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, March 21, 2011

My Journal - Week 82 (21Mar11)


Happy World Down syndrome Day!!  For anyone unaware of why today's date is considered World Ds Day, it's because of the arrangement of the numbers in the date.  Down syndrome or Trisomy 21 means three copies of the 21st chromosome, thus 3-21 or today's date, 21st March (21-03).

Instead of just talking about Hunter specifically, I thought I would post/share a few facts that can be found throughout my blog and are also in my sub blog pages.  Below that I have shared some insights about Hunter.

• Down syndrome is the most common chromosomal abnormality occurring 1 in every 800 births. The exact cause is unknown.
• Down syndrome is one of the leading clinical causes of delayed development in the world – it is not related to race, nationality, religion or socio-economic status.
• Approximately 80% of babies with Down syndrome are born to women under 30 years of age.
• 30% - 50% of the individuals with Down syndrome have heart defects and 8% - 12% have gastrointestinal tract abnormalities present at birth. Most of these defects are now correctable by surgery.
• There is wide variation in mental abilities, behaviour and physical development in individuals with Down syndrome. Each individual has his/her own unique personality, capabilities and talents.
• Individuals with Down syndrome benefit from loving homes, early intervention, education, appropriate medical care and positive public attitudes.
• Individuals with Down syndrome learn at different rates and benefit from inclusive classroom settings just like their peers.
• Increasingly people with Down syndrome are completing high school, gaining job skills, finding meaningful employment, pursuing post-secondary education, and getting married.
• The intentional strengthening of human connections in healthy, inclusive communities that nurture values of interdependence and practice natural forms of mutual support benefits people with Down syndrome as it does every Canadian.
• In adulthood, many persons with Down syndrome hold jobs, live independently and enjoy recreational opportunities in their communities.
• The Canadian Down Syndrome Society is a national non-profit organization dedicated to improving the lives of persons with Down syndrome.
10/24/02 - CDSS

• The correct spelling is Down syndrome. There is no apostrophe “s” (Down). The reason is because in English adding an apostrophe indicates that ownership is involved. Dr. John Langdon Down provided the first formal description of the syndrome, but he did not have Down syndrome and thus no possessive is used.  Also, the “s” in syndrome is not capitalized.
• Use person-first language. Individuals with Down syndrome are people first.  The emphasis should be on the individual, not the disability. For example; a baby/child/adult with Down syndrome, not “Down syndrome” child or “Downs baby”.
• Down syndrome is a chromosomal abnormality that is present at conception.  The term “birth defect” is not correct.
• Down syndrome is a developmental disability. People with Down syndrome usually have mild to moderate intellectual delay. The term mental retardation is considered outdated in Canada and should be avoided. The term mongoloid is considered extremely inappropriate.
• Avoid generalizing people with Down syndrome as “always loving”, “always smiling”, or “perpetually happy”. People with Down syndrome are not all alike.
The diversity of abilities and characteristics among individuals with Down syndrome can be best described as the same for the general population.
• Avoid judgmental terminology. A person with Down syndrome is not “suffering from”, “a victim of”, afflicted with” Down syndrome. Down syndrome is not a disease and these references only diminish a person’s dignity. Suggestions include “living with Down syndrome” or “has a medical condition known as Down syndrome”.
• People with Down syndrome have the same rights as everyone else and should be treated with respect.

A few days ago I touched on a topic that I would like to spend a little more time on now and in the future.  "High functioning" versus "Low Functioning".  I find it really important these days to ensure that in general people understand that Hunter's abilities are not unique or that he's some super Ds genius.  While I am super pleased about his abilities and I don't find it offensive in the least that people think Hunter is very capable and smart, I often feel compelled to explain to those who assume Hunter is so especially smart, that it's just the way it is - more specifically, "he" is!  I believe children are often a product of what we make them.  I do honestly believe that if we set goals, and expect no less than typical outcomes the reality is our children can and will achieve them.  However, it's not to say though, if a parent expects their child to be a genius that they just will be.  I think it is more about not limiting a child due to preconceptions or stereotypes.  I am sure there are parents out there who could argue that they had tried everything, that they pushed and pushed and yet their child isn't "typical" in terms of cognitive/physical development.  So rather then me mislead people by suggesting that everyone who has Ds "doesn't" have delays, I'd rather not be unrealistic by painting insanely dreamy pictures.  What I do want people to know is; that anyone who has Ds shouldn't be limited.  What that will mean in the end - is up to each person.  Just as any person in the general typical population has ranges in abilities, so to does any person with Ds.  Being able to excel cognitively doesn't start with 46 chromosomes as a prerequisite, and at the same time, it doesn't stop with 47 either.  It's interesting how we don't assign ranges to people who have typically arranged chromosomes, yet it's plainly obvious that there are broad differences in IQ in each person - not due to any chromosomal abnormality.  My newest saying and belief is, there should be no ranges when it comes to Down syndrome.
And further, I had to come to realize there is no such thing as "high functioning or low functioning" children with Down syndrome, it's only the caregivers who are either high or low functioning.  The proof has been in the pudding for years.  If you institutionalize a child, just how smart do you think they would be?  If you cultivate and educate a child, what would the answer be then?  Obviously thoughts are changing because what was acceptable 40 years ago (to never bother educating a child with Ds) has changed to realizing that today, people with Down syndrome are graduating from university.  This is not a fluke.  Nor is having a job, marriage and being a productive member of society.  So, as it stands the last pieces to ridding the world of negative stereotypes come with constant positive educating.  When people can make that leap in comprehending simple things (for example - limitations with speech or speaking clearly do not equate to being unable to function), then perhaps we will have a much clearer view of reality and expectations!

1 comment:

  1. This is one of your best articles and you should put it in your book! It was very clear and concise.


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