Thursday, March 21, 2013

See the Ability

Here it is!  The photomontage video put together by the Canadian Down Syndrome Society.  We sent in a photo of Jack with Jasmine, Levi and two friends.  It is so amazing to see other kids and young people with Down Syndrome living active and engaged lives.

My favourite quote from the video and from a young man who has Down Syndrome.  Maybe you recognize him.  We see his handsome face many times a day as we travel home and to work.  His photo is on several bill boards along the highway between Orillia and Barrie, Ontario.

"We should See the Ability of everybody regardless of what they can do or how they look or what others think." - Nicholas Popowich

Such a wise and inspiring young man.  You can read more about him at Voices At The TAble (VATTA) a blog written by a group of young advocates for people with Down Syndrome.  Something else Nicolas said in his blog post really resounded with me.  He wrote: "Abilities are abilities…abilities get past obstacles.  A person with Down syndrome can get past obstacles in life." 

Watching Jack be an amazing communicator despite the challenge to express himself verbally, I see just how right Nicolas is.  It gives me hope that one day Jack will be just as articulate and aware of what is important in life as these young people are.

I know that my life is richer with Jack in it and God has used him to help me see the world in a whole new way.

Happy Down Syndrome Day!

Friday, March 15, 2013

Getting ready for World Down Syndrome Day

With a some pictures of our favourite people in the whole wide world.

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Stay tuned for the video from the Canadian Down Syndrome Association on March 21, 2013 and celebrate a group of amazing people with us.

Wednesday, February 27, 2013

Tuesday, July 10, 2012

Jack the artist

Somehow while Jack was supposed to be going to sleep tonight, it became a prime opportunity for art-making.

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Not a drop of black marker made it onto the all-white duvet that he now sleeps so peacefully upon.

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But it got just about everywhere else that wasn't covered already.

Maybe Jack has been bitten by the same bug as our favourite French, painting kid in...

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A fabulous read.  Afterall who can resist painting their feet?

Spread delapeinture

Jack, la peinture, c'est bien fini.




Sunday, June 3, 2012

Encouragement to keep signing.

DVD sale


Just wanted to post this encouraging email from Arieigh (Gravenhurst, Ontario) who has been an invaluable resource to us for sign language.  As she comments that she had difficulty posting a comment on the blog, I am sure she won't mind me reposting this email.

Hi Jenn,

I feel moved to respond to your blog.  I've tried twice to comment there but each time my comments disappear when I try to preview or post them.  You are justly proud of your total communicator.  He shows great spirit, creativity and intelligence in getting his point across in the best way he can at this time.  There is absolutely no reason to stop signing with him.  As far as I know, there is no research that suggests that signing delays speech.  In fact quite the opposite is true.  Research shows that children who sign acquire speech earlier and have larger spoken vocabularies at age 8 (the oldest group for which there is current data) than children who did not sign before they could speak.  The article you link to in your blog does not cite any research, it expresses an opinion that is quite controversial.  I seriously doubt a study based on depriving children of their most effective means of communication in order to force development of an alternative means for which they may not be developmentally ready would get past the ethics committee.

It is perfectly typical for a child to hit a plateau in speech development at the stage where he has a few words as you describe for Jack.  My granddaughter, articulated only nine words for the longest time while her sign vocabulary, expressive abilities and sentence structure blossomed.  When speech kicked in she went from being able to say nine words to being able to say all 250 words she could sign in two weeks.  It might not happen that quickly for Jack but there is no reason to believe it would not happen that way for Jack as he is already saying some words clearly enough for you to understand.  I firmly believe that if we had stopped signing with Lark or exposing her to new signs when she had a vocabulary of 100 signs, she would not have developed her speech any sooner but we would have slowed her language and cognitive development.  

If you re-read that article you cite, you will see even they say the parent is the best judge of how much sign to use.  I say go with your heart.  Or at least follow up to see if the authors can actually cite any research that supports their opinion.  To me this aspect of their recommendations is taken from a very outdated model that focuses on a child's "weakness" to the detriment of their strengths.  They are suggesting a sacrifice of some of the critical window for language development on the unsupported hypothesis that this will accelerate speech development for those children with DS who can develop clear speech.  Even if that is the majority of children with DS, what is the effect on those who are not going to develop speech but who have the gifts to be effective total communicators?  What is the impact on emotional development and frustration levels?  

All the best to you and Jack, whatever road you decide to follow.


Arleigh Luckett, M Ed
Master Signing Time Instructor
Certified by the Signing Time Academy

S i g n i n g A s W e G r o w
"Early communication with lasting benefits"


We are so impressed with the Signing Time videos and Jack is now able to sign over 200 signs.  They are fun, musical, and feature cousins Leah and Alex who sign along with us.  I was shocked at how quickly Jack, Jasmine and Levi began to learn and use the signs in as quickly as one viewing.  I think with Jack also perhaps struggling with apraxia, it will be important for us to continue to give him a way to express himself and learn new things with the help of sign.

Arleigh has just informed me that there is a huge DVD sale on this week.  We are planning to buy the second set and the potty time DVDs.  To buy this set regularly cost us $272.00 but with the sale will be $150.  Huge savings!  Unfortunately this is a sale that is only available in Canada through participating Signing Time Academy Instructors.  Click on the image below to link through to Arleigh's webpage for all the details.  Stay tuned for more posts on the benefits of signing with children with Down Syndrome!  I have been doing some more research.

DVD sale




Thursday, May 31, 2012

Special Word and Story Apps

Just wanted to post about the new apps I have downloaded to help with Jack's speech.  I have been frustrated that we have been unable to follow a consistent and building program at home.  I think that Down Syndrome Education Internation has some credibility from what I have read and I wish that we could learn more about how to implement their curriculum.   They are based out of the UK but are moving to become more of an internationally accessible resource.  Does anyone have any experience with them or in successfully using their educational resources?

They have a See and Learn program they have developed for learning words, improving memory, learning to read and speech development.   I am thinking my next purchase will be some of their speech cards.  But the last item we ordered came from the States and was a huge hassle to get delivered.   Also, I may be able to find something similar if I look around.  Does anyone have something similar they are using to practice consonnants, vowels and other speech sounds?

There are two See and Learn Apps that you can run on your iphone or on your ipad.  We just downloaded these to our iphones and Jack is having a blast with them.  We have ordered and downloaded 2 sets of see and learn cards but I find them hard to use.  These apps are so easy and fun to use.  I think I will be intentional about using them with Jack for 10-15 minutes a day.  He actually tries to imitate the word when it is said by the program and loves the applause after he successfully completes each round of matching.  He was asking to play it again at the end of the day.  You can also ad your own photos and words you want to work on.


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Special Words                              Special Stories


The special stories app comes with a number of stories that are read to Jack as he pushes the arrow button.  They repeat common phrases.  This app also gives you the abilty to take pictures and create your own stories starting your little star.  Can't wait to try my own.  You can taylor it to words you may be working on.  I can see us using it more as we prepare for Jack's entrance to school.

Each of these apps is $13.99 which is a fraction of what you pay for the actual cards, you get it immediately and it is easy to use!

You can also go to the Down Syndroime Education International US website and buy an $8.00 add on words for both apps.

My plan is to get up a little earlier each morning so that I can spend 10-15 minutes of focused speech work with Jack on my iphone.  We just might need to get that ipad soon!

As I struggle with the possibillity that Jack may not speak for a long time and maybe never really coherently, I am saddened.  His brain seems not to be able to organize and get out his words.  You can work on blowing out candles, bubbles, practicing speech sounds and words but how to you fix someone's brain? My default seems to be work longer, push harder and we will succeed.  I recognize that this is really beyond me no matter how hard we work.  But I choose to continue to work with Jack in a reasonable commitment for both he and I.  I pray that God will guide us to the resources and answers we need to help him and ultimately I believe that God has a lot to say through Jack to the world so I need to trust that He will bring about all things in His time.

Tuesday, May 29, 2012

Speech Apraxia: am I signing loud enough?

So after months and months of intensive speech therapy, Jack still struggles to get his words out.  Am I missing something here?  Yesterday we were playing "horsie" in the backyard.  The rope tied loosely around Jack's waist, I called out "giddy-up horse, neigh, neigh".  A clear and precise "neigh, neigh" escaped from Jack's mouth in return with no effort.  You see the harder he tries to say something, the less likely it is to come out at all.  He signs more than 150 signs now and one of the research documents I have consulted has warned that speech production is priority now, let the signing diminish.  But try as we might, Jack's brain cannot send the sounds and words to his mouth.  It is not an oral motor issue.  He can blow bubbles and pucker like the best of them.  It is a brain issue.  Can you work hard to train the brain like you can a muscle?  It seems a little daunting to me at this point.

Here is an excerpt from an article called You said it yesterday, why not now?  After seeing that Jack's speech challenges reflect most of the items on the list of symptoms...I am thinking we need a new strategy here.  Any ideas?

Developmental apraxia of speech (DAS) is defined as a cluster of characteristics of speech.  The most frequently reported symptoms of DAS are:

  • Struggling or groping when speaking or trying to speak.  He seems to be working hard to talk, but the correct sounds are not coming out.
  • Inconsistency in sound and speech production.  One time, he can say a sound or a word clearly, but at other times he has great difficulty with the same sound or word.
  • A limited repertoire of phonemes.  He tends to use a small number of sounds.  More vowels are used without consonants attached, which makes the speech hard to understand.
  • Automatic phrases and movements may be clear, but his intelligibility is worse during spontaneous speech.  He may say "I don't care" or "I don't know" very clearly but have great difficulty in spontaneous conversation or when asked for a specific answer to a question.
  • Difficulty combining and sequencing phonemes.  He maybe able to imitate or produce individual sounds but when he tries to combine them into words, he has difficulty, especially as the words get s longer or more complex.  He can say "ham", but when he says "hamburger" it may come out as "hangurber".  "Banana" may be "nabana". Sounds and syllables are frequently reversed.
  • Decrease in intelligibility as utterance length increases.  He has more difficulty with longer words and phrases.  So, he may say "key"  easily, but have difficulty with "monkey" or "monkey bars".
  • Prosodic or rhythm difficulties.  He may talk slowly or rapidly or have and uneven pace.

Also according to the article we should have a daily repetition and drill, continuted signing, and play slower versions of songs for Jack to be able to attempt to sing along with amongst other strategies.  Maybe we will be adding another signing time series to our well loved library after all.

A nosy lady with an iphone catches Jack iphone is, of course, way more interesting.

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