Monday, December 17, 2012

First Ski Day of the Season!

K tried out her new skis a couple of weeks ago.  This was supposed to be the year that she skied without a harness but after her AAI X-ray came back on the questionable side, I decided that I wanted to more control for at least a little longer. K is just starting to be able to turn & stop so once she is able to ski in control I'll finally untie the apron strings take off her harness & let her ski totally independently.

K only skied for a couple of hours but did well & seems to be remembering all she learned last year. Our hill is opening this weekend so we're excited to go again!With 3 older girls who ski race competitively the local ski hill will be our second home for the next few months.  K will be moving up from just having mom as her instructor & will be taking regular lessons so I'm anticipating big improvements in her skiing ability this year.

Friday, December 14, 2012

My Awesome Christmas gift!

K's fine motor skills were still testing at or slightly above average for a typical child her age when she turned 4 however she hated any kind of drawing & colouring.  Although she hasn't had her fine motor skills tested lately I was quite sure she had fallen behind due to the lack of writing pratice. In the last 7 or 8 months however she has suddenly decided it is great fun to draw & colour & with many different mediums - paint,crayon, pencil, iPad letter drawing apps, magna doodle etc.  All that practice has been paying off & it has been very noticeable in her drawing,colouring & printing.  We always get K to practice writing her name on worksheets & yesterday she insisted that I write my name first.  I obliged & the she proceeded to write too. After a few moments she said "Look Mom!"  I expected her to have written her name but instead I saw this:


In case you can't understand my messy writing hers is the Mom on the right!

Tuesday, December 11, 2012

Abbott

If you are planning a donation this holiday season please consider donating to Abbott's fund on Reece's Rainbow.

Abbott has been transferred to an institution & desperately needs funding to aid in his adoption.

If you aren't planning a donation will you please share his picture or repost this?

Abbott was born the same year & month as K & I've always had a soft spot in my heart for him. He was transferred over a year ago & it breaks my heart to imagine if it were my daughter in that situation.

Thanks everyone:)

http://reecesrainbow.org/8104/abbott-3g

Sunday, December 9, 2012

Fun Christmas / Winter activities


I was looking for some fun but simple Christmas worksheets for K today & came across this blog.  Many of these ideas are a little too easy for K but sometimes I like to find things for her that are just fun & don't require her to work hard.  This winter Wonderland Pre-K pack has about 25 pages of brightly coloured activities & I'm sure K will love it!

Saturday, December 8, 2012

Funnix Beginning Math Free Until December 15!

I haven't tried this program yet.  I just downloaded it but haven't had a chance to even look at it yet.  I thought I'd pass this on quicly because the free offer is only good until December 15th.

Funnix Beginning Math

Check back in at that site between December 16 & 31 to download their Funnix Reading program. 

I did download this program the last time they were giving it away for free & talked about it here but I'm not sure if it is the same program or if it has been changed.  I do know that they have tried to reduce the price to make it more affordable.

Thursday, December 6, 2012

5 going on 13



This winter we've had one snowstorm after another so the other day when I was in town I decided I needed a new toque.  I found this one in the clothing section at the local health food store & loved it's funky colours so I bought it.

The next morning  K & I were getting ready for me to take her to school.  I put my toque on & bent down to help her tie up her boots.  K looked up at my hat & tried to take it of my head. I  told her to please leave my hat. Without hesitation, in a voice that sounded more like a 13 year old, she responded, "Mom, you can't wear that!" I wasn't sure what she meant so I explained that this was my new toque & it was cold so I was wearing it to take her to school.  "No mom, you can't wear that!"  she said & again tried to take it off of me. "Yes K" I insisted "I am wearing my new toque"  She repeated it 3rd time & again that disgusted teenage voice came out. "No, Mom, you can't wear that, you're too old for it!".

I love how this kid can make me crack up with laughter at her 5 year old adorableness one moment & in the next leave me wondering how she can be a teenager 8 years ahead of schedule.


Tuesday, November 20, 2012

AAI - Atlantoaxial Instability

Sorry for the blurry picture but here's evidence of K's fascination with all things doctor...........most 5 year olds probably wouldn't notice this poster.  See how K is pointing  out the details to me? She had to read most of it too lol!

Atlantoaxial instability is a separation between the C1 & C2 vertebrae.  In the last few days I've been doing quite a bit of research on this subject & in most cases I read that a separation of up to 5mm is considered normal "for kids with T21" although in some reports I've read up to 4.5 mm.  For kids with T21 is in quotes in the above sentence because I hate when doctors clarify things that way - there are many times when doctors decide that things are "normal" for kids with T21 which they would treat in typical kids - thyroid problems are a common example of this.  Anyways, back on topic again..........

Occipital-atlanto instability is also not uncommon in kids with T21 & occurs between the occipital lobe & C1 vertebrae. The incidence of these conditions is anywhere from 10 to 30% & very few of the people affected have any symptoms. Here is a quote from the NDSS page on AAI:

""Most importantly, symptomatic AAI is apparently rare in individuals with DS. In the pediatric age group, only 41 well-documented cases have been described in the published literature..."

Yet I can think of a couple of kids who weren't even 3 when they were affected.  Off the top of my head, there was a little boy whose mom used to post on the BBC DS forum who went in for a T&A surgery but was X-rayed first & ended up having surgery for AAI instead.  Another is little Rhiannon who was about 3 months older than K. She passed away due to undetected AAI. So why aren't we testing?  It occurs in 10 to 30% & most have no symptoms? I understand that an X-ray is not a perfect test for diagnosing AAI but in my opinion a less than perfect test is better than ignoring the potential danger.......& this is potentially very dangerous.  

We've been considering having a screening X-ray done  for K since she was almost 3 years old. It used to be recommended at around that age.  We choose to wait for 2 reasons: By age 5 the child's bones have calcified more providing a better X-ray & because we only wanted to have to do it once so that we were exposing her to less radiation from the X-ray especially because the thyroid cannot be protected during this X-ray.

In the meantime, the guidelines for this diagnostic test changed both in the US as well as here in Canada.  Although I printed the Canadian guidelines off for myself as well as an extra copy for K's pediatrician, D
r. S, last summer, I can't seem to find the link, but here are the American (AAP) guidelines which I'm sure are quite similar. They no longer recommend a diagnostic X-ray. Again, I completely disagree with this. 

Here is the section on AAI & AOI taken directly from the Official Journal of American Pediatrics:


"

Atlantoaxial Instability

Discuss with parents, at least biennially, the importance of cervical spine-positioning precautions for protection of the cervical spine during any anesthetic, surgical, or radiographic procedure. Perform careful history and physical examination with attention to myelopathic signs and symptoms at every well-child visit or when symptoms possibly attributable to spinal cord impingement are reported. Parents should also be instructed to contact their physician for new onset of symptoms of change in gait or use of arms or hands, change in bowel or bladder function, neck pain, stiff neck, head tilt, torticollis, how the child positions his or her head, change in general function, or weakness.

The Asymptomatic Child

Children with Down syndrome are at increased risk of atlantoaxial subluxation. However, the child must be 3 years of age to have adequate vertebral mineralization and epiphyseal development for accurate radiographic evaluation of the cervical spine.52 Plain radiographs do not predict well which children are at increased risk of developing spine problems, and normal radiographs do not provide assurance that a child will not develop spine problems later.53,54 For these reasons, routine radiologic evaluation of the cervical spine in asymptomatic children is not recommended. Current evidence does not support performing routine screening radiographs for assessment of potential atlantoaxial instability in asymptomatic children.55,,64 Parents should be advised that participation in some sports, including contact sports such as football and soccer and gymnastics (usually at older ages), places children at increased risk of spinal cord injury65 and that trampoline use should be avoided by all children with or without Down syndrome younger than 6 years and by older children unless under direct professional supervision.66,67 Special Olympics has specific screening requirements for participation in some sports.68

The Symptomatic Child

Any child who has significant neck pain, radicular pain, weakness, spasticity or change in tone, gait difficulties, hyperreflexia, change in bowel or bladder function, or other signs or symptoms of myelopathy must undergo plain cervical spine radiography in the neutral position.55,65 If significant radiographic abnormalities are present in the neutral position, no further radiographs should be taken and the patient should be referred as quickly as possible to a pediatric neurosurgeon or pediatric orthopedic surgeon with expertise in evaluating and treating atlantoaxial instability. If no significant radiographic abnormalities are present, flexion and extension radiographs may be obtained before the patient is promptly referred.23,62,63


As I said, I completely disagree with these recommendations so this spring I asked K's pediatrician to have this done. As per the guidelines, he didn't feel it was necessary but ordered it anyways because he respects my need to have certain extra testing done for my peace of mind. 

 We actually went to have the X-ray done a couple of months ago but when we arrived I realized that the orders were just for a regular side view of K's neck.  I had researched in the past & even spoke with an expert at a US Shriner's hospital who said flexion & extension views were necessary to diagnose AAI. I refused to allow the side view so it was back to the pediatrician to inform him about which types of X-rays are necessary.  Thankfully he not only understands that I research all of my daughter's health concerns but actually recommends parents be very informed so he happily accepted my recommendation & changed the orders to include flexion & extension views.  If you are getting this done for your child make sure they do the proper views.

K has been fascinated by anything to do with doctors lately so she was quite willing to cooperate for the X-ray.  She happily sat on the stool & carefully followed the directions for each X-ray view, flexing her neck so her chin was tucked in & extending it back when asked.


I checked that test off my list & went on my way fully expecting to never hear a thing about it. Within a few days I received a phone call.  Of course they wouldn't share any details over the phone but they did admit that K has AAI.  They didn't actually have any appointments left until early December but the kind hearted nurse understood that I have no patience when it comes to the health of my kids & squeezed us in for an appointment 2 days later.  

Of course I spent the any time I could during that next 2 days at my computer & here are a few links that I found very helpful.

The Garden of Eagan is a blog written by a mom whose son has had  successful surgery for AAI. Her youngest also has this condition & is being monitored.  She is very knowledgeable & has been wonderful at answering my questions.


Life With My Special K's is another blog by a mom whose daughter had spinal fusion surgery. This is a very informative post.


I really like Paul Doney's AAI page on his Super Down Syndrome site. Not only is it full of information, but I found the diagrams made it easier to understand & it has links to some studies & other info on the bottom of the page. 


During K's appointment I found out that K does have AAI & the gap is 4.7mm.  As I said earlier, according to my research some feel that that a separation of up to 5mm is considered normal " although in other reports I've read up to 4.5 mm. At 4.7 K falls right in the middle of that area.  Upon receiving the X-ray report K's pediatrician had phoned a neurologist at our local children's hospital.  The neurologist feels up to 5mm is normal for kids with T21 so he said K should have no restrictions on her activities.  I questioned Dr S on activities such as skiing as we did just buy K a new, larger set of skis last week & he replied that the neurologist said no restrictions. I admit that I'm a little nervous about the gap in K's neck being within that grey area & so close to being at a level that would require restrictions on her activities. On the other hand, the gap rarely widens unless there is a trauma to the neck.  The other thing to consider is that the X-ray is not always a reliable test.  My plan for now is to still be a little more cautious like we've always been.  K won't be allowed to do summersaults & we'll keep using a harness when skiing until we are confident that she can ski in control.  I will be requesting a followup X-ray at some point down the road.


Thursday, November 15, 2012

Today, Down Syndrome Sucks

I don't worry about Down syndrome itself I don't stress about the future, I just don't..............it's the medical stuff that get me.

Down syndrome itself doesn't bother me, but there's always that nagging worry that the other shoe will drop.  It happens less & less as K gets older.  At first it was her heart...& that one still comes up every now & then. Then it was sleep apnea, high iron levels, thyroid, hearing & vision & of course there's the ever present nagging thought in the back of my mind that kids with DS are more likely to have leukemia.  You understand right? That list just goes on & on & that's what I sometimes have trouble dealing with. 

K finally had her AAI x ray done last week. I was so sure it would be fine but she does indeed have AAI.

I think I would be totally at peace with Down syndrome if if it weren't for the potential medical issues.  I don't cry about Down syndrome but I've been hiding my tears all day, from the doctor, from an acquaintance who I wasn't wanting to share with, from the man from the Internet company who is trying to overcharge me (after my morning he got a polite but demanding earful!) & from K & my next youngest KJ, because although I explained it & will explain it to their older sisters when they get home from school, I don't want to worry them.

Today I feel like calling my mom (who lives to far away so I won't even tell her anything until I know more facts) to come over, give me a hug & help out with meals & kids & everything so I can just go hide somewhere & cry because today, Down syndrome sucks.

Friday, November 9, 2012

Would you "change" your child with Down syndrome?

I posted a link to this study earlier this morning on my Face Book page. It is a fascinating article on how scientists have succeeded in removing the extra copy of chromosome 21 in cell cultures derived from a person with Trisomy 21. The discussion on Face Book was quite interesting & I'd like to share more of my thoughts here.


 Some of the discussion was about changing our kids. This treatment is not intended to do that but I'm going to address it anyways.  I would not want to change K but in her case I can't see how "taking away" her Trisomy 21 would really change who she is.   Besides, we've been doing that already. We have been working with K since she was a newborn using her neurodevelopmental program & supplements. In the last couple of years we have used more vitamins & supplements to help her.  We have taken her to a chiropractor since she was a few weeks old. K has been seeing a natural doctor occasionally & sees a cranial sacral therapist once a month.  All of these things have been done to help her overcome the effects of the extra 21st chromosome.  Have we changed her with all of this effort?  Probably............& I hope so, I love who K is - she's amazing & so much fun to be with.  Maybe if we hadn't done those things she would not be able to communicate who she is as well as she does. Who knows how different she would have been had we not done all of those interventions?  K had a strong, vibrant personality that shines through regardless of that chromosome - removing it would not change her.  She'd be the same little girl who perhaps could run as fast as the other  kids or speak just as clearly without quite so much effort.

I asked the rest of the family individually after I wrote this if they thought removing the chromosome would change K.  All agreed that it would not although one of my daughters said she'd just be able to express her sauciness better  - & she's probably right!

The one possible medical scenario mentioned was the possibility of being able to aid in the recovery of patients who have leukemia by giving them a stem cell transplant using their own stem cells that have had the extra chromosome removed. I have a friend whose little girl is fighting leukemia right now. Her daughter is a fighter & doing great but I'd love to tell her that we could change her daughter's stem cells to give her even better odds of surviving.

Later in the article it talks about possible applications with early aging or adult mental decline.  My thoughts immediately went to Alzheimer's disease.  We know  that's a pretty universal concern for people with Trisomy 21.  I would welcome the chance to change my daughter in those ways.

When the question of changing our kids has come up in the past my mind immediately jumps to the medical issues.   K's heart problems are  very minor I'm told & I'm thankful for that but it's still a nagging worry.  Yes I'd change that too.

Often when we talk about changing her kids we mean their cognitive function. My last point on this subject is that many of us are already doing this.  It is commonly known that our kids are much more likely to develop thyroid problems.  Untreated thyroid problems lead to cognitive decline.  We have no problems treating this cognitive problem so why wouldn't we treat other cognitive problems if it were possible?

Edited:  I'm adding one more point here.   Aren't we all changing our kids any time we take them to any mainstream therapy too? The point of therapy is to help our kids gain skills, I'm just going about it in a bit different way.

 
I also want to clarify, & I have said this before but to repeat in case you haven't heard, I will always look into any new treatment or drug very carefully before giving it to K.  When it comes to new drugs I am especially leery because I believe every drug has side effects & in many cases there is a safer natural alternative.

My other point is that we don't have to wait for a "cure" to get started helping our kids.  I blogged about this here the other day.  There are so many different things that we can try.  Some may work for one child but not another but there are lots of options & I'm excited to see new research  being done because even though we have all of those options I'm sure there are a lot of things we are missing that will greatly benefit our kids.


I'd love to hear your thoughts on this.  Would you "change" your child?

Wednesday, November 7, 2012

"We all can dance" Canadian Down Syndrome Awareness Week

This is my last post for Canadian Down Syndrome Awareness week.  After this week of posts plus a back to back attempt at  31 for 21, I think I'm ready for a short break! I saved this post for the last day because I think it is fitting.  I hope you enjoy it!

I randomly picked this book at the library a few weeks ago.   The picture looked cute & K had been reading a nonfiction book about giraffes, so I thought it would be fun to read a fictional story too. I had no idea what a wonderful message this book would have.



How often do you hear that kids with Down syndrome can't do_____________? If you have been reading my blog for very long, you probably realize that I have no patience for people who put limitations on my daughter's abilities.
 for
Gerald the Giraffe would love to be able to dance like the other animals, but is discouraged because  he is so clumsy.

A wise cricket helps Gerald realize that he can dance just as beautifully 
as the other animals, he "just needs a different song"



Isn't that a great message? my daughter's healthy diet, the early learning we have done as well as the neurodevelopmental program the we have done with K have allowed her to dance far beyond the what would be expected of a 5 year old with an extra chromosome, & in some areas, far beyond a typical 5 year old with the usual 46. She is dancing, she is soaring & she is singing along as the music plays!

I recently got a chance to go for coffee with a mom who I've previously only met on line. I admire this other mom for her dedication & energy to not only her daughter's well being but towards other DS projects. She is a great support to others & is helping to get a lot of information out to other parents & to bring them together.

My friend's daughter is also doing a neurodevelopmental program & while she believes it is beneficial, the biggest results she sees haven't been from her neurodevelomental program.  The various supplements & vitamins her daughter uses have made a much bigger difference in her development. 

I'm sure the "music", whether it be a neurodevelopmental program, vitamins, a diet free of gluten, dairy,  a certain therapy or therapist etc, is different for every child,  but I believe every child, with or without an extra chromosome, can dance, we just need to help them find the music that they love!

Tuesday, November 6, 2012

Canadian Down Syndrome Awareness Week - Excitement about the dentist?????????

It's not very often that I am so excited about a medical (actually in this case dental) appointment but I am like a little kid in my excitement today!

I have finally found a dentist that I really believe is right for our family.  He is a holistic dentist/orthodontist & very knowledgeable not only about dental concerns but health & diet as well.  Every time we see him we have the most fascinating discussions & I learn so much.

Today we went to take molds of my daughter KJ's teeth so he could get a dental appliance made for her.  It is a simple wire that sits behind her teeth & will basically take the place of braces.  

The first indicator that something about the visit was going to be a little different?

He talked about KJ's posture.........what does posture have to do with teeth?  It was fascinating to see the pictures he had taken. There were horizontal & vertical lines on the pictures & with that visual it was simple to see that KJ's posture was not correct & even her jaw was much more developed on one side than the other.  It was even more fascinating when he explained how her teeth were affecting the rest of  her body. I'm excited to see the results!


Okay, so I wrote this about a month ago but didn't get a chance to finish it & today we were back for KJ's first refitting.  I'm still thrilled with the dentist but not quite so excited today as I also had an appointment & had  4 large mercury fillings removed :(     .............but that's enough complaining:)   I'm sure I'll free great soon because of the large amount of mercury they removed.  KJ is doing well & sailed through her appointment.

Next it was K's turn.  Dr. D is monitoring K because as soon as he believes her mouth is ready she will also get an appliance.  He feels her mouth needs to be just a little more mature. He is planning to do it soon but doesn't think she is quite ready yet. The bad news is that she had an area on her tooth that was just starting to decay.  She didn't need a filling but required a sealant.  We all wondered how she would do.  Remember, this little girl was terrified of going to a doctors as recently as a year ago. We were hopeful though because we have put a lot of effort into making the dentist a fun experience.  We've just never had to put her through anything besides a quick check & tooth count before. All of our home made "Going to the Dentist/Doctor type books have paid off because she was wonderful today.  It was a quick procedure but did require a piece of protective padding stuffed in her cheek & some noisy, vibrating implements.  She was smiling when it ended & high fived Dr. D as she hopped down from the chair to go look for a prize (actually 6 of them - they spoil the kids there!).

Although K is not ready for an appliance yet, I asked him about the MYO appliance that K's nerodevelopmentalist had recommended.  The Myo has also been talked about on a couple of DS boards lately & a few other families are trying it as well. I had hoped the MYO would help prepare her mouth for the appliance a little more quickly.  I was disappointed to hear that Dr. D had tried similar devices in the past but just hadn't seen the results he had hoped for.  He doesn't think it will do any harm though so suggested trying it to see if there are some improvements. 

I am going to take some pictures to try to document if there are any changes & I'll update as we go.






Monday, November 5, 2012

Canadian Down Syndrome Awareness Week -Printing practise

K is finally started to agree to doing some handwriting practice. For the longest time, she didn't like writing of any kind.  Following in the footsteps of KJ, my now 9 year old, she didn't even want to pick up any kind of crayon or felt pen.  I tried to give K lots of opportunities, while not pushing & she is finally much more agreeable to this sort of thing & often initiates it herself now.  

We have been doing Handwriting without Tears for a while now but sometimes it is nice to do something new different so I try to have lots of different options for K.  

I think any kind of writing is helpful to gain the fine motor control needed so we use lots of different mediums.

I have a peel & stick chalkboard in K's room for her to play with whenever she wants.


We like the magna doodle for in the vehicle. It's pretty sturdy & I don't have to worry about losing pens. We do take coloring sheets or blank paper & pens at times but the magna doodle is our constant travel toy.

This Giant wipe off book is a fun way to practice letters. It was a 50 cent purchase at our annual town wide rummage sale which raises money for local events - win, win!



and another rummage sale purchase - this Discovery Toys printing set cost $1.00 & is so much fun with multicoloured pens.




I often leave a different style of pen, crayon or paint brush on her little table that sits in my kitchen to hopefully entice her to do some art.


I printed off worksheets from First School & ones like this from Preschool Learners - There are thousands available on the internet & I love that I can just search for whatever K is interested in to use activities she enjoys to learn with.

I recently discovered this printing worksheet maker - with this I can make any kinds of sentences which is great for keeping K interested.

These are just a few of the printable options but there are thousands & thousands available on the internet.  My favorites are actually bookmarked on our other computer that I isn't here right now but there are many other great sites. Sometimes I will just do a google image search  - I always get lots of great ideas.

K's handwriting is starting to improve.  Sometimes her art is not recognizable - she still enjoys filling in the entire page on her magna doodle, but then some days I get artwork like this:


What activites do you use to help your kids with printing?  Please feel free to share your ideas & links in the comments:)

Sunday, November 4, 2012

Canadian Down Syndrome Awareness Week - Winter Gardening & Skiing

I've talked before on my blog about the fact that we try to eat healthfully.  One of the ways in which we do that is to grow our own garden.  Now, as any good Canadian gardener knows, carrots taste better if you leave them in the garden until there have been 1 or 2 good frosts.  The downside to that?  It could mean there's snow to follow soon.  Usually I have enough time to get my carrots in & usually I figure the snow won't come to stay until after Halloween.  Unfortunately this week it came about 2 weeks before.....................& on a week where I was home for about 2/3 of a day in between the 3 day high school camping trip & the volleyball tournament that involved a hotel stay - not a good carrot picking week.  I kept waiting for the snow to melt but as it continued to snow & settle in for a long winter I decided that I better toughen up & head out to pick carrots.  At least the snow has sunk down to 3 or 4 inches from over a foot a week ago.


Good old Canadian maple leaf gumboots make great carrot picking footwear.
 

Gardening in the snow is similar to summer gardening except you need a few extra tools


  

A shovel to scoop off the bulk of the snow.
 

A rake to scrape back the next layer of snow


 and a broom to sweep away the last bits of snow


Sorry for the fuzzy picture but that's my daughter T helping pick some carrots after we got a section of snow scraped back


It was the most challenging carrot picking day we've ever had but at least it was a productive day!





As you can see from some of the above pictures, it was almost dusk as we were picking the carrots.  Earlier that day we went to our local ski swap.  We sold a few skis that we didn't need, everyone found a volunteer job, we visited with friends, some of whom we hadn't seen since last season & best of all, K hit the jackpot - New Skis!



I was hoping to find her a new pair today...............even though K loves her old skis.




 K's been using the same pair of skis for the last couple of years & they were just too small. K wasn't sure she wanted to give up her beloved flashy pink & orange skis but was talked into it when she saw how cute the new ones are.


We've planned a couple of ski days in the mountains with friends in early December before our ski hill opens & K is chomping at the bit to try them out so I'll try to update then.  K was just starting to get the hang of turning last spring so I'm excited to see how she does this year.

Saturday, November 3, 2012

Canadian Down Syndrome Awareness Week - Another Halloween post


Somebody has been pestering me to be Scooby Doo for Halloween for about the last 2 months now.  Every other year she has been some form of fairy or princess so I was worried that she'd change her mind at the last minute but nope, she was as excited as ever to walk out the door as Scooby Doo.  Thank goodness it is a roomy costume - she needed to be wearing ski pants, snow boots & a winter coat to tromp through the foot of snow we've got right now! This is the most snow I can remember seeing before at Halloween. Usually we get a little snow before but it doesn't settle in like this until November. I'll try to post a picture to add to this post of K out in the snow in her costume once I get a chance to get it off the other computer.



Friday, November 2, 2012

Canadian Down Syndrome Awareness Week - Reading Comprehension

I have always heard that for kids with DS, comprehension lags behind general reading ability. I have pondered this a lot, & keep coming back to the thought that I think this is true with many kids..........& to be honest, I have to admit that when reading on certain listserves that get very technical about DS, often my own reading level is beyond that of my comprehension! lol

 K's level of understanding when reading is below her reading ability, however, her comprehension is still at a mid 2nd grade level, & her vocabulary has tested between a mid 3rd grade to just below a grade 4 level. Yes, it is behind, but on the other hand, it is still way beyond where it should be for her age. I would not have expected my other kids at 5years of age to completely understand grade 4 material & not only that, because I had never heard of early reading, none of them could read before age 5. I am confident that K's comprehension will continue to progress so that she stays on track or ahead of her grade.

One thing that I really think has helped K with general comprehension, is that we talk about & explain everything. We did this even when she was a baby.  We always tried to assume that she understood & that she wanted to know everything about her world. Even when reading to her, we do this.  Although we often just read fun books, we try to challenge her by reading above the level she reads at some of the time, & often, when reading 3 or 4 books at bedtime, I will choose one that is nonfiction & meant for much older kids such as planets or dinosaurs. Last summer K & I traveled to an area with lots of irrigation equipment in the fields. We had a long talk about how it brings water to the plants in the field. Afterwards I found myself marveling at K's inquisitiveness & the many questions she asks. How often do we explain things like this in detail to a 3 or 4 year old? I think explaining daily life also has helped a lot with understanding of everyday things.

When teaching words we used programs or hand made flashcards that had a clear concise picture. 
Our favorite reading program is Little Reader made by BrillKids. When using this program you can easily show a picture with each word & customize everything to suit your child's needs. This at least helps them understand each individual word. When we worked on sentences, we chose files that were very descriptive with very clear pictures.

When reading a story, we always talked about the words & pointed out how it is happening in the picture, so even as a baby, K knew that the words were talking about what she saw in the pictures.

We tried very hard not to test K or put any pressure on her to read so we have had to find sneaky ways to test her reading. We have used action sentences to help K show us her understanding. Here is a link to a blog post that I did talking about this very subject & how we used some commercially made cards to test K's comprehension.

Thursday, November 1, 2012

Canadian Down Syndrome Awareness Week - More Alike Than Different


More alike than different.........................I bet you're wondering what that has to do with tomatoes right?

I had a dream last night that I want to share with you.  I thought it would be an interesting story to share today because this is the first day of Canada's National Down Syndrome Awareness Week.

In my dream last night, I was myself but K was a tomato.  A beautiful, delicious, red, & yes, just a perfect little tomato. In my dream it just seemed very natural that K was a tomato.  There was a big big basket of other wonderful looking little tomatoes.  I could tell that K wanted to play with them & I remember thinking that she was just a little different than them so I would be able to find her again so I set her in the basket with them.  She immediately started to wriggle around playing with them & within a few seconds I couldn't tell which one she was.  I kept trying to figure out how  I could pick her out of the others but there were no differences.  She was just as red, lovely & delicious as all the other tomatoes.  By the time I woke up I was starting to get frantic because I couldn't find my beloved little tomato. 

More alike than different.....................so true!

Happy National Down Syndrome Awareness Week!  I'll be posting every day this week in celebration of my wonderful daughter with DS ! I'd love to hear from my Canadian readers this week.  Please let me know your out there & if you have a blog feel free to post a link.

Wednesday, October 31, 2012

31 for 21 - Happy Halloween!

I've started using the Blogger app lately, mainly because we're having Internet trouble & I have service in my phone regardless of whether my house Internet is working or not. I'm uploading a few pictures but I'm not sure what order they're going to come up on the app. Anyways, here goes!

One picture is of K in her costume - she has been hounding me for at least a couple of months to be Scooby Doo!

Another is of the vegetable skeleton man I made for snacks for my 2 younger girls Halloween parties at school today. It was a fun idea that a friend of mind posted on Facebook & a great way to at least get a few veggies into the kids today before they left to go trick or treating.

The last photo is a pumpkin that my friend's 9 year old son grew. It is the largest pumpkin he has ever grown & although be usually sells his pumpkins he was determined that he needed to donate both the pumpkin & his time carving it (with lots of help) to the local extended care seniors residence. The pic doesn't do it justice but I'm estimating it is about 3.5 feet tall. Pretty good for these short Canadian growing seasons!

Tuesday, October 30, 2012

31 for 21 - T'was the Night Before Halloween.........

& all through the house, such a ruckus was occurring it was too scary for a mouse!

It's 11:40 & I escaped from last minute Halloween creations,  Halloween treat organizing, kitchen cleaning - yes I know there's a 1/2 eaten plate of food on the living room floor - the table was covered in a costume that needed another coat of paint still so we couldn't eat there. Okay, one quick blog post & back to making my costume - I haven't even started yet!!!  KEEP CALM & CARRY ON  right?

Here's some pics before I go:



 This is the pumpkin that T & K carved together
This is the same pumpkin after K decided she was old enough to carve a pumpkin using a steak knife!  Oops.........You can bet I watched a little more closely after that!


The finished products


Monday, October 29, 2012

31 for 21 - Growing like a weed?

Here is a picture of our informal growth chart.  We measure all of the kids on the doorway between our onsuite bathroom & walk in closet.  It's a pretty sophisticated method which seems to work well for us:)
 
The other day I heard K in there & peeked in to see what she was doing.  K had the measuring tape & a marker in her hand & was attempting to measure herself.  I helped our & this is what I discovered:
 
 
Notice how much K grew in the last 6 weeks or so?  She just had quite a growth spurt & I guess kids do have them randomly but the thing that frustrates me is that I often hear parents say that their kids grew when they gave them this supplement or that vitamin. Maybe I shouldn't expect her growth to correlate with her vitamins, I know they should be for general, long term health but it sure would be nice! We were more sporadic than usual with K's vitamins towards the end of the summer as we got busy with several mini holidays.  Then in September I decided to give K a break from her vitamins altogether & to reintroduce them slowly to get a better idea of the effects.  I had only restarted K on any vitamins the day before I took this picture.
 
What are your thoughts & experiences on this?  Do you notice many specific changes when your kids are taking different supplements?

Saturday, October 27, 2012

31 for 21 - Zip lines & high ropes

A few weeks ago we took the girls to a high ropes course. K was too small to go on the big course but had a great time on the kids course. About a year ago, K was too nervous to sit on my kitchen counter! I'm so proud of her for getting over that fear. She did a great job navigating all of the obstacles & even went down the zip line by herself!

Thursday, October 25, 2012

31 for 21 - iq Testing


We have decided not to allow iq testing for K. I admit, I'm kind of curious as to how she would do but I'm also afraid that she would be denied the few bits & pieces of help she's received through the school. I'm not concerned about OT & PT but I do like the speech therapy (even though they are few & far between) as well as some of the supplies like the Handwriting Without Tears program & oral motor tools we're able to use through the school.

Here is the response that I wrote on the subject on an online forum today:

I have watched this subject with interest whenever it has come up on various boards over the last few years.

First of all, these tests are generally not designed to adapt to kids with any sort of speech delay. If your child has any speech delay it will be noted as a cognitive delay.

Iq tests are only indicative of your child's ability to take the iq test & only an indicator of that ability on the the actual day of the test - they may score higher or lower if doing the test on another day.

These tests are often used to deny services if the score is higher or to "prove" that a child doesn't have the ability to learn certain things if they score lower.

I see no reason why my daughter can't be tested in the same way as her older sisters in order to identify her strengths & weaknesses in order to teach her appropriately.

The Canadian Down syndrome Society has released a position statement in this subject:

www.cdss.ca/positioning/positioning...

I will be providing a copy of this to the school when it comes time for me to refuse this test.


What are your thoughts on iq testing?

Wednesday, October 24, 2012

31 for 21 - The Thinking Mom's Revolution

This is a blog that I have been enjoying lately. It is written by a group of moms who have kids with autism. These are wise, insightful, mama bears who fight for their kids & best of all................The Thinking Moms get me thinking too!

I think the following link is the blog that really made me realize that these ladies & I were on the same page. This blog made me laugh but at the same time I totally understood - it was posted just a couple of days after I showed up at K's preschool with a bottle of homemade, organic cleaner for them to use to clean tables at snack time so it was very timely for me.

http://thinkingmomsrevolution.com/wp-content/uploads/2012/09/What-have-you-said1.pdf

& here is the link to their homepage.

http://thinkingmomsrevolution.com/read-the-blog-here/

Friday, October 19, 2012

31 for 21 - Just one of the Moms

I wrote this blog post back in July when K took swimmimg lessons but never got around to posting it.  I actually wrote a post on K's current swimming lessons a week or so ago and posted it here in case you're interested in reading it.


I've been writing this post in my head since Monday morning when K started swimming lessons. I've written it & rewritten it several times in my head as the events of the week have progressed. It started out as a much different story & although there were times this week when I was very frustrated, the week improved dramatically & I have to say that I am content with the final version that I am able to write.................... & very proud of my little girl!

Last year K passed her preschool swim lessons last year so on Monday morning K started swimming lessons in Level One.   She was in a group with 8 other kids. One little boy is a few months younger (but a lot taller) than her & the rest of the class ranged between 6 & 8 years.  The lessons took place in an outdoor pool.  Unfortunately, K can't stand up even in the shallow end because it is still too deep. There are 2 separate swimming lessons each day.  The first was in the shallow end & the second was in the deep end with life jackets on.

 Within about 10 minutes of the class starting, K pulled herself up on the edge of the pool & took off from the instructor.  With 8 other kids to worry about the instructor couldn't very well be running after K all the time.The pool is fenced off so I ended up leaving the spectator area where all the other moms were to watch from the edge of the pool so that I could return K to the pool when needed.  K wasn't upset about going back in & paid attention for a few minutes but then would get out & run away again.

The 2nd thing K was doing was acting very helpless.  The girl who has jumped off the side of the pool & bobbed up to the surface with a grin since she was barely 2 years old was waiting for the instructor to hold her hand & gently help her pop into the water without letting her head go below the surface. K is very comfortable in the water,  Here is some photographic evidence of her swimming in case you are interested - she looks so little & cute here!   When she was supposed to be jumping into the pool K would wait until the instructor held out her hand & gently helped her jump in without even getting her head wet.  When the kids were supposed to do a front float, the instructor helped her again & didn't let her head go into the water. K wasn't the only kid that she was being careful with but it was understandable with the kids who were nervous about the water - K is  not.

My little fish wouldn't even put her head in the water when asked to!   She passed the previous level with flying colors & only a week before her old instructor insisted she was very prepared for level one.

I was a little surprised at K`s behavior & tried to figure out why it was going so badly.  When she took swimming lessons in a different indoor pool back in October she behaved so much better & rarely needed a reminder to behave or stay with the group. K has always had a mind of her own but lately has been testing the limits even more. My husband & I try to be firm about the rules however K knows that she can get away with a lot with people who don't know her so perhaps this was the problem.

Next I wondered if it was just a lack of maturity but then again, she did so much better 8 months earlier.

I was sure from the start that part of the problem was that there were 8 other kids in K's group.  By the time the instructor worked with each of the kids, K had stopped paying attention - some of the other kids were finding it a little too long to wait too. 

I think the fact that K could  not touch the bottom & had to hold onto the edge of the pool for most of the lesson was a factor too.  I am very proud of her for being able to do this for a full 40 minute lesson.

I have to be honest here & say that it bothered me to have to sit  inside the pool area & not be out with the other moms in the spectator area for a couple of reasons.   First - because I know K can behave better than she was.  2nd - Some of the moms know her but many do not.  I don`t often feel like people are judging K but when she is behaving badly but I know they sometimes think that it is because she has Trisomy 21.  Any other kid  could behave badly & they wouldn't bat an eye but with her they blame her extra chromosome or assume she doesn't understand.

Day 3 - I finally had a breakthrough.  I realized that the life jackets they were using for the deep water session were quite different than K`s usual floaty & probably much more awkward for K`s short arms.    Although K has been to this pool in previous years I realized that she was still a little nervous about not being able to touch the bottom.  It has been 11 months since she has been to this pool & the one we swim in all winter is a zero entry pool. I couldn't do much about the pool depth of course but I did talk to the instructor on Wednesday morning about allowing K to use her usual floaty.  Thankfully, she agreed that this was a good idea.

Suddenly, I had a new child.  No more getting out of the pool & running away & she had much more confidence in everything she was doing.  Most importantly, she starting paying attention & responding much better. I think the floaty made a big difference but I think the biggest problem was just the unfamiliar pool. By  Wednesday K was getting used to the pool.

Within 10 minutes, I realized I was no longer needed & went back to find a seat in the spectators areas.  It was good to be back & it was good to see K behaving appropriately like I knew she could.

K continued to improve dramatically during the next few days & by the end of the lessons she was one of the better swimmers in the group.  She passed all the areas except for the back float but again I think this is still just an issue with the pool depth as she does it at home.  I think she is nervous about jumping backwards of  the edge of the pool & worried that the instructor won`t catch her.

Next summer I plan to let K swim in the pool a few times before she starts swimming lessons. I'm confident that it will help her swimming lessons to go a lot smoother.

Just for fun I've added a short clip from our pool this afternoon.  I missed the first part of the dive (K doesn't jump anymore, she dives), but I think its kind of cute how she swims with her head underwater for a moment before she comes up for air.

Thursday, October 18, 2012

31 for 21 - I Warned You:)

I was pretty sure that I wouldn't be able to keep up with 31 for 21 & this week I fell behind. I'm 1/2 way through an exhausting but fun week. My suitcase is packed, kids are in bed & all is ready for a really early start for my oldest daughter JC's volleyball tournament so I I thought I'd try to write a quick blogpost.

I was gone from Monday to Wednesday supervising JC's high school camping trip. I got home yesterday afternoon just in time to shower & rush off to T's volleyball game. Today I was home until 3 before going to KJ's volleyball game then heading across town to JC's gam which took until about 7:30. Tomorrow morning we head to JC's tournament a few hours away. My husband was home looking after the kids until Wednesday when he went to a course in the city, leaving a few hours before I got home. He will meet us at the tournament, watch a few games & take T back home to her tournament which is on Saturday. K & KJ'S will have to miss Saturdays swimming lessons because I can't see how we can fit that in but at least they'll get to swim in the hotel pool. I hope you were ably to follow all that because I'm having trouble keeping up!

When things slow down a little I'll try to blog a little more consistently but in the meantime ill leave you with a pic of K playing volleyball.

Monday, October 15, 2012

31 for 21 - Big Kid Stuff

This is my first time using the blogger app so I hope it works!

That's me! And my oldest daughter, JC. For the next few days I am a chaperone on her grade 10 camping trip. I can't believe I have a kid in high school already! My husband is at home holding down the fort with the other 3 & it sounds like things are going well. We'll need a bit of tag team work on Wednesday as I arrive home & he heads off to the city for a seminar then again on Friday as I bring the kids up to the city for volleyball & he will take one or two home but I think we've got it all sorted out. what a whirlwind! In the meantime, I'm going to enjoy this quick getaway:)

Sunday, October 14, 2012

31 for 21 - More Light at the End of the Tunnel

It's 1:26 am - a rare night out with my husband & a few other couples. Technically I've missed today's 31 for 21 post but even though it's really late, I want to quickly share today's events. Oh my, I'm tearing up again! I'm so proud of K.   She started swimming lessons again today. I was holding my breath a little as she got started because she had a bit of a rough start with her lessons this summer & although we had figured it out & resolved the problem I still had some nagging worries. I know I shouldn't but I did...............K aced it today. I could not have asked for a better behaved little girl & although she was only about chest high to the rest of the kids in her class who all happened to be 1 or 2 years older, she fit right in skill wise. According to her instructor, "She did great!"

The light at the end of the tunnel is looking more beautiful every day!

Friday, October 12, 2012

31 for 21 - More First Aid Practice

K has a fascination with doctors & playing doctor which is pretty funny seeing as she is a little unsure about going sometimes. We try to treat most minor problems naturally at home & she is healthy so doesn't have to go to a doctor often - just the odd check up which now amount to only 2 or 3  per year.  She has been to the dentist more often lately though & thinks he is the coolest guy she knows! I do have to insert a little brag here. Last month she had a routine blood draw & although she was a little nervous, she did great they managed to draw enough blood on the first try!  She has always been tough to get blood from & usually it involves a couple hours of waiting & 2 tries before eventually dragging the wonderful doctor who used to work in a NICU out of his crowded waiting room to do it.

Anyways, K loves all things doctor & has for a while - check out this post for some cute pics of her practicing CPR.  Last week she found her older sister JC's manual from a recent first aid course & reads it & looks at the pics every chance she gets.  It is her most read book of the week with only the Sears Wish book coming in at a close behind. 

K was given this first aid kit & was thrilled from the moment she saw it.   Of course she had to be the doctor so she dressed up in her housecoat & told me that "The doctor would be with me in a moment. "  She cracks me up!  Where does she get this stuff from?

She then proceeded to empty out & inspect everything inside. 


Then she went in search of a patient.



 ............& of course I needed a few bandages on my owies.


Next it was her turn. 

Afterwards when I had to go make supper & she decided to fix her dolls.  She was so comforting to her patients &  I had to giggle when she told them "Come back again if you don't feel better soon".

Thursday, October 11, 2012

31 for 21 - Waiting for the Other Shoe to Drop

A while ago, another mom commented on her blog thatso far everything was going quite well with her little one with trisomy 21 & that she was "waiting for the other shoe to drop".
This was my reply:

This sounds so familiar. At first it was medical & health. By the end of the 1st year, & certainly by the 2nd, I was able to breathe a sigh of relief that, besides very minor concerns, we are fortunate that my daughter has been very healthy.

Then my concern turned to fine & gross motor. So far at age 4.5, K is doing quite well with gross motor & rocking fine motor. She is reading well & doing simple math.

I am so grateful to be 4.5 years into this journey & still wondering why people say life with T21 is hard. I'm sure for some people it is, but I think most of us feel like you - It really is a thrill, a joy & a privilege to parent my daughter.

Well,  now I'm over 5 years into this journey & still feel the same way.  It's true, I'm a optimist, a glass half full kind of a gal but still I just don't see that other shoe coming.

Wednesday, October 10, 2012

31 for 21 - Let it Snow, Let it Snow, Let it Snow!!!!!

 I was the parent volunteer at K's school today.  It was drizzling a little when we arrived & we were so busy that we had no idea that it had snowed until we stepped outside. I did have the forethought to look out K's winter coat but she does happen to be wearing her barney rubber boots still.


 There's talk about skiing at my house already!


...............but I feel bad for my daughter T who has cross country running finals tomorrow!

Tuesday, October 9, 2012

31 for 21 - Fun Memory Building Game.

The Fist Full of Coins game was recommended to me by a member of the BrillKids forum.  I purchased it this spring & have been enjoying it ever since.

 We originally purchased it as a memory building game & it is great for that but we've also found that it is really good for helping K practice her reading comprehension skills.




The game starts out with very simple instructions & builds in difficulty from level 1 pictured above to level 4 cards in the two pictures below - level 4 cards are quite challenging even for my older girls & myself. Coins are given out after each attempt with the player receiving more for a success. If necessary, you could adjust this game in many ways to either target different skills such as having the instructions read out loud to the player rather than read it themselves or to modify it to be easier for younger players.


It actually looks easier when you see it already done below but as you can tell from the card above, there is a lot to remember.


The great thing about this game is that all of my kids can play together & even the older ones are challenged - very few games can cover the ten year age span between my kids.


Has anyone got any other great games to suggest?

Monday, October 8, 2012

31 for 21 - Sailing to Solutions

I just realized that I haven't posted about this cruise yet. Sailing to Solutions is a 5 night cruise which leaves Florida on February 25, stops in Haiti & Jamaica then returns to Florida on March  2nd.

This cruise has the most incredible line up of speakers!

If you have a child with T21, in my opinion, this is the most informative event you  will find. In the 5 years since K was born I haven't seen a line up of speakers that can compare to this.

I want to go so badly but I'm not sure if it is going to work out. By the time we pay for flights to Florida we are already doubling our cost. Hopefully it will work out & l'll see you there!

If you are interested, there are more details on Andi's blog here:

http://dsdaytoday.blogspot.ca/2012/02/2013-ds-conference-cruise.html?m=1


Sunday, October 7, 2012

31 for 21 - A Quick Update

Today will just be a quick update because we are on day 4 of a quick trip to visit with some of my family.  We are heading home tomorrow & I'll be posting some pictures & videos in the next few days but in the meantime, a few highlights:

We've met up with a couple other moms of kids with T21 & had a great visit with both of them.


We tried out a high ropes course. K was too small for the big course but did great on the little course & did the zip line by herself!

Today my older girls & I tried out a surf simulator for the first time. I had a blast! Again, K couldn't join in as she was about 6 inches too short but she enjoyed the wave pool,  & the river. Although the water on the river was way over her head, she did a great job of holding on to her pool noodle as she bobbed along the river.

Tomorrow we'll have breakfast at what I'm told is a fantastic breakfast spot but if you linger too long, the owner boots you out the door so he can free up the table for the next group! I'll have to see if the food is worth it!

Then the long, long trip home. The sad part is that it'll probably be me that starts complaining about how long it is before the kids!  Thankfully, they have always travelled well.