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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Thursday, March 31, 2011

My Journal - Week 83 (31Mar11)

ALL INCLUSIVENESS ROCKS and with GOOD REASON!
And Fun Video Clips of Hunter Walking, plus other photos!

One great thing (that I talk about over and over) is the wonderful motivation a child gets when he or she is able to see another child doing things that the observer has yet to do or try or perhaps was once unwilling to try.  I have spoken at length about why all inclusiveness is key and a necessity for children with special needs or any kind of developmental delay.  I have also mentioned that the proof has always been in the pudding, not just in medical studies or opinion.  I have seen (at various stages of Hunter's development) the benefit of having Hunter see and interact with typically developing children his own age or older.  Just this past weekend Hunter had the wonderful opportunity to see and play with his cousin who just about his age (shy 3 months) but just walking, and further was also able to meet a three year old very sweet girl who happens to have Down syndrome, who also was running circles around Hunter.  Hunter has always been very good with interacting with his peers, friends and family, whether his own age or not.  On the weekend, during play with his cousin, Hunter had a terrific time playing, chasing, talking and subsequently learning - more than we knew.  While Hunter had taken his very first steps back in the beginning of February (at 17 months), the walking had not quite yet cultivated into proper walking and despite our attempts to "push" him to take those steps more often or better, he seemed to flat out refuse with his typical nonchalant attitude, "been there done that" or, "did it once, why do it again?".  All until, seeing other babies and friends, "WALKING".  Since Sunday, Hunter has been walking up a storm, literally.  It's no longer hard to get a video, nor is it a challenge to get him to do it.

Today, Hunter's Early Intervention Consultant (Jenn) was over for a monthly assessment, which in recent times has become a major effort to get Hunter to "show off".  Once upon a time, showing off was the norm.  Until, today.  Hunter decided to break free of his recent "shyness" and perform once again like the little trooper he used to be.  For over 45 minutes straight, Hunter showed Jenn - task after task, mastering each item, moving on and demonstrating that he is in no way "delayed".  His cognitive abilities seem to be (for the majority of tasks) right at 19 months, with a few past his age and in the 21 month range.  It's no wonder that the area he excels in is his vocal and environmental recognition skills - blame Mommy and Daddy...!  Many of his gross motor skills are in the 18 month and over range such as climbing 13 stairs to the top, and stepping down (only one step), not to mention the walking.  It's hard not to be proud, even if the things he achieves are the "norm" for others and "typical", knowing fair well that it's expected that he may have delays.  For parents of a child with Down syndrome (and other special needs), every step is precious, every milestone is treasured.  Every assessment is a time where we as parents might suffer a bit of stress - wondering many different things, and sometimes the same old things.  Whether we realize it or not, we may hold our breath wondering if your child has delays and how (if anything) something can be worked on to help him meet or get to those goals.  And sometimes we are met with news or information that we might not expect - positive or not.  For example, until there is news that we consider "good" news, we might think to ourselves - have we done enough?  Could we have done more?  Often for us personally, we are pleasantly surprised, despite the worry.  When there is a fear that maybe he might have a delay in an area, we argue with ourselves that we "should" have done more.  Truthfully, what we have to remember is, (as a parent of a child with Down syndrome) if our child did not have Down syndrome and didn't meet a milestone according to a "chart" of some sort, it would not be a question.  It would be a matter of, "every child meets their milestones when they are ready", and nothing more.  So, it's important for me to remind myself and other parents, to "FORGET" the milestone charts (despite the reality of it being nearly impossible) and just relish them as they come, without question or conflict.  More thinking like our child is "typical', less about Down syndrome.  I think it's well established that thinking "Typical" can often equal being "Typical" - because truthfully, what's to stop us from thinking that way (especially when outside influences are removed)?
So for now, we need to concentrate on the here and now.  At this stage, our son is just fine and wonderfully typical.  I will not be worried about tomorrow being negative (or rather the possibility of negativity).  We know each day, we take as it comes, but we also work like there's nothing stopping us from doing "everything" that "everyone" else does.

Enjoy the short but fun clips... but I have to say, the best is definitely the last one!  And see below for photos.

Part 1


Part 2


Part 3


Part 4


Part 5


Part 6


And finally, some perfectly, absolutely adorable recent photos including some of Hunter and his newest girlfriend, at YMCA play to Learn for Kids with Special Needs!

Me & My best buddy Vaun at the Durham Ds Association Meeting

Look at me!  My Mommy & Daddy took me swinging!

Yep, I love swings.  Hey - Don't you love my outfit?  Matching sweater & socks!

My Daddy makes me giggle so much when I swing!

I keep telling Daddy to go higher, but Mommy said no!  I can take it though!

Nothing like swinging.  I bet you want to try with me - you know you wanna!!

This is my new girl friend Lexi!  She loves to give me kisses!

I'm playing shy, but I give good hugs too.

My Mommy taught me to be a gentle-boy.  Can I get your seat Miss??

I think she's independent, she said "no!".  I'm confused!

Well, I'll wait here at the "oatmeal" box for her... maybe she'll notice me now?

Looks like it worked!  Now she's playing with me!  Finally!

Ahhh!  It did work!  I am getting hugs again!  I must have done well.

My Mommy told me share my Puffs.  I gave them to her Mom.  Maybe I'll get one?

Looks like being patient works.  Two for Lexi, one for me!!

My friend Lexi is so nice, she helped to give me my Puffs to eat!


Monday, March 28, 2011

My Journal - Week 83 (28Mar11)

So, He's NOT "Special"???
The reality of other peoples non-acceptance regarding our son....

To my dismay, we are currently having to deal with a somewhat well anticipated reaction, or stereotypical perception of our son being "Special" or having Down syndrome.  It's not shocking to me at all that we have to face this, but what is shocking is with whom the stereotype/reaction is from.  The people who I never thought to worry about educating were our family but having said that, it's usually one's own family who will cause the most amount of grief when it comes down to it.  Family are the ones who generally don't hold anything back, some having less tact than the general public, and the fact that it's family mean that feelings come into play and somewhere, somehow, someone's may get hurt.  We tend to expect a lot from our families but it stands to reason why.  General acquaintances we can walk away from if we don't like their behaviours, and the general public we can ignore, but family - well not so much.  Sometimes for the sake of family, we do the opposite of expecting comprehension or understanding.  Sometimes, in order to keep the peace, we pass the buck (so to speak), holding our tongues so that we don't step on toes or hurt feelings by pipping up or correcting inappropriate/unacceptable behaviour that we know "if it were anyone else"..., we'd have at them.  I decided (long ago), if I am to be true to me, (and more importantly) true to my son, I wont remain quiet with the people who should mean the most to us.  It would be very hypocritical otherwise, and I am just not okay with that.

The situation:  
A long while back a family member told us, (regarding having a child with Down syndrome) "I could never do what you do.  I give you credit because if it were me, well I couldn't do it."  Initially, I said nothing about the comment but chose to use that person's comment to help others to understand that I was not superhero because often times "choice" can be irrelevant for most people who have a child with Down syndrome - AND in our case despite there being a "choice" for us.  We wanted our son.  It made me realize that while the person who made the comment had no ill intentions, the fact remained - it could be taken offensively by some.  Since I knew that the comment was not meant to be mean or harmful to us directly, the only comment I had in response to this person was - the exact same as what I chose to put in my blog and advise others:  Anyone can say they couldn't do what we did/do, but the truth of the matter is if you are/were ever faced with the exact same situation, what you feel that your choice might be now, may not be the same if it ever occurred.  I myself am living proof of that. 

Now, the point could have ended there, but this person has since mentioned that same comment to us on two further occasions, making it three times in total.  Keeping in mind, our son is now over a year and a half old.  Each time I have continued to make the same reply as always, saying most importantly, 'one can say what they "think" they would do, but being in the position itself is completely different'.  Sadly my story has now, two points.  The person went so far as to explain to my husband and I, their personal reasoning and how they could validate knowing that they couldn't raise a child with a special need.  This person had used their own personal situation (as an explanation to us) - about having a premature infant and fearing having that child with a serious developmental delay (instead all the while using the words 'mentally retarded') and telling the doctor that they needed to know if that child would or would not be delayed.  Only to further explain that if that child was delayed or "retarded", they could not do it.
The position that I was in, hearing this story, had put me into conflict (and not just for the use of the "R" word).  I know not every person feels they can handle raising a child with needs, in fact I would be foolish to assume or think people would "want or choose" to raise a child with special needs (generally).  But, it has never been my intention to make a person feel that they should, or even judge a person who feels they can't.  Educating people is something I do, but only where it's welcomed unless they are being knowingly offensive in which case I don't put up with it.  More over and specifically it seemed that this person needed to validate their position (on raising a child with special needs) by saying, it's better to personally admit that one can't do something than to pretend or lie.  But they are not in our position and I see no purpose of telling me, a person who doesn't even remotely feel the way that they do.  Frankly (and without being oppositely and equally offensive) the way I see it, we had never asked this person if they would raise a child with a special need or  ever wondered if they would, so for us as a family (myself, John and Hunter) hearing someone's position about it once - is (at most) interesting but several times after the fact... questionable!  In other words, we were left to wonder, what exactly is the motive?  After many hours of pondering, we came to realize that for this person, it was all about being uncomfortable and this was their way of justifying it.

The story continues....
For over a year and a half of Hunter's existence, we have had the pleasure to visit and keep company of this same person - who (for clarification) is someone we actually enjoy being with and sharing a many debate and philosophies.  And until recently, we had never questioned this persons reluctance to hold, interact or even speak to our son.  Initially it seemed that maybe (and despite having adult children (who are currently our age) of their own) this person was just not a "baby" person.  We were sadly shocked to discover, this wasn't the case.  We experienced first hand, this very same person - carrying, laughing, cuddling, holding, and playing with a baby who is actually 3 months younger than Hunter in such a wonderful "grand-parently" manner, that it may have caused us to stare in disbelief.  Now, some might think, maybe it's because Hunter isn't this person's grandchild - and they would be right.  Some might further think, perhaps there wasn't the same opportunity for Hunter to have been treated the same way, but that would be incorrect.  My husband (and I give him great credit for this) tried very diligently to get this person to be involved and at least interact with Hunter, short of putting Hunter in this person's lap and walking away.  Some might think we were just being over sensitive about the whole thing, but we have had a long chance to ponder it since it occurred.  In that moment, where my husband was trying to get his son some attention from this person, and in that next moment where Hunter sat on the floor looking up at this person holding another baby, playing, laughing and having a great time - broke our hearts.  It's very hard not to be "sensitive" about it, but we still said nothing at that moment, unsure of exactly what was taking place.

And then there's more....
While the "ignorance" (- and ironically what else could be better used to describe "ignoring" a baby) occurred before the 'third time explanation' of, "I couldn't do what you do, caring for a child with special needs"... which is the reason why nothing was said at the moment of our child being "ignored", and also why I feel that the explanation was given to us, perhaps as an explanation for what took place.... My husband went on to amaze me further - My husband, (who for all accounts and purposes was probably more confused at this persons behaviour than I was simply because I do more supporting and advocating on a regular basis) said very matter-of-factually, "There is nothing 'special' that I do for Hunter that I haven't done for my other three children!"  He went on further to say, "I don't do anything special or different with Hunter than my other three, I treat him exactly the same way as all of my other children".  At this point, one would think - any person hearing this might pause and really think, but the answer my husband received was, "I still couldn't do it".

Some have said, you don't need people like that in your life.  More have said, Hunter doesn't need that.  AND ultimately, they are right BUT the truth of the matter is, I need NOT to ignore or forget about people with this type of sentiment/stereotype.  It's all the more reason why I struggle so hard to advocate.  But there is a line and a limit.  At this point, some may argue that Hunter is so young, he probably wont recall this specific situation - but my husband and I will.  We have worked so hard to ensure that everything that we do for our son is all about equality, love and no limits.  We push for inclusiveness, tolerances and understanding.  If we ourselves see that Hunter is typical, and work so hard at it - it makes absolutely no sense for anyone to praise us for doing it, and then make a mockery of that praise by undermining everything it stands for.  And, should it be that Hunter is less than typical, or has more delays as he matures - then I simply say to those who would rather not feel "burdened" by baring any of that weight; we don't feel that anyone need to pretend or go out of their way to be there.  It would definitely bother us more, if we have to pretend that someone is comfortable, when clearly they are not. 

But, in this story, we are obviously troubled and saddened that this is occurring.  This person has been such a positive impact on and in our lives and realistically, we would definitely mourn the loss of togetherness at the expense of someone not willing to be, "educated" or "comfortable" about and with our son.  But, our son needs us more than we need to put up with hypocrisy or excuses.  So as always, we hope that people can change.

Friday, March 25, 2011

My Journal - Week 82 (25Mar11)

HUNTER'S WALKING FINALLY CAUGHT ON VIDEO!
And...
Hunter's 2nd Official Swimming Lesson!

While I know it may not be super exciting to watch four videos of Hunter learning how to swim, (after having seen the initial 1st lesson) I did promise to keep everyone updated on his progress and time in the pool!  However, more importantly was the promise I made to catch Hunter's unassisted walking on video, and I DID IT!  And I kid you not, that job is a feat in itself - not his walking... the videoing of it!  Those who know Hunter, know what kind of photogenic, not at all camera shy baby, he is.  So, hopefully you can appreciate the time it's taken to get this on video - as much as we do!

So without further ado, here is our video clip of Hunter (and the caption I used for You-Tube to describe it):

Even though Hunter's very first steps were taken on the 9th of February, I have been trying ever so hard to get a bit of it on video.  And as promised, here is a short (very short) clip of Hunter walking on his own, unassisted.  This short SIX step shuffle was caught after he actually took about a TEN step shuffle only moments before it!  I kid you not, it's nearly impossible to video Hunter doing something extraordinary simply because he will STOP everything he's doing just to be a "HAM" for the camera.  And, he is one child (possibly of many) who will not perform on command.  He is quite the opposite actually, where he will go out of his way NOT to do something because you are watching him.  He will even check people out to see if they are watching before he attempts to do something he's been working on.  Very sneaky and also cautious!  I actually had to hide the camera several times just to get this shot.  So, enjoy!



Just as an update to this video (which took a few days to get uploaded), Hunter has since walked halfway across my best friends living room!  It was the best walking he has ever done, sans shuffling!  He actually took proper steps and literally walked about 5 feet, all by himself!  It was most unfortunate that I did not have my video camera or cell phone poised and ready to take the video.  But, at this point it's only a matter of time that Hunter starts running around the house!

Now, here also is the 2nd swimming lesson that Hunter had on Friday.  Before each video is the caption I wrote for You-Tube and also to describe what was happening.

Hunter's 2nd Swimming Lesson - Part 1:
Today we recorded Hunter's 2nd swim lesson and once again he has surprised his Mommy & Daddy.  I had believed that he would have a melt down this time around, knowing that he was going to be separated from his parents - but instead of doing so, he managed to have a great lesson.  He did seem a tad bit upset while sitting at the edge of the pool (I think it was due to having a different deck supervisor "Dawn" to hold him, meaning learning to adjust to yet another person) but whenever he saw his instructor Bonnie coming to get him, he livened right up.



Hunter's 2nd Swimming Lesson - Part 2:
Hunter has already demonstrated a progression from his very 1st lesson that I wasn't sure he'd get to so quickly!  In his lesson with Bonnie he actually allowed her to lie him down in the water on his back, and further allowed her to do it while only holding his head!  This kind of progression had me in awe simply because Hunter trusted Bonnie enough to do it without losing his mind AND after only one short lesson a week ago!



Hunter's 2nd Swimming Lesson - Part 3:
While it may seem that Hunter is very sad and pouting at the beginning of each recording, (and my professional parent reasoning is that he's truly more sad about having to sit outside of the water rather than my initial worries of him being distressed about Mommy & Daddy not being there) one thing is for certain, he enjoys kicking and splashing water onto Bonnie when she sits him on the edge of the pool during his lesson with her!  Watch how he kicks water onto her each and every time she places him on the edge (but not with Dawn when he sits waiting).  It becomes more obvious to Hunter that it's funny to kick water onto Bonnie in his lesson - in the next and final clip....!



Hunter's 2nd Swimming Lesson - Part 4:
For this final clip of his entire lesson, it's interesting to note the things Hunter does when he's on his back learning how to float!  He tries to kick non-stop (and I think Bonnie is telling him not to, so he can learn to float) - and that is Mommy's fault since it's something we initially taught him to do in the full size bath tub and also when we took him swimming, he also pops his hand into his mouth - something he has always done when he's either being tickled, gets excited or is doing something scary like being held up in the air by Daddy.
It's very interesting how Bonnie seems to sooth Hunter by rubbing his forehead while she holds him on his back in the water.  I think it not only makes him very relaxed, it calms him to the point of nearly sleepy!  Lastly, it seems appropriate that this was his last turn with Bonnie for this lesson since he started saying "mom, mom, mom" (lip read by Mommy) and also just about fell asleep in Deck supervisor "Dawn's" arms after Bonnie handed him off to end his lesson.  The interesting thing was, despite his tiredness and calling for Mommy, he willing put his arms up to go back into the water at the end, making it clear he wasn't done being in the pool!



Keep watching for more lesson video updates!


Wednesday, March 23, 2011

My Journal - Week 82 (23Mar11)

It's official:
I am now an Executive Board Director of the 
Durham Down syndrome Association!

After a wonderful meeting with the Durham Down syndrome Association this past Tuesday, it has been made official that I am now part of the DDSA executive and a board director.  I was very happy to get so involved with the association, as I feel I have many years of executive experience with past endeavours that I can contribute, and also a whole part of me which has dedicated the last two years to educating and supporting the Down syndrome community. 
Currently my responsibilities include being the Director of, "Resources", "Memberships" and the quarterly "Newsletter".  All of these responsibilities are right up my alley and I feel that I have much to offer in those areas.  It's very important for me as an educator and a supporter to be able to provide services and be of service to support the association and ultimately the Down syndrome community.  Every step that I take, every thing that I do, helps Hunter and everyone else who needs any sort of assistance or advocacy.  I take my role very seriously as it has been mentioned that I prepare for my future position to become Chair - and I would gladly accept that position should they want me as I aspire to do just that.  For now, I am completely thrilled to be able to help and also learn.

It is with taking these responsibilities and also knowing that an association such as this one which needs people, who are willing to go that extra mile; that I do exactly that.  This very association not too long ago, was in jeopardy of having to consider amalgamation because there were not enough people to help it to push forward and succeed.  Every organization needs new influxes of people, fresh insights and dedicated persons willing to step up, and help the association to become a positive resource for those families who want and need to have exactly that.  At the same time, the organization needs it's back bones - the original people who have the knowledge and skills that made it what it was then and allow it to grow.  Together, an obvious mix of strong volunteers will make a kind of difference that the people of Durham need it to be.

In being part of this association, I can definitely pass on information that we have which can assist and benefit anyone who reads my blog and also help to spread the word relating to other wonderful things such as seasonal Events or Fundraisers (which will be coordinated by the Director of Fund raising).
As an Example, some future/upcoming activities or events can include things like (but not limited to):
  • dances (Christmas)
  • parties, 
  • picnics (summer), 
  • bowling and sports, 
  • a Buddy walk, 
  • awareness activities (booths/information sessions/shows), 
  • and other group programs (Parent/Child Support & Playgroup YMCA)
  • Open general meetings (to find and meet other families)
As part of my duties, I am hoping to make connections and gain memberships from the many families here in Durham, Ontario.  Note: Memberships are not limited to the residents of Durham, anyone can be a member.  I personally am a member of four Down syndrome associations. It has been suggested that there may be some 200 plus families that have a child with Down syndrome whom we (as an association) have not yet reached.  I am hoping that I can seek out and find some (if not all) of these families and primarily provide resources and regular information that can help to better the lives of individuals with Down syndrome.
And of course, as an association - we are always looking for donations and would be happy and extremely honoured to receive any amount that a person is willing to give.  Any amount over $20.00 is automatically issued a donation receipt for income tax purposes since the DDSA is a registered charitable foundation.  PLEASE feel free to contact me directly if there is interest in becoming a member or making a donation!  Similarly, if anyone is interested in receiving information about the association or resources in general, they can contact the DDSA directly (905-433-4100) or myself (Sandi) directly - via email or phone (see "All about us" or the "Contact Form" page here on my blog at the top under the "Welcome To Our House" banner).  The DDSA website is www.ddsa.ca which can always be located as a reference in my blog on the right hand side in my reference websites.  Stay tuned, as I will also be working to get the DDSA website updated.


Monday, March 21, 2011

My Journal - Week 82 (21Mar11)

HAPPY "WORLD DOWN SYNDROME DAY"  3-21

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.


FACTS ABOUT DOWN SYNDROME
• 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

LANGUAGE GUIDELINES
• 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.
CDSS


HE'S HIGH FUNCTIONING!?
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!

Saturday, March 19, 2011

My Journal - Week 81 (19Mar11)

WELCOME TO OUR HOUSE - 
AN ANALOGY

The title you know... or hopefully so!  It's the title of our blog, it's the title of my upcoming newest book (that has been in the works the longest) and it's also the title of the Analogy I had written way way back when - when Hunter was just a peanut in my womb.

Back when I first started writing, or rather when I first started "really" writing I wrote the analogy that has come to be the "token" part of my blog, books and other things Down syndrome.  I had it copyrighted, I also had it published in a few places such as online in association websites and my personal works.  I had gone a few steps further (back in 2009) and reached out to a few magazines and newspapers - looking and hoping that they would like to publish the analogy as part of a story or single article submission.  Two different magazine companies eventually got back to me and told me that they would be happy to publish my analogy.  One of those magazines was "Exceptional Families".  This is a magazine that no parent who has a child with any type of need should be without.  The editor contacted me and the rigorous work of getting my story into an edition was born.  After many edits, photos and emails, my story hit the press just in time for the Spring 2011 edition - Volume 6, No.3.

I am so very proud to present, my two page spread of "Welcome to Our House - An Analogy" in print. 

Pages 30 & 31 in the magazine - Click to enlarge & then click again to magnify more

Exceptional Family magazine - Spring 2011 edition Volume 6 No3. 
You can find this magazine in any Chapters book store or any place that sells a large variety of magazines.  I do believe however, this is their last "printed" edition as they will be moving to an online edition.  I am sad to see such a wonderful magazine stop printing hard copies but I do fully understand that the future is all about the web and online subscriptions.  I have certainly gained a lot by reading this magazine, from doctor articles to very specific information on Down syndrome in particular as well as many other types of medical special needs.  Exceptional Family will still be available to order as a subscription, but as I read (on page 5) in this last printed edition, all future editions will be online. 

On other fronts, I have not been taking as many photos as I usually do of Mr. Hunter-bunny so I decided to post a few today that I had taken this past week.

Yummy Mommy!  I didn't know that peas and broccoli could taste so good!
Yes, it's true - Mommy actually made Daddy take a picture of my dinner....
Now that I am all done eating, it's time for a photo shoot of course!
And for the first time I discovered Mommy's tummy is bigger than my own!
Yes, it's true... my belly has suddenly taken over.  I do believe my belly is now larger than it was when I was 37 weeks pregnant with Hunter.  The sad reality?  I am only 26 weeks pregnant in this picture.  So when I say my belly has taken over, seriously - I mean it's taken over the whole wide world!  I can't help but think how many pounds Hayleigh will be when she's due.  They say (someone says) that if you have a small or lower weighted baby, you will likely have another.  It's genetic.  Well, I am pretty sure that will not be true in this case.  I have already gained 20 pounds this time around and for my whole pregnancy with Hunter I gained only 20 pounds.  I just hope I don't explode!  My back is already causing me to be really uncomfortable.  Having multiple serious back injuries and degenerative disk disease (to name one of the many medical issues that I suffer with relating to my back) makes pregnancy very difficult.  And while it may not appear that I am suffering (as I sit there above with a smile on my face) I am in a lot of pain but seriously happy to be pregnant after all the losses I have endured.  Make no mistake, pregnancy is hard enough on the body without all the additional medical issues I face.  I am very grateful that I have my husband and parents to help me.  Without their help, I'd physically not be able to get through the day.  This coming up Wednesday, I finally get to see an anesthesiologist at Mt. Sinai hospital to talk about getting a spinal epidural to help with my sciatic pains.  For three years prior to my pregnancy with Hunter, I used to get epidurals in my L4 - L5 every three to four weeks to help minimize the nerve pains I suffer with.  After Hunter was conceived I had to stop getting the spinal injections.  This time around, the pains I suffer with have progressed and it's nearly at a point where I can't function and I am always in pain.  Imagine a constant electric shock or electric knife stabbing from your lower back and down your legs.  That's what I deal with and the pregnancy only makes it worse.  Hopefully I can get a bit of relief with the epidural as I did in the past.  (It's not quite the same as an epidural you receive in labour in terms of complete immobility but the numbing of the nerves as a result is the same.)

Hope to keep you all posted as things progress.


Friday, March 18, 2011

My Journal - Week 81 (18Mar11)

Hunter's very 1st official swimming lesson!!!

As promised, I mentioned a few posts back that I would tell everyone how Hunter's very first official swimming lesson went.  In all honesty, I was more worried about Hunter being afraid of being handed off to a complete stranger and also how I would react to seeing him upset.  I really didn't believe that he wouldn't be upset since it has been quite evident that Hunter is experiencing the separation anxiety stage where a loss of seeing mom for more than a few seconds causes him some panic.  The reality though was more surprising than I had expected.  Hunter did fantastic.  My family tells me, I don't give Hunter enough credit.  The joke is, I didn't give myself enough credit either... I knew in my heart that I would be the one to have a more difficult time with his fears than he would and thus my packing a whole box of Kleenex to take to his lesson... for "just in case" I sprung a leak!

In perfect mommy fashion, I took my camera and also my video recorder.  Unfortunately the one way glass would not allow me to use the camera to take photos, but shooting the video was a go.  So, the following are five separate short takes of Hunter's entire 1/2 hour lesson!  As a side note, the crying you may hear in the back ground is neither myself or Hunter.  It was another small baby during her lesson, but oddly enough while she sounded like she wasn't enjoying her lesson, she actually was!

Beginning of Hunter's lesson (Part 1):
Here is Hunter, at his very 1st official swimming lesson. I really thought I would be using up an entire box of tissue as I had originally feared that Hunter would feel abandoned and scared for the lesson. Well, Hunter proved me wrong (once again) because he had a terrific time, despite the fact that we were no where in his sight for the whole lesson. Hunter did so very well, and I have to say I am so very proud!




Part 2:
Here is Hunter, doing very well, paying attention and learning.  More over, it would seem he's enjoying the water and taking in this new challenge of being taught "swimming" without his Mommy.  As you can see, Hunter is being instructed privately - one on one, despite being in a rotation with another baby. 



Part 3:
Here is Hunter, slowly becoming more acclimated to the water and his new instructors. I am still surprised beyond belief that Hunter is happy, excited and paying attention to his instructors. I had definitely not given Hunter the credit he deserved regarding handling separation from his parents at the same time as having to learn a new skill with strangers. Similarly, I also didn't give myself enough credit of being able to handle watching my son separating and not bawling my own eyes out!



Part 4:
Here is Hunter, doing very well, paying attention and learning. More over, it would seem he's enjoying the water and taking in this new challenge of being taught "swimming" without his Mommy. As you can see, Hunter is being instructed privately - one on one, despite being in a rotation with another baby.



Final part - Part 5:
For the final part of his lesson you can see that Hunter has done extremely well throughout the first 20 minutes of his lesson, but he is noticeably becoming less stimulated or surprised by his new surroundings which means that more typical "Hunter" behaviour has room to step in. Due to having no nap before swimming lessons, it appears that tiredness has caught up with Hunter and a slight rubbing of eyes comes into play. So with the rubbing of eyes, as well as the newness of his experience starting to wear off, a pout finally makes its way onto Hunter's face replacing the original yet surprisingly curious initial expressions. Although I am tickled and overjoyed with Hunters success and no fear attitude, Hunter wouldn't be Hunter without at least a hint of a tear for all that he had endured without his parents in reach and sight. Either way, I am tremendously overjoyed and extremely proud of my son for being as strong and emotionally calm for his very first swimming lesson and separation!  I can't wait for next week and hopefully Hunter is just as "fearless" next time!



B&C Aquatics REVIEW:
I have to say, the most important part to this whole experience, short of Hunter's success was his instructor Bonnie Buckler (the co-owner herself of B&C Aquatics), Ashley (one of the instructors and my initial contact for the company) and the facility itself.  The major differences between this private swim club and a recreational facility that has group lessons (aside from the price factor) is the care, attention and very specific professionalism that they demonstrate.  When I first contacted the organization, I was treated very personally, time was taken to explain every detail, their philosophy and how they instruct versus a general swim program.  I learned so much in about 10 minutes of speaking with Ashley regarding general recreational swim lessons and their private facility lessons and why it is so very important that they teach the way they do - which included explaining why they do not have parents in the pool, with the children or in view whatsoever.  Each lesson is structured around every individual child and not in a group mentality.  Progressions in the lessons occur when the student demonstrates understanding and an ability to perform, not based upon a time limit or how a group is structured to run.  Each instruction runs one on one, in a small group of no more then four students maximum.  In Hunter's case, there were only two students- which meant that Hunter learns a whole lot more then a group of six or more in a recreational setting.  I was further amazed in that when we arrived, Ashley came and spent literally the whole lesson explaining every detail about the lesson, what to expect of both Hunter and his instructor Bonnie during the lesson and more specifically exactly what Bonnie was doing during the lesson with Hunter.  She also addressed issues like what we can do outside of lessons to help Hunter, as well as things we shouldn't do that could hinder Hunter.  The pool temperature is always a wonderful 93 degrees Fahrenheit, the air temperature is no less than 91 degrees.  This is very important for mothers who are taking their babies for lessons and want to ensure that their child will remain warm.  The facility has regular change rooms as well as a family change room.  There is a comfortable parent viewing lounge with one way mirrored glass.  They also have a cafe attached to the facility with a full food menu for both children and adults.  I don't have a single negative thing to say about the club, even though the fee structure originally seemed very steep.  (I was able to get Hunter's 10 lessons for $49 on a deal which worked out to 78% off the regular price).  The program cost normally for his 10 lessons plus 4 kids meals would have been $218.00....

Now, after everything I have seen and been through one lesson for Hunter, I realize that sometimes great successes can come with a price tag.  The term "you pay for what you get" comes directly to mind in this case.  If however I do a true comparison in terms of prices, when you take any regular recreational community centre fee of $90-100 dollars for 8-9 lessons and understand that a class would contain more than 6 students to one instructor and then think how long it might take for a student to progress....  Or, the cost for a semi-private group (at the same recreational community centre) of 4 students at $149 for 8 lessons.  It then doesn't seem so bad that the cost of the private swim facility like B&C Aquatics who's fees are $185 for 11 lessons.  At first glance (without knowing all the details), it would (and did) seem very hard to justify nearly $200 for 11 lessons.  But it becomes very obvious after you do the comparison and see results why I will more than likely continue with the private club (versus the recreational centres) after Hunter concludes these 10 lessons.

I hope you enjoyed his lesson as much as I did!  It just goes to show (once again) that our kids are so willing and capable of doing whatever they need or want to and even if under tremendous pressure from their parents to excel!  I have always said, I expect Hunter to do everything and anything that any other child can or wants to do.  There is no reason for me to think, he can not.  He proves that every single day.  This is why I could go on for ever preaching about how "ranges" in Down syndrome have nothing to do with a child but all about the parents.  If you are not willing to expect your child to do well, then sadly you are setting them up for exactly that.  Push your children... all of them.  There is no reason not to.  When you expect them to excel, they will.  If you expect them to fail, they may do just that too.  I was recently told by a doctor who I am looking forward to working with in the future, there is no such thing as "high functioning" or "low functioning" children with Down syndrome.  I know this myself, and politely try to explain this to people who tell me that they see my child as very "high functioning".  My answer these days is, Hunter is typical.  It's often the parents who are either "high functioning" or "low functioning".

Stay tuned for more lessons!


Wednesday, March 9, 2011

My Journal - Week 80 (09Mar11)

Down syndrome Awareness & the Durham Down syndrome Association....
And why I want to be apart of it!

This month of March (precisely the 21st day) is World Down syndrome Day.  The date was chosen because of it's relevancy to Down syndrome.  "3-21".  Three of the 21st Chromosome is Down syndrome.  While it isn't the 21st of the month yet, I thought it was appropriate to talk about a meeting I was able to attend just yesterday.  The Durham Down syndrome Association or DDSA hosted it's Annual General Meeting meeting and I decided to attend.  Of all the associations around me, I was not yet a member of the DDSA.  The reason this is ironic is because I live in Durham!  It's hard to get out to all the associations let alone be a part of them all, but I wanted very much to become part of this one so I attended the meeting.  The DDSA had a wonderful meeting which included information that was constructive for me as a parent and also relevant for Hunter.  Examples included a speech Pathologist who was there to present information on the topic (this is currently of interest for us now with Hunter using and signing words), a financial investment specialist who spoke about the new Registered Disability Savings Plan and much more.  Along with all the presentations and information the current Chairman announced that the DDSA was in need of some new and willing people to help run the executive and the board of directors.  Interestingly, I had already planned on asking the association if I could become part of their organization in a more involved way such as being a part of their executive/board of directors.  It seemed almost "fate" that there were openings within the organization and that they were looking.  (I have about 10 years experience with being all the different parts to Executive's committees in my past).  Who would have guessed that it would be possible for me to become involved in such a useful way that is specific to Ds and where better then in my own area.  My mission to educate, advocate and support is on its way to being even better then I could have ever imagined.  So as it stands, I have volunteered and will subsequently be attending the next meeting this coming 22nd of March where the determination of the Board of Directors and planning for 2011 will take place.  I am very excited for this opportunity and endeavour.

I was able to introduce myself to the key people of the association while also reacquainting myself with the DDSA's co-chair (who is also the president of the Down syndrome Association of Ontario), and also to several families and members who already are a part of the DDSA.  It was a great evening altogether.  I had my family with me including my mother who is an integral part in helping me with Ds advocacy.  I am so excited to have a chance to become involved in this way with this association and more over to be a member with a purpose.  If I could volunteer for every aspect or position within or of the association, I probably would have but I would be happy with whatever position I am able to do in order to help.

Speaking of helping and presentations, just a few weeks ago I had the wonderful opportunity to speak and present about Down syndrome to the Kiwanis Club of Riverdale.  This is the volunteer charity organization my mother is an executive member of (and has been for about 15 years).  Helping seems to run in our family!  I was asked by the organization to attend one of their meetings and educate their members about Ds.  I was so very pleased to do so.  The comments I received afterwards is also part of what made it so special.  The members had some preconceived ideas (as most people generally do before hearing anything about Ds) and they were completely in awe and so attentive, literally hanging on to every word I spoke.  Regarding their enjoyment with my presentation, I was probably just as surprised and amazed by their reactions as they were about my presentation.  It was definitely a success.  I also have another presentation to do in May at the request of my Family Doctor.  Simply put, speaking and presenting is something that I love to do, that I am comfortable doing (as if it were like second nature) and want so very badly to continue doing.  I believe I may have more presentations in the near future, based upon some connections I had recently made and of course ones I am currently making.  Ultimately, I hope if I am able to become part of the DDSA's executive committee and or Board of Directors, that I can further help and expand in this area and do what I do best.  Help, Educate, Support and Advocate about Down sydnrome.

Ultimately what is nice is that I am able to help educate about Ds but more amazing is the many connections I was able to make from the meeting (all the wonderful families) and new friends!  I learned from this meeting that there are over 200 (known) people in the Durham area alone who have Down syndrome.  While this number sounds large, it doesn't surprise me.  According to the World Wide Web, in 2008 the "total population" for the Durham Region was quoted as being 590,000 with an average of 10,000 new residents per year.  (That ratio would be about 1:3000 which makes the actual number of people with Ds small in comparison) In the past, before Hunter - that number would have completely blown me away.  The reality is, there are more people with Ds in our community then anyone might have guessed and it is my/our job to help find these families and be there - whether to help provide resources, support, information, opportunity or even just friendship.  This is my goal - besides plain old advocacy.  Which will in turn make it a much better world for my son and anyone who has Ds.

And back to "Hunter", it's official.... Next week Friday (18th Mar) will mark his first actual swimming lesson with the B & C  Aquatics swimming club!  It will also mark the first time I "hand" over my son (to a person he doesn't know) for a period of time.  While having a baby/child is full of milestones and discovery for the child, so is it also for the parent.  I know I have already rambled on and on in past posts about how it will likely affect me more than him, I can't help but stress about the upcoming separation.  Clearly, it's why they call it "separation anxiety".  Hopefully it wont be as bad as I am feeling it might be (the separation, that is).  Perhaps I will get it all out of my system before the 18th.... Of course the reality is "then again, probably not". 
  • Reminder to self:  "Hunter is/will greatly benefiting by learning to swim and this is more important than my separation anxiety".  
  • Repeat reminder every so often up to 100 times a day.
  • If repeat fails to hinder anxiety, cry and eat an Oreo Cookie and blame current pregnancy hormones.
Updates (as always) to come!

Friday, March 4, 2011

My Journal - Week 79 (04Mar11)

SWIMMING.... FEEDING and WORDS - There's always more!

I have written about Hunter's newest enjoyments and milestones which include swimming and self feeding, also the recent past walking (or stepping) and talking.  I had not had the chance to post our recent photos and videos so I am taking a short oportunity to do so before I either forget or it becomes so part of daily routine and therefore not as exciting - for everyone to enjoy!

Just today I had the chance to read an article published in the Durham Parent (a small local news paper) and I nearly landed on the floor laughing so hard while reading it.  The article (written by Karen Principato) is clearly about what every parent (not just us) seems to be doing these days, involving swimming with a baby.  I thought I was reading a story about Hunter, John and myself and our tribulations taking him swimming.  I would have typed the whole article out - IT'S THAT GREAT... but then I thought I would just search it online and link it for you all to have the same pleasure I had in reading it, but their website www.durhamparent.com didn't have it listed for me to link.  So I was left with my last option (and much more time economical way) of taking a high resolution photo of the actual article and post it here for you all to read.  You can click on it and see it larger (or zoom in) to be able to read it better.

Click on image to see it larger
But as promised a "short" note and the photos about Hunter actually swimming.  I think I mentioned how I wanted very badly for Hunter to learn to swim.  (We have two giant ponds of water behind our backyard) With that, I decided to enrol Hunter into swimming lessons but I had originally figured to take him family free swimming first, to ensure he'd be okay with pools rather then just sign him up and come to find out that he didn't like it and had no choice but to endure it while hating it.  I didn't think that he would have any issues with it since I have been acclimating him to "swimming" so to speak by filling up our large bath tub with water and holding him in the positions of front and back crawl so that he could "see/feel" what it would be like to be in those positions in the pool and also kick.  It definitely was a great idea to do that in the order I had because on our first and second visits to the pools in our area (community centres) Hunter loved it and was a natural in the water.  All during my planning and organizing Hunter's swimming, I received an email (ironically) from WagJag (a promotional site for getting discounts on various local businesses) that had swimming lessons on sale though B&C Aquatics (which is run by Bonnie & Christopher Buckler).  This company is a private swimming club that specializes in the instruction of swimming to babies, tots, children, teens and adults.  I jumped at the chance to purchase lessons at 78% off the regular price and also passed the same deal onto two of the mom's in my YMCA Playgroup for Kids with Special Needs.  We had all been discussing getting the boys into swimming lessons (after taking them swimming the first time two weeks ago) and this deal was really too amazing to pass up.  So, after purchasing the swimming lessons we (one of the same mom's from my group) decided to take the boys swimming again (which was last Sunday) just to keep them used to the idea of going and enjoying the water.  Here are a few of the shots (we were able to take this time) of Hunter enjoying the water!

Mommy, I've got both my feet... is that how I do it?

Okay, how about one foot... can I hold one foot?

Oh alright... I will just kick both feet instead of holding them!

Ohhhhh, kicking is better for me!  Much more fun!

See mommy, I listen... kick with my legs and splash with my arms.

Look Mommy!  I'm doing it... I'm swimming... right?!

How come we just keep going round and round???

Maybe once Mommy can let go of me I can go straight instead!!

But for now, I'll just pop my hand in here... since Mommy holds me up!

I wonder how long I can get away with my hand in my mouth....?

Oh, I guess not for long!  Mommy keeps telling me to take my hand out!

Ahhhhh, this is the life!  I love this swimming with my Mommy thing!

I wish I could post all the photos but I know this is more exciting for me (and Hunter) then it is for everyone else!  Anyway, we will be starting the official lessons probably next week but even though I am so excited for Hunter to learn, this centres policy is NO PARENTS in the pool with the student.  All the lessons are officially instructed by the certified and qualified instructors and this will be the first time that I "hand" Hunter off to someone he doesn't know AND also can't see his Mommy.  Honestly, while at first it will likely be distressing for Hunter, it will be MUCH more distressing for me.  I know I will be sitting there making up all kinds of stories in my head of how Hunter will be thinking I left him and I am not coming back.  (Meanwhile I am just on the other side of the one-way mirror lounge for parents).  I will definitely need support to hold me back, while I probably silently (or not so silently) cry (being pregnant), and also stop me from trying to "rescue" my son.  I know logically that it has to happen at some point, where Hunter has to separate from me for lessons, school and life in general - but no matter how much reasoning I do, how logical I am, I know it's impossible to stop my head from conjuring up all the things that we as adults are capable of thinking, for and about our child.  When that comes (next week or so) I need to be stronger then normal.  I also need to realize that if I am sobbing and heaving, the recording I will be doing from the pool viewing window will be rather poor quality!  So for the sake of my readers, I had better try and hold it together!  But if by chance the video is shaky or has sobs in some parts of the sound portion of the recording, you know why and have been forewarned!!

Onto the feeding... I had also promised to try and get a video on the blog of Hunter attempting to self feed.  I didn't quite get a "SELF" feeding video, but an assisted feeding video!  Hope you get a laugh out of those ones.

Part 1 of 3


Part 2 of 3


Part 3 of 3


A final note, Hunter is now using about 11 words!  It amazes me (again) how when he figures out something, the rest seems to fall into place.  He has been saying, "Momma", "Dadda" (since 6 months), "Bye", "Grandpa" & "Adat" (aka Cat for over four months) "Grandma" & "all done" (more recently - though he had been saying "Umma" for Grandma since more then six months ago) and this past few weeks - "Up", "Stink", "Hi", "Yes", and "OOuice" (aka Juice).  I am sure I have probably forgotten some, but these are the ones he says all the time, consistently and accurately.  I am now trying to sign (sign language) words such as "more", "hungry" and "finished" and I am not sure if it was a fluke, but after we showed him the sign for "more" the first day, later that night he made the exact sign for "more" when I paused the television.  It was unmistakably the same sign, since there was never a time he would move his hands in that fashion and it's quite difficult to think he ironically made the same gesture as the sign for "more".  So, mentally I am in dispute as to whether he copied or actually understood the sign.  He hasn't done it again since though, so I think my speculation might be correct as a copy or Hunter has taken his usual attitude "I did it once, why do I need to do it again??".  And, really - can you blame him?


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