"Twinkle Twinkle Little Star"

Last week my friend was over visiting with her 2 boys.  The 18 month old cuddled up with his blanket on his mom's lap & snuggled up to go to sleep.   The quiet was broken as K began to sing "Twinkle Twinkle little star".She sang the song twice before wishing him sweet dreams, just like I have done many times for her.

Up Up & away..................

Over the last few months, since I started my blog, I have noticed a number of times, that people have found my blog (or probably went looking for it) by googling "up, up & away with Down syndrome"  I'm not complaining really.  I really appreciate that they were interested enough to search for my blog.  I just can't help but think about how that sounds -  the "away with down syndrome" part.  Again, I'm really pleased that people are interested in my blog, but I just felt that I should let everyone know what I was thinking when I chose that name.

I don't want to do away with Down syndrome, but I want to give my daughter the ability to overcome the stereotypical limitations that this condition has traditionally put on people.  I want people to know that she has Down syndrome, and that she is this incredible person - I want my daughter to shatter people's expectations.

 Most of you who have been reading my blog likely realize that I have very high expectations of my daughter.   What I was trying to do when I chose this name was to say that the sky is the limit for my daughter.  I refuse to put limits on her & I refuse to have anything but the highest expectations.  And one day, as I fight back tears from a tumultuous mix of emotions - proud, happy, sad, all at the same time, I fully expect her to wave goodbye as she flies up, up, up & away and towards a new and independent life.

Jumping Into the Pool & Conquering Her Fear of Heights!

This video is of K jumping off of the top step of the ladder into our pool.  It was actually taken a couple of weeks ago, but I've been so busy that I'm just now getting around to posting it.  It is not so much her abilities in the pool that makes me proud when I see this video.  It is the fact that she has had a fear of heights for about 6 months which we have been trying to help her get over.  K has enjoyed climbing the whole time, but has had to feel secure about her footing & would not have jumped previously.  She has obviously been working hard & improved a lot. It was her own idea to go jump off the ladder & I'm glad I had my camera there because usually I never catch these sorts of moments.  You can tell that she was a little nervous as she jumped but you can also see how proud she is of herself by the little delighted squeal after her head bobs up to the surface again.  

LeapFrog Tag Reader

K go the the LeapFrog Tag Reader for Christmas last year, but for some reason, I have found it incredibly difficult to load the books onto the pen.  She has only been able to use it for the Ozzie & Mack book that came with the set.  Finally, it worked the other day! I was so excited to be able to load all of her books onto the pen. This is what happened:

 

 

After almost 9 months of reading the books without a pen, she no longer had any use for the it! Gotta love technology:(  I am going to keep trying though.  I bet that if one of K's big sisters likes the pen that she may take a new interest in it:)!  

My Energizer Bunny!

It's 12:02 as I am writing this, my  husband is driving, & K is sitting in her car seat reading "Moo, Baa, La La La" we are on our way home from a wedding, dinner, & dance.  The wedding dance started at 9pm, & K danced until we dragged her off the floor.................twice actually:).  Most of the year, we have a scheduled bedtime, & stick pretty close to it most of the time, but summer we tend to be much less structured & this last week has been so busy that I don't think K has seen her bed before 9:30 pm once!

12:11  - Midnight lunch wasn't enough, so K is having a very quick snack before bed.

12:19 - snack finished, teeth brushed, just finished saying our good  nights.

12:20 - Out like a light!


Some days I think she could outlast the Energizer Bunny!

.....................I sure hope she sleeps in again!

I Am My Daughter's Voice

Recently, a movie was released called The Change Up.  I have not seen it myself, & will not be going & I hope that my family friends, & readers of my blog will join me in boycotting this movie.  Although I haven't seen the movie, I've heard numerous reports about one particular scene. I am not quoting the scene word for word, but basically one character asks about his friend's twins & why they are not talking yet.  Then he asks" Are they retarded?  This one looks a little downsy"

Why is this funny?  How is it a joke to make fun of a group  of people who often can't defend themselves?  Why is it OK for Hollywood to behave like an obnoxious, pushy brat on the playground?

As parents, friends, & loved ones of people with developmental delays, we need to stand up for our loved ones.  It is not OK.  Any other group being discriminated against in this way would create such an uproar that the word would fall out of general use. 

At the age of 4, my daughter does not understand about the "R" word.  Until she does, I will be her voice.  I have spoken out many times to help people realize why they shouldn't use the "R" word, but today I am putting a promise in writing to my daughter.  I hope you will join me in promising your loved one that you will stand up for them as well.

My promise to my daughter:

I will be outraged for you.

I will be strong enough to stand up & say "You cannot treat my daughter that way!"

I will gently correct our friends & loved ones who don't understand the true implication of their words.

I will explain to strangers why it isn't funny to make fun of those who are often unable to defend themselves.

My precious daughter, when you are old enough to understand the implication of this word, I will help you learn how to stand up for others who don't have a voice.

Love you,

XOXOXO

Mom


I am adding this footnote a few days later:

Several times, when politely explaining to people why they shouldn't use the "R" word, they have responded the they don't consider K to be MR, so they didn't connect that word to her at all.  I don't consider K to be MR either, but think about it - does that mean really OK to make fun of others who they do consider to be delayed?  Grrrr................ 

At what age did K first start reading?

I am not a good record keeper & lost track of how old K was when she started reading.  The other day I stumbled on the post I wrote on a forum when K was 15 months old. I copied it here:

K is 15 months old.  I have been doing a reading program since she was about 6 months, however it has been much more organized since I discovered the Little Reader Program.  I have never tested her before today.  We tested her with about 10 different word cards.  She got every one right!  K has down syndrome.  Thirty years ago I would have been told to put her in an institution because she was unteachable ( I could never have done that).  Even when she was born I was given old & outdated information about her potential.  I admit I had never heard of teaching babies to read a year ago & would not have believed she could do this.  The sky is the limit for my little girl!  Thanks to every one here for all the help and information & for a place to come to celebrate with others who understand.

Thanks again from one proud Momma!

Wow!  I'm glad I found this again!

Videos of K swimming

I am amazed at K's swimming progress even in the last week! I have always considered gross motor to be the area that K has to work the hardest at and while I am careful never to place any limits on her, I admit that I didn't predict her to be doing so well with swimming already. We live in a fairly cold climate  & although we have a 12 X 24 foot pool in our backyard, it can only be used for about 2 months per year - 2.5 months if we are lucky!  My older girls can all swim now, but they really have had to work hard at it and were on average around 6 years old when they learned to swim because, besides a couple of months in the summer, we don't get to a pool often.  K loves swimming & is really trying hard to keep up with her big sisters. These videos really show what determination can do!

These videos were taken yesterday afternoon of K showing off her recent jump in swimming skills. Her big sisters all enjoy diving for rings at the bottom of the pool, so of course K joined in!

The 2nd video is of her swimming a little further, coming up for a breath, then collecting some diving rings off the bottom of the pool:

Wonderful, Very Informative Post on Oral Motor Therapy

This is a link to an awesome blog post written about oral motor therapy. It has so much information all in one place - all new moms (& anyone else working in oral motor issues with their kids) should read this:

http://bitsofreallife.blogspot.com/2011/08/oral-motor-therapy.html



 I should also mention that there are a few words used in this blog post that you won't find on mine;)
Don't let that stop you from appreciating the information in this article & the amount of research that went into it.  The author is an awesome mom who is doing a great job with her adorable little guy!



And make sure you read the Talk Tolks article called The Oral Motor Myths of DS that she talked about. I've mentioned it before on my blog it is one of my favorite articles & is well worth repeating.

Here it is - 3rd article from the bottom of the list:

http://www.talktools.com/s.nl/it.I/id.20/.f

Swimming Lessons & Random Thoughts About Stamina

K did awesome at swimming lesson this week  She passed her level with flying colors.  And no......i didn't tell them she had DS when I registered her.  She is a more advanced than at least 2 of my older dd's at this age & I really didn't think it was relevant. As it turned out, she was also one of the more advanced kids in the class & was a willing participant in all of the activities...... well, except for getting out of the pool at the end of each lesson :)!


I have read a number of times that kids with DS do not have as much stamina as typical kids, but K's stamina really impressed me this week. 

We registered for the "cram session" of swiming lessons.  This means that we crammed 2 weeks of lessons into one. It is always a long week & my older daughters's were/are always exhausted afterwards.  K was in the pool at about 9:30 for her first lesson.  She had a 1.5 hour break & then was back in the pool for her 2nd lesson of the day.  In between lessons, she had a snack, then played on the playground.  We came home, then after lunch most days she went outside to play & was generally very active.  She went to bed at her regular time all week & although she hasn't napped since she was about 2, I had anticipated her needing one this week.  Of course she proved me wrong & didn't nap once during the week!

Swimming lessons ended on Friday & we had tickets to a large outdoor music festival which meant leaving home first thing Saturday morning.  I debated about not taking K because her week had been so full already but ended up bringing her along because she had enjoyed it so much last year.  We had a wonderful time listening to music, & enjoying all the exhibits & activities like the bouncy house.  K enjoyed every last minute & only fell asleep once the final fireworks were done signalling an end to the evening.  Now that is stamina!

Drug Trial for Down Syndrome

This is a link to a study on a drug that may possibly help with cognition in people with Down syndrome.

I find this intriguing, & although I am very interested in helping K to learn & become more independant, I won't be first in line with a prescription. All drugs have side effects & I would have to research this very well before I made a decision. If it turned out to be very safe & we felt the benefits outweighed any side effects, then we would likely try it, but again, I am very cautious & almost always treat anything with natural means first.  I can't remember the last time that I filled a prescription at the drug store. On the other hand, we would treat any other medical condition that developed, so why would we not treat this one?

I also believe in doing everything possible to help K to reach her full potential - who knows if anything will ever come of this or other research anyways?  Not only that, if there is ever a drug like this that can help, the further ahead she is to start with, the better.
Here is that link:

http://www.nytimes.com/2011/07/31/magazine/a-fathers-search-for-a-drug-for-down-syndrome.html?pagewanted=1&_r=3&ref=general&src=me

How to Teach Your Baby to Swim

I bought this book last year, and while I've read it over, I haven't really followed their program.  We really aren't in the pool all that often, so until now, I've just implemented some of the general principles. However, now that K is really excited about swimming & showing some real progress, I think it is time to look it over again.

This book is written by Douglas Doman who is the son of Glenn Doman of iahp.org who is the original creator of neurodevelopmental programs.   It is intended to teach kids from birth to 6 years.  This book is often  available on Amazon, but here is the link to find it at the the official IAHP bookstore - the Gentle Revolution Press:

http://www.gentlerevolution.com/mm5/merchant.mvc?Screen=PROD&Store_Code=G&Product_Code=0303&Category_Code=PhysDevSwim

K seems to think it is good breakfast reading material too!

Learning to swim

  

 We have an above ground 12 X24 foot pool in our back yard.  Although we have very strict rules about the ladder being removed so K can't get in the pool by herself, she has always been very good about waiting until she has her floaty on & has her sisters or myself to go in the pool with her..............until last week that is.  Since taking swimming lesson & learning to swim a short distance by herself in the pool, she is suddenly invincible.  After catching her climbing over the pump to get in the pool the other day & managing to get in enough for her leg to get wet, we now have a 6 foot chain link fence around our pool.  Confidence is usually a good thing, but this was too much - & a little scary!  I was so worried that I didn't sleep the night before we got the fence up & even got K up out of her own bed to sleep between my husband & I just in case she decided to head outside to the pool in the morning. She always comes straight to our bedroom when she wakes up, but you just never know.

 

 Going for a swim!

We are now walking the fine line between building confidence in a newly found skill & teaching her that she still has to use caution because of the danger involved.

The good news is that after swimming lessons, K will bob her head under water, float on her front & back,  & swim about 8 feet from the side of the pool to where I am waiting to catch her.

MonkiSee Action Words DVD review

Before I begin talking about the MonkiSee  Action Words DVD, I want to let you know that besides receiving the MonkiSee DVD to review, I receive no compensation for this review or any sales that may result. I am free to give my honest opinion on this educational DVD.

We have been enjoying the MonkiSee video for the last couple of weeks and first of all, I must say that I am so impressed with young Olivia who narrates the video. She does a wonderful job & this is obviously a strong talent for her.   K really relates to young people, so this was a plus for her also.

K loves all the videos of other kids & animals doing the actions & I appreciate that more than one video clip is shown to display the different ways each action can be performed.

 I like the way each word is presented on a blank screen in very large red letters first, before the video clip is shown. It is hard to miss & red is supposed to be an attractive color for the youngest viewers.  K has been reading words for over 2 years now & now knows so many sight words, that it is not surprising to me that she already knew many of the words in the video, but I am happy to report that she already knows all of the new words too!  I think most people buying this video would not have a child with such a large bank of sight words already, so there would a lot of educational value in learning the 30 words featured on the DVD.

The songs must be very entertaining for K, as she was singing along even the first time she watched the DVD & now sings them randomly throughout the day!

As  mom who encourages a lot of physical activity for my girls, I love the fact that this is about action words.  K spends 1/2 of this video jumping running stretching & crawling around the living room.

 

Walking!

 

K has very recently started getting choosy about the DVD's that she watches. I was pleasantly surprised that this is the only DVD she is asking for now.  I am certain it is not just because it is new, because I was given a 2nd hand copy of another very popular early reading video the other day which she watched once & now refuses to watch again.  She also seems to have pretty well outgrown some very popular sign language DVD's that she used to love.

This really is a very enjoyable & educational DVD & I am so glad to have a chance to check it out.  I expected that K would enjoy it but again, I have to say I didn't expect her to be so enthralled by it!  A big thumbs up from both of us for the MonkiSee Action Words DVD!

If you would like to learn more, here is a link to the MonkiSee website:

http://www.monkisee.com/

Laminating

Flash cards need to be laminated in order to flash them very quickly like this:

 http://downsyndromeupupupandaway.blogspot.com/2011/05/fast-flashing-method.html

Here are a few examples of different ways to laminate cards:

Packing tape Method

This method is the least expensive.  It is the most time consuming though & the finished product is  not nearly as nice.  Cards laminated in this way won't last as long & tend to stick a little sometimes. I also find it hard not to make wrinkles sometimes.

 

I just lay 2 long strips of tape across my kitchen table, lay the cards on top, then seal with another 2 layers of tape before cutting the cards out. 

Laminating Sheets

I purchased this at a dollar store.  It was inexpensive, at only $1.00, but the rolls are not very big, especially when you have to double it over itself to laminate both sides.  

I just laid all of the pieces cards out, cut the laminating sheet, & lay the rest over top & cut them out.

These turn out pretty good, but are a little more flexible & flimsy than regular laminating & therefore a little more difficult to work with.

Laminating

Laminating sleeves are easy to find at local department stores or stationery stores.

I bought this laminator at a local department store when I first started making flashcards.  It was the cheapest one that I found  because,at the time, I wasn`t convinced that babies could really be taught to read.  Am I ever glad I was wrong!  Although it was the cheapest laminator on the shelp, it is still going strong thousands of flashcards later!

Cards that are laminated in this way are the most expensive to produce, but they are really easy to work with & fast flash.  The cards flash quickly & don`t stick together. I also laminate home made books so they stand up to a lot more love & abuse:)

Here is just a sample of what this laminator has accomplished in the last 3 years!

Don`t be intimidated by the number of cards here.  It doesn`t seem like a lot when you are just doing a few at a time.