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.
Monday, January 27, 2014
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.
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.
&: "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.
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!
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.
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.
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.
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!
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 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
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.
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