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 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.

Wednesday, November 6, 2013

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

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!

Tuesday, November 5, 2013

Canadian Down Syndrome Awareness Week : Fine Motor & More!

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

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!

Monday, November 4, 2013

Canadian Down Syndrome Awareness Week - Local Awareness.

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! 

Saturday, November 2, 2013

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

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?

Friday, November 1, 2013

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

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!

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 Halloween post.