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!

Getting ready for World Down Syndrome Day

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

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

Every Christmas needs a little catapulting

Jack the artist

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

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

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...

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

Jack, la peinture, c'est bien fini.

Promis?

 

 

Encouragement to keep signing.

 

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

Arleigh Luckett, M Ed
Master Signing Time Instructor
Certified by the Signing Time Academy
(705)687-1496
arleigh@signingaswegrow.ca

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.

 

 

 

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.

 

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.

Speech Apraxia: am I signing loud enough?

Okay,
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 reading...my iphone is, of course, way more interesting.

Ice tea for me

I came home from running a couple of errands today to this lovely and colourful display on the sidewalk in front of our house.   I think Daddy gave a little help... 

Jazzy wrote the sign.  She is actually reading and writing quite well now.  Spelling needs a little work but we'll put these special works of art away and remember them fondly when she is older.  Who says orange should be spelled with a silent "e" and does anyone miss that "i" in juice anyway?

How could resist buying myself a glass?

Such a charming team of waiters.  Little did Levi know that the hard earned money from his juice sales was going directly into his sister's piggy bank?  No questions asked. You might one day be bigger than her, but you will never outsmart her...

Of course there is another whose approach is unconventional.  Just help yourself, don't even worry about pouring...

...to several glasses at a time.

Good to the last drop.

And could the lady with the camera please pick up the tab?

World Down Syndrome Day

Today is World Down Syndrome Day.  We have been working on this little labour of love to celebrate having Jack in our lives.  In all honesty, when Jack was born with the diagnosis of Down Syndrome, I thought my happiness had come to an end.  I was so afraid. But what I now realize and hope to share with others is how our joy has multiplied with each one of our children.  What a blessing it is to be a parent.  Each child has needs and their own unique challenges.  We are privileged to be charged with caring for and loving three remarkable children.  Today, we celebrate Jack and the unique gifts he brings to our family.  He has enriched our lives and knowing what we know now about Down Syndrome, we would choose to walk the same road again and again.  We invite you to celebrate with us by watching the video.  If you know someone who has Down Syndrome, please share how they have enriched your life or what you love about them by posting a comment.  Be brave, we would love to hear your stories!

March 21, World Down Syndrome Day

As we approach World Down Syndrome Day (March 21), a day for celebrating the lives of people with Down Syndrome, I thought I would answer this question for myself today.  What would I tell myself the day that Jack was born now that I know what I know now?

I think I would say:  Don't be afraid.  He is wonderful, funny, loving and amazing.  You will not regret having this child.  He will win your heart.  Don't listen to the "nay-sayers" that tell you what he will never do and trust that God has a bigger plan.  Jack continues to amaze us with what he can do.  He humbles us with his capacity to love and live life to the fullest.

Is winter over?

A favourite winter photo.  Interested in it's digital workings,Jack reaches for the camera.  All electronic gadgets and computers are a GO.    Another one of Jack's favourite words.   

You have got to be on your toes with this boy!  He is quick.

The total communicator

How it warms my heart to  see little brother learn from big.  What love and gentle patience am I witness and so are you.



Levi and Jack read together

I am impatient and try not to voice the question "will he ever speak"?
I want my little one to talk and tell me of the many things a boy of three sees and thinks on.
A "total Communicator' is what our Speech and Language Disorder Assistant calls Jack. The clever boy uses everything he can to be understood by the world.  He signs, gestures, points and speaks a few very clear words:  Daddy, beep, up, down, and yep being his favouriites.

We have enjoyed learning over one hundred signs from watching the Signing Time videos as a family.  We have also been using the See & Learn photo cards from Down Syndrome Education International.  These have been tremendous resources to help us see that Jack's receptive language and understanding of things has continued to develop with his age even when his expressive language has lagged.  It has also helped Jack see that he can communicate with us as well and be significantly less frustrated.  Although he does get frustrated at times too, as you can see with his increased agitation towards the end of the video.  He does not like to be bossed around and will only tolerate it for so long from his siblings.  The research done by Down Syndrome Education International in the area of Speach and Language for children with Down Syndrome (0-5 years) encourages a move away from signing to focus more on actual speech production once a child knows 100 signs.  This is where we are now an iit is challenging.   It is hard to stop signing and give up some of our total communcation so that we will hear more words.  But he is coming along.  This week we got the "mmm" sound.

Looking forward to hearing Mommy.

A Gambling Problem

The cutest puppy ever

Fun photos

Some fun results from the digital photography course I am taking this week.

Happy birthday to my big boy!  Hope you are enjoying some pie right about now.
Love
Mommy

Three birthdays

Three summer birthdays to remember.  First came Jenn's with good friends and wild karaoke birthday songs...

and some new pjs!  Rob worked all day and then came home set on and ready to make dinner.   To all you guys out there--the best thing a man could do for his girl is to make dinner and buy her comfy pjs.  At least if he is married to me, that is.  Then came our Jazzy-girl with thoughtful gifts from brothers and Mom.  

Something crafty, something to play with, a Bible of her own (now that she is reading) and ending with a special green canoe paddle and flowers from Daddy.

The big party-bash is scheduled for this Sunday.  The plan has been in the works for a long time now.  Party bags are made.  Pinata in process but we shouldn't have tried to attach the body before the head dried!  

Our upside-down owl holding a branch is now in two pieces.  Don't worry, it will look like an owl by Sunday!

I am off to a photography course next week so I will miss celebrating Levi's birthday on the day of.  I feel strange about that.  I enjoy reminiscing about how their birthdays actually went.  Sometimes I wonder if their arrivals into the world reflect their personalities.  Levi was in a hurry to get here, crashing onto the scene in a mere four hours.  Whereas Jazzy was comfy inside, happy to curl up and stay in her warm mama cocoon until evening.  I laboured with Jack for a long time before he decided to come late into the night on day two.  Now fast forward to 7 and 5 and 2.5 years later:  Jazzy the careful, creative observer and still an incurable night owl.  Levi the crashing, funny scientist always experimenting with balance, ropes, pieces of wood just to see what happens.  Our Jack-in-the-box boy, now you see him now you don't mischief maker who takes a little more time to reach his milestones but how beautifully he does them when he is ready.  Because their birthdays are so close together and they wanted to invite the same people, we decided to go for a combined party this year.  Littlest Pet Shop mets Cars.   I am still trying to figure out the best way to pull off this mash-up theme.  A home-made Pet Shop in a get-away Car cake topper is definately in order.  But I always like to celebrate on the actual day.  I think it is important to feel special and loved on the day of your birthday.  We typically make their favourite meal and give family gifts with cake and singing and stories.  I want each of my children to know who they are, where they came from and how much they are loved and valued in our family. Chosen. Purposed.  Loved.  Celebrated.

Do you have any birthday traditions you do with your family each year?  Please share!  We love comments.

I am still in three is a beautiful number mode.  My camera is fixed and I am looking forward to the first time away on my own in 7 years!

three is a beautiful number

Three beautiful faces.  Three hot, action-packed weeks into summer.  Three days past a wonderfully celebrated birthday and still counting my blessings.

Speech Therapy

Jack is now doing some Talk Tool speech therapy with exercises that target his oral muscles and breathing to help him build body awareness to make some of the sounds we are asking him to make.  Right now he gives open mouthed kisses.  Like most kids he is on a "pucker" learning curve.  He loves to sing so he opens his mouth and belts out an "ahh" along to the music.  His favourite these days is the "Itsy Bitsy Spider"  with the actions of course.  But those lips don't want to do any work!  So we came home with a little horn that he needs to blow 10 times a day focusing on bringing his lips together without his teeth or tongue working to stabilize the mouth-piece.  I am excited to experience more exercises with horns and straws that will help him understand how to move and breath properly to mimic speech sounds.   It is one thing for Jack to hear me make a sound and want to mimic it but what if he just doesn't know how to make his lips/tongue/jaw/breath do what it needs to do in the right sequence?  I think this program might really help Jack to progress with his speech by helping him learn how to make all his speaking parts work together.

Here is an interesting article called The Oral-Motor Myths of Down Syndrome. (Just click the second listing on the google search which is a pdf file of this article)

Jack also really likes to draw.  He is dangerous left unsupervised with an uncapped marker and if he runs out of paper...look out white couch.  Having older siblings around who always pick up their things, there are many markers to be found.  Jazzy has a special place in her heart for permanent markers.  So far most furniture has been spared and the only permanent marker incident occurred in her room.  As soon I hear the sound of the cap coming off of the marker I run.  Jack usually pops one off and then chucks it.  He doesn't have any more use for it!  That pop can wake me out of a dead sleep and then you have until the clatter sound of the lid hitting the ground to intercept and avoid some major graffiti!

I wish I could have snapped a photo of his emerald green mint smelly-markered legs!  Camera still out of order.

Sigh.

We were in looking at cameras the other day.  The new version of my camera has video capability.  But when you can replace the lens with a used one for $60  it is hard to justify the cost of a major upgrade.   Now if I could just find someone close by who wants to sell theirs to me!

Part time work?

Unfortunately my camera took a little tumble off of the dining room table the other day.  My regular lens is completely unreparable and I feel totally lost without a camera ready to go.  These photos were taken earlier this summer with the boys on our back swing set.  Levi is happy being the big brother.  Jack is in his favourite place.  He even knows the sign for it. 

Speaking of signing...we just got our two Signing Time DVDs in the mail.  I have never seen Jack engaged like that with something he was watching.  He was so happy to see all the different children signing.  When he saw a baby he would sign "baby" and then they were teaching the sign for shoes and he signed right along.   The next day he was signing some of the words by himself.  It is amazing to see how quickly he is able to learn and start communicating more with us.  We are learning colours and food now.  Tomorrow we are joining a Signing Time instructor in Bracebridge to visit a farm and learn some more signs for animals.

I thought this summer would be a little more relaxing but I am quickly learning that I need to keep my eyes on Jack at all times, even if he is "safely" tucked away in our back yard.  He gets into the smallest places and into things you could never image.  One second he is in the sandbox, the next under the back deck or up to his waist in mud in the neighbours newly seeded back yard.  One day he got his head wedged between the two composters at the end of the garden.   The next incident involved him being stuck between our wooden fence that overlapped the neighbours chain-link fence.  Rob was trying to pull him out from the neighbours side but his knees were folded under the bottom fence board.  I finally managed to wiggle his legs sideways one at a time an lift him out.  Once we got him out we saw the blue ball he must have been trying to get, about three feet in from the fence edge.  I suppose there are some advantages to being a determined, petite two year old...just not for the parent-rescuers.

Jack basically runs me off my feet.  He is so busy and active and inquisitive that I am hard pressed to get the housework done some times!  I know, you all wish you could have this kind of excuse to fall back on!  But I am serious...I think it is time to bring in some help in the form of a teenager in need of a part time job!   I need an extra set of hands AND eyes!  Remember the last time I left him in his siblings watch, I ended up with a gallon of paint down the staircase.   I think I need someone more professional, someone older than say...6. 

But you know when I look in this beautiful face, I am so thankful to be sharing my life with you, Jack.  You are wonderful and each day you amaze me.  We need people like Jack in our lives to inspire us.  Why are we so quick to reject babies with Down Syndrome?  Their light shines so brightly in this sometimes dark world.  I don't know one person who has encountered Jack that is untouched in a positive way by his warmth and affection.  I am so glad that I didn't miss out on you, Jack.

To work or not to work

Whatever happened to Jenn's art teaching?

Sorry I haven't been posting in the last couple of weeks.  Some major decision making on my part has taken up all the brain space I have right now.  Once we got Jack out of surgery and the other kids finished school, I was hit by some major work changes.  I am scheduled to go back to work to teach in September.  At first I was looking forward to it, thinking it would be great to go back to teach high school art again, a job that combines a real passion to create artistically and working with teens which is something I have always loved to do.  Now come the BUTS.  As of the first week in June, I was scheduled to teach art.  On June 16th a lot of what I was scheduled to teach suddenly changed because the principal thought I could better meet the school's needs elsewhere.  I have had a meeting with him and a couple of discussions, emails but we seem unable to come to an agreement.  And since he is the boss...I am now supposed to be teaching 2 art classes and a geography first semester and a sundry of other classes not including art second semester.

Needless to say this dramatic change and difficult start with my principal has brought on tremendous stress and a period of questioning for me.  To work or not to work?  Maybe the question should be more clearly:  to go back to my job as a teacher or not?  At different moments in one day I can be ready to resign or go forward and just do it.   I wish that I could be one of those moms that could just choose to stay at home with the kids, but I find I need something more: an outlet for creativity and professionalism that does not revolve around children, play dates, therapy appointments, laundry, cooking meals, etc.  Don't get me wrong, I LOVE being a mom.  I love my children and my husband more than life itself.  It is about striking the right balance for me to continue to love and serve my family but also be renewed in my own person by doing the things that feed my soul.  Either way, I need a vision for the way forward and I need it quick.  I want to enjoy this summer with my kids being fully present in heart, mind and body.

That being said, I am not sure going back to teaching is the answer.  There are many ways I could begin to pursue my career as an artist and teacher.    But this job has been waiting for me.  Held for me.  Should I just decide to go ahead and try?  Or do I decide this is too stressful for me and my family and not try at all?  Will I regret my decisions?

At the same time,  I feel like we take everything so seriously.  Don't you?

At the risk of being to serious today, I will end my post here.  Just wanted to let you know why I have been so silent.

Jack is doing well with his eye pressures.  Rob took him to Sick Kids last Monday and his pressures were high at 27 but we have now started him back on some pressure lowering drops.  His doctor seems unconcerned and that his recovery is right on track.  The stats say that 50% of children usually need to start drops again after implant surgery.  So maybe Jack falls into this statistic.

When I haven't been ironing out work issues, we have been having fun keeping summer hours riding our bikes, swimming, learning to sign and doing some new oral motor therapies with Jack.  Jasmine is now riding her bike without the training wheels on the road out in front of our house.  Only when one of us parents can have eyes on her and the road as well.  Levi can ride without training wheels but prefers the comfort of having them still.  He wants a skate board for his birthday.  We are a family with lots of summer birthdays so it should be a happening summer!

Hope you are having a great summer too!