Mind Blown

Confession time: 

As much as I love and appreciate hearing about the successes and accomplishments of my friends' children, especially those with Down syndrome, sometimes it's hard to feel great about them all.

When I see the fully mobile kids running around, it's hard not to be a little bummed that Cora isn't quite there yet.  When I see videos and facebook posts of the kids Cora's age speaking so well, I admit that sometimes I don't want to click on the links.  I think it's wonderful, I do.... but seeing other children do what she can't yet do isn't always what I want to focus on.

So sometimes I get hesitant about posting Cora's accomplishments. 

Brag time:

But right now, I am so flipping BLOWN AWAY that I can't hold it in.   My girl can totally sight read!

I suspected that she may have learned a few sight words more than a year ago, when she started pointing to the words in Goodnight Moon instead of the pictures.  But then she stopped.  We've been working on some reading programs for a while now, but not always consistently. 

We got the iPad app, "Special Words" based on the See and Learn program for teaching children with Down syndrome.  We got it months ago and Cora wouldn't use it at all.  The child that has been able to correctly point things out in pictures for well over a year refused to play matching games.  But today I tried again.  And today it seemed to click with her.  After successfully matching pictures for some time I tried having her match words to words.  She got that.  So I skipped ahead to the hard stuff:  Having her match a picture to the written word.  Well, she did it.  Again and again.  After showing me 21 words with ease, she decided she was done.

And I was floored. 

I know that kids can learn sight reading.  I know that kids with Ds can learn.   And I know that Cora has been exposed to these words for quite some time, in so many different formats.  So it shouldn't be that hard to believe that she recognizes the written words.  But I am still in shock.

My 2-1/2 year old can sight read better than she can walk or talk, and that is just amazing to me.  I think sometimes I make the mistake of not recognizing how very capable she is, and a lot of that is probably due to making comparisons.  I know wholeheartedly that comparing her to typical kids is not only not very fair, but is not realistic.  And even though comparing her to other kids with Ds may not be fair either, it's hard not to do.  It's hard not to see what other kids are doing and note that Cora isn't doing many of those things. 

Sometimes I don't give her enough credit for what she can do.  Sometimes I think more about the fact that she doesn't use much spoken language and overlook how amazing it is that she knows and uses hundreds of signs.  There is no doubt that she is a smart girl.  Sometimes I don't recognize how very capable she is, and for that I am sorry.  I know that in this life, there will be many people that will underestimate my daughter, and I don't want to be one of them.

I am sorry, my dear little Beanie for underestimating you.  And I am so grateful that sometimes you choose to show me just what you can do.  You are one sneaky, smart, and amazing girl. 

First Steps

The whirlwind of summer is officially upon us.  After a couple recent family trips, we are finally home, getting ready to welcome a new barrage of family members over the next few weeks.

We've been playing and relaxing, achieving as close to a laissez-faire attitude as we're likely to get.

We just got back from a family reunion trip up to Christina Lake, BC, where we camped mostly in the rain, dressed up like superheroes, and had way too many laughs.  Cora entertained the troops.  That girl is a hoot, and seemed to really enjoy her time with all the grown-ups.  She wasn't too interested in the toddlers, and kept her distance from all the dogs.  She surprised me with how well she handled all the craziness.

And she also surprised me with her newest skill:  taking her first steps.  Last week about an hour before embarking on our trip, she stood up and took 2 steps toward me.  I just looked at her with stunned amazement.  I mean, it's not like I wasn't expecting her to start walking, but I guess when you feel like you're (mostly patiently) waiting for something for so long, it's just a real shock to see it happen.  Since then she's taken up to 8 little steps.  I don't expect running around for a while, and probably not even real independent walking (as in using her feet as her primary way of getting around) for a while either.  But it's a big step, nonetheless.

Not too much else to say, since my brain is still on vacation.

So I will leave you with a few images from our blast of a trip, taken by my cousin-outlaw Shon Taylor.  (Thank you, Shon!)

My beautiful girl and her Daddy.  True love.

Taking a couple of steps between Grammie and Grampie (since the kids and dogs were away.)

So proud!!!!

What a proud pair!

My little super villain:  The Silly Signer.

Using Sign Language with my Daughter with Down Syndrome

Little Cora Bean is a pretty enthusiastic signer.  I often get questions and comments on signing with her, so I thought I'd share a bit about our experience so far.

Using sign language with Cora is something that I decided I wanted to do pretty early on.

Although there are still some people that feel that signing can delay speech by causing a child to rely on signs to the extent that speech doesn't seem necessary, the information and research out there overwhelmingly supports the use of sign language with children.

I personally felt that adding a second language could only help benefit her early learning.  And with all the information telling me that people with Ds are typically visual learners, and that speech can often be significantly delayed, I wanted her to have a way to communicate early on.  From my reading, I felt that Total Communication (using signs, visuals, pictures, etc. at the same time as the spoken word) would also help to enhance her understanding and command of spoken English.

So I knew I wanted to sign with Cora, but I knew absolutely nothing about it.  I took the advice of many of the parents on my forums, and ordered Baby Signing Time videos, and later Signing Time videos.

Cora started watching the first episode of Baby Signing Time at about 8 months old.  She loved it.  She would get excited and watch, enraptured.  I learned those 20 or so signs and started trying to incorporate them into our lives.

But it was hard to remember.  I felt like I wasn't being very consistent.  So I started incorporating the signs I knew while reading books and singing songs to her.  It seemed to make it more exciting for her, and it helped me really learn the signs and get into the habit of using them.

For several months Cora watched the first episode daily.  Around 12 months old, she got a few more and we put them into rotation.  Although at first I was concerned about overwhelming her with too many signs, I began exposing her to a variety of videos and signs.  It seemed that she was quietly taking it all in, like any child does as they begin to absorb and learn language.  Language learning is not done in just a few words at a time, even though that may be all a child is capable of expressing.  I felt that she needed to be exposed to a rich variety of signs and vocabulary and that eventually it would pay off.  She was getting lots of input, but we still made an effort to focus intently on specific signs for a couple/few weeks at a time.

Eventually she began to show us what she was learning.

She began to sign at about 13 or 14 months.  She used just a few signs for several months, (milk,eat, more, Daddy, all done).  And then suddenly, she began to show me that she knew many more.  She'd  often debut 5 or more new signs a day.  They really had been sinking in all along.

Right now we have 17 Signing Time videos, and check more out from the libraries. (A great idea if you're not ready to buy.)  Cora loves them all.  She signs along to them, and usually knows what sign Rachel will show her next.  She signs along to the songs and translates what she hears into signs all day long.  She signs about what she sees, what she hears, what she thinks and remembers, and what she wants. 

Although my recent estimates put her vocabulary at over 500 signs, she continues to learn more all the time.  To supplement her Signing Time addiction, we look up new words on Signing Savvy. She is starting to string together word after word after word, in long random and excited sentences, leaving her mama (typically fairly good at interpreting her) in a confused haze some of the time.

I admit that her fine motor isn't perfect and that a lot of her signs look alike.  There is still some guessing involved.  And even though she has the tools to communicate with me pretty well, some times that's just not what happens.  It can sometimes take effort to draw out meaningful communication.

But she is communicating.  And that's a big deal for a girl whose speech is coming along fairly slowly.  She is beginning to use her word approximations with signs and to vocalize more and more.  And I know that one day, as she gets better at communicating with spoken language, she will likely start to use signs less and less.

I know that for many parents of children who do have or who are likely to have speech delays, signing can seem daunting.  It's hard to know how to start, and many kids aren't immediately enthusiastic about it.  For some children who are really movement-driven, getting them to sit down long enough to watch a video is a challenge. (Watching DVDs in the car can make for a captive audience.)  There can definitely be some hurdles.  We were lucky that Cora has been so interested and I am sure that is why she has taken to it so well.  But I am seeing really good progress in kids that weren't nearly as interested, even as their parents have relaxed their pace to reflect their child's motivation.  Sometimes it takes a while for our kids to show us what they have learned, but they are learning all the same.

From my perspective, teaching my daughter and my family to sign has been one of the best decisions we have made so far.  

I Believe!

"It is all very simple. Just believe."  These are the words from the mama of a lovely young woman with Down syndrome who has surpassed so many of her early expectations.  

Reading her words, I was struck again by something that I found so powerful just a few short months ago:

"Your hopes must be bigger than your fears."

Hopes don't have to be outlined into specific skill-sets.  Dreams don't have to be so specific that you will shatter if every detail is not realized.

Believing in your child is a simple thing.  A powerful thing.  The truest expression of our absolute love.

And that, I can do.

Great Expectations

My friend Michelle spoke today about goals and expectations for her amazing little girl Hailey.  She talked about how she is learning not to underestimate her daughter.  Hailey is adorable and spunky, a true little hurricane who is doing some exciting things.

It can be so hard to know what and how much to expect of our children, those with disabilities and those without.  Raising our expectations too high can lead to disappointment and children that may never feel able to measure up.  Putting so much emphasis on achievement can take away the importance of the process, the learning and the little steps; things which can often be more valuable than the end result.  When all that we value is material success and ivy league educations, where do the rest of us fit in? 

But we also know that expecting too little can lead to... well, too little.  When society didn't believe children with Ds capable of learning, they weren't given the opportunities for education.  When our society didn't believe them capable of integrating into society, they were locked away, and worse.  So expectations have to rise... don't they?

We know that by raising our expectations of people with Down syndrome and cognitive disabilities, we are finding people again and again rising to meet them.

On a personal day-to-day level, managing expectations is hard, too.  Sometimes the waiting, waiting, waiting for the slowest of progress keeps you questioning expectations.  Some are reasonable.  I know she will walk, even though it seems to be taking forever.

But there are other questions that are legitimate.  Like will she ever use speech as her primary communication?  There is a chance that she won't.  Will she ever go to college or get married?  Will she ever live on her own and manage money?  I really don't know.  Does creating these expectations put too much on us both?  I am hesitant to expect her to do these things, because I want it to be OK if she doesn't.  But I also don't want to limit her by putting my expectations too low.  

As my husband says, removing expectation is the way to go.  But is that really possible?  And if I stop expecting Cora to speak, to read, to communicate, to develop independence and pursue her own interests, will I stop supporting her growth in those areas? 

Or am I just over-thinking it way too much?  Either way, she is growing and developing.  Even when it seems so slow that I can't see it.  I can question these things all the live-long day, but I'm not sure if it really even matters.  The one expectation I can't seem to question is that she'll be amazing.  And there is no doubt that I believe in that.

Chill out, Mama!

3 (21) Down Syndrome Blog Hop!

One Truth:

As much as I ADORE my little girl, there are times when it feels like it all sucks.  Periodic twinges of pain when I feel sad about the things that she is not doing yet, and may never do.  Days when all the appointments and worries and stresses feel overwhelming.  Days when I just want to talk about it all without feeling like it means that I don't love her through and through.

These moments don't make me a bad parent, and don't diminish my love for Cora.  They just make me human.

One Tip:

Don't underestimate your child's intelligence.  A cognitive disability or limited verbal communication does not mean that your child is not smart. 

Assume that your child can understand you.  Especially when it comes to ice cream.  Assume that your child understands everything about ice cream, including signs, finger spelling, and all of the code you will come up with.  Children seem to come equipped with a radar for these things.  At least mine does.

One Photo:

Move your Body!

Cora has been loving this summer.  We've been spending many hours at the park, where she has been climbing and swinging, sliding and walking (with assistance).  It's been a blast.

Today we got to go the very cool park by Grammie's house. 

Cora brought her new favorite thing:  her ybike!  She's recently discovered the joys of riding it, but hasn't ridden it outside much, until now.  What an amazing thing, to have her "running" along beside us, upright and without holding onto our hands.  Most of the time she rides by standing up and running along, although she can sit when she gets tired.  It's really great practice.  I think I'm getting a taste of what it feels like to have a truly mobile, quick little toddler. 

The platform swing was pretty exciting too... with good core-stability practice too!

Cora practiced her cruising skills along the rope net to get to her Grammie.  Look at her go!

Then Grammie helped her do some rope walking.

And don't forget about making some beautiful music.

What a gorgeous morning at the park!