Thursday, April 3, 2014

Well, It's official :(

K recently had an assessment at school with the CNIB.  She is now considered to be a student with low vision & while I'm not surprised, I was really hoping her sight wasn't this bad  :(

The evaluation was very helpful though & there were some positive aspects too. Although it was done through the school I was able to be present for the entire evaluation which was great because I was able to ask many question about activities such as skiing that don't really pertain to school.

I have known for a long time that K prefers very large print. I also know that she has the ability to read fairly small print because she will happily & willingly do so in very small amounts. However she refuses to read tiny print for any length of time. K's reading progress seemed to really slow down after she mastered level 2 readers. Both her opthamologist & optometrist warned me that "eventually" her vision may affect her reading ability but they made it seem so far off in the future that it took me close to a year to figure it out.  We started photocopying & enlarging short, 100 page or less chapter books & her reading started to progress again. While I now know that K greatly prefers reading large print during the testing it was obvious that, up close, she has the ability read really, really, tiny print! YAY!!!

Unfortunately, although she can read small print up close, her ability to see well decreases very quickly at even short distances.  At one meter her vision is 20/160.  This explains why when the teacher is using the smart board at school & all the kids sit on the rug watching K prefers to stand right in front of the computer & watch on it instead.

We had been looking into whether or not to get K some reading glasses.  The opthamologist gave her a prescription for reading glasses but was uncertain as to whether or not they would help.  We discussed this during the eval & came to the conclusion that K is using her glasses like bifocals anyways & this is probably more beneficial than a separate pair of glasses anyways.  K always uses her glasses when looking at things at a distance & then when looking up close she looks over them. This makes the print look larger & allows her to see it more easily.  It always amazes as to how smart kids are at finding their own solutions to things! So no reading glasses it is & K will continue to use her glasses according to her needs.

I was concerned about K's depth perception.  She is currently in level one in her Nancy Greene Learn to Ski program.  She has all of the skills needed to pass her current level & can do everything the other kids do except she skis more slowly. She is just not willing to go any faster. Because K has AAI we have always taught her to ski very carefully & only allowed her to progress to more difficult runs after she showed us that she skied completely in control. Some of her reasons for skiing slowly may be just that we taught to be so careful. It could also be that with 20/160 vision she needs to go slowly to see where she is going however I was also concerned with her depth perception.  Thankfully the testing showed that it is good - I only scored very slightly better myself & I'm sure I was much more interested in that test than she was!

They had another test which involved a story, in very large print thankfully, that got lighter in colour with each sentence. Even at the very end when the text was such a light grey that it really blended with the white paper she was able to continue to read the story! I'm so glad as this was another concern that I had with her skiing as we ski at night about once a week.  I'm still a bit in the dark as to why K skis more slowly than her buddies but at least we've ruled out my bigger concerns. The  most important thing is that she skis well, is careful, & uses good judgement especially when negotiating different terrains or features such as tabletops or jumps.

The evaluator had a few tips for the teachers although in kindergarten they mainly use very large print anyways.  The bigger help will be for K's reading at home because they are surplussing a machine (I've been on holidays for the last 2 weeks & forget the name of it) that allows me to enlarge any book for K so this will be a great help for her chapter books as well as for the New Practice Reader books that she uses for her neurodevelopmental program as the print is also getting smaller in these as she progresses through the levels. It will stay at home for her to use here.

K's nystagmus is likely the cause of most of her visions issues.  Andi talks about it in her blogpost.

We are doing various exercises for K's eyes as part of her neurodevelopmental program & while we've seen improvements but I'm still hoping to improve her vision so she is able to get her driver's license when she is older. 

While this evaluation didn't answer all of my questions I am happy that I have a better grasp on K's vision issues & I'm excited to try out her chapter books in enlarged print!



Thursday, February 20, 2014

Getting Program Done

One of the biggest challenges to getting a neurodevelopmental (ND) program done is finding the time to get everything accomplished. There have been times when this has been really difficult for us but it is often possible to  incorporate program into daily life. K herself is in dance & downhill skiing, & her sisters are active in several sports as well. It's pretty hectic even without trying to get any program done!

First of all it is important to know that it is okay to take a break if you need to.  There have been times when life has gotten so busy that  we needed to take a short break.  I find it best to plan a set date to start up again though as it's easy to put it off & days turn to weeks or even months. I've heard it said that doing a neurodevelopmental program is not a sprint but a marathon so you need to pace yourself & I think this is very wise advice.

Equally as important, it's okay if you don't accomplish what you want to in a day.  Let it go!  :) Tomorrow is a new day - wipe that slate clean & try again. 

 It's okay to be flexible too. Click here to learn what we are planning to do for the next month or so.

When I went back & read over this list it looks like we are constantly doing ND activities & fitting something in at every moment of the day.  This is not true.  There needs to be balance in life & although ours can be very hectic K gets lots of free time to do her own thing too.

The following list is a work in progress so I'd really appreciate if you can add your ideas to in the comments or by email to jtkkmom@gmail.com & I'll add them to this list so others can benefit.

Some  things can be incredibly simple such as playing audio stories, classical music or other music recommended by your neurodevelopmentalist while your child is playing.

The  biggest thing that helped me was to associate a program activity with some part of our daily routine.  We would not forget to eat a meal or change a diaper so we did a program activity with each of these.

When K was very little, even  before we started an ND program, we tried to expose her to all kinds of sensory input.  Dabbing a little essential oil or her or my clothing was very a very simple way to help accomplish this.

After the bath  was the perfect time to fit in some baby massage.

Potty training is a great time to do some activities while you have a captive audience! Flashcards, encyclopedic knowledge, even eye exercises!

& again with that captive audience............... we've used bath time  to get some of the above program activities done too.

Fitting program in to your daily life can mean simple things like tossing the stroller & letting your child walk even when it mean that a trip to the store takes a bit longer,

Instead of lifting your child up onto the change table, high chair, car seat, etc, have them grasp your thumbs & hold on as you lift them.

Label items in your house so instead of a planned flashcard session, so you & your child can read them as you come across them in your house during regular daily activities.

Our schedule changes but at times I have been able to get oral motor work done as I am making supper.

We  try to combine activities as well & that is how we are accomplishing our oral motor exercises at the moment. K has special glasses that she uses each day while watching TV or playing on the iPad.  While she is doing that I often have her do one of her oral motor exercises.                                                                                                                                                                      
We do digit spans each time K wants the iPad or gets into the vehicle.

Now that K is 6 she can be a little more independent at some activities.  In the morning when I am making breakfast I have her work on her math book as well as do some handwriting practice.  By the time she's done breakfast is usually ready too.

We try to incorporate crawling into other activities too such as crawling while we pick up toys.

 When she has a question we describe things in more detail than I would have thought to explain to my older kids.  Like in Glenn Doman's book where he says Don't tell your child its a doggy.  Tell them it's a breed of dog called a Golden Retriever, etc. etc. Give them  lots of specific information on the breed of dog. It only takes a few seconds longer to give a detailed explanation but the knowledge adds up.

While I'm not a fan of letting your child sit in front of a TV/computer screen all day & I prefer to watch with my child so I can be engaged with them, there were times when I had K watch BrillKids Little Reader to teach her words, concepts, encyclopedic knowledge.  I created my own playlists which had the content I wanted to work on with her.  Here is a link on their program & very generous discount program.

That is all that I can think of at the moment but please remember to share your ideas in the comments or send to my email. I need some new ideas too!


Here are some ideas that some other moms have shared:

Melissa said:
1. Know your program really well so it is easy to include activities when walking on the beach or playing. Just adding some jumping and ball throwing for example if that is a part of your program.
2. I write my program activities up on a big white board or on 4x6 index cards in big letters and place it somewhere I can see it easily. I prefer the index card method as then I can group and arrange and change the orders of the activities. I stick them on the door or wall with blue tack. Then when I am sitting down nursing my youngest I can look over the program and keep myself familiar. I clump them in logical groups to me so that I can remember them more easily when I am out, with the most important at the top so I know to work my way down. As I am doing program with toddlers, I cannot stick to a rigid schedule, so this allows me just to glance at the board and quickly pick the next activity that I think will be accepted well.
3. You mentioned this, but tagging program activities to daily activities is a great idea. Flash cards at the start of a meal time - done. I had trouble encouraging my son to do his processing activities, but he loves his supplements and gets many throughout the day, so now they have become a reward, he does a quick activity and gets his fish oil! It is great as suddenly he has a need to try.


Jennifer posted some great ideas on FaceBook:
We use car rides for a lot of our program. I have my 6 yo and 9 mo on program. We use the car for audiobooks, iPad apps, and audio processing. I also keep a small therapy bag in the car and let my husband drive most of the time (we work together). This allows me to sit in back with my little one and read books, do flashcards and anything else I can do while she's sitting down. Great blog post. Thanks for sharing!

I forgot to mention it in my post but we like to do program in the vehicle too.  Oral motor, eye exercises, & now that she is older I can hand K her math book or some handwriting sheets to do. 

Monday, January 27, 2014

An Update & Our Latest Plans

At the moment I'm working on a new building project here at home.  I have had a  business here at home since before my kids were born. I really appreciate being able to work from home & being able to work around  the kid's schedules. Most of my work is by appointment so I book at my convenience & when the kids were little I could work mainly when my husband was at home to watch them.Now that they are school (K goes 2-3 full days per week) I work mostly when they are in school.  Most weeks I work two part days but if we're really busy with other things I may go a week or more without working at all.I also have some duties that have to be done daily, morning afternoon & night however those times are slightly flexible. There are also rare weeks that I work 3 or 4 days . It is time though to build a new building for me to work in & although I've hired a carpenter, it is taking up huge amounts of my time to help with varnishing, painting, picking out flooring, lights, a heating system & just generally doing whatever needs to be done.

I am finding it very hard to fit in much program at all right now.  We also planned to miss our January evaluation anyways due to weather, scheduling etc.so I thought this might be a good time to try something different.

First  of all I need to be clear that I am still a very strong supporter of neurodevelopment & this is where I have seen tremendous results with K.  Nothing else has come close to this results so we will come back to it shortly.

We will still be doing few neurodevelopmental program activities too.  Reading of course will always be part of K's day.  We will continue with her math book & also try to fit in lots of digit spans & other memory  games.

On to our plans for the next few weeks:

I ended up with a free lifetime membership to Mendability a while back. It is a sensory enrichment therapy which is aimed mainly at kids with autism but is used for kids with Trisomy 21 as well as others. I've always  found it interesting but couldn't fit these activities in while focusing on K's ND program.  For the next 3-4 weeks I am going to try to complete the daily activities in this program. It is much less intensive so should be fairly simple after the fairly intensive ND program we always request.

They have a reporting system with evaluations before each new set of activities to help see any changes. I'll update on how it goes.

Wednesday, December 4, 2013

Potty Time With Elmo App Giveaway

Yesterday I received an email from Betsy who works for Sesame Street.  They are about to update the Elmo Potty Time app & are giving away some free codes.  She had found this post I wrote on potty training while looking for someone to help give the codes away.

Sesame is a company that I always enjoyed as a child but I have gained much more respect for them as an adult.  They are one of the first organizations who included kids with Trisomy 21, kids in wheelchairs etc just as a regular part of every day life.  No one is singled out as being different they just are.  Because of this I am quite excited to give away these codes.

Here is a link to the app Potty Time with Elmo.

If you're interested in a free code please leave a comment.


All the codes are gone - thanks everyone. I had a number of them but they disappeared fast!  I'll message you with the info tonight.

Sunday, November 10, 2013

Craniosacral Therapy - Canadian Down Syndrome Awareness Week

According to The Upledger Institute Craniosacral Therapy (CST) is "a gentle, hands-on approach that releases tensions deep in the body to relieve pain and dysfunction and improve whole-body health and performance."

&: "Using a soft touch which is generally no greater than 5 grams – about the weight of a nickel – practitioners release restrictions in the soft tissues that surround the central nervous system." 

We have had some pretty fantastic results with craniosacral therapy This blogpost is some bits & pieces about cranio treatments that I've written down over the last few years.

We live in a very small community & there are many services that aren't available here.  We are however very blessed to have an amazing craniosacral therapist. She is also a RMT, amongst other accreditation. Ms. E has very small hands - I often think she has the hands of a child but Wow! are they powerful.  I have a treatment myself every so often & am always amazed at how powerful & intuitive Ms. E's hands are.  

In the beginning we started taking K mostly for her reflux but various articles & books inspired me to take K's treatments one step further & we started a series of weekly appointments shortly after K turned 3. As time has gone on we have focused more on issues like nystagmus, & sinus & breathing issues.   

One of the articles that encouraged me to continue with more frequent treatments is from the River Bend Down syndrome site.  Here is a link but you'll probably have to type the title The Osteopathic Management of Children with Down's Syndrome into the search bar to find it.


People with very Trisomy 21 very commonly have breathing issues & sleep apnea. This plays a huge part in their general health, & if they are not getting enough oxygen, it can have an affect  on cognition as well.  This is what I am trying to avoid. Sometimes we notice that this type of treatment changes K's looks a bit. It is slight but the difference is there & over time I'm sure there will be more changes.  I do worry about that sometimes. We are not trying to change K's looks but if changing the structure of her face to help her body to function better also changes her looks then it is worth the health benefits. We have never been quiet about K's diagnosis - our whole community knew by the time she came home from the hospital at 6 days of age. I am proud of what my daughter can do 47 chromosomes & all & would only do something that may affect her appearance for the resulting health benefits.  K still looks like my adorable little girl but there is a definite difference in her nose.

By age 3  we could tell that K loved going to the craniosacral therapist.  She would repeat Ms. E's name over & over as we walked from the vehicle to her office.  This wasn't something K did often, so it really showed how much she enjoyed it. 

When K was 3.5 years she would lay quietly (for the most part) for a full 45 minute session. That alone tells me something!  She normally doesn't sit still for 5 minutes.  Even then she would tell me "Ms. E makes me feel better."

My oldest dd sustained a head injury a few years ago. For several days afterwards she had headaches, memory problems and was extremely tired She just wasn't herself. She was 13 so old enough to explain how she felt and said that she could feel the moment when all of the pressure was released & her head was fine. After the treatment she came home and slept from 3:30pm until 8pm, got up for just long enough to eat supper & went back to bed until 8 am the next morning at which point she woke up and was completely back to her old self again.  

A few months ago K when had another craniosacral appointment Ms. E finally had time to focus on K's nystagmus. I have been wanting to have her work on it but it is only in the last  year that K has been cooperative about letting her work in her mouth for longer of time as well as having the patience to stay very still for it. Ms. E has be very cautious in this area so if K isn't ready to stay very still it is not safe to proceed. K hasn't been to see Ms. E quite as often this past year & it seems like we have always had more urgent issues to attend to - a couple of K's older sisters had sports injuries that needed urgent attention so K had to give up a few appointments for them. It wasn't until this day that she was able to work on K's nystagmus.  The difference was incredible!  Yes it is still there but it had been getting worse again in the last 6 months or so & immediately after this treatment it is very noticeably decreased! This is not an issue that I expect to go away overnight but I do expect it to greatly improve & perhaps disappear eventually. Ms. E has a past client who came to her as a tween with quite noticeable nystagmus.  She is & is now a college graduate who is not hindered by her vision. She is able to drive & her nystagmus is gone.

Friday, November 8, 2013

Brag Time! : Canadian Down Syndrome Awareness Week

K brought home her first report card ever this week. I was a little nervous as I opened the envelope.........it seemed to me like she has been doing well but I was still a little unsure about seeing it in black & white just in case.

The good news? She rocked it! 

There are 4 categories.:
1. I know/do this very well
2. I usually know/ do this
3. I need Assistance
4. I am experiencing difficulty with this skill

K got almost all 1's & every academic category was scored a 1 - even gross motor coordination which is a little tougher for a kid with lower tone. There were a few 2's & they were not a surprise. They were for things like exhibiting coordination in fine motor/ printing legibly(which is really improving) &  following  directions - which has improved drastically after that blip we had the first couple of weeks of school explanation here:


She did not get any 3's or 4's at all! 

We went for a child led parent teacher interview last night. The thing that excited
 me the most is that for the first time I was able to see how well K can learn in a 
large group. I am very confident of her abilities to learn in a small group & of 
course one on one but 15 kids is a big jump from the 5 or 6 kids that were in her 
preschool class. They are working in a phonics program that has little actions 
for each word. K was able to show me an accurate sign for each letter they had 
learned & even a few that they hadn't worked on yet. 

I'm so proud of this kid!




Thursday, November 7, 2013

Canadian Down Syndrome Awareness Week: Cpap

K does not have sleep apnea however she has had several sleep studies to rule it out. You can  read about our experiences & some tips on "Surviving a Sleep Study" here. Many kids with Trisomy 21 do have sleep apnea though & one possible remedy is a CPAP machine. I have sleep apnea myself & have had a CPAP machine for a number of years so I thought I'd post some tips on using one.  These are from my own experience but I tried to think of it from a child's point of view.  I hope those of you in this situation find them useful.

Try to get a mask that fits well & leave it as loose as you are able - don't believe the helpful technician who has never actually worn one when they tell you it can be quite snug.

See if you can turn the pressure down as your child adjusts to using a CPAP machine.  Gradually adjust it upwards over a period of a week or two until you reach the prescribed pressure. 

Get a machine with a ramp feature. This allows the pressure to be set  lower as your child is falling asleep then ramp up later - a 1/2 hour delay is common.

I would also start out expecting your child to only wear it for a couple of hours then gradually increase the amount of time your child wears the mask until they are able to tolerate it for most of the night.

Watch for any irritation. You may have to switch masks, adjust it differently or put on some cream to prevent further rubbing & irritation while it heals. 

Explain everything & practice trying the mask on your child while it is not turned on & without the hose attached during the day when your child is in a more receptive mood. Waiting until bedtime when your child is tired to try it on for the first time may not be as well received. It may also help to try it on yourself & any cooperative siblings or even a favourite stuffed animal. 

Create a social story book  (in all your free time;)  with pics of your child using the mask & explaining what he needs to know about it. 


If any of you have used CPAP for your child I'd love to hear your tips & ideas on how to make it more successful.