Down Syndrome - Up Up Up and Away!

Sleep Apnea Live Question and Answer Session

2015-06-24T07:03:00.001-07:00

I received an email the other day from someone representing Cincinnati children's hospital medical center live event team. They are hosting an upcoming live question & answer session which they are hosting for parents of children with Down syndrome who experience obstructive sleep apnea.

I'm very interested to hear what they to say!

The event will take place on July 23 from 7-8 pm EDT. During this event, parents will be able to chat with Cincinnati Children’s doctors who specialize in treating sleep apnea in children with Down syndrome.

You can read more about the event by clicking on the link below

http://chldrns.org/1J80EnM

I'm back!!

2015-05-26T21:38:00.001-07:00

Apparently it's been about 8 months since I blogged last. I'm hoping to get back to blogging a little more often. This last year has been beyond hectic though. I had a very small home business & as K was heading off to grade one it seemed an opportune time to expand. The carpenter was here from January to May & I was the carpenter's helper, errand girl etc. He finished in late May & by June we were already so booked up that we undertook a second expansion immediately followed by a facelift on the existing business. In many ways it has been a good problem - we live way out in the country so to be so busy is great however my time has been extremely limited.

The facelift of the original business was finished literally hours before it was needed for the Christmas rush. By January, for the first time in over a year I started to feel that I was getting things under control but life took another turn. I pulled K out of her main teachers classes & began homeschooling those classes while having her attend for the other teachers classes as well as joining for all field trips etc. I love the time we spend together each day & am very careful to minimize interruptions & make the most of those hours. Because K is not attending school during the regular hours it also means that at least 40 minutes of my day is now driving her to school plus the time spent picking her up. I'll explain more in another post but thankfully school is going very well now.

Meanwhile my recently expanding business has been continuing to grow. In January I started hinting to my husband that we needed just one more expansion. By March he was in agreement & we undertook that project which should be complete as soon as I can set aside 2 more days to get finished.

I am now determined that we are not building again at least for many years - it's time to slow down & enjoy. I am grateful to be able to work at home but I need more time for my family again. We have always had a busy lifestyle but this last year is one of the few times that I've felt truly overwhelmed & it seemed to happen often.

Our oldest daughter graduated last Friday, our company has gone home, my house is cleaner than it has been in a year, I finally caught up in a year's worth of paperwork & I've only got two days of extra projects ahead. The light at the end of the tunnel is glowing bright!

I am happy to be back! More on the teacher situation in my next blog 😃

Kindergarten Update ..........Onto Grade One!

2014-09-01T21:10:00.001-07:00

For those of you who are working tirelessly with you little ones & not seeing much feedback yet I hope this will be some inspiration! It's tough to do program day after day, year after year without knowing whether our leap of faith will yield the results we are praying for.

K has now finished kindergarten & in our wildly busy whirlwind of basketball camp, baseball, a newly expanded business that has been so busy that we've already had to expand again immediately I've been to busy to post so here at last is my update:

Kindergarten has gone very well & K loves it! Within a couple days she started coming home & talking about all her new friends many of whom I'd never met so had to scramble to put a face to all of the names she mentioned. She made some wonderful friendships & for a child who once was quite shy she has really started to become much more social.

There were a few minor issues over the year, mainly in regards to her believing she could be a little more independent than is appropriate. Things like deciding to go sit in the entrance to the school rather than staying on the playground. She was too hot so it was a good choice but rather than okay it with the teacher she just went ahead & did it & they had to come find her.

At the start of the year she also didn't listen as well as she should at times. I often find that with new people she tries to see what she can get away with & this was certainly the case in kindergarten. K is my kid that when given an inch she takes a mile however other people often don't realize, or probably just don't expect this.

Thankfully all of these behaviours did improve as the year went on.

Now, onto the positives! K's report card consists of about 40 or so separate areas. These include physical activity, math, reading, behaviour, etc. They are given marks from 1 to 4. 1 meaning they don't understand the concept or follow through with what is expected at all with 4 meaning they always understand/do what is expected. Each of K's report cards got better with the final one having one 3 & every single other mark a 4!!!!!!!! I am one proud mama!

While I type tonight K is upstairs sleeping.......... tomorrow morning is her first day of grade one. As always, I'm excited to see where this journey takes us but again, like always, I'm sad to see my babies growing up. I'm not sure which is hardest, sending my youngest to grade one or my oldest to grade 12.................I'm going to have to keep busy tomorrow & a virtual hand holding from all of you reading this might help :)

Well, It's official :(

2014-04-03T10:10:00.003-07:00

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!

Getting Program Done

2014-02-20T07:24:00.000-08:00

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. We've occasionally tried a different , much less intensive program when I knew things were going to be extremely hectic for a short time.

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.

An Update & Our Latest Plans

2014-01-27T11:23:00.003-08:00

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.

Potty Time With Elmo App Giveaway

2013-12-04T21:20:00.000-08:00

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.

Craniosacral Therapy - Canadian Down Syndrome Awareness Week

2013-11-10T22:06:00.000-08:00

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.

Brag Time! : Canadian Down Syndrome Awareness Week

2013-11-08T22:11:00.000-08:00

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!

Canadian Down Syndrome Awareness Week: Cpap

2013-11-07T23:07:00.001-08:00

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.

Canadian Down Syndrome Awareness Week: The Little School that Could!

2013-11-06T21:18:00.000-08:00

This is a little off topic tonight but I'd love to share the story of my older daughter T's basketball team. This is the kind of community that K will grow up in. They say it takes a village to raise a child & I'm proud to call this village mine! The spirit is incredible & it is just the kind of community that will help guide & support K & teach her that anything is possible.

Again, this is being posted late. I wrote this last spring & forgot to hit post. I hope you enjoy the story of The Little School That Could!

People often don't really understand them I tell them how small our school is. We have 8 junior high girls - that's it, just 8 & that's a pretty average year. In order to have a team for volleyball or basketball everyone has to play.

Our older 3 girls also ski race & weekends like this one are hard. It the finals for basketball & my girls know they need to be responsible to the team however T is having a great ski race season too. She started out the season with a gold medal finish & has continued to place fairly well for the most part although just at the last race she slipped into 3rd place. This weekend is a 2 day race at a hill she enjoys & tends to do well at. It would be a great opportunity to move back up on the standings................ but she'll be playing basketball. T will make the Sunday race when basketball is done but will not start on Saturday.

Because of the small size of our school & the fact that everyone plays the team is always made up of girls of all shapes & sizes. One is tall but 3/4 are under 5 feet. Some are athletic & love sports while others might prefer a different pastime were they not so needed & appreciated. We also always have one of the younger teams as our team is made up of a mixture of Jr. high students & often a few are pulled up from middle school just to have enough to make a team. All the girls though regardless of size, age ability, & any other factor that could affect the success of a junior high basketball team are just that. A part of the team. In fact, they are part of one of the 2 smallest schools on the league &........part of a undefeated basketball team!!!!!!

All through the regular season & now past the first level of the playoffs they have not lost a game.

There is a local round of playoffs then one higher level. It is day one of the 2nd level championship & they won again!

What is remarkable to me is that you would not look at this team & think "Wow - they look so competitive" because they don't but they have played much bigger, competitive looking teams & won.

As the girls made their way through the regular season win after win & then into the post season I've pondered. Why are they able to pull off win after win?

- they have truly become a team

- the girls communicate well

- they've known each other since they started school & are so familiar with each other that they often seem to just know where their teammates are on the court at any given time.

- they have coaches who believe in them

- I truly believe that a part of it has to be the parents & community too. This final round of games is at a town that is over 2 hours from home. The 14 players are being accompanied by 13 parents. My husband would have been number 14 but we had to conquer & divide this weekend as our oldest daughter is playing in the high school basketball finals. The only reason that the kids outnumber the parents is that several families have 2 kids playing. It is this way any time there is a school event - our kids know we are there for them. When we are at an away game & still have the largest cheering section. I'm sure our kids hear us & know how strongly we support them & our school.

Besides that, I'm really not sure why they are doing as well as they are but what I do know is that it's the spirit of cooperation & teamwork that has brought them this far. They are a wonderful example of what can happen when everyone learns to work together & has the full support of a tiny but powerful community behind them!

Todays the final day. Wish us luck!

Footnote: the girls continued to play amazingly well but lost their first & final game at the same time. They played a very good game & it was close but exhaustion was setting in after playing with such a small team all weekend & they were up against a team with an overflowing bench who had 40 girls come for tryouts! Well played girls - 2nd place is amazing & we are all so incredibly proud of you!

Canadian Down Syndrome Awareness Week : Fine Motor & More!

2013-11-05T22:02:00.000-08:00

I actually wrote this post last year but never hit publish so I thought I'd post it tonight. It has some fun activities include some that are great for fine motor.

Between my 4 daughters, its now ski race, basketball (jr. high,high school & middle school teams), swim & dance season so I've been too busy to blog much. I thought I'd post some pictures of some of the activities we've been doing.

We've had this for quite a while but K still enjoys it.

We tried some graphing. We didn't have any jellybeans as indicated in the activity but these colourful markers work well.

This way how K spent her day at her older sisters basketball tournament. These giant size Jenga blocks were great fun! There were a number of other kids there that day, both older & younger. They all played so well together & these blocks were wonderful for such a wide variety of ages. K decided on this pattern herself

Pizza night! Here's K working on her fine motor skills by creating her own pizza.

Mastering buttons

A little handwriting practice with Handwriting Without Tears

This is a pit full of beans that the younger two girls had a great time exploring in at a children's museum while on holidays. It was pretty cool!

I always try to keep activities fun & exciting for K. Her she is working on her

fine motor skills by using tweezers to put shapes into her horse's cart.

Canadian Down Syndrome Awareness Week: Running Update

2013-11-05T22:00:00.001-08:00

The days have been getting cooler & chilly breezes have been blowing across the prairies warning us that the winter will soon take hold. K has been insisting, regardless of the weather, that we run outside these last few weeks. Unfortunately we've had enough snow fall in the last week that we are likely stuck inside on the treadmill for most of the next 5 or 6 months.

It has been great to take advantage of the warm weather while it was here though & somehow in the last few weeks I've seen such a huge change in K's running. Her stamina seems so much better - she runs the whole time & rarely seems to need a break. Tomorrow we'll run on the treadmill & I'm curious to see how her times have changed. I think some of it is just an endurance that she's built during the summer but I wonder if our new running "path" is part of the change. We have usually just run on the county road that runs by our farm but lately K wants to run in the fields. This means up hills, down hills, avoiding gopher holes, sloughs & livestock, & usually with a pet or two tagging along, but it sure helps build strength & agility!

I am going to miss our runs in the field but in the meantime, "Hello treadmill" with K's favorite, loud, rocking country tunes cranked up!

Canadian Down Syndrome Awareness Week - Local Awareness.

2013-11-04T12:11:00.001-08:00

On the weekend my middle two girls played in a volleyball tournament. Halfway through the day as we moved between gymnasiums I noticed this poster tacked on the wall.

First of all..............I love this poster! It's a little cheeky but really gets the point across

I've seen this poster before but always within Down syndrome & disability circles. I was so excited to see it at a local high school!

National Down Syndrome Awareness Week:Learning About Money - Can I Go To the Mall Please?

2013-11-02T22:57:00.000-07:00

This has been in my drafts since last winter & since I'm posting every day this week I thought I'd post this today.

K loves shopping so I thought I should get an early start on teaching her the value of money! The nearest mall is about 1.5 hours away so we don't go often but she does often ask to go. Just this morning with the wind howling & the temperatures in the minus 40's with the wind chill my eager shopper's first request was to go to the mall. Unfortunately for her we had a "school is cancelled, stay at home, clean the house & play games day".

Like most little kids K loves to pay when we go to the store. When K is shopping with me one of the things I have her help with is getting the correct bills out. She has easily learned the difference between all of the bills & only occasionally has trouble with coins. Each time she is helping me pay in cash I first have her identify the bill then ask her if that is enough money. This helps her figure out more & less & perhaps one day will help her figure out the value of money. I'm expecting that to take a while though as I think her siblings all still think that there is an endless supply ;)

She does well at using an ATM machine for everything except the PIN code - with her love of shopping she can wait a few years & get her own card!

Another fun way we are learning about money is with the new learning cash register K got for Christmas. It has a coin slot that identifies the money, a scanner, full number keyboard & has a number of games to play. She loves playing store so we set up a little grocery store in her bedroom complete with a shopping cart, & food to purchase. The best way to learn is to keep it fun & this is a hit! The scanner gives random prices each time you press the button. At $8.27 each the peppers I bought today must be organic!

There are some money related work sheets on this page:
ABC Teach Math Pages

What do you do to help foster money skills in your child?

GROWL!!!!!!!! Happy Halloween!

2013-11-01T21:47:00.000-07:00

K can be a pretty funny kid sometimes.

She was excited to be a monster this year for Halloween. All through the school day & into the evening of trick or treating she dutifully answered everyone's questions explaining that she was a monster. At about 8 pm however things changed. I'm not sure if she was tired of answering the same question over & over or if she was on a sugar high after spending the last 10 days on a very clean diet which included no sugar but she started to change things up. We live in the country so we only go to about a dozen houses but the last few of the evening were the funniest. K's answers ranged from a lobster to a zebra - all met with surprise. She can be the funniest kid. I love her sense of humor!

Here she is wearing my mask that I created out of balloons on top of her own costume in another cute & funny moment.

National Down Syndrome Awareness Week!

2013-11-01T21:40:00.001-07:00

November 1st to 7th is National Down Syndrome Awareness Week here in Canada. I knew I couldn't keep up the 31 for 21 pace but I've got few 1/2 done posts as well as a few ideas so I thought I'd do a post a day in for this week instead.

First up...............my Halloween post.

Please don't assume................

2013-10-30T21:36:00.001-07:00

I've been debating for a week or two whether to write about this or not. It's not the sort of subject I usually talk about but it keeps coming back into my thoughts so I think that means that I need to share this story.

As I wandered through the grocery store one afternoon(probably trying to find real food in the land of artificial & convenience) I noticed a lady in a wheelchair struggling with the bathroom door which happens to be a very heavy one. An employee offered to help & she graciously accepted. The employee held open the door the lady entered the bathroom & expressed her appreciation. All's well.......but then it happened. The helpful employee reminded her to lock the door after herself!!!! I was astonished. In a single "helpful moment she unknowingly & effectively reduced a capable, independent adult who only needed a hand with a heavy door into a child.

..............................& I wonder why people underestimate my child?

How do you deal with people putting limits on or making assumptions about your child or loved one's abilities?

Trisomy 21 & Choline in Pregnancy

2013-10-23T12:52:00.001-07:00

http://www.news.cornell.edu/stories/2013/09/more-choline-mom-decreases-down-syndrome-effects

Interesting article - please ignore the references to "normal" babies.

Brachiation Ladder Tutorial

2013-10-10T22:50:00.000-07:00

This is the unedited version of this post. I have promised it to a few people though so I wanted to get it up right away. I am going to be busy & not able to get on the computer much for the next week so I thoughts I'd just post it as it is & try to read over it again later. It's almost midnight & I'm falling asleep at the keyboard so there's probably a few typos too :) If you have any questions or anything doesn't make sense please message or email me & I'll try to fix it or explain better.

I've been wanting to build K a brachiation ladder for quite a while. I even bought the dowel & hardware last fall but kept putting of building it because with the directions in Glenn Doman's Physically Superb book you need to drill holes & without a drill press it is hard to line them up just right...............at least for a carpenter with my experience ;) . I'm sure I would have ended up having to drill out the holes to get the dowels to go through & of course they wouldn't have been as snug.

Through the summer we have a old set of monkey bars in our yard but as fall closed in this year I again thought about ways to make a brachiation ladder. Being able to use them indoors makes a huge difference here in Canada where we have fairly long & cold winters. I posted the question on the Unlimited Potential (UP) group as well as the Down Syndrome Action Plan group. I got a great response from both groups & on the UP forum there were even a bunch of pictures posted. Check it out here.

None of the ideas seemed exactly right for what I wanted to do but they did get me thinking & I came up with a plan to make a brachiation ladder that was a little simpler to make.

This tutorial is for a ladder that is mounted directly to a wall or across a narrow room. The plus side is that you don't need to build the end supports but the negative is that it's not as easily adjustable.

note: I was concerned that because our ladder was going to be up against the wall that it would need to be a little wider. As it turns out that really wasn't a problem. This tutorial is to make a little wider ladder but you could always make the end boards & dowel a little shorter to make the ladder a little more narrow. Basically you can just build it to what suits you & your child.

First of all - this brachiation ladder is meant to be installed across a narrow room, hallway or any space that isn't too long. Before you get started you need to measure the length of your space to make sure you buy long enough boards.

Supplies

Tools - drill, hand sander, saw, tape measure, level, an extension cord will be handy

Materials -

Two long - 2X6's - This type of brachiation ladder is meant to be fitted into the wall or across a narrow room so you will need to measure your space & buy the appropriate length boards

Two 23" - 2X6's - I explained about K's physical program & K batted her beautiful eyes at the nice lumber yard guy & he walked over to his scrap pile, found a large 2X6 & cut it into 3 large chunks - way more than we needed!

tip - many hardware stores will cut the boards for you after purchase. Measure carefully though as you want it to fit very snugly into the space you are putting it in.

1" dowel -for the length of ladder I was making I needed 3 lengths of 1" dowel. Again, this may vary depending on the length of your ladder space & which lengths are available at your hardware store.

3/4 " hole straps - don't buy 1" ones like I originally did as they are too big & don't hold the dowel tight enough - even these were a little large (as you'll see as you get a little farther in the tutorial) you may even be able to buy 1/2 " ones but check first to see if the dowel fits through.

Sandpaper - I bought a few kinds - some courser & some finer grit

twenty four - 3.5" screws - 12 for putting the ladder together & about another dozen to secure it to the wall.

approximately forty eight - 1.5" screws

I just noticed that our newly adopted little dog & one of K's best buddies is in this picture. Isn't she cute?

The first thing that I did, which I don't have a picture of is to sand all of the boards excluding the dowel, first using the coarser sandpaper, then the finer grit.

Pre drill 3 holes on each of both long 2X6's.

Cut the shorter boards to 23 " & use the 3.5 " screws to fasten them to the longer boards using the predrilled holes.

measure the dowel & cut to 23"

Re sand the spot that your daughter drew on because she was being a carpenter & had to write some fancy symbols on the wood - normally I leave this kind of artwork but not this time :)

next you will need the hole straps.............................I mean clampy thingies (my brother told me to use that word in my tutorial as that's how I described them to him when telling him my plans for building the ladder).

This is what makes this method so much simpler than a traditional brachiation ladder.

Now here's where things get really technical ;) for those of you that don't already know, we live on a farm. Anything that can't be fixed with duct tape, binder twine or crazy glue can probably be fixed by bashing it with a hammer :)

The clampy thingies were still a little to loose so I bashed them with a hammer to make them a little flatter.

Mark the sides of the ladder frame every 10" (or whatever width you decide you want).

After bashing the clamps with the hammer use the clampy thingies them to attach the dowels to the 2X6 frame with the 1.5" screws. Make sure they fit very snugly. You don't want the dowel twisting as your child is brachiating. If they are a little loose then you need to bash the clampy thingies a little harder.

I seem to have misplaced my copy of Glenn Doman`s Physically Superb book (I can`t seem to find it at the Gentle Revolution bookstore so this is a link to it on Amazon) recently so I didn't use their measurements. I did go by the measurements on another blog but since K is used to her monkey bars that have a very wide spacing & because she's growing & I want it to last longer I made about 10" apart with each end being slightly shorter to make the dowels all fit on the length of our board. This seems to work very well for her.

Continue to mount the dowel along the full length of the brachiation ladder.

At that point the main frame is done & it can be mounted to the wall of whatever room you want it in. If you have a stud finder this makes the job of screwing the ladder to a secure place on the wall a lot easier. K's Daddy & 2 big sisters helped with this which made the job go much more smoothly.

K loves her new brachiation ladder! We've had it up for about a week & she plays on it often including a before bed but after story session. She is never the first up in our house but she is often up as soon as she hears someone stirring which is usually around 6:45 on a school morning. Today at around 6:15 my husband & I heard some movement from in her room. Several minutes later the light flipped on - yes she had woken up early & was brachiating in the dark before turning on the light!

So far we've been mostly just letting K play on it & most of my pics look something like this:

"Look Mom! I'm hanging upside down!"

Here is a link to another tutorial which is still modified but is closer to the Doman model

Guess What I Did Today?????

2013-10-06T20:54:00.000-07:00

Brachiation ladder tutorial to follow!

This is my version of a Doman brachiation ladder & took a couple of hours total. It only cost about $ for all of the materials. We mounted it directly to the wall which means that it doesn't take up as much space, was quicker to build & cost less. That's K's loft bed that you see to one side of the ladder. It is pushed up against the wall now so she does loose about a foot & a half of bedroom space but even in her fairly small room it's not too bad for space.

The only downside I've found so far is that literally 30 seconds after I put K to bed tonight I heard her get out of bed to use it...........................but who can blame her? Your own set of monkey bars in your bedroom is pretty hard to resist!

I took pictures as I built it so I'll post a tutorial soon.

Wow! What a difference!

2013-10-03T23:05:00.001-07:00

About 6 years or so ago when I was looking into neurodevelopmental programs & still in the stage of trying to decide if this was a path I wanted our family to follow, there was a forum called Child Brain. I spent quite a bit of time of that forum reading (not actually typing anything because I was too "online shy" at the time) & checking out past posts. I am forever grateful for those moms & dads on Child Brain because they were my first chance to see what a neurodevelopmental program was really like. They shared the good & the bad, the challenges along with the frustrations. They gave me a real picture of what life on program was like. Unfortunately the site crashed a couple of years later. It was months before they were finally able to get it online again, no one seemed to find their way back & the site was soon shut down permanently.

One important theme that I read over & over on this site was how important the physical component of a neurodevelopmental program is. The wise moms on Child Brain always insisted physical activities like creeping, crawling & brachiating was more important than the academics, so if you could only get part of your program done, try to give the physical stuff priority. If you don't help the child's brain to become more organized then the academics just aren't going to sink in.

This spring due to some confusion scheduling the appointment (probably my fault) K did not end up having her regular neurodevelopmental evaluation so I created my own program for her. I included math, reading, speech (sentences structure as well as we are working on the TH sound), auditory & visual processing, thinking skills, handwriting & a bit of sensory stuff. The biggest change that I made was that I really ramped up the physical activities, namely creeping, crawling & brachiating.

The interesting thing is that I just talked to K's neurodevelopmentalist yesterday after implementing this program for several weeks & she said that they are also starting to add more physical activities to their programs. K's next evaluation is in early September & there will likely be a lot more physical activity on it. I'm so glad to hear that my instincts are correct.

It has been only a few weeks & already I'm seeing changes. The biggest change has been in K's handwriting. It is much more legible than it was a few months earlier.

She also seems stronger with her digit spans & her upper body strength has definitely improved as well! I'm so glad we tried a back to basics approach.

Now for the really amazing part!

I have been noticing lately that KJ, my 10 year old doesn't have a very coordinated crawl . I talked her into joining us in creeping, crawling & brachiating this summer. shhhhhh..................don't tell her friends that part of the story ;)

Anyways, we didn't see a huge change over the summer. The only thing I really noticed was that by the end of the summer her reading interests had changed & she suddenly became a voracious reader like my other 3 girls. It was never a fight to get her to read but she just never seemed to have the same passion they did - she would often read comic books & graphic novels. Suddenly I realized that she was reading everything & anything including a book my 14 yo just read last year! I wondered if all that physical program could have had an effect but reasoned that it could also just be a coincidence.

Fast forward to early September & I am amazed at the difference! We did nothing that involved writing this summer so I as unaware until school started however K's handwriting has improved greatly! According to K, last year her teacher had to constantly remind her to write neatly so she could read it. She also made a number of letter reversals which made her writing hard to understand. This year her teacher keeps saying "Wow! you're writing is beautiful!" She is also finding spelling tests much easier as well as social studies. I wonder if the latter 2 could just be because she is so excited about the improvement that she is working harder however there is no disputing the handwriting - last spring even when trying her absolute hardest she could not write as neatly as she is doing today when not giving much effort.

Since last year I have been having KJ write out her spelling words on flashcards to teach to K. Here are examples of last spring's writing compared to now:

& a couple more examples - these are pretty average, not even the messier ones!

Another Kindergarten Update - Time for Compromise

2013-09-29T22:28:00.001-07:00

If you haven't read the past posts here are the links so you can understand the background to this post:

1st day of Kindy

Kindergarten Update - Frustrated

As soon as I started to suspect that Longvida Curcumin may be responsible for K's defiant behaviour I immediately took her off of it. Within in a few days I started to notice a return to her usual behaviour - Whew!!!! so glad to have my same old pleasant kid back! I was about to rip my hair our for a while!

In the meantime, we were already going into the 3rd week at school & the teacher, in light of K's defiant behaviour, was becoming very concerned. One of the other problems they have had twice in these first few weeks is K being a little too independent. One warm afternoon when the kids were playing on the playground K was too warm & went inside the school & sat inside the door to cool off. While that was a reasonable choice, she didn't tell the teacher first. This has never been an issue in preschool but I think with the number of kids the teacher is busier so K just didn't bother. It could also be that this summer we really didn't expect K to check in with us much at all. If she wanted to go outside or anywhere in the house she had the freedom to just do it so it could be just a return to the rules/structure again. This sort of thing has happened twice now at school & while we have dealt with it now, I can understand how they can't feel certain that it won't happen again. The cut off for getting coding in place is the end of September & while I'm certain the K is back to herself & I did explain the situation I can't help but completely understand their concerns. I'm so frustrated at the timing of this situation but feel I need to compromise.

One of the biggest reasons we were not coding K was so that she could get local speech therapy services. This is the only therapy that I want the school to provide for K. Her neurodevelopmental (ND)program does cover speech but I think this skill is so important that I feel the more practice she has the better. Kids who are coded have a consult type system with someone who travels from a few hours away & I really want someone local so I can be more involved & I think there is also a little more accountability. Not only that, they would see her much more often & therefore would be able to do a much better job assessing her speech. The other huge reason for wanting local services is that the SLP that K would see is familiar with ND programs! I never thought I'd find that in a mainstream therapist! Her daughter was greatly helped by a ND program several years ago so she is totally on board & interested in K's program.

So, K will end up being coded this year but they are able to get an exception & she can have the local speech services that we want for her. I do want the 1:1 for speech so she will be pulled out for this but that is the only time she will not be in the classroom - not for PT or OT which she will likely not get anyways. Some of the funding received will be used for an aide for a portion of the day - I'm thinking it will be for a couple of hours in the afternoon but am not completely sure. The aide is to act as a classroom aide & only give K the minimal amount assistance when necessary. She will be there more as an extra set of eyes so that when the current classroom aide is working with one of several other kids who need speech the teacher will have help because of the number of kids in the room.

As an aside, K's fine motor skills were on par until the last year or so. While a tad on the messy side, her printing can usually be read. K's program covers fine motor really well so if they end up doing any OT I don't want it during class time as that is so well covered at home. I do think that it may be helpful if they learn some ideas to use with the whole class but don't want OT to interfere with K's classroom time.

One thing that I am requesting is a vision assessment. A vision consultant will be coming out from the CNIB to assess K's vision & give suggestions. This will likely be much more helpful for myself as print in kindergarten tends to be very large anyways. Even if some things are written in a smaller font, they won't be long paragraphs & K can manage to read even very small print in small amounts.

Kindergarten Update - Frustrated!

2013-09-23T22:56:00.001-07:00

Well, so far after only 4 days of kindy I'm feeling very frustrated & very confused.

For the past two weeks K has been very defiant & uncooperative & of course that is carrying over to school. Don't get me wrong, she is loving school & I don't think the behaviour is related to school but the timing sure is horrible!

Over the summer we have been working really hard with K on her behaviour. As the youngest of 4 kids it seems like there was always someone there to help her comply with any directions we gave her & while her big sisters were trying to be helpful it wasn't helping K to independently follow directions so that was our main goal over the summer & I was really seeing her blossom & become much more responsible. After such progress it's very frustrating to see such a huge regression in behaviour especially at a time that I really want her to behave her best.

The other thing that I noticed is that she seems to be getting help with tasks that are very basic. The other day when I arrived a few minutes before the end of the day I was able to sit in on the class for about fifteen minutes. I noticed that after the kids were done painting the classroom aide helped K wash her hands. I also was quite surprised when at the end of the day K expected me to help her change her shoes. WTH??!! These are basic tasks that she has been doing for 1/2 of her life already!

So tomorrow I am having a meeting with the teacher & after that I hope K will have a little wake up call about being a whole lot more independent! We will also discuss her behaviour & hopefully come up with some solutions.

As for the grouchy behaviour I'm hoping a change in supplements will help. We ran out of Longvida curcumin this summer & coincidently received our order a few days before school started. K has had trouble with grouchy behaviour in the past when on the full dose so I have been giving her a half dose which she has always tolerated well. I'm wondering if the 1/2 dose is now too much for her too. It is such a great supp for her speech - the only supp that has ever really made much of a difference plus it is so great for brain health that I don't want to remove it completely from her diet but for now I've taken her of all supps just to make sure none of them are causing her behaviour problems.

Wish me luck tomorrow & cross your fingers, or maybe even say a little prayer that we get to the bottom of this soon!

Today's the day!

2013-09-13T21:22:00.001-07:00

5+ years of program & today is the day. Miss K headed our the door for kindergarten. Registered as a typical student with all the same expectations that come with it.

She was so excited this morning. She rushed through breakfast, took her lunch kit from the fridge & headed for the door a full 1/2, hour before it was time to go. By the time we arrived she was still chomping at the bit & announced that that she was heading to school by herself "Bye Mom!"
Of course I followed her into the school but I allowed her to head out in front & go through her morning routine by herself. She has only been at this school a few times before at her sisters sports activities but did go to the kindergarten orientation this spring so she knew just where to go & what to do. Once inside the classroom she wrote her name & sat down on the carpet, read books & visited with 2 of her preschool buddies until circle time started. The other moms & I left that point but everything seemed to be going very well.

K was tired but so excited after school & had lots to tell me about her first day at school. According to the classroom aide who I ~~stalked~~ accidentally bumped into in the grocery store later, K did very well. There was one incident where she refused to do something but when she was asked a 2nd time she immediately complied.

Whew! I know I should expect the best but I still had some nagging worries.

Today seemed like such a big day for so many reasons. For over 5 years we have worked to foster independence & teach the skills necessary to succeed. It have often felt like I was pushing her to be independent while fighting the urge to hold her back because sometimes I'd like time to stand still & all of my kids to stay little girls. I know I would have been this way with a typical child in many ways yet I also know that if she were a typical child I'd have worried less & paid less attention to details. Details like the cute yet easy to get on shoes she wore - my friends typical child has lace up shoes that she needs help with but I really felt that K needed to be able to do this by herself. Details like the containers in her lunch that she can open herself. She doesn't usually have trouble with this sort of thing but I looked things over just in case. I'd love to let her be my baby much longer but I also know that my role as her Mom is to give her the skills necessary to be independent.

I made sure I kept very busy during the day. One of the other moms & I went for coffee before heading home. I have a small appointment based business which I run from our farm so I overbooked myself just a little so I'd have to work at full speed all day ;). It kept my mind off of K & her first day of school although it wasn't as tough as I expected it to be anyways. As this last year went by & we slowly started approach the new school year I realized just how ready she was & that is one of the main thoughts I had when I did have a moment to ponder during the day.

The other thought I had was "This is it!" This is one of the big moments we've been preparing for. All those miles we've jogged & crept & crawled. The thousands of flashcards we've flashed & sentence strips & books we've printed & laminated & read to each other. The hours of digit spans (love them, honest ;) All of the things she learned from her 3 big sister, her Daddy & I. Today was the day when K was able to go out into the world on her own, make her own decisions & prove to the world that she is a perfectly capable little kindergarten student.

.....................& today, she rocked it!

All in all it was a very good first day!