the Support Groups I run.  What I had no idea of until I got home was the wonderful world and impact it would have for my son.  At the end of the day, I purchased both devices and while it may sound self indulgent, it wasn't and I will explain why.

HOW the iPAD and iTOUCH help Hunter:

When I was in the store, I received the extra technical staff advice from a non-commissioned staff member who knew and actually owned both the iPod/iPad products.  The staff explained every single detail of use that I couldn't even imagine, and then some more.  While these items are great for Mommy and Daddy whether for business or pleasure, what they additionally also do for Hunter was the unexpected amazing surprise.

After getting home from purchasing both items I decided to browse the iTunes application store, which is a wonderfully (I would have said little but it is far from little) jam packed huge application site online.  There are applications for everything and anything you can think of which range from FREE to around $30.00. (The $30 is an unusual price since the majority of apps seem to cost 0.99 cents) depending on what you are looking for.  I must say though, nearly everything available has a free version (which fully works and is just "lighter") then the full version.  When I started searching, I knew of one application that I had wanted for over two years that I had heard so much about from one of the Ds Forums I run on MedHelp.  The application deals with Pregnancy and so while reviewing/searching for other pregnancy and baby related applications, I stumbled across several applications designed just for babies!  To give you an idea, there are at least 200 applications specifically for babies, if not more and at least 1/3 of them are free or have a light version.  I downloaded at least 20 of them immediately to try them out.  Once I got a taste of "baby applications", I was obsessed like a crazy woman!  I spent about an hour grabbing as many applications that I figured would be beneficial for Hunter.  To give you an idea of what's out there (for free) - The applications range from Baby Flash Cards for learning words, colours and animals, to spelling and other educations such as math or sounds, to playing piano and music.  As soon as I tried these various applications out on Hunter, he was happy and delirious with excitement, right away!  The iPads and iPods are touch screen operating systems which allow even BABY to touch and experience learning in such a fantastic way.  This device allows my son to directly interact with feel, sound and sight.  He is learning and having a tremendous amount of fun doing it.  My first example of it's use outside of the house was by accident on Sunday when we had to go out to the store and in our rush we forgot to give Hunter a toy to play with in his Stroller.  So, while John was busy getting a bite to eat and I had Hunter, I took out the smaller iPod iTouch which has nearly the same exact capabilities as it's larger sister the iPad and allowed Hunter to play his educational learning games on it.  Despite the screen being smaller, (I had to hold it for him) he still managed to pick the various animals he wanted to see and hear from an application called "Sound Touch lite".  This kept him happy, content and learning during a busy time of having to wait while out shopping and running errands.  To give you some other examples of some of the applications he has (and he has two different categories I made for him "Educational" and "Learning Games") I have downloaded "Rattle", "Sound Touch", "Piano Palls", "Baby Cards", "Flash Cards", "Colour Match", "My First Words", "ABC's & Animals" just to name a few.

I further decided to check out the applications store to see if there were any actual apps for Down syndrome (or under that heading) and while there wasn't much I did find some good things like "growth charts", "medical applications to store info for the doctors visits", and one very important application which I feel is great for any parent who has a child who isn't vocal or has difficulty with communication called, "Tap to Talk".  This application allows by picture and word for a child to press to communicate.  The free version, while it has limits in the amount of areas to tap, allows a non verbal child to let you know that they want something from the areas of meals, play, grooming, go, drink, emotion, and bathroom.  Each area of communication has single pictures that define either a single word or a short sentence such as, "I am hungry please" or "I would like a snack please."  I know that many parents who have children who have limited communication rely on methods like this to speak with their child or for their child to speak to them.  I felt that this application was ingenious in that it allows for the child (younger or not) to communicate pretty independently which can give them a sense of personal accomplishment and ease.  This is just one example of how this system can work to help a family with a child who might have special needs. 

Now, I realize that many people might be thinking, is Sandi kidding?  Doesn't she realize not everyone has the money to spend on such things?  Of the many things I try to do here on my blog is to pass on good resourceful information that can be used or obtained by just about anyone.  These devices are no exception.  Having a child with special needs does often entitle you or your family to get things that will help your child live a life that is typical.  In Canada and the USA many parts of your Income Tax, (in the area of Disability Tax Credits) allow for you to write off personal expenses which are incurred to help your child with Development.  For example in Canada, any item which will be used for the personal development (that can be proven either by medical need or intervention for development, ie learning tools) can be used as a Disability write off toward your income tax.  For more clarification and what is allowed, please speak with or consult with an accountant or specialist in this area before purchasing any items.  But most often, so long as the need can be proven and you maintain your receipts, (you can use an accountant such as H&R Block as an example to help with doing these) you should be able to get the money back at tax time.  So, while the cost might be upfront and out of pocket for a period of time, the thing is that often it can be recuperated at tax time.  While this isn't my ideal way of purchasing the things I want for Hunter's development, it certainly makes me feel better knowing that some/most of the costs or expenses that I additionally put out for his betterment/development can be recuperated.

Getting back to the product itself and its applications, all I can say is when searching for applications, just like searching the Internet, the more creative you are with your search, the better your results will be.  Searching for Down syndrome might only yield 3 applications but searching topics like, "developmental applications" or "learning" or more specific like "speech tools" or "sensory applications" will also yield different and more results.  And back to basics for things that might be helpful such as "medical" or "genetics" and things like specific helpful tools for yourself or child like, "growth charts" or "Vaccination keeper" and "Medical records or reports" can also be helpful.  AND, yes other then applications these devices also have several utility applications such as the everyday calculator to a personal level for hanging pictures!  There are several navigation applications to help you find your local branches ATM, favourite restaurant or even the various movie theatres.  Of course there are the many games and entertainment, but there are many e-books, magazines for those who like me don't play video games on these things.  If movies are your thing, you can choose from every movie out there or something called Pod-Casts, for different TV or other style short episodes.  My point is, it would seem that the i-World is limitless for now!  I can even turn my iPad into a remote system for accessing my home computer, or use it to turn on the various electrical equipments in my home.  If you can't believe that one, believe it.  What you thought was only limited to the television and movie world of Star Trek (my all time favourite TV shows and movies) is now reality.

So, what's the cost of these things?  While I am sure you could get them for less either on eBay or Kijiji for example, the actual retail pricing depends on the memory size of each unit ranges.  For example an iTouch iPod (non phone) 8 gigabyte is $249.99 to 64 gigabyte at $429.99 and a 32 gigabyte in between.  The iPad (the larger tablet) also ranges depending on size of memory with the lowest model 16 gig at $549.99 to the highest 64 gig WiFi & 3G version at $879.99.  Yes, they are quite pricey however I guess you have to realize (which I did not at first) that they are small compact complete computers that you could literally put into your pocket.  So, if these products are not realistic for you to purchase at the moment, I would certainly say they make a great idea of what one could ask, for Christmas.  Collectively if you have a group of family members struggling with what to buy for you or your child, why not let them know that you are wanting to purchase something like this for Christmas or a Birthday and gift-cards for the store that carries these products would be a great way to help you get this.  Certainly unless you have an extremely wonderful doting grandparent of your child who would buy one of these devices just because, most of us have to pool our resources together to get things like this.  So, a few gift-cards would probably go along way to help toward getting one.  It makes a great item for that "wish list".


Image of iPad:

Senses what direction you hold it and turns the image/application for you for convenience.
Image of iTouch iPod:

Also rotates and can flip to a sideways or landscape view for applications or video.

PS - One last thing I wanted to mention on this topic.... I discovered that the Internet Browser "Safari" which is specific to Apple, while perfectly functional like any other browser for Internet exploring - Doesn't support "Flash/Java" on either product.  What does this mean?  Nothing really that can't be overcome, but I had no idea that "Safari" users who are on either the iPad or iTouch do NOT get to see my wonderful background on my blog.  While they can read everything and see all the images and video, (which is the most important content within my blog) I had no idea that those few users who view my blog through these devices can not see my lovely constructed and designed background.  I may actually work on changing my blog background so that everyone can see a pleasing background image, but as I mentioned - there are many applications out there in the iTunes application store that I can try (for 0.99 cents) which would allow me to see "flash" and more specifically my background in my blog.  Not sure I will spend it to see my own background, but knowing that some people out there using iPod/Pad to see my blog don't get to experience the full effect of my site, makes me - well, sad!  So, I am considering a background change in the near future.

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