What it takes to make a reader.......................

My only hesitation with posting this pic, is that people will look at it & think "That's too much work".  Remember, this is a picture of 3 years of work.  We started out making a few cards here & there & weren't really dedicated until our daughter was about 18 months old.  Now that we are going through 40 plus cards a week, I write most of them out on an index card with a felt pen & it takes seconds per card.  My laminator actually gets time to cool off now! Most of these cards have pictures on one side & a word on the back because my daughter refused to read anything without a picture until quite recently. 

We really couldn't fit them all in our living room & kitchen!  This is most of K's cards, stacked in sets.  I couldn't get the cards from the last 6 months ago or so because we ran out of space - and we are going through more than 40 cards per week! The very large cards in the background are some of the very large cards we used when she was a baby.

Her adoring fans.....................

K lined up several of her animals & read books to them this morning!

The squeaky wheel........................

I don't complain very often, but after 5 months of waiting my dd was still not getting any speech (or OT or PT) therapy.  I think that the neurodevelopmental program that we started a few months back is going to make a big difference with this, but I don't like to leave any stones unturned.........so I became that proverbial squeaky wheel (I was polite about it though!).  It worked!  K will be starting speech right away with the speech therapist of my choosing.  It  will mean a couple of hours of driving to get an evaluation & program set up for the local person to follow, but to my knowledge, she is the best speech therapist within more than a days drive.........maybe a few days drive!  K will also be getting OT & PT through the same organization.  I am so excited!

I do  have to add that the local person in charge of K's IEP was NOT to blame for the lapse in services.  I respect her & appreciate her so much for all she has done for our school, community & children.

K's word cards

Because babies eyes are  not as well developed, we started with very large words.  We continued with this for a little longer than is recommended because K is nearsighted & has congenital nystagmus. It has only been in the last 8 months that she has had an accurate eye glass prescription - sometimes I wonder how she has learned to read as many words as she does!

The phrase in the picture above is the size we often use now, although she can read any print that we find in storybooks now & often she likes to read the back of the cards which has very small print like in the picture below or even smaller.

Time to hit the slopes

Look at me Mom!

Skiing  is hard work - Time for a rest!

Learning to Crawl - Crawling Track

By the time K was about 6 or 7  months of age, I had been reading a lot about Glenn Doman & his organization - IAHP. 
http://iahp.org/

Some of the stories of kids with DS on this program are pretty inspiring

I bought a few of his books including this one:


Which can be purchased here:

http://www.gentlerevolution.com/mm5/merchant.mvc?Screen=PROD&Store_Code=G&Product_Code=0206

In his book, Glenn Doman talks about not helping our kids to sit until they are able to get into that position themselves.  He also encourages allowing them a lot of tummy time & encourages teaching them to crawl on their belly & creep in a four point position as much as possible. This made a lot of sense to me.  Not only that, I could understand  how a sitting baby could play with toys you give her in new ways, but a crawling baby has a whole new world open up for them to explore.  In my opinion, they are stimulated in so many more ways & exposed to so many new & wonderful things by being able to crawl.



We took Glenn Doman's advice from the book & built a crawling track. Ours was a home made crawling track.  It looked something like this, only ours was a little longer:



Here is a picture of our crawling track.  I can't find my original & for some reason the quality is really bad.  Hopefully you can get a bit of an idea.  The frame is made of wood & the covering is naughahyde.  It is a little dusty in the pic & leaning up against the garage wall, but it gives you a bit of an idea.  The darker patches were for contrast to help with vision & stimulation.  Some people use the black, white & red infant stimulation cards for this, & I actually did try to place things like that on the wall beside where we had the track.

The crawling track was wonderful for helping K to learn that she could be mobile, a little earlier than she would have realized otherwise.  At first we raised one end of the crawling track up.  By keeping the track on an incline, K was able to use gravity to help her begin to move.  Before long, she would begin to move her arms & legs & inch her way down the track. As she became more mobile, we lowered the track until she was able to crawl when it was sittingflat.  We were so excited the day that she crawled off the track & just kept going!  She was only 8 months old! 

K soon became very proficient at crawling on her belly, & by 12 months of age, she was crawling in a four point position & even pulling to stand.  Although she was pulling to stand, we encouraged her to crawl, not to walk & gave her every opportunity possible.  While on a family holiday when she was 14 months, we allowed K to crawl through museums, parks, beaches, etc.  I'm sure we horrified some first time, or germ concerned mommies, but K got tons of exercise & stimulation.  I did find myself washing her hands about every 5 minutes though & thankfully she never caught any type of cold or illness over it.

If you have any question about how we made our crawling track feel free to ask in the comments or just check out the Physically Superb book.  Also, there are a few videos on You Tube that you can check out.

This blog has a great crawling track tutorial.

9 years later! My breastfeeding Story.

I finally don't have a breastfeeding baby, so I added it all up the other day.......................I have breastfed 4 babies for a total of about 9 years! This close to 1/4 of my life!  Wow! I have seen other ladies post about earning their  bronze or golden booby awards.............I would love to know what 9 years (3.5 with my youngest) has earned me!

Before I launch into my breastfeeding story, I want to say that I do understand that not every baby can be breastfed, especially those with complicated medical problems.  However, please don't let anyone tell you that your baby can't do it. Unless your baby has a medical problem that truly prevents them from breastfeeding, it is worth a very determined effort. I have heard many stories of babies with DS that struggled for a long time, but had determined moms that kept offering & their babies finally learned at 4, 6, or even 9 months of age.  Don't give up!  In the mean time, pumped milk also offers many benefits.  This article by Sarah Rosenfeld Johnson  will be helpful in avoiding some of the problems babies with DS may experience.

 The article is called: The Oral-Motor Myths of Down syndrome & can be viewed here:

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

For babies with DS, I truly believe breastfeeding is even more important than with typical babies.  I'm sure it has been another of the key factors in K's speech development.

One thing that I have learned as a mom, is that every baby is different & a mom really has to adapt to each baby's needs. When my oldest dd was born, I was very determined that she would breastfeed.  Luckily, she was great at nursing & taught me a lot.  It was my 3rd baby that I struggled with the most of my 4, but I am thankful to have had that learning experience. By the time K was born, I had a lot of experience with various breastfeeding problems & was a lot more prepared than if she had been my first. 

K was very sleepy as a newborn.   This is common in babies with DS.  Thankfully she had  very good

suck -swallow coordination which helped a lot.  In the early days, she could not stay awake long enough to get a full feed in.  We all know how beneficial breast milk is & my natural stubborn streak kicked in at full force, & I was determined that this baby would be fully breastfed.  Besides, being an experienced mom of 4 kids, I still had no clue how to give a baby a bottle:)!

The first few days were difficult.  Her wakeful periods were so short that she just couldn't get enough & we'd spend the next hour or so trying to get a few more swallows in.  Finally, the wonderful, & wise grandmotherly nurse who was the go to at our hospital for nursing problems, came up with an idea.  This is a very rural hospital & I'm not sure if they even have a supplemental nursing system (commonly known as a SNS) as in the picture below:

Instead, we used a syringe attached to a very tiny tube & as K nursed, we slowly injected additional, pumped breast milk.    Because she got a lot more milk with less effort, she was quickly able to get enough in this way. As she became more wakeful over the next couple of months, she was able to fully breastfeed & I gladly put the breast pump away.

I was lucky that this was all it took to get K nursing.  I know it has been much harder for many of you & I applaud all of your efforts. To those of you reading this who are still expecting or have a newborn, check out this site it has some wonderful resources:

http://downsyndromepregnancy.org/breastfeeding-experts/

This is a link to post  on breastfeeding - the comment section will be helpful. You will find many other interesting topics on this site as well.                                                                                                                                    

Effective communication

I am thankful that K's speech is getting to the point that she can tell me about past events.  This has been one of the nagging worries I have had since my daughter was very little.  I worried that if something happened to her when a family member wasn't around, she wouldn't be able to tell us what was wrong, or if someone was teasing her she wouldn't be able to tell us, or that she wouldn't be able to tell us enough details if she was sick or hurt, & numerous other things for which speech is so necessary.  Today she got scratched by our cat. It was a minor event, really, but I was so relieved that not only could she tell me that her head hurt, but she was able to say that the cat did it.  This would be such an insignificant thing for me to hear from most 3.5 year olds, but after all of my past worries, it was such a relief to really hear her explain the events that had just unfolded.  She has been doing this for a while, but today she explained so well that it really put my heart at ease.

Reading World Monuments

This video of K was taken in the fall.  She was almost 3 1/2 years.  We used a lot of word cards with pictures on the back to keep her attention as she is only very recently interested in reading word cards without pictures.  At this point, she knew so many words that were nouns, that we had to look a little further to find words words to teach her that still had a picture.  Thankfully, she will now happily read words just printed by hand on index cards or on the computer with the Little Reader program.  With the number of cards we were going through each week, the cost of ink, card stock & laminating materials was going through the roof!  We still do cards like this now, but just for fun.

This is what happens...............

This is what happens when I don't put K's flashcards & reading books out of reach. 

This is a bunch of cards that I left sitting on the stairs to go up to K's bedroom.  This was last night while I was making supper.

This was in her bedroom later, while I was putting her laundry away.

This morning again (I had picked up them up after last night's enjoyment!)

The kitchen floor - before breakfast

This took less than 10 minutes!

I usually keep a small number of cards out for K to look at whenever she wants.  I'd love to have them all available to her because she enjoys them so much, but I would be constantly cleaning up after her.  K is expected to help clean up, although she has trouble getting the elastics back on the sets of cards.  We are going to have to get in the habit of teaching her to look at one set at a time & put them away before reading the next set.  This sort of strategy hasn't worked with my older dd's yet, but I can always dream right?

The point of this post is to show how enjoyable reading & books are to K.  She is very sure of what she likes & dislikes & we could never force her to learn.  I admit that I used to think that flashcard learning could not be fun.  Wow!  How my mind has changed!

My views on sign language

This is a response that I wrote on the subject of sign language.  I have copied it here because it pretty well summarizes my views on sign language.

When we first heard of sign language for babies, my older daughters were already too verbal to bother, but we were able to sign with our typically developing 8 year old when she was a baby. We probably only taught her about 30 signs, but she realized that she could communicate at an earlier age. We always thought our oldest 2 talked a lot, & talked well for their ages ( & they probably did) but WOW! can my 8 year old talk! She was speaking in complete sentences by the time she was 19 months old & even at 3 or 4 years it was very noticeable that her language was quite advanced for her age. Now at 8, it is not quite as noticeable, but if you listen you can still tell that she has a really good grasp of language for her age.

4 years later when our dd was born with DS, we got started signing right away. From a few months of age we started doing neurodevelopmental type exercises, reading program etc with our dd. The neurodevelopmental view on signing is that if your child has the ability to be verbal, you should work on that, not sign language.  It is, however, one of the few things that I'm not sure if I agree with.  It is one of only a couple things I'm not sure I agree with, however, signing just seemed right & I really believe in following my instincts.

We were much more dedicated at teaching K sign language than we were with our older dd. We discovered & bought Signing Time DVDs & started frequenting the signingsaavy.com web site to supplement our knowledge. I did worry that we were teaching her too many words though because she had well over 300 signs at last count ( the rest of the family probably stalled out at only about 200). I was concerned that we were giving her too many signs so it wouldn't be necessary for her to speak verbally. Her verbal speech seemed to progress quite well though, so we continued to allow her to learn new signs. Thankfully our instinct was right for our dd & we saw the same gradual progression to language that we did with our older dd. She is now 3.5 & often uses 3 or 4 word sentences to communicate. I lost track of how many spoken words she had by 2.5 years of age. Shortly after, by age 3, she had pretty much quit signing.  It is rare to see signs now, & they only come out the odd time that we just can't understand a word she is saying. I give huge credit to Kassie's early reading program in teaching her to speak also, however that would be a whole new (long) post in itself! Oh, & that big sister who doesn't stop talking also had to be great speech therapy!

Update at age 4:  K does not use sign language at all to communicate now.  The only time she signs is if she is doing it for fun & even that is rare.  She has also recently decided that she doesn't care to even watch Signing Time DVD's anymore...........my baby is growing up!  I'm going to have find the DVD's a new home.

Sign language really went hand in hand with teaching my daughter to read as well as speak.  Although we tried very hard not to test when K was reading especially when she was very little, it was always wonderful when she would sign the word voluntarily.  Signing Time videos were great for reading help too.  I didn't even pay attention to the words myself, maybe because I was focusing on signing & at the time we were only doing homemade, laminated, flashcards, but I later realized that K knew all of the words on her Signing Times videos as well as the signs.  
If I were to do it over again, I would definitely sign. I don't think it is necessary to teach nearly as many signs as we did, but teaching the basics such as eat, drink, more, & all done can really open up communication. I can see how some kids could rely on sign & not speak, however I still think a few very basic signs would be helpful to a child who is not verbal at all yet. Not only that, most of us are already teaching our kids to sign whether we realize or not! How many of us don't teach our kids to wave bye bye or play "so big" or even learn actions to songs? Just another reason I don't think a handful of signs is harmful.

The 2 biggest reasons, I think sign is a great tool:

1. It gives children the ability to communicate before they are verbally able.


2. It teaches them that they have the ability to communicate



Sign language was a wonderful tool for us, but every parent needs to research & do what they think is best for their child. Mommy's instinct (& Daddy's) is almost always right!

Sign language links:

This site is an online sign language dictionary:

http://www.signingsavvy.com/search


Signing Time videos:

http://www.signingtime.com/

or in Canada:

http://www.signingtime.ca/

We also had a set of sign language flash cards - I don't remember who makes them, but they were very helpful too.  We would put them up around the house in appropriate location, such as putting the word eat on the fridge, diaper over the change table etc.

Onto the words!

This video of K reading words was taken at the same time as the previous video I posted.  I am still amazed every time I look back at my tiny little 2 year old reading.  Check out the sign language & the dancing too!

A Perfect Lily's blog - Pure Love Giveaway - Reece's Rainbow

I'm a little slow at getting this post out as I've been having computer troubles.  The giveaway ends today, but in case anyone sees this in time please check out this blog & consider donating.  If you donate, you can also enter for a chance to win some wonderful prizes!  Even if you don't see this in time, please consider Reece's Rainbow next time you have a few spare dollars.

The blog & giveaway:

http://babynumber10.blogspot.com/2011/01/pure-love-giveaway.html?commentPage=3

or Reece's Rainbow:

http://reecesrainbow.org/

Thanks,
Laura

This video was taken a few months after K's 2nd birthday.  She knew the alphabet before she was 2, however, because we really wanted to make sure that the early learning activities we did were always fun, we were careful never to test her. For that reason, I tried to take videos only when she was willingly & joyfully showing us her knowledge. We have always felt it was more important to take advantage of the moment that she was enjoying showing off her skills rather than have her turned off of reading because we pressured her to perform when we felt the moment was right.  This is also my explanation for the pony tail out to start getting ready for bed, wild  hair do :) !

Teaching K to read

One of the most beneficial, non mainstream thing we have done with our daughter with DS is to teach her sight words.  Today, on various DS boards there is occasionally talk of different programs to teach kids with DS to read, but just 3.5 years ago when K was born, I really don't remember reading this type of thing.  Thanks to all of you dedicated parents who are sharing your experiences, Downs Ed & other groups & individuals for raising awareness! 

In my hours of research after K was born, I was surprised to find a few groups of people on the internet that were teaching their babies to read, do math, etc. It was expected that kids with Down syndrome could do these things too. I have always had very high expectations from my dd with DS, however, it seemed so incredible that any baby, extra chromosome or not, could do any of these things. As weeks of research went by, I started experimenting a little & sharing these ideas with my husband. Again, this was difficult for me to believe.  I had never heard of starting to teach a child to read before they were 1 year of age & I didn't know a child that learned to read before kindergarten.  Eventually we took a leap of faith & jumped in.  K was less than a year old at the time, although she was closer to 18 months before we really got into a regular routine of doing flash cards.  At that point it was taking less than 5 minutes a day, we still thought it a very strange thing to do, but thought it would expose K to a wider vocabulary of words if nothing else.

K recognized the letters of the alphabet before she was 2

She read her first words out loud at about a month after her 2nd birthday

By 3.5 years she knew over 1,000 words & is now reading beginner level ( Dick & Jane) books independently.

All of this has made a huge difference in her vocabulary, pronunciation of words & even in general knowledge.  I'll go into more details at a later date, but I would like to post some videos of K reading first.

How it all started..........

The morning my daughter was born, I held her in my arms & looked deeply into her trusting & inquisitive, almond shaped eyes. I held her with the strenth, yet gentleness that other  mama bears will recognize in themselves occasionally -  a bit of the mama bear fierceness that I don't often need to feel.  I made my first promise to my newborn daughter that night.  I told her that one day she would amaze everybody.  I believed it with all my heart, yet I never imagined that  a short 3 years later I would be writing this post. I never doubted that she would show the world what an incredible person she would be.....but  I had no idea that I would be the one who is the most amazed.  I am in awe of my little girl.

K was diagnosed with trisomy 21, commonly known as Down syndrome, shortly after she was born.  I knew very little about Down syndrome (DS) at the time & spent hours researching treatments, & therapies. Some were mainstream - many were not. 

Our journey with our daughter is different than that of many parents of a child with Down syndrome.  At first I didn't share a lot about what we were doing, mainly because I was so unsure that some of the ideas would work. I have also found it difficult to finally start this blog & perhaps interupt our private lives.  Even though I have been on different forums and Down syndrome boards for over 3 years, & posted often, I have rarely shared pics online.  I think we have walked a bit different path though - & I feel it is time I started to share some of what we have done.