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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Saturday, December 25, 2010

My Journal - Week 70 (25Dec10)

MERRY CHRISTMAS EVERYONE!

As promised, here are the highlights from Christmas day and evening!

First I wanted to post a few photos from just before Christmas that we finally took in front of our tree.

A family photo just before Christmas

Daddy & Hunter

Mommy & Hunter


Our day started out with opening Christmas presents and stockings.  Hunter had a great time opening and seeing all the wonderful gifts from his entire family and friends.

Look at this!  What do you think it is??

Wow, opening gifts is a hard task but is so much fun!

Thank goodness my Mommy helps me with opening them!

Ah-ha!  A V-Tech Sit to Stand learning train!  Just what I always wanted!!

I think opening presents was Hunter's favourite part!  He looked so happy and was excited for the day!  After a full day of opening presents, lunch and getting ready for the evening, we headed out to our cousins house for Christmas dinner.  Here are some of the wonderful photos taken from the evening.


A wonderful feast for Christmas

Mommy is holding me while getting us dinner so I can help choose!

And now I got to eat most of Mommy's food!!

I know I look like I am happy but I was very tearful here when we first arrived.

Now I am very happy (for real).  There are more presents for me?!

WOW!  A Xylophone!  I am going to have so much fun!

This Mickey Mouse shirt says, "I may be small, but I'm the boss"!   So true!

Aunty Jane got me a remote controlled Police Car!  Just like my Mommy!

Here I am trying out my new xylophone!

My Aunty Mise got me this amazing learning toy!  It shows me the alphabet!

I wonder what is inside this??

What a cool book!  This is a teddy bear!  Here are his eyes and nose!

And a Mickey Mouse to go with my new shirt!

Another book!  I love books!  How did they know??!

I love this Police Car!  It's what my Mommy used to drive!

What do you mean there is a reindeer in the house??!

Ohhhhh!   I am the reindeer!!  Now I get it!

It's fun to be a reindeer!  Do you want to be one to?

Clap for me Grandpa!  Don't I look great?!
What a wonderful day and evening we all had.  I thank my whole family for this wonderful time of the year and making it so very special for Hunter.   Hunter has a bunch of new toys and clothes that he absolutely loves and cant wait to use them all.  I will be sure to post reviews about the items he received and how well they help Hunter learn and play.

And just to add something very interesting, I got an unexpected present myself for Christmas!  While relaxing during our desert after Christmas dinner we all laughing and having fun playing Monopoly Deal (a family card game).  Hunter had fallen asleep on my chest facing me.  I suddenly felt as though he had kicked me in the lower abdomen.  I wondered how how he could have kicked me when his legs were wrapped around my waist and commented about it to everyone at the table.  I laid Hunter down to sleep and within the next five minutes I felt three more distinct kicks!  I was feeling my very first "kicks" of this pregnancy!  Without going into too much detail, during my first pregnancy I didn't feel kicks until after 18 weeks because of the location of the placenta.  So, to feel them so definitively at nearly 15 weeks is such a wonderful treat.

I hope everyone enjoyed this holiday season and was able to spend it with those they love and care about. 

Friday, December 24, 2010

My Journal - Week 70 (24Dec10)

Merry Christmas EVE!!

I just wanted to take the time to wish all my friends and family a very special wish for the holidays!  Being from a very multicultural family, saying "Merry Christmas" is not enough to cover it all or every holiday that is celebrated out there, so I wish to say "Happy Holidays" to each and everyone of my personal friends and family and also to my newest friends and family out there in our wonderful Ds and online community!

While it is "just" Christmas Eve that I am posting about right now, I will be posting my longer actual Christmas time post tomorrow which is Christmas Day.  We will be spending Christmas morning at home opening our presents and having our traditional Christmas family breakfast.  While last year it was Hunter's very first Christmas he was only 4 months old and with that in mind this year seems that it will be more special for him.  I think as every child ages, each year (during the childhood years) Christmas or any holiday becomes more and more special with more anticipation and surprise.  And as it will be more exciting for Hunter this year, so to will it be for John, myself and my parents just to watch Hunter with his excitement!  Later Christmas day, we will be making our way over to my cousins home to have a large family Christmas Dinner.  With that in mind, I will likely have many wonderful pictures to post!

So, stay tuned for some holiday fun!

From my family to yours, please have a safe, happy and prosperous holiday season!

Monday, December 20, 2010

My Journal - Week 70 (20Dec10)

What to do about YELLING....??!!

Many moms have asked this question when their little one gets to the age of testing out their voices and vocal cords in not such a pleasant way.  For kids who have delays with communication, it's obvious that other methods of communication will take place such as grunting or yelling when words are not as easy.  Recently I have noticed that Hunter is trying his best to communicate what he wants and most times he's very effective in doing so.  Hunter isn't really a pointer, but I think that is because most of the things he wants are within his reach.  He has been saying Momma and Dadda for quite a long time now and appropriately too.  Umma used to be his term for Grandma, which has recently changed to Nana-mama.  Not sure how that happened, but it works.  Hunter has also said a collection of what I call "One time words" which is to say that he has said a word with perfect pronunciation such as "Milk", and "Again" and "Grandpa" to name a few, but for some reason he has never repeated these crystal clear words ever again!  It's like he has come to the conclusion, 'Perfect.  Now I have said it, I don't need to say it again!'.

One thing is for sure though, when Hunter wants to do something and he can't, or is trying to get something and it isn't working, he becomes obviously frustrated.  He will slap his hands down onto his lap in frustration and make the most sour face you have ever seen.  While it's amusing, it's also distressing because you know he's obviously frustrated.  Which brings me to the yelling.  Only recently has he begun to yell, and what was once cute and not too distracting has become quite loud, boisterous and annoying.  Hunter knows that his yelling provokes a response out of anyone within ear shot, so like the little master that he is, he's figured out that yelling equals response.  And at this stage, any response is better then no response at all.  Being that I am a first time mom of a baby (I have three step kids who were not babies when I entered their lives) I have had to make my own mistakes in order to learn.  My first mistake with this yelling thing was an automatic response to yell back... "STOP THAT!"  Oh how that was not the right thing to do.  At first Hunter was startled and didn't continue.  But slowly after repeating this little "game" of yelling and getting Mommy or Daddy to respond by in turn yelling back to stop, he learned quickly that it worked to get our attention.  Soon after the strategy changed to attempting to yell back at him (as if this would make logical sense...) in the same exact annoying pitch that Hunter used.  Imagine if you will, child screaming at the top of his lungs... then Daddy or Mommy yelling back in the exact same pitch and silly loudness.  Firstly, I just want to say for the record, the first time it was done, Hunter was once again startled and stopped immediately... unsure of what exactly was going on.  Secondly if you can imagine what this looked and sounded like, you are most likely right.  Stupid.  So, what exactly were we teaching Hunter?  A) Yelling must be okay, since Mommy and Daddy both are doing it right back to me, and B) Yelling gets the response I wanted... attention.

Great.  So after all of that wonderful trial and error lesson learning what exactly did I get?  A lesson in what not to do.  So what exactly do you do with a yelling 16 month old?  Something that seems to work, which is not as counter productive as the other ill fated ideas and far as saneness goes is much easier on the poor ears.  Do something that makes sense.  COVER YOUR EARS!  Now, if this sounds silly - while it may look exactly that way, it really isn't.  After all else had failed, such as trying to ignore the yelling.... (ya right!) or simply telling Hunter not to do it... I realized that just as non-verbal (not using words) so to speak as he was being, I would be too.  The first time I put my hands over my ears, Hunter immediately stopped yelling.  Whether it was to figure out what the heck Mommy was doing, or because he was noticing that my reaction was completely different than the usual is hard to say.  The next few times I repeated the action of covering my ears and he gave up yelling only to try and pull my hands from my ears.  This lasted for a bit until he figured that once my ears where uncovered he could continue to yell.  Immediately following that episode I deployed my next confusing tactic.  Whispering.  What did I say??  Yes, Whispering.  I whispered that Mommy's ears hurt or Mommy doesn't like yelling, along with a pained look on my face.  As if this wasn't a confusing change of events!  Now he had to be quiet (on his own accord) just to hear what Mommy was saying!  So far, these two tactics deployed together promote a sudden quiet that forces him to be quiet to hear exactly what Mommy is saying to him AND when he quiets Mommy says thank you and gives him positive attention.  So far my only hope is that he doesn't equate the attention as being the reward for the whole entire process of yelling and then being quiet so much as just being quiet.  So far it's working.  The hard thing about doing this is refraining from immediately yelling for him to stop and also making sure everyone else in the household does the same.  It's very hard when you have an extended family dynamic all living under the same roof (albeit a large roof) to ensure all the modes of teaching are the same so as not to confuse the child.  It's never perfect but at least when things don't go right I can't always blame Hunter so much as I can blame the craziness of multiple and different family dealings toward one child.

Anyway, it's just amusing to me that (as I have mentioned so often before) Hunter is not the only one learning here.  Hunter is our teacher in this great thing we call life and all it's lessons that come with it.  Psychology lessons aren't just for the professionals and their patients you know, and I am realizing most of the lessons they share probably didn't come from a text book - they came from dealing with their own families!

If you have any Yelling/Calming techniques I would love to hear about them!  I am sure at some point our wizard will figure me out and be at it again sooner or later.  Perhaps changing up the routine (just like changing shampoos every so often - which is supposed to be good for your hair...) will be just as beneficial in terms of learning!

Thursday, December 16, 2010

My Journal - Week 69 (16Dec10)

Just a few lessons and watch out world!

I muse constantly about how quick Hunter is to learn a new game or toy.  It's not that I want to gush constantly about how my child does this or that, but in these cases it just makes me smile.  I guess for me, watching a child learn, absorb like a sponge is simply incredible.  In this journey of ours, I think it's even more fantastic and special that I speak about these accomplishments because it represents a whole different world for many who are walking and taking this same journey and it also serves as an educational tool for others who have old preconceived ideas about how children with special needs learn and develop. 

I have read many books, articles and magazine clips about how children learn.  From children with special needs, to just learning in general.  I have learned personally that while there are charts and gauges to levels of learning and such, no child will ever fit a typical mold or in other words fall into each and every category or slot that every book says they should.  That is not to say that I am disputing what experts say (far from it) but I have learned that typical or not, charts are just that.  I think I have said often enough that charts for milestones are interesting gauges for parents of typical kids who want to ensure that their child is learning properly and is not hindered by an unknown delay of some sort.  But following these charts religiously can cause parents to stress, which can lead to pressures upon a child.  On the flip side though, having expectations for your child (reasonable ones) is healthy and does promote learning if done with encouragement.  This is something that I learned I can do without unnecessarily pressuring Hunter or feeling guilty if he doesn't fall into a "scheduled" milestone for example.  It does me and Hunter absolutely no good if I sit back and say "he has Down syndrome, therefore he can't or might not do that yet...." and at the same time, expecting him to perform at genius IQ levels probably isn't going to do him any good either.  A subtle line somewhere down the middle where you can say, I expect him to learn (however and whatever way is best for him) and meet his full potential, is great, I believe.

What encourages me to tell others is how he learns.  Just this past Sunday, I dragged out a toy that was given to Hunter back when he was little.  He had received some Fisher Price "Roll Alongs" (which are balls that have various things inside them, from being see through with animals inside to being opaque with textures and sounds if shaken).  The toy that was passed down to him from a friend is a Fisher Price "Roll Along" play area.  It is a large dinosaur that allows the "roll alongs" balls to be used with the dinosaur.  When Hunter was finally able to hold these "roll alongs" in one hand (this past summer) I should probably have taken the Dinosaur out for him to use the "roll alongs" in, but quite honestly I forgot about it.  Just like his basketball net, and his skill with putting the basketball into the net, it wouldn't be far off for him to use the Dinosaur and roll alongs toy.  But having too much out of the same type of learning toy I think can be too distracting and possibly make him uninterested in both of them all together.  So while I forgot about the Dinosaur, it was probably a good thing. 
I lugged the Dinosaur out of hibernation and demonstrated to Hunter how the Roll Alongs new use (instead of being thrown around the family room...) was to insert them into the Dinosaur's various slots.  After showing Hunter how to do this twice, he showed me that it was a skill he could easily master.  Was I impressed?  Yes of course.  Why?  I am not sure!  I already knew that he understood the mechanics of placing an item into a hole designed for it, so what was so impressing?  I guess it would have to be that I showed him only twice and he took over.  He also seems to realize that while he has a small box of various toys (all the same size) where I keep his Roll Along balls, he never chooses any other item (such as the Tonka small vehicles) to insert into the Dinosaurs slots.  I was sure that he would experiment and put one of the other small balls or cars into the Dinosaur (since they are all within the same box) but he chooses the Roll Alongs without fail.  Now to me, that is impressive.  I know it certainly shows reasoning and a skill to differentiate that while there are other toys that seem perfectly shaped or sized to fit into the Dinosaur (and I know because I tried them myself....) he has not chosen them to go in there.  I am sure that if he had tried them I would have chalked it up to exploration and learning, but it would seem that he doesn't need to try it to understand.  And that I think is definitely demonstrating learning and comprehension.

I noticed I haven't been taking many photos of Hunter lately but I did manage to get this learning and playing of the Dinosaur Roll Along toy on video... so I am hoping that you will enjoy the two short videos that Daddy took of Hunter and I playing.

Here is Part 1 of 2:


Here is Part 2 of 2:


Hope you enjoyed the videos!

On a personal note, I am now 13 weeks along and things seem to be going well!  Besides the daily queasiness and the myriad of specialist appointments, things are great.  I had the NT redone yet again totalling three measurements which all ranged from .90mm, to .95mm and the final one taken this past Tuesday at Mount Sinai hospital special risk pregnancy clinic was 1.27mm.  All within normal ranges but being here before, (with Hunter's normal NT measurement albeit a bit higher but still within normal ranges) I know better then to think things are perfect.  As I mentioned before, measurements are a very tricky calculation, having to ensure by protocol that the baby lies perfectly transverse just to name one, and also that each measurement taken by itself is meaningless without the other correlating data such as blood screening etc.   But the fun still remains with guessing the gender of this baby!  We wont have a more clear picture of that area until at least two to three more weeks.  So keep on guessing!  (Poll is located on the right side of the blog is anyone is interested in casting a vote for boy or girl!)  And on another note, it would seem every ultrasound I have, my due date becomes earlier and earlier.  What originally started out as June 26th is now June 21st - so everyone is also free to guess what my due date should be - but I should forewarn everyone, I am likely having another C-Section due to my poor hip and back structure, so that date is up in the air too as my due date changes.

Wednesday, December 8, 2010

My Journal - Week 68 (08Dec10)

He's a growing boy... there's now proof!

Today I was going to blog about my prenatal appointment I had on Monday which was my level one prenatal screening ultrasound and blood screening for our current pregnancy... but I decided that at the moment, Hunter's newest accomplishment is much more exciting and reportable!  And, I will be having the ultrasound redone this Friday so I can blog about it then.

It's not to say that our new pregnancy isn't exciting because that would be the furthest from the truth but I just received a call today from my Obstetrician that said I must come back in to have my high level prenatal ultrasound redone due to some obscured measurements that were taken on Monday.  The test that is done called IPS or Integrated Prenatal Screening (which detects for Down syndrome and other issues such as Spina Bifida or Neural Tube Defects) has two components, blood testing and also a high level ultrasound which specially takes a measurement of an area called the Nuchal Fold (Translucency).  This fluid filled area is located behind the neck during weeks 11-14 of gestation and can only be accurately measured during these weeks specifically because after week 15 the fluid will begin to dissipate and not reflect a proper measurement that can be correlated with the "RISK" of Down syndrome.  Now, it's very important to note that this measurement alone is not indicative of Down syndrome, or even the increased risk without the various other tests that it is correlated against.  Even then, the test only can statistically show risk and odds of the possibility of Down syndrome.  There are ranges to indicate being within normal limits - and more importantly this range is very different for each area, country, state or province.  It is very important that expectant mothers who have this measurement taken do not compare to other women for many reasons, one being that location has a lot to do with the acceptable ranges of normal and also simply for the reason that I experienced myself - measurements are very hard to obtain properly which are strictly monitored by process and protocol.  For example, if the fetus is not lying transverse, a measurement is NOT supposed to be obtained.  Also, in Ontario; three measurements minimum must be obtained in order to calculate an accurate reading.  There are also formula which are used to also assist and streamline the fact that every technician who performs this measurement will take into consideration the fact that there are minute differences to how each person measures.  Simply put, the process, the results and the then correlated odds are far from simple.  The more important factor which I believe is the most important item to remember is that after all is said and done, a normal measurement (while very reassuring) doesn't always mean normal and a high or abnormal measurement out side of the range (which is often distressing for many parents) doesn't always mean there is any problem at all.  (High measurements can often lower in time and correct in utero).  Myself as an example (or Hunter rather) who had a completely "normal" NT scan measurement of 2.3mm (where 3mm to 3.5 in Canada is considered the high end range of normal) ended up having Down syndrome.  And due to his "normal" or typical measurement, had I not requested to have an Amniocentesis, I would probably not have ever realised that there lay a possibility that Hunter had Ds.  The NT measurement is a tool to help doctors refer parents to the next stage or level of prenatal testing.  As I mentioned in itself it is not a diagnostic test to determine Ds, but rather a diagnostic tool for screening.  Testing and screening are two different things.  If anyone is or has more interest specifically on this topic, it is one of the very important topics that is in my new website under the references area.  (The site is still under construction and I hope to have it up soon....).

So, back to the important information....  Hunter GREW!  He not only grew but he also gained weight!  For a long time, Hunter has been a featherweight.  It's not to say that he was underweight by a whole lot, in fact - he still measures on the typically developing child's growth charts although has been teetering near the 10 percentile on them.  For parents of children with Ds, we are told through research and reference that we should be utilizing growth charts more specifically designed and targeted toward our children simply because it isn't really appropriate for them to be classified on a chart that is designed for typically sized children when children with Ds heights and weights are simply much lower then a typical child.  For example a person with Ds, average height for adult males is 5 ft 3 inches and adult females is 4ft 11 inches.  This is not the average height for a typical adult - male or female.  But the reality is, these averages (whether for Down syndrome or typical) are averages only and do not always represent the majority.  Just like the general population, anyone can be taller, shorter or completely off from the averages.  So, while it is important for parents to be aware the other charts exist I also believe it is very important to not necessarily segregate everything in every case just because the child has Ds.  If the child can exist in a typical world, fit into a typical chart, typical feeding, learning or whatever is out there, there really is no need to create segregation just because.  The motto, "more alike then different" should apply in every aspect of a child's life, no matter how their chromosomes are arranged.  And it is for that reason alone that I try my best to have Hunter do and use what ever things typical are out there unless he needs something "special" to accommodate him.  Until then, everything typical - charts, food, his world, everything.  This goes back to expectations.

Now, back to what was the real reason for this post - aside from the moral and learning objectives that go along with this detail, Hunter (in literally one month and three days) has gained 3.6 pounds and also 2 inches!  This might not sound surprising to some (simply because he is spending the largest time of his life putting in the most growth that he will in one short period of time) or sound completely surprising (as it did to me) since after one year of age, many, many references and medical literature suggest that growth and weight will rapidly taper off since his largest growing spurt of his life should be ending or pausing at this time.  So, while I know that every child is different, I don't think that ever in 33 days did Hunter EVER gain 3.6 pounds or two inches.  What I would like to say that I do know is, in the last three months I have actively been giving Hunter "real" table family foods for dinner with very few exceptions (being if we have to go out and a jar of baby food must do in a pinch).  So with a grand total of Hunter being 23.6 pounds and 30 inches tall, I would love for Hunter's body to take the credit for gaining weight!  But realistically I believe Grandma's cooking has been a great influence (hopefully not in eventually making him overweight...) in helping him to get to the medical average weight (for 1 year 3 months and some odd amount of days) being 24.8 pounds.  Noting too, that his height being  30 inches where the referenced average was 31 inches.  Oddly enough he is literally right on target for head circumference and has always been in the 50th percentile and higher, in that area.  I am pleased to say, that with his weight now in the 40th percentile for typical kids, and height being near the 20th percentile, I am very pleased.  I only hope that (and this is the sign of a worry wart mother) that he doesn't have any medical issues such as the typical Under-active Thyroid which often accompanies people who have Ds.  Weight gain can often be one of the first signs of Hypothyroid as well as fatigue.  Thankfully, "fatigue" as a symptom is not one of Hunter's.  So that more then weight would bother me, especially when his weight is still a teeny tiny bit under the average.  We will know for sure the results regarding his thyroid and other health issues on the 28th of December when he has his next well visit check up, since we had his blood drawn just after his 12 month checkup - Refer to my blog back a few months ago to read about the blood testing adventure... or torture, rather.

While it seems that blogging about weight and height might be really the least significant things to blog about, they are achievements for Hunter even if he wasn't making a conscience effort or attempt to get to these specific milestones.  It's yet again one of those small things that often we would have or likely taken for granted if he didn't have Ds.  Relishing in things that often we would dismiss as something that just normally happens allows us to really take in every little thing that comes along throughout Hunter's development and this journey.  I hope this makes sense to those of you out there who do not have a child with any specific needs but I certainly know that parents who journey right along with us can appreciate this ever so much.  So, for those of you who are waiting for their child to hit a specific milestone, just know - even if they seem to be delayed for whatever reason (time or development) they do come, just sometimes when we least expect them to or maybe we didn't take the time to notice other ones that they did meet!


Monday, December 6, 2010

My Journal - Week 68 (06Dec10)

A GREAT GIFT IDEA FOR DEVELOPMENT!!!!
What YOU might want to put on that Christmas list!!

This post is really about Hunter, even though it might initially sound like it was purely about myself.  I made a purchase on Friday but it was not only for myself (even if when you hear what it is, you might not think so....).  I decided after a few years of hearing about iPods and the newer iPad by Apple to do some personal research about them.  I had no idea the capability and power that these items had and would have.  When I heard the name iPod, my thoughts originally pointed to a sophisticated MP3 player and not much more.  I never bothered to investigate what else they could do since I myself already had a personal MP3 player which I rarely use.  My tune started to change when my best friend continuously showed me day after day what his iPhone Touch was capable of doing with all the applications that he had on it.  So, with my interest peeked I figured it was time to speak to someone who I know uses his iTouch gadget daily, for business purposes - my family doctor, Dr. Mark.  After speaking with my Doctor (who advocates and uses and has both the iPod Touch and iPad) my mind was made up to purchase an iPod Touch.  This device looks exactly like the iPhone and does pretty much everything that the newest iPhone Touch does, minus have a phone (which I do not need since I have a Blackberry Mic phone).  I was all set to go out and purchase this iTouch iPod thingy when later on that same afternoon (and very conveniently) I had the wonderful opportunity to speak with the APPLE Integrated Technologist IP language programmer who works directly with the software and Operating Systems for both iPod and iPads.  I spoke with him about my earlier dilemma and asked him if I had made the right choice given the reasons and what I wanted out of the product.  He diligently and patiently explained the features of both items and asked me what I specifically was going to use the product for.  He advised that my needs directed me toward the iPad and not the smaller iTouch iPod.  For those of you who have no idea what I am talking about, it's okay - I really had no idea either... despite my computer savvy technical prowess.  These devices allow you to work with a small sized (phone like or lap pad) in the same way you would a computer.  They have Internet capabilities, camera, email, photo, accessories and most importantly a whole wide world of applications - that I had no idea existed in the way that they do.

My main reasons for investigating and then purchasing these devices were to allow me to use them for Down syndrome advocating and awareness, along with any ventures that I attend such as Conferences, shows or for the Support Groups I run.  What I had no idea of until I got home was the wonderful world and impact it would have for my son.  At the end of the day, I purchased both devices and while it may sound self indulgent, it wasn't and I will explain why.

HOW the iPAD and iTOUCH help Hunter:

When I was in the store, I received the extra technical staff advice from a non-commissioned staff member who knew and actually owned both the iPod/iPad products.  The staff explained every single detail of use that I couldn't even imagine, and then some more.  While these items are great for Mommy and Daddy whether for business or pleasure, what they additionally also do for Hunter was the unexpected amazing surprise.

After getting home from purchasing both items I decided to browse the iTunes application store, which is a wonderfully (I would have said little but it is far from little) jam packed huge application site online.  There are applications for everything and anything you can think of which range from FREE to around $30.00. (The $30 is an unusual price since the majority of apps seem to cost 0.99 cents) depending on what you are looking for.  I must say though, nearly everything available has a free version (which fully works and is just "lighter") then the full version.  When I started searching, I knew of one application that I had wanted for over two years that I had heard so much about from one of the Ds Forums I run on MedHelp.  The application deals with Pregnancy and so while reviewing/searching for other pregnancy and baby related applications, I stumbled across several applications designed just for babies!  To give you an idea, there are at least 200 applications specifically for babies, if not more and at least 1/3 of them are free or have a light version.  I downloaded at least 20 of them immediately to try them out.  Once I got a taste of "baby applications", I was obsessed like a crazy woman!  I spent about an hour grabbing as many applications that I figured would be beneficial for Hunter.  To give you an idea of what's out there (for free) - The applications range from Baby Flash Cards for learning words, colours and animals, to spelling and other educations such as math or sounds, to playing piano and music.  As soon as I tried these various applications out on Hunter, he was happy and delirious with excitement, right away!  The iPads and iPods are touch screen operating systems which allow even BABY to touch and experience learning in such a fantastic way.  This device allows my son to directly interact with feel, sound and sight.  He is learning and having a tremendous amount of fun doing it.  My first example of it's use outside of the house was by accident on Sunday when we had to go out to the store and in our rush we forgot to give Hunter a toy to play with in his Stroller.  So, while John was busy getting a bite to eat and I had Hunter, I took out the smaller iPod iTouch which has nearly the same exact capabilities as it's larger sister the iPad and allowed Hunter to play his educational learning games on it.  Despite the screen being smaller, (I had to hold it for him) he still managed to pick the various animals he wanted to see and hear from an application called "Sound Touch lite".  This kept him happy, content and learning during a busy time of having to wait while out shopping and running errands.  To give you some other examples of some of the applications he has (and he has two different categories I made for him "Educational" and "Learning Games") I have downloaded "Rattle", "Sound Touch", "Piano Palls", "Baby Cards", "Flash Cards", "Colour Match", "My First Words", "ABC's & Animals" just to name a few.

I further decided to check out the applications store to see if there were any actual apps for Down syndrome (or under that heading) and while there wasn't much I did find some good things like "growth charts", "medical applications to store info for the doctors visits", and one very important application which I feel is great for any parent who has a child who isn't vocal or has difficulty with communication called, "Tap to Talk".  This application allows by picture and word for a child to press to communicate.  The free version, while it has limits in the amount of areas to tap, allows a non verbal child to let you know that they want something from the areas of meals, play, grooming, go, drink, emotion, and bathroom.  Each area of communication has single pictures that define either a single word or a short sentence such as, "I am hungry please" or "I would like a snack please."  I know that many parents who have children who have limited communication rely on methods like this to speak with their child or for their child to speak to them.  I felt that this application was ingenious in that it allows for the child (younger or not) to communicate pretty independently which can give them a sense of personal accomplishment and ease.  This is just one example of how this system can work to help a family with a child who might have special needs. 

Now, I realize that many people might be thinking, is Sandi kidding?  Doesn't she realize not everyone has the money to spend on such things?  Of the many things I try to do here on my blog is to pass on good resourceful information that can be used or obtained by just about anyone.  These devices are no exception.  Having a child with special needs does often entitle you or your family to get things that will help your child live a life that is typical.  In Canada and the USA many parts of your Income Tax, (in the area of Disability Tax Credits) allow for you to write off personal expenses which are incurred to help your child with Development.  For example in Canada, any item which will be used for the personal development (that can be proven either by medical need or intervention for development, ie learning tools) can be used as a Disability write off toward your income tax.  For more clarification and what is allowed, please speak with or consult with an accountant or specialist in this area before purchasing any items.  But most often, so long as the need can be proven and you maintain your receipts, (you can use an accountant such as H&R Block as an example to help with doing these) you should be able to get the money back at tax time.  So, while the cost might be upfront and out of pocket for a period of time, the thing is that often it can be recuperated at tax time.  While this isn't my ideal way of purchasing the things I want for Hunter's development, it certainly makes me feel better knowing that some/most of the costs or expenses that I additionally put out for his betterment/development can be recuperated.

Getting back to the product itself and its applications, all I can say is when searching for applications, just like searching the Internet, the more creative you are with your search, the better your results will be.  Searching for Down syndrome might only yield 3 applications but searching topics like, "developmental applications" or "learning" or more specific like "speech tools" or "sensory applications" will also yield different and more results.  And back to basics for things that might be helpful such as "medical" or "genetics" and things like specific helpful tools for yourself or child like, "growth charts" or "Vaccination keeper" and "Medical records or reports" can also be helpful.  AND, yes other then applications these devices also have several utility applications such as the everyday calculator to a personal level for hanging pictures!  There are several navigation applications to help you find your local branches ATM, favourite restaurant or even the various movie theatres.  Of course there are the many games and entertainment, but there are many e-books, magazines for those who like me don't play video games on these things.  If movies are your thing, you can choose from every movie out there or something called Pod-Casts, for different TV or other style short episodes.  My point is, it would seem that the i-World is limitless for now!  I can even turn my iPad into a remote system for accessing my home computer, or use it to turn on the various electrical equipments in my home.  If you can't believe that one, believe it.  What you thought was only limited to the television and movie world of Star Trek (my all time favourite TV shows and movies) is now reality.

So, what's the cost of these things?  While I am sure you could get them for less either on eBay or Kijiji for example, the actual retail pricing depends on the memory size of each unit ranges.  For example an iTouch iPod (non phone) 8 gigabyte is $249.99 to 64 gigabyte at $429.99 and a 32 gigabyte in between.  The iPad (the larger tablet) also ranges depending on size of memory with the lowest model 16 gig at $549.99 to the highest 64 gig WiFi & 3G version at $879.99.  Yes, they are quite pricey however I guess you have to realize (which I did not at first) that they are small compact complete computers that you could literally put into your pocket.  So, if these products are not realistic for you to purchase at the moment, I would certainly say they make a great idea of what one could ask, for Christmas.  Collectively if you have a group of family members struggling with what to buy for you or your child, why not let them know that you are wanting to purchase something like this for Christmas or a Birthday and gift-cards for the store that carries these products would be a great way to help you get this.  Certainly unless you have an extremely wonderful doting grandparent of your child who would buy one of these devices just because, most of us have to pool our resources together to get things like this.  So, a few gift-cards would probably go along way to help toward getting one.  It makes a great item for that "wish list".


Image of iPad:

Senses what direction you hold it and turns the image/application for you for convenience.
Image of iTouch iPod:

Also rotates and can flip to a sideways or landscape view for applications or video.

PS - One last thing I wanted to mention on this topic.... I discovered that the Internet Browser "Safari" which is specific to Apple, while perfectly functional like any other browser for Internet exploring - Doesn't support "Flash/Java" on either product.  What does this mean?  Nothing really that can't be overcome, but I had no idea that "Safari" users who are on either the iPad or iTouch do NOT get to see my wonderful background on my blog.  While they can read everything and see all the images and video, (which is the most important content within my blog) I had no idea that those few users who view my blog through these devices can not see my lovely constructed and designed background.  I may actually work on changing my blog background so that everyone can see a pleasing background image, but as I mentioned - there are many applications out there in the iTunes application store that I can try (for 0.99 cents) which would allow me to see "flash" and more specifically my background in my blog.  Not sure I will spend it to see my own background, but knowing that some people out there using iPod/Pad to see my blog don't get to experience the full effect of my site, makes me - well, sad!  So, I am considering a background change in the near future.

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