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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Sunday, November 13, 2011

My Journal - Week 117 (13Nov11)

This Sunday was ALL about "DDSA" Speech!


Speech is a very integral part of life and having Down syndrome can sometimes complicate speech in various ways.  Delays in speech are often one of the the most troublesome problems for many youngsters with Ds and other times, hearing issues and as well as low muscle tone can complicate speech further. 

We (the DDSA - Durham Down syndrome Association) decided to create another partnership event (our 2nd one) with our local speech pathologist to provide free Speech Assessments as a service to our Association members with further sessions at 50% off (paid for by the DDSA).  Jill Clements-Baartman is the Owner of TLC (Talking Language Communication) and she is a dedicated Speech Language Pathologist.  She has also been Hunter's "speech path" since he was about 18 months old. 

When we first learned about Jill, we decided to take Hunter to see her for an initial assessment to see where he was with "language".  At that assessment, Hunter was doing great and did not need any additional services in terms of speech but I knew that we should definitely re-visit that area again for a future follow up assessment after he turned two.  With this partnership we had created through the Association (making "speech" a priority event for our members) I decided to take advantage of the very same service we put together and get a new "FREE" assessment for Hunter.  Turns out, we are still on track, falling in the ranges of what is considered typical in terms of speech for our son. 

Even BabyCentre advises parents not to panic if their toddler (aged two) isn't speaking the way other children are, charts or people in general think they should.
BabyCentre says:
"Don't rush to consult a speech therapist if you have no idea what your 2-year-old is saying half the time (or if you understand perfectly, but Grandma and the babysitter are baffled). Speaking involves a lot of coordination. Kids this age commonly lisp, stutter, and mumble. But certain speech problems are considered red flags. If your child never imitates your words or speech patterns or drops particular consonants consistently, mention it to her doctor. " 

EVERY child is different when it comes to language, expressive language and communication.  It is important not to panic and to know when one should have their child assessed and also if there are obvious delays with language.  Things to consider are, is the child mimicking language and sounds?  Is he or she expressive?  Is he or she communicating needs in other ways?  Is your child using more or different consonants and vowels as time goes on?  Is there an obvious and excessive amount of frustration in your child due to lack of language?  Ranges are normal and obvious in the general population, as they are within the Down syndrome community.  Parents have to remember, their child will talk - it's only a matter of time.  I believe "How" they talk is what parents should focus on rather than "when".  To me, pronunciation and building vocabulary should be more important than worrying about how quickly their child starts speaking with more than one or two word combinations.  As well, it's key that we don't frustrate our children (and ourselves) with trying to push language in a way that is counter-productive and possibly hindering.

Here is how our DDSA assessment went during "fun time":
(We went together with my Girlfriend Penny and her Son Vaun who also has Ds)

I'm waiting for my teacher Ms. Jill!





I've been here before and we had a blast!




Some fun  and colourful cards for me to see before we go in.




Since my Buddy Vaun is with me we get the BIG room!




Look at me!  I'm a STUDENT!




Uhhh, I wonder what that is up there?!  (A Toy Holder)




Hey Vaun, let me show you how it's done!




Yes!  That's it!  Let's make music!




What on earth is this thing?! It rolls and makes sounds....




Time to put away the toys for the day.




Ms Jill is talking to us, helping us to learn!




I'll show Vaun his belly - I can teach too!




They all are lying down!  Maybe I should lie down too?!




I'm getting good-bye kisses from Ms. Jill!




And I'm giving Ms. Jill a good-bye kiss back!




Thursday, November 3, 2011

My Journal - Week 115 (03Nov11)

Down syndrome Awareness (week) is about Educating.

I usually spend my spare time (and other time) teaching and educating those who want to know about Down syndrome.  With this first week of November, it was very important to me to do that little bit extra in terms of "educating".  So, with it being a week of Awareness, I was very flattered when Dr. Meghann Lloyd (Asst. Professor) of the University of Ontario Institute of Technology asked me to present and teach to her 4th year university students taking a course called "Motor Behaviour and Developmental Disabilities" through the Health Sciences Faculty.

I spent 2 hours talking to her 4th year students about everything relating to and about Down syndrome.  These students (for all intents and purposes) will be working in the health care industry in one respect or another.  Either, working on Doctorates, Nursing, or Clinical Health applications such as Kinesiology. 

Together with Hunter (and John) our presentation was a huge success!  I believe that having Hunter there brings a type of realness to the presentation that would have otherwise not have been there and just been a "talk".  Everything went so well that I have been asked to present every year (for the same course) at their University.  Interestingly I have also been asked to teach at the University of Toronto by my Family Physician Dr. D. Mark who happens to be a Medical Board Director as well as a Teaching Physician. 

I thoroughly enjoyed teaching that morning - Teaching was an original career choice when I went to University so long ago.  Now it would seem I am just teaching where ever I go or work!

I am educating a different crowd (future health care practitioners) and it is my hope that in doing so, it will break barriers and also prevent misguided and often prejudicial information to the people who need it most - patients and new parents.


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