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, October 18, 2010

My Journal - Week 61 (18Oct10)

ADVOCATING TOGETHER AT THE 8th ANNUAL Down syndrome CONFERENCE!

I wanted to post about this yesterday but some other more immediate news in my life took a bit of the spot light!  Today however, I want to spend the time talking about the Down syndrome Conference that I attended with my Hubby John and Hunter.  (Even Grandma and Grandpa attended on Saturday to assist me with the booth which enabled me to physically attend one of the seminars which was outside of the large conference room).

Originally, I had only intended to attend the Down syndrome Association of Ontario to learn and meet the families in and around Ontario.  As time went on, (after publishing my books) I made the decision to attend the conference as both a guest and as a vendor.  As hard as this was - it was a huge success!  I obtained all the information that I could regarding having a booth at the conference to make my book, "I Have Down syndrome, What Does That Mean?" available for sale.  I am very happy to say, it was a very good decision for me to promote my book at the event despite not wanting to push it onto people.  I wanted people to know that my book is out there as a resource.  I was less interested in "making money" as opposed to educating and being able to provide parents with a way to "educate" their child, other children and even their friends.  Not only did I sell many books, but I was able to make so many wonderful connections and friends because of it.  Without having the book there to talk about and explain, I probably would have made friends but I doubt I would have had the chance to make as many as I was able to by having the book there.

The conference was very good for families as a whole.  I know there were many parents there who were unable to bring their children but for those who were able to bring their spouse or partner, I think it provided an aspect to learning that otherwise might not have happened.  Often Mom's are very involved (naturally) in their children's lives and also with Down syndrome.  Mom's tend to also "naturally" become the teachers and advocates.  It is not to say that the Fathers are not as strong with the education aspect or the Advocating, but being involved in a conference allowed those same partners to meet and make connections of their own that otherwise they would not have been able to do as easily.

The conference had six separate workshops but due to time constraints each person who attended the conference was only able to attend three.  The choices on workshops were developed and presented based on age of the child.  There were workshops geared and directed for the infant to toddler years, the older child who would be dealing with every day life issues (sexuality, relationships etc.) or preparing for life after school years, and lastly preparing for the future - Wills, Trusts and when we are gone.  I wished I were able to attend each and every single workshop seminar but unfortunately there were only three available to each person.  I hope, knowing that I will be attending every conference in future, the seminars that I was unable to attend will be presented sometime in future for me to see.

The first workshop was presented by a Doctor who specialized in development of children with Down syndrome.  The details of the seminar began with the typical milestone charts - ages, averages and ranges.  The doctor spoke mostly about studies and statistics which were relevant to the topics but I found that entire focus of the seminar was to prove and present how Early Intervention and School/Classroom with TOTAL inclusion within the last 20 years to present has changed in each aspect itself, and also how it's benefited the child with Ds today.  She showed us charts and statistics that prove that changes in education due to EI and Inclusion have completely moved the majority of children who have Ds into an area of cognitive intelligence that is now mostly at par with "typically arranged chromosomed children".  From a personal perspective, I was able to present questions to this doctor regarding what to do for Hunter's educational future.  Since I took this seminar to be one that was completely statistical, I was curious to know if there were any studies that showed it to be beneficial to enrol a child with Ds into a pre-school/daycare/Montessori program before "school" (JK/SK) and what the actual result would be, as opposed to educating your child on your own at home.  The answer was, studies have proven and shown that having a child enrolled into a play-school, preschool, daycare program that has a learning component prior to JK (for at least one year minimum before JK) is extremely beneficial and continues to be beneficial until even well into their teen age years (15 yrs).  Also, other parents asked other questions such as if it was better to home-school (or special education classes) versus regular all inclusive schooling, and the studies showed that regular classroom setting school was definitely more beneficial in the all years (early years and long term) - and the proof focused on the socialization and also the actual education and learning aspect.  The reason is, in regular classroom settings, the expectation of learning is higher.  The resources are better and are more available and the language used is often more advanced.  The premise proven was, if you point out randomly 4 children in a class at the beginning of a school year and say, this child will be much more advanced then the rest, the actuality was they would be.  The correlation was, if you hold back a student with "special education" they will be held back.  If you allow a child to excel and not put limitations upon them, they will prove to excel.

If you are a studies based, statistical reference learner then this specific seminar workshop would be perfect.  I was however noticeably upset with one part of the lecture and that was the use of this particular doctors terminology.  One would think, of all places to discuss and educate families, parents, caregivers and even Early Intervention Therapists who attended, the person who was hired to lecture would be extremely sensitive to the language and also be knowledgeable of what is acceptable and not acceptable to say during/in a Down syndrome Conference.  As informative and interesting as the seminar was, I was completely disappointed with the Doctors reference to our children.  Every time she spoke about children or infants with Down sydnrome, she used the term, Down's kids or "a Down's person".  I was actually very surprised and offended as I believe most of the other parents were.  No one even had a chance to stop her and or correct her because she was lecturing and simply because we couldn't believe we were hearing this terminology at a place where it should have been the LAST place to be used.  We were all together to learn to advocate for our children, not there to worry about teaching or correcting!  I guess there are just some barriers (even at conferences) that obviously take more to break.  It was just overwhelming to hear in such a place and time.

The other two seminars were interesting, but dealt with movement, motion and working out the body - for infants and toddlers.  The last seminar was about teaching children how to read, using a specific method of utilizing memory to read.  The information that I was able to obtain, I will be posting about and also including on my new website.  I was given a ton of references for medical doctors and literature which I will post.  

After working hard as a vendor, and also as a parent who wanted to learn we had some time to mingle, meet and unwind.  I was able to take about 100 photos while I was there.  I wish I had taken my professional camera, these photos just don't do the actual event justice.  Thankfully Penny and Darwin (friends I had made well before the conference) were there to take some really terrific photos of us together.  Hunter also was finally able to meet some of the other babies with Ds, including his friend Vaun!

For now, here are some of the photos (30):

Just settling in to our hotel room and getting my snack from Daddy!
Do you want some too Daddy?  Mommy says you aren't supposed to eat mine!
Mommy always tells me to show her my nose... Oh boy!  Well, hopefully she's happy now!
This is a photo of our room and even here Mommy has to work on her laptop!
After my snack Mommy & Daddy wanted to eat dinner with their friends!
Here are Mommy's friends, Penny & Darwin.  They have a baby too, his name is Vaun!
This is my friend Vaun and his Daddy Darwin!  We all had dinner together!
After Dinner, Vaun and I got to talk just like the adults.  We have a lot in common too!
I wish we had my ball, we could have played for hours!
Here I am with my Daddy!
And here is Vaun with his Daddy!
Vaun told me that he loves his Daddy time!
The next day was the official start to the conference!  And it was packed!
Here are a few booths inside the conference room.
And here is Mommy's booth!  I am behaving myself in my stroller!
Daddy helped Mommy so much and he still had time to keep me company too!
Here is another photos of Mommy's booth.  I am actually hiding behind my toys!
Even though Mommy is so very busy, she made sure she had time to play with me!
Then when Mommy had to work, Grandma played with me...
And when Grandma couldn't hold me, Daddy played with me again!
Even Grandpa took his turn!  He gave me his hat too!  Don't I look cool?!
Here we all are together!  There was so much going on & Mommy said I was really good!
Here is Mommy's friend Penny & my friend Vaun!  He was all tired out from a long day!
Vaun was having fun and wanted to pull up his cool shirt!
Mommy did make a lot of time for me.  She hugged me up so much!
She asked me about her nose again, so I showed her!
Then she asked me to show my nose too!  So I showed her it too!
Even though it was a long day, Mommy fed me on time!  I didn't even have to ask!
Here we are as one big happy family!  By now I am a pro at being away with family!
After the conference, Penny, Darwin & Vaun went to see Niagara Falls!

I will be posting as much of the information that I was able to bring back, for the next week.  Along with the conference information, I will also post some information on some items I purchased at the conference meant to help Hunter, and how they are working.  Until then I have to contend with my fatigue which I originally thought was related to working so hard for the conference and all the other projects, but as it turns out - the fatigue is simply pregnancy related!  An unfortunate but welcome symptom of pregnancy.  It reminds me that I am still pregnant!

One last photo to share -

No doubt now!
The only question I have is... Why is this test so much darker then my previous pregnancies at 16 Days Past Ovulation??!!  Hummmmm....


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