I am.......................FIVE!

Today is World Down syndrome day.  It is a day when people try to raise awareness about trisomy 21. 

 Last week our family went skiing in the mountains.  While K & I were waiting in line to buy a lift pass the lady standing next to us asked me a question that I hear often.

"How old is she?"

I am often asked this.  The people inquiring recognize her extra chromosome.  I'm sure they are genuinely kind & well meaning.  I know that they look at my sweet K & think she's adorable & just want to start a conversation. What bothers me is that it is very rare that they ask the question of K herself.  My daughter is judged on her ability to have that conversation before she has even opened up her mouth to speak.  If she had 46 chromosomes would virtually everyone address that question to me?  I don't think so.  My other kids got asked this same question & proudly answered  while holding up the appropriate number of fingers


My response?

"K, this lady would like to know how old you are."

As always K proudly held up 5 fingers & announced " I'm five."  ......................& as always, the conversation continued.  As we waited for our turn they talked about skiing, school & lots of other things that five year old girls enjoy. I hope she was able to change that lady's perspective that day.

Later that day as K negotiated a curve on the ski hill bundled up with her face obscured by her balaclava & helmet, a snowboarder went by & called out "Great skiing!" to which K responded with a thumbs up.  Later, a ski patroler passed us on the hill & applauded her efforts & told her she was doing a great job.  With her face covered, neither had any idea that K has trisomy 21. They spoke to her, not to me, but to K herself.

This is just a small example of how K is sometimes treated differently because she has trisomy 21.  While no one is intentionally trying to segregate K, that is what is happening. 

There is a man with Down syndrome living here in Canada who did a neurodevelopmental program just like we are doing with K.  He excelled in school & went on the college where he graduated with his typical peers in his field of choice.  He can't get a job.  He even successfully completed an internship but although he did well he has not been able to get a job in his field of choice. It is assumed that he can't do the job well because he has trisomy 21 so time after time he is passed over.


Amongst our local community of family & friends K is treated just like the other kids & I am glad for that. I think my little girl is changing a lot of the perceptions about trisomy 21 locally & I am thrilled but it needs to happen on a larger scale.

Awareness is important but I wonder if there isn't a better way to go about it.  If people with Down syndrome were treated with fairly & with the respect that they deserve then would we need to have awareness campaigns?

One national Down syndrome organization announced that they were celebrating World Down syndrome day by wearing "odd socks".Thankfully they have changed that to Lots of socks which is an improvement but is that really they message that we want to be sending? Really, what message are they sending?  I haven't quite figured that out yet.

The other thing that crosses my mind often is that the other half of the problem is that most parents of children with trisomy 21 probably aren't even aware that we don't have to "wait for our kids to accomplish milestones in their own time".  There are things that can be done.  The progress my daughter has made due to her neurodevelopmental program is phenomenal! I know of other kids who are seeing fabulous results through a targeted nutritional intervention.  This information that needs to be shared! We need to create awareness of the possibilities for our kids with trisomy 21.

Right now, life is sometimes overwhelming with K's intensive neurodevelopmental program, farm life, my part time business & our older girls sports activities.  Besides my blog & the Unlimited Potential forum I don't have much extra time to devote to this so for the time being a lot of my advocacy work will  be done like I described above.  Eventually I hope to have more time to devote to this but for now, one person at a time I will let my daughter speak for herself.

The International Down Syndrome Coalition has created a video for World Down Syndrome day. The theme is "I Am". I chose today not to do an "I am" post created for K but if we ever meet in person I will allow her the oportunity to tell you for herself:

" I am Five!........................& whatever else ends up being the topic of interest in a five year old's conversation that day.

Enjoy the video

I am so Proud of this Kid!

K's skiing has come so far this year.

K skied a long green run in the mountains today.  So long bunny hill!  K rode the chairlift up to mid mountain today! I did use a harness but  honestly it was for my benefit, not hers.  Remember this post? I have however quit using the harness on the bunny hill......................even when she goes on the bumps at one hill we've been to recently.

  This video is from yesterday skiing around some cones at our local ski hill.   

Potty Training

I had a question from a blog reader about potty training.  I have to admit that although I successfully potty trained four kids, I really don't have a lot of ideas as all of my girls learned fairly easily. This subject isn't fresh in my mind either as it has been almost 3 years since K was potty trained but here are some of the things that I think helped:

Although we considered potty training readiness & waited until we thought K was ready, some things we worked on earlier such as:

We talked about bodily functions when she was really little & explained what was happening when she went.  We also used proper body part names so K would understand the terms associated with potty training.

Once we thought K was ready, I created a potty training story book with her as the star of the book.  In the book we talked about all of the steps to successfully using the bathroom including dressing, washing hands after including the hand washing steps, etc. Later we included pages with family members pictures saying how proud they were that K was using the potty.

I did read up on the 1 day / 3 day potty training method & followed some of those ideas although some of the concepts just seemed a little harsh to me (I'm such a softie:). Based on an idea from that method we did try to set aside some time to be able to be very consistent at taking K to the potty & tried to encourage her to drink lots of fluids in order to give her lots of opportunities to practice.

Once we got started we tried to leave K in panties except at night time & rare occasions when we just couldn't chance an accident. We wanted to be consistent & our expectation was that she should use the bathroom now so we didn't want to confuse her by switching back to pullups or diapers.

We tried to be matter of fact about accidents & spoke in a positive manner about what we expected from her.

We gave K the opportunity to help with dressing, choosing panties, which bathroom she would like to use etc, so she felt that she had some control.

We purchased this potty. K loved the fact that it played music when she went & was more motivated to use it.  

Some families have success with sticker charts but K was not at all motivated by that method. 

That's all I can think of for now but here are a couple of links from some forums that give lots more ideas:

Here is a discussion with some ideas on Potty Training

Here is a potty training discussion on forum that has some parents of older kids with DS.

Please feel free to add any potty training tips you have by commenting below.  Thanks & good luck!

What is a Hero?

Recently in the news headlines was a story about a waiter who stood up for a little boy with Down syndrome after another customer in the restaurant made the comment that "special needs children need to be special somewhere else". Michael Garcia, their waiter, refused to serve that customer & they left the restaurant.

The stories, like this one, have come up time & time again on the internet, Down syndrome forums & on Facebook. The other day I punched the words "Heroic waiter boy with Down syndrome" into google & was instantly rewarded with 211000 hits. My first reaction was "That's nice, the waiter did the right thing" but as the week went by & the stories, kept coming up I found myself stewing about it.


Michael Garcia did the right thing - he stood up for a fellow human being who was being treated fairly. What bothers me is that this simple act of human decency is being treated as a heroic act simply because the little boy named  Milo has Down syndrome.

Again, what Michael did was totally appropriate in my opinion but hero is the person who goes above & beyond what is expected to do the right thing. Someone who does something the average person wouldn't do & wouldn't be expected to do, perhaps even something as drastic as placing their own life in danger.

If we expect our kids with Down syndrome to be treated appropriately I think we need to expect that treatment for them & they need to expect that treatment for themselves. People who stand up for them aren't heroes.  They are decent people who are behaving honorably & isn't that how we should behave around everyone? Most importantly, isn't that what our family members & friends with disabilities should expect? That they should have the same respect from society in general as everyone else would expect?

Michael Garcia isn't a hero in my opinion & we shouldn't be celebrating this as a heroic deed needing applause & accolades.  He is a good man & while we should be appreciating that he did what was appropriate but this shouldn't be unusual enough behaviour to make a news story. Everyone should feel outraged when another human is treated this unfairly  & we should also have the guts to act on it.

............ to Michael, if you ever chance to read this, thank you.  You did a good job.

To the customer who started this with his mean, bullying words, I hope the public outcry has helped you to understand how wrong you are & that you feel the shame that you rightfully should.


After I wrote this, & before I decided whether it would annoy too many people & if I was going to post it or not, I stumbled across this post on Dave Hingsburger's blog entitled Rolling Around in my Head which I read occasionally. 

Wow - he made a good point.  I don't always agree with Dave but I often do & he always gets me thinking which is great. I wrote a post entitled I am my Daughter's Voice about a year & a half ago & addressed the fact that although my daughter couldn't stand up for herself yet that eventually when she was old enough that I expected her to do so as well as to stand up for others who aren't able to do it themselves. There  will always be some people with disabilities who aren't able to speak for themselves & that is when people such as Michael Garcia need to speak up but its also when you & I need to speak up & one day when K is old enough I expect her to speak up too.  Not because we are heroes but because that it simply appropriate thing to do because people with disabilities deserve respect.

I'd love to hear your comments on either my posts or Dave's. 

"Watch Me Ski Mom!"

K has been on skis for a few years now. The first year we just let her have fun gliding down & getting her balance. Last year we started teaching her to turn & stop as well as how to get on & off a rope tow & magic carpet.   She has had a few lessons this year & is coming along well with her skiing.  We plan to let her follow in her big sisters footsteps next year & will register her in our local Nancy Greene ski league program. It is a learn to skis program which does include ski racing but the main emphasis is learning to ski & having fun. She will be taking lessons twice a week & start her ski racing career which she is very excited about. She is already anxious to move on from the rope tow & head up the big hill!  Patience my child,  first we have to solidify your snow plow stops & turns:)

Riding the magic carpet at another ski hill while her sisters raced last weekend.

Riding the rope tow

Coming off the magic carpet & skiing down - but not listening to her Mom when told to make stop. K thinks its fun to just go straight down without stopping lately but is learning to do a pretty good pizza (or chocolate pie) stop when she decides to listen:)

& here's that elusive pizza stop in this next video.  For some reason K thought it was funny to put her hands on her boots while stopping. Maybe because that's how her ski instructor taught her to snowplow? Anyways,  my phone battery died shortly after I took this video so I couldn't get a better one but you can see her nice little snow plow stop.

For those of you who read my last post on skiing, you may have noticed that K is now skiing without a harness.  We are still cautious because of her AAI concerns but are trying to give her a little freedom while still being careful.


Has anyone else got a ski bunny?

Fun Fine Motor Activity

A friend gave me these sheets quite a while ago. I'm not familiar with the program these sheets are from but the writing on the bottom right says Do A Dot Art. We've been photocopying them so we've gotten a lot of use out of these sheets.  Initially, when K was younger we used bingo dobbers to do them. K is working on printing now though so they are a little too easy so we decided to use them for fine motor skills instead.

K placed some glue on a spot on the paper then used the tweezers to pick up a pompom & put it in place.  We are always looking for new & fun activities to do with K so it was nice that this activity was a hit.

Finding the Right Motivation

Sequential processing is an important part if most neurodevelopmental programs. We play different games to help K develop her memory. Sometimes we have her do a series of actions while other times we may do an activity like have her repeat words back to us.

K will do a series of actions but has been refusing to repeat words for quite a while. We figured out a new game to get K to do it tonight.

When she was little & we were walking with her holding 2 peoples hands she liked us to swing her between us. At the time to encourage speech we had her say "123 go!" first. Tonight she wanted to do this again so I told her okay but say "5931". I repeated this several times & each time she easily got 4's. By the time we walked to the mall I tried 5 words & she got it first try! I guess we'll be doing a lot of walking & swinging from now on!

What activities help motivate your child?