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, October 31, 2010

My Journal - Week 63 (31Oct10)

Happy Halloween - Hope you had a boootiful night!

This was Hunter's second Halloween!  Last year we dressed up Hunter as a huge pumpkin... and he wasn't having any of it.  He definitely wasn't a very happy pumpkin.  This year however, Mr. Hunter was a happy little Monkey!  We dressed him up warmly and put him into his Monkey suit and he was all smiles!  Daddy did the honours of taking him around the neighbourhood this time since it was so cold out.  (I have the worst cold intolerance!)

Hunter definitely was the cutest Monkey out there (along with all the other scary Halloween creatures) and couldn't wait to get out there!

Here's the recap of the evening of Hunter's Halloween!

Mommy just got me ready to go!
Now Daddy and I are almost ready to go...

I am so happy for this Halloween!
Common Daddy!  Lets gooooo!
That's more like it!  We could go if Mommy stopped snapping pictures!
20 minutes later, Daddy brought me home!  It was very cold!  3 degrees Celsius... Brrrrr!
Look at me!!  I'm so cool!  Daddy was great to take me out!
Check me out!  I even have my mittens!
Now - you have to admit, this is a great shot of me!
Let go of my tail Daddy!  I want to see my candies that mommy wont let me eat!

This sweater I wore under my Monkey costume - it resembles Freddy Krueger, doesn't it?

2009 Halloween....
Not a happy Pumpkin!!
Hope you had a great Halloween too!

Thursday, October 28, 2010

My Journal - Week 62 (28Oct10)

Standing... Sitting... Standing & Clapping?

Steadily for a while now Hunter has been reaching milestone after milestone and it has been wonderful watching him achieve them.  Sometimes I forget that it is a big deal when he "gets" something because I tend to forget about the Down syndrome which is the way it should be.  That sounds kind of silly, but when you expect the most from your child, when you aim high as opposed to settling, you will find that things may happen as they should or when the results happen it feels so much better because you knew they would.

Something that we learned in one of the seminars at the Down syndrome Conference a few weeks ago was very inspiring and motivating.  The doctor who was lecturing said something that I wont soon forget.  A study was conducted in a class room at the beginning of a school year.  A teacher was told to point out four students in her class (whom she had never met or had as students before) and comment a loud that those specific students will excel better then all the other students, and achieve higher marks then the rest.  (In other words, the expectation was put directly on those four students by verbal comment.)  At the end of that year, those same four students actually excelled over all the other students within that same class.  The point of the study was to show, if you expect more from a student rather then only expecting what you assume they will do, they will do better.  It was evident that allowing students to perform at an expected higher level - by allowing them to think that they were able to achieve higher then they even anticipated themselves, they actually did so in reality.  Further the point was also proven that students who are put into special education classes or schools versus inclusive classrooms did poorer.  When children with special needs were treated the same or given the same expectations as any other child, they excelled and achieved higher - comparatively to the midstream level of typical children.  So the end of the day the lesson was that it was important not to segregate but rather place students in an all inclusive classroom and school setting for their benefit.  (There were other reasons why this was true which were due to resources being better, challenges were better, but over all the reason that proved most important was that expectations were higher and therefore so were the results.)  So, in knowing that this is true, (which for all intents and purposes - I have done the same with Hunter from day one) I always expect more from Hunter then allowing myself to think, I wont expect the same from him because he has Down syndrome.  That would be inexcusable as far as I am concerned.  There are things where I know there will be limitations perhaps physical development, (and when I speak of limitations there - I mean that while they might exist, it will mean that we just have to work differently or harder in other ways to achieve them.) due to hypotonia (low muscle tone) which has nothing to do with cognitive development.  It is a physical challenge that can be over come in other ways.  Also, I have to realize that while my methods of educating Hunter might be a little more forced or that we work harder, the point is - I do it knowing that he can do it, even if it may not come "naturally" or "easily" for either of us.

Having said all that, it brings me to today's milestone.  Lately since Hunter has been very busy exploring because he has finally achieved "crawling" properly (and I failed to post about this for some crazy reason) for the last month or so - instead of his Commando Inchworm crawl, he has been very interested in walking.  We have been working on walking together for the last few months.  Hunter has been cruising the furniture, but has yet to develop the appropriate balance to do it independently.  TODAY however, he did something that we have seen very rarely against furniture.  When Hunter stands up at the furniture, sometimes in the recent past he has become distracted from what he was doing and has let go of the furniture without realizing it.  We catch him standing there, sometimes leaning against something or actually spun around to watch something else more interesting.  Today while standing with Grandma's help, Hunter was watching his "Baby Can Read" video.  He has been trying to stand up and let go of whatever he holds onto  (people/furniture) and today while seeing "CLAP" he let go of Grandma to Clap his hands after seeing it on the television.  He stood there clapping, not holding onto anyone or anything, and I got so excited that I yelled and literally scared the child back onto his bottom!  I was so happy with what he had done, but then so mad at myself for scaring him out of it!  But sure enough, he did it a few more times after that.

My son can stand independently!!!  I think he has been trying to show us that he can do that for a while now, but we never gave him the opportunity to show us away from the furniture!  Well, I guess it wont be long before he tries to take that first step....  Wow.   So while it isn't for much more then a few seconds, it's happening.  And I am once again very proud of my boy.  Next I will have to get a video of it or photo at the least!

Speaking of photos, as promised - I have the rest of the photos from our play group that Penny graciously sent me to post - which I did promise to post a few days ago!  Enjoy again!

I am having such a great time - I even got a cracker to eat!
Still having fun!!  Can you believe there are so many toys?
I can make Kissy Fishy faces!  Mommy asked me to Kiss for the camera!
This is my friend Vaun.  He's having fun too!  Looks like he's got his Mommy's hair!
This is my new buddy Hayden!  He's having fun playing too!
I am talking to Taylor-Rose!  I was telling her something & "snap!" we had our photo taken!
Taylor-Rose is so cute!  She took a pacifier and popped it in upside down!
Here she is "blowing kisses" to everyone!  I wish I could do that!
Looks like my new buddy Hayden is getting ready to go.  He has a Sophie giraffe too!
Obviously there will many more photos to come and hopefully also many new faces to see!  There is nothing like sharing in something where it helps so many people and our kids all at the same time!

Tuesday, October 26, 2010

My Journal - Week 62 (26Oct10)

The Grand Opening was a HUGE SUCCESS!
YMCA Play to Learn (For kids with Special Needs)

Today was the launch of my latest project - the YMCA Play to Learn Group for kids with special needs!  What a wonderful success!  I am so very pleased with the way things went today.  Being our Grand Opening Day, for the Play to Learn Group for kids with Special Needs everything went so well.  Mom's and children, lots of toys and lots of great conversation.  It was exactly what I knew we needed.  A place to ask each other questions, seek professional guidance from Jenn (Senior Infant & Child Development Consultant - Early Intervention) and let our kids just have old fashioned fun with toys and peers all around.

The best thing happened today.  We were able to exchange information, learn and let our kids have fun.  One mom got some really great information pertaining to Down syndrome about the Disability Tax Credit that she didn't know about.  Another Mom got some super one on one attention from our Infant & Child Development pro.  Another Mom got to meet mom's and her children got to explore and play.  Our resident YMCA manager is specially trained in the area of Special Needs and also specifically in the area of Autism which was absolutely wonderful for one young girl.  She engaged her and had her learning and playing all at the same time.  Even a dad was there.  Which I have to say, I wish John was able to be there also, since I know he would have loved to have been there too.

There was nothing I could say that didn't go the way I had envisioned it.  The YMCA room - a room separate but inside the school with a fenced yard for outdoor play.  Meant specifically and exactly for our needs, complete with kitchen, laundry and of course washrooms.  Sue Morris (our Pickering Location YMCA manager) was there for us ready with snacks and juice for everyone.  I couldn't complain.  We even had a goody bag to take home with us, complete with a Parents Canada magazine, Hydra Sense mist (something no mom should ever live without, especially having a child who has Ds and has gone (or goes through) through the congestion stages) for the hard to blow runny nose.  If this sounds crazy, I may just be - but it really was a dream come true.  Very satisfying after all the hard work and nearly a years worth of putting this all together.  (Exactly 11 months).  While the turn out was smaller today, (being that our flyers didn't get out as fast as we had originally planned) we know that our future Tuesdays will be busier in the weeks to come.  For one thing, my new acquaintance, Donna Wright (President of the Down syndrome Association of Ontario, and Representative for the Durham Down syndrome Association) has graciously asked me if I would provide to her my flyers for the Play to Learn Group so that she can post them on those two websites in order to give us the exposure that we need which in turn will get the message out to parents of children with Down syndrome, that the group exists and is open and welcome to everyone.  I am so pleased to have met Donna during the Down syndrome conference just over a week ago, and I hope that in future we can collaborate on many projects to come.  I would love nothing more then to be a part of the Ds association of Ontario or Durham - more then just a member as I am today.  Whatever I can do to help, I hope will go a long way to advocate for and help others with Down syndrome.

The only one thing I am sad about is that I spent so much time talking and having fun that I only took a few photos despite the fact I made it a point to bring my "Mamarazzi" camera with me.  My trusty sidekicks Penny & Darwin (however) saved me in the nick of time by taking photos of and for us all.  I will post those as soon as I get them from her.  In the mean while, I was able to get a couple of shots with Hunter and his new friend Taylor-Rose, (who coincidentally, along with Penny's son Vaun will be part of my new website and upcoming 4th book, Welcome To Our House:  Our Journey With Down syndrome - The First Year).

I hope that everyone enjoyed themselves as much as Hunter and I did, I know we found it so beneficial.  I also hope that for everyone who couldn't make it out this week, that we will see you on our next date (every other Tuesday) November 9th, 2010.  A special "Thank you" to all the mom's who attended.  Without you today, the day would not have been the same.

Mommy brought me to this neat place called the YMCA.   I could play all day!
I met Taylor-Rose!  She wanted me to play but I wanted to show here these cool blocks!
Her mommy told her to give me a kiss, but being a boy, I ran away!
Then when I wasn't looking, she got one in!  But I turned and she instead she kissed my head!
Of course Mommy wasn't fast enough, but here's a clear shot of her kissing of my head!
So instead, I nabbed Taylor-Rose's Mommy and told her all about it!  She just smiled at me!
Keep watching!  More photos of everyone to come!  And I have to say - if I haven't said it enough, I can't wait until the next Tuesday - Hunter and I had so much fun!

Friday, October 22, 2010

My Journal - Week 61 (22Oct10)

Parents who Blog... can make a difference too!

I always knew that Blogging was something that anyone could do, and for absolutely any reason whatsoever.  What I never knew was that I would be one of those people who would be part of it too.  After I had Hunter, it was very important to me to make sure that people out there had choices, that they could learn and get the real every day information that was so lacking in the medical industry.  A personal perspective regarding the journey of having or caring for a child with Down syndrome and or Special Needs.  It became my strong focus and somewhat of a mission to show the world exactly the same information I wished I was able to find or learn without half as much trouble.  It was also for Hunter.  I knew after I had Hunter that he deserved a voice.  One that would explain to the world what most everyone else who had not been privy to our journey would want to know and should know.
And, "Welcome To Our House" was born.

Today I received an email - one that I was not expecting.  That is the great thing about surprises.  I was told that I had received an award for 2010, for Blogging.  I had received the accolade for being one of the top 30 Special Needs Blogs Awards.

Here is what the beginning of the email said:

Dear Sandi,

Congratulations! Sarah here, and your blog, Welcome to Our House, was
determined to be one of the best blogs to exude overall brilliance.  And so,
it has received our 2010 Top 30 Parenting Special Needs Blogs Award
presented by Medical Billing and Coding!

I had absolutely no idea that I would ever receive such a great award let alone my followers nominate me for it.  I am very proud and I have posted the badge honourably on my blog.  Here is the site which lists the top 30 winners:

Here is the award that I am able to post on my blog:
Medical Billing
Medical Billing

I would like to say "Congratulations" to all the other winners and also to encourage everyone out there to blog.  It helps those who are out there wanting information and the reality of our lives that otherwise without blogging, they wouldn't be able to find.

Medical Billing
Medical Billing

Thursday, October 21, 2010

My Journal - Week 61 (21Oct10)

Pregnancy and MTHFR....

I wanted to post a quick update for those of you who wanted to know what has been happening with the "Pregnancy" and my genetic mutation MTHFR variant C677T.

I was able to get an appointment with my family doctor on the Tuesday at noon and I was very happy to discover that my doctor had read the research I provided him with on the treatments for MTHFR.  I was given a beta blood test to determine how much hCG was in my system (proof of pregnancy) and also a prescription for 40mg Lovenox which is a subcutaneous injection blood thinner.

The current treatment for myself (a person with MTHFR C677T variant) is a 200% increase in Folic Acid (PregVit 5), Low Dose (Baby Asprin) 81mg, a 100mg B Complex Vitamin and a daily injection of Lovenox 40mg.

I am very happy to report that I have started the treatments and I am hopeful that it will allow this pregnancy to "stick".  I received the results of my beta blood test and the hCG number was 341 mIU/ML which is a fantastic number for 17 days past ovulation (DPO).  This number, (the beta hCG) should rise by doubling every 24-48 hours.  The actual number is not as important as the fact that the hCG should be doubling/rising.  But it is a good indicator for physicians to assess if further tests or evaluations need to be given.

I still have an appointment with the Special Pregnancy High Risk Clinic at Mount Sinai hospital in Toronto - which I am told is THE best place to be referred to when diagnosed with MTHFR.  The doctor I have been referred to is the TOP specialist in this field.  My original appointment (pre-pregnancy) was scheduled for 18 Jan 2011 (Can you believe that?  A very busy clinic indeed.) but has since been moved to November or after my first early dating ultrasound between the weeks of 8-10 weeks.  It's kind of crazy and backward to been seen after such a critical time, but these are their rules and protocols.  This is why I am grateful and also thankful that my doctor has stepped up to provide me with the necessary medications in the interim.

Now, giving oneself a needle in the abdomen is not really a pleasant thing to think about, but in actuality it doesn't hurt.  For me, it's the thought of preserving this baby and getting the right medications.  It may sound kind of crazy, but I am only too happy to do it.  I have since had to update my Medical Alert to include this new medication because it is a blood thinner.  It's just one more thing that "has to be done" in order to achieve a good pregnancy.  On another note, I am happy to also report that the ONLY symptom I seem to be feeling at the moment is fatigue.  Just like my 1st pregnancy with Hunter!  How terrific is that?!

We are hopeful and wishing success this time around.  Please wish us luck!

Wednesday, October 20, 2010

My Journal - Week 61 (20Oct10)

Learning & Development:
Some developmental items we discovered while at the conference....

I wanted to post a few things about the conference, but in this post I wanted to focus on a few things that I discovered while we were at the conference.  Amongst the conference there were about eight booths set up for vendors.  One of the booths contained learning toys and developmental toys - from a company called "Smarty Pants".  I decided to purchase a couple of items that I knew would be helpful for Hunter.  Keep in mind, the physical developmental items require adult supervision because they are for physical development..

The first item I found was something I had already knew I needed but I was unable to find a suitable version of this item.  This physical developmental item is called a Balance Disk.  It is made by a company called "Body Sport".  The purpose of this disk is to increase stability, balance and coordination.  Since Hunter is now trying to develop his balance to walk, (and he is able to walk with help and also cruise the furniture) I figured that he could use something to assist him with the development of his stability, balance and coordination.  The reason I believe this device will be much more beneficial then other's out there on the market is because it is much more stable to the ground and made of a soft material that if Hunter topples over, he wont hurt himself on the item.  This disc can also be re-inflated or deflated from it's prepackaged state.  The other balance boards out there are made of wood and are not designed for younger or less stable children.  This blue disk has two different sides (top and bottom) that allow the disc to be used on various surfaces (carpet, tile or wood floor).  The different textures can also be used for different development exercises - such as standing, sitting, kneeling or tummy work.  The disc is so much more beneficial to me over a balance ball because of the height aspect.  This disc is low to the floor yet it does the exact same thing as the ball in terms of learning balance.  The price of this Balance Disc is $39.99 CAD.  This is pricey but is something that was designed with multiple uses and is much safer then a workout balance ball.  You may be able to find this item for a lower price.

Nubby sided for great carpet grip.

Smoother sided for different surfaces or textures.

The second item I discovered was a weighted ball (they come in various weights) called "Body Sport" soft weight ball that allows the individual holding it to increase their arm, shoulder and upper body strength.  One thing that babies and toddler with Ds have in common are low muscle toned limbs (especially arm and shoulder strength) and it's hard to find a great way to increase these muscles in a fun and interesting way.  This ball comes in weights of 1pound all the way to 6.6 pounds.  I know that Hunter enjoys playing with balls very much and this way, picking up this ball to throw it will increase his strength in his shoulders and arms which in turn will increase his ability to allow more weight baring on his arms for crawling and pulling.  The price of this soft weight ball is $19.99 CAD.  Again, this item is kind of pricey but the design is something that I could not duplicate that would be durable, safe and provide the same strength training.  You may be able to find this item for a lower price.

Body Sport Soft Weight Ball - 2.2 pounds.

Comes in six different weights (1.1, 2.2, 3.3, 4.4, 5.5 & 6.6 lbs).

Finally, these two items I did not purchase from the conference but I though they were worthy to comment on and I found them very helpful for Hunter.  The first item is called "Baby's Learning Laptop" made by V-Tech.  It is important for me to talk about this item because one thing that is a constant in Hunter's life is the fact that I spend a whole lot of time on my Laptop and he often wants to press the buttons and help me to type when he sits in my lap.  I purchased this baby laptop a few months ago and ever since it has allowed Hunter to develop his pointing and point to press.  Since this Laptop has three different functions - songs, familiar items in the home, and alphabet it is able to teach the following aspects to your child: Music, Objects, Shapes and Sounds.  The Baby's Learning Laptop is designed for babies 6 months and up and I have to say even though Hunter has had it for a while and he is now 14 months old,  it introduced him to the world of his own laptop.

Vtech Baby's Learning Laptop - even has it's own built in "mouse".
It has three different learning functions and two volumes.
Hunter really enjoys the bright lights on this Laptop.
Hunter also enjoys playing the 9 different songs - Here he's clapping along.
He understands when it tells him "Good bye!" that he can press buttons to start again.

The second item is called "Teach and Talk Laptop" made by BlueHat toy company which is a higher learning laptop and one that we actually started Hunter on before the Vtech one (yes, kind of backward) but I wanted Hunter to be able use the Vtech one that was more durable that he would be able to bang and and if it fell onto the floor from his highchair would not likely break.   The Teach and Talk Laptop (for older toddlers) we bought is actually designed more specifically like a laptop and even has a detachable mouse and the age group for that one is actually for age 3 years and up.

Teach and Talk Laptop with detachable mouse.

Teach and Talk screen.  It is monochromatic.
The keys are QWERTY and also resembles a real laptop.

The Vtech Baby's Learning Laptop is priced at $22.99 CAD in Toys R Us.  And the Teach and Talk Laptop we found at a general computer store for $9.99 CAD  Comparatively the Teach and Talk Laptop has more learning features such as mathematics, spelling, telling time, music, keyboard skills, memory and vocabulary.  Each unit is appropriate for development in different areas.   Admittedly I swap between the two units depending on what I want Hunter to focus on.  The Teach and Talk Laptop I only allow Hunter to use when he is sitting with me.  Since the age for that Laptop is 3 years of age and up, I ensure that he is supervised with that at all times.

I will be trying to put out some posts about the different developmental items I have purchased and how they have worked with Hunter.  I am really pleased with the various developmental toys and items that I have either purchased or received as gifts since he was born.  If anyone has any questions, comments or ideas, please feel free to send me an email!

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