Friday, October 25, 2013
Recharged
It feels like a year since I last opened my blogger account...to write. However, on Wednesday, October 30th it will be only THREE months!
When you do something....anything....every single day it just becomes a routine. The norm. And sometimes you have to take a step back to see what others see. To see your life and every thing around you from a different perspective. For one day or ten days or months....do not do the norm.
A break. A hiatus. A holiday. A vacation. Whatever you call it....take it.
That is exactly what I did. What I needed to do.
Challenging myself to blog for 365 days...in a row...about my daughter with special needs was not easy. Finding the gift she gives to me daily...was challenging. Some days it was blatantly obvious, while others I was still searching well into the night.
Blogging about my true feelings and opening up to friends, family and complete strangers was hard for me. However, I knew keeping everything bottled up inside would only make me feel worse. I knew getting it out would not only help others who try to understand our world get a better picture...a better understanding, I knew there was probably another parent out there who was struggling with the same feelings I had and I hoped my words gave them strength and encouragement. For everyone I hope my gifts from my nonverbal daughter, was a chance for everyone to reflect on their own gifts...in their own families.
Since I have completed my challenge...to myself, I have made many changes in my own life. For the better. I have truly seen what is important and what matters. I feel energized and ready for the next challenge. Right now, I do not know what that is, but I am sure it is not too far away.
My blog, 365 Days of Gifts from My Nonverbal Daughter has come to an end. However, the gifts do not. The gifts my daughter has given to me....to you....will continue to give every time someone reads them.
Thank you for sharing the past year with me and I hope you will continue to follow our everyday journey over on my other blog which took a holiday when 365 started. Here is the link http://www.our-everyday.com
Cheers!
Emilie and Anna Cate.....my amazing daughter who keeps on giving....every.single.day!
© copyright 2012 – All rights reserved
365 Days Gift
Tuesday, July 30, 2013
Patience
Today's gift is patience.
I have wanted to write a post about the gift of patience for a while; however one day it came to me that this gift would be best as the last gift.
Why? Because the gift of patience is one I work on...every...single...day.
My daughter is one of the most patient people I know. She waits for so much and after she waits she probably is hoping and praying we know what she really wants!
Being patient is hard....probably one of the hardest things to learn and to practice.
I have learned from her that everything takes time and you have to be patient. As much as I would love for things to happen overnight, they do not. I have to take a deep breath and trust, if it was meant to be, it will happen. If it doesn't happen then it wasn't meant to be or the timing wasn't right. It has taken me a long time to try and practice living this way....and I still work on it...daily. Some days I am better at it than others. But just when I need a reminder, my daughter will show me a sign that I need to be patient.
My patience is tested daily. All three of my children test my patience and some know how to push me over the edge more than the others. However, of all my children, it is my nonverbal daughter who truly understands what patience is. Can you imagine waiting for someone to unlock the magic gene so you can talk? So you can use your own two hands...functionally? So you can walk around without having someone be within arms reach? So you can have privacy? So you can live the life you deserve? And while she waits so patiently....for just about everything, she does it with a great attitude.
I honestly do not know how she does it. I honestly do not know if I could do it. She simply amazes me. And at the same time it kills me to have to watch her wait....patiently, when of all people she should be demanding!
Watching my daughter deal with her struggles associated with Rett Syndrome, old and new, is truly inspiring. Over the last 365 days I feel like I have connected with her on a whole different level. I have so many emotions going through my head as this chapter...this challenge....this blog comes to an end.
I am rejuvenated as I have learned so much more than I ever thought possible.
I am ecstatic I actually stuck to my promise to myself and blogged about a daily gift from my nonverbal daughter for one whole year.
I am relaxed as I have learned from my daughter how to find my inner "calm" and to not worry, but to let God worry for me.
I am inspired as there is no better teacher than someone who doesn't take anything for granted...no better teacher than one who teaches through actions and few words.
I am proud...proud of my daughter for all she has accomplished, all she has learned and all she has overcome and most importantly for who she is.
I am a little sad as I have truly enjoyed writing about her daily gifts, learning from them and sharing them with others...sharing them with you.
Finding the true gifts amongst the grey has helped me deal with all the pain over the years.
I will be honest, there is still a little piece of pain which will always live inside my heart for my daughter. I do not think it will go away until there is a cure for her. Until that day....I will have to live just like my teacher has taught me....patiently.
Here is one quote and one poem to end my year of gifts.....
Living with silence teaches a great deal. When you cannot speak, you learn to share more from the heart. Instead of giving words, you give love- Author Unknown
A Special Child
You weren't like other children.
And God was well aware,
You'd need a caring family,
...with love enough to share.
And so He sent you to us,
And much to our surprise,
You haven't been a challenge,
But a blessing in disguise.
Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.
We're proud that we've been chosen,
To help you learn and grow,
The joy that you have brought us,
Is more than you can know.
A precious gift from Heaven,
A treasure from above,
A child who's taught us many things,
BUT most of all "REAL LOVE".
By Sharon Harris
I have wanted to write a post about the gift of patience for a while; however one day it came to me that this gift would be best as the last gift.
Why? Because the gift of patience is one I work on...every...single...day.
My daughter is one of the most patient people I know. She waits for so much and after she waits she probably is hoping and praying we know what she really wants!
Being patient is hard....probably one of the hardest things to learn and to practice.
I have learned from her that everything takes time and you have to be patient. As much as I would love for things to happen overnight, they do not. I have to take a deep breath and trust, if it was meant to be, it will happen. If it doesn't happen then it wasn't meant to be or the timing wasn't right. It has taken me a long time to try and practice living this way....and I still work on it...daily. Some days I am better at it than others. But just when I need a reminder, my daughter will show me a sign that I need to be patient.
My patience is tested daily. All three of my children test my patience and some know how to push me over the edge more than the others. However, of all my children, it is my nonverbal daughter who truly understands what patience is. Can you imagine waiting for someone to unlock the magic gene so you can talk? So you can use your own two hands...functionally? So you can walk around without having someone be within arms reach? So you can have privacy? So you can live the life you deserve? And while she waits so patiently....for just about everything, she does it with a great attitude.
I honestly do not know how she does it. I honestly do not know if I could do it. She simply amazes me. And at the same time it kills me to have to watch her wait....patiently, when of all people she should be demanding!
Watching my daughter deal with her struggles associated with Rett Syndrome, old and new, is truly inspiring. Over the last 365 days I feel like I have connected with her on a whole different level. I have so many emotions going through my head as this chapter...this challenge....this blog comes to an end.
I am rejuvenated as I have learned so much more than I ever thought possible.
I am ecstatic I actually stuck to my promise to myself and blogged about a daily gift from my nonverbal daughter for one whole year.
I am relaxed as I have learned from my daughter how to find my inner "calm" and to not worry, but to let God worry for me.
I am inspired as there is no better teacher than someone who doesn't take anything for granted...no better teacher than one who teaches through actions and few words.
I am proud...proud of my daughter for all she has accomplished, all she has learned and all she has overcome and most importantly for who she is.
I am a little sad as I have truly enjoyed writing about her daily gifts, learning from them and sharing them with others...sharing them with you.
Finding the true gifts amongst the grey has helped me deal with all the pain over the years.
I will be honest, there is still a little piece of pain which will always live inside my heart for my daughter. I do not think it will go away until there is a cure for her. Until that day....I will have to live just like my teacher has taught me....patiently.
Here is one quote and one poem to end my year of gifts.....
Living with silence teaches a great deal. When you cannot speak, you learn to share more from the heart. Instead of giving words, you give love- Author Unknown
A Special Child
You weren't like other children.
And God was well aware,
You'd need a caring family,
...with love enough to share.
And so He sent you to us,
And much to our surprise,
You haven't been a challenge,
But a blessing in disguise.
Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.
We're proud that we've been chosen,
To help you learn and grow,
The joy that you have brought us,
Is more than you can know.
A precious gift from Heaven,
A treasure from above,
A child who's taught us many things,
BUT most of all "REAL LOVE".
By Sharon Harris
Monday, July 29, 2013
Keep Calm and Carry On
Today's gift is keep calm and carry on.
Remember in one of my posts from last week I mentioned in due time I would fill you in on how the Rett Monster has affected my daughter...again. Well, here it is.
The day we left for our trip to Texas....the first night on the road....my daughter started having seizures. We were in complete shock and somewhat in denial.
We were full of questions and full of fear.
When we travel we always get two hotel rooms....makes sleeping much more enjoyable....and a way we can actually sleep! The first night on the road my husband shared a room with my daughter and I stayed with our other two children. He was the only one to witness my daughter having seizures that night. He was nervous, scared and obviously wasn't expecting it!
It was four days later when we witnessed another series of seizures. It was at this point we knew the Rett Monster was rearing its ugly head...one...more...time.
The last one on our trip was on July 5th at 1:26am ( yes, I remembered every single one ). I couldn't sleep anymore as I was so upset for my daughter. I really have not witnessed someone having a seizure before and it was scary. Watching your daughter shake uncontrollably is one of the worst things....ever.
I couldn't believe she had to start dealing with another aspect of Rett. I couldn't believe it! I emailed two of her doctors to ask for help and advice since we were traveling and away from home. After I sent the emails, I just laid next to her....holding her hand and looking at her.
Just like I made a promise to her the day she was diagnosed with Rett, I made the same promise....I would never give up on her. I believe in her and always will.
At this moment I told myself, this is just a bump in the road. The best thing to do is to keep calm. Whatever happens is going to happen regardless of any "extra" worrying I do or do not do. I also thought how my daughter could be affected in so many other ways by the Rett Monster or other medical conditions....and is not. While we are upset of her new issue, we still have so much to be thankful for.
Today she had an EEG performed so we can get a better picture of what is going on with her seizure activity. After another "happy" day for my daughter I couldn't believe we had to go in and have this test done. It doesn't hurt, but it takes time to place every electrode...28 to be exact...on her head, while keeping her still! And then making sure she doesn't rip them off while entertaining her for the actual test.
The technician was one of the best we have had...ever! Before he did anything to my daughter he explained it to her by showing her exactly what he was going to do....on her hand! This right here is huge all by itself! He just assumed she understood everything you say without us having to tell him!
To say my daughter rocked the EEG is an understatement! She was awesome! Through it all....she still had a smile!
This picture says it all...keep calm and carry on! My daughter does this so well. Whatever life hands her, she learns to overcome it. She hardly let's something get her down. Instead she hits it head on and keeps moving forward. She knows it isn't easy, but she knows it is worth it!
I have learned to keep calm and carry on from my daughter. It wasn't until this new issue was introduced into our lives that I truly saw myself take her motto and use it.
I had a really good cry when it first was apparent we were indeed dealing with seizures. I then took a deep breath and decided I needed to carry on, carry on for my daughter. I pray every night and leave all my worries with God. By allowing him to worry for me, I am able to keep calm.
And I have to say, I should have listened to my daughter a long time ago....this way is much better! I honestly feel like a different person. This is just another storm we must ride out....but together we will carry on.
Here are three quotes for today....
I will not cause pain without allowing something new to be born- Isaiah 66:9
When God pushes you to the edge of difficulty trust him fully because two things can happen; either he'll catch you when you fall or he will teach you how to fly- Author Unknown
You never know you STRONG you are until being STRONG is the only choice you have- Author Unknown
P.S. As I was writing this tonight, I went in to wake up my husband who had fallen asleep putting my daughter to bed and this is what I found....I am not the only one who loves to hold her hand!
Remember in one of my posts from last week I mentioned in due time I would fill you in on how the Rett Monster has affected my daughter...again. Well, here it is.
The day we left for our trip to Texas....the first night on the road....my daughter started having seizures. We were in complete shock and somewhat in denial.
We were full of questions and full of fear.
When we travel we always get two hotel rooms....makes sleeping much more enjoyable....and a way we can actually sleep! The first night on the road my husband shared a room with my daughter and I stayed with our other two children. He was the only one to witness my daughter having seizures that night. He was nervous, scared and obviously wasn't expecting it!
It was four days later when we witnessed another series of seizures. It was at this point we knew the Rett Monster was rearing its ugly head...one...more...time.
The last one on our trip was on July 5th at 1:26am ( yes, I remembered every single one ). I couldn't sleep anymore as I was so upset for my daughter. I really have not witnessed someone having a seizure before and it was scary. Watching your daughter shake uncontrollably is one of the worst things....ever.
I couldn't believe she had to start dealing with another aspect of Rett. I couldn't believe it! I emailed two of her doctors to ask for help and advice since we were traveling and away from home. After I sent the emails, I just laid next to her....holding her hand and looking at her.
Just like I made a promise to her the day she was diagnosed with Rett, I made the same promise....I would never give up on her. I believe in her and always will.
At this moment I told myself, this is just a bump in the road. The best thing to do is to keep calm. Whatever happens is going to happen regardless of any "extra" worrying I do or do not do. I also thought how my daughter could be affected in so many other ways by the Rett Monster or other medical conditions....and is not. While we are upset of her new issue, we still have so much to be thankful for.
Today she had an EEG performed so we can get a better picture of what is going on with her seizure activity. After another "happy" day for my daughter I couldn't believe we had to go in and have this test done. It doesn't hurt, but it takes time to place every electrode...28 to be exact...on her head, while keeping her still! And then making sure she doesn't rip them off while entertaining her for the actual test.
The technician was one of the best we have had...ever! Before he did anything to my daughter he explained it to her by showing her exactly what he was going to do....on her hand! This right here is huge all by itself! He just assumed she understood everything you say without us having to tell him!
To say my daughter rocked the EEG is an understatement! She was awesome! Through it all....she still had a smile!
This picture says it all...keep calm and carry on! My daughter does this so well. Whatever life hands her, she learns to overcome it. She hardly let's something get her down. Instead she hits it head on and keeps moving forward. She knows it isn't easy, but she knows it is worth it!
I have learned to keep calm and carry on from my daughter. It wasn't until this new issue was introduced into our lives that I truly saw myself take her motto and use it.
I had a really good cry when it first was apparent we were indeed dealing with seizures. I then took a deep breath and decided I needed to carry on, carry on for my daughter. I pray every night and leave all my worries with God. By allowing him to worry for me, I am able to keep calm.
And I have to say, I should have listened to my daughter a long time ago....this way is much better! I honestly feel like a different person. This is just another storm we must ride out....but together we will carry on.
Here are three quotes for today....
I will not cause pain without allowing something new to be born- Isaiah 66:9
When God pushes you to the edge of difficulty trust him fully because two things can happen; either he'll catch you when you fall or he will teach you how to fly- Author Unknown
You never know you STRONG you are until being STRONG is the only choice you have- Author Unknown
P.S. As I was writing this tonight, I went in to wake up my husband who had fallen asleep putting my daughter to bed and this is what I found....I am not the only one who loves to hold her hand!
Sunday, July 28, 2013
Happy Happy Happy
Today's gift is happy happy happy!
My daughter had a overall happy day today. Whether you consider Sunday a day to wind down the weekend or to start the week....our day was a great one. A happy one!
She started the day by sleeping in....she is her mother's daughter! Then we went to church. My daughter truly loves going to church. Just like there is something about being by the water that calms her, she is equally as calm in church as well. She loves the music, she loves listening, she loves people watching, she loves it all. I love seeing her like this!
After church we took the kids out to lunch and then we came home to relax and get ready for the busy week ahead. Camp Amica (the camp I run out of the home for my daughter and her typical peers) starts this week!!! When we talk about it she lights up...she loves being around her friends!
Then we enjoyed a delicious dinner at our friend's house with two families. Two families who "get" our family and are beyond supportive of us. We love being around these friends as they understand our family and will do anything to make our daughter feel comfortable. I remember the days we would do all of the entertaining because it was easier for us and easier for our daughter. Now because of the amazing friends we have we can take our daughter to their homes and she feels right at home.
Today was one of those days where you look back on it and say...wow...it was a great day. From the moment my daughter woke up to the moment she went to bed, she was happy. Days like today make me happy. Days like today I wish we could have all the time. Days like today are the ones you will remember most.
Days like today you hope is an indication your week is off to a great start!
Here is quote for today....
I can only think of one thing greater than being happy, and that is to help another be happy too- Jim Thomson
© copyright 2012 – All rights reserved
365 Days Gift
My daughter had a overall happy day today. Whether you consider Sunday a day to wind down the weekend or to start the week....our day was a great one. A happy one!
She started the day by sleeping in....she is her mother's daughter! Then we went to church. My daughter truly loves going to church. Just like there is something about being by the water that calms her, she is equally as calm in church as well. She loves the music, she loves listening, she loves people watching, she loves it all. I love seeing her like this!
After church we took the kids out to lunch and then we came home to relax and get ready for the busy week ahead. Camp Amica (the camp I run out of the home for my daughter and her typical peers) starts this week!!! When we talk about it she lights up...she loves being around her friends!
Then we enjoyed a delicious dinner at our friend's house with two families. Two families who "get" our family and are beyond supportive of us. We love being around these friends as they understand our family and will do anything to make our daughter feel comfortable. I remember the days we would do all of the entertaining because it was easier for us and easier for our daughter. Now because of the amazing friends we have we can take our daughter to their homes and she feels right at home.
Today was one of those days where you look back on it and say...wow...it was a great day. From the moment my daughter woke up to the moment she went to bed, she was happy. Days like today make me happy. Days like today I wish we could have all the time. Days like today are the ones you will remember most.
Days like today you hope is an indication your week is off to a great start!
Here is quote for today....
I can only think of one thing greater than being happy, and that is to help another be happy too- Jim Thomson
© copyright 2012 – All rights reserved
365 Days Gift
Saturday, July 27, 2013
Impromptu Drive
Today's gift is an impromptu drive.
My daughter loves to ride in the car. If we could drive anywhere it would make traveling much easier for us!
Since she enjoys riding in the car so much it actually makes impromptu drives easier. However, there is still the land of the "unknown" once we arrive. We could live a life of "what-ifs" and not do anything....but we don't. We go, we do and we take it minute by minute.
This morning my husband and I tried paddle boarding together for the first time. It was so much fun and I highly recommend it! We spent 2 hours on the river this morning and it was the perfect way to start off the day. The water was calm, you could hear nature and it was incredibly peaceful. I guess being on the water this morning made us want to see water this afternoon....with the kids.
After lunch we put in the kids in the car and drove to the river....or the rivah. My daughter loves being by any type of water....pool, lake, river, ocean...you name it....she loves it! I honestly find she is more relaxed near water.
After driving around we stopped for an ice cream treat. My daughter chose mint chocolate chip for herself and enjoyed every last bite. Ice cream treats are the best wherever you go!
"Impromptu" drives, get togethers, events, etc.....are the best. I truly love them. Typically there is no stress involved and you just go with the flow. We are so blessed we are able to enjoy impromptu "things" as I remember the day we could not.....and it wasn't fun.
Having fun without the planning involved is the best and also is a nice surprise for everyone. And of course when there is water involved it is a double bonus. No matter spring, summer, fall or winter being by the water instantly soothes the soul.
Here is a quote for today.....
When you do things from your soul, you feel a river moving in you, a joy- Rumi
© copyright 2012 – All rights reserved
365 Days Gift
My daughter loves to ride in the car. If we could drive anywhere it would make traveling much easier for us!
Since she enjoys riding in the car so much it actually makes impromptu drives easier. However, there is still the land of the "unknown" once we arrive. We could live a life of "what-ifs" and not do anything....but we don't. We go, we do and we take it minute by minute.
This morning my husband and I tried paddle boarding together for the first time. It was so much fun and I highly recommend it! We spent 2 hours on the river this morning and it was the perfect way to start off the day. The water was calm, you could hear nature and it was incredibly peaceful. I guess being on the water this morning made us want to see water this afternoon....with the kids.
After lunch we put in the kids in the car and drove to the river....or the rivah. My daughter loves being by any type of water....pool, lake, river, ocean...you name it....she loves it! I honestly find she is more relaxed near water.
After driving around we stopped for an ice cream treat. My daughter chose mint chocolate chip for herself and enjoyed every last bite. Ice cream treats are the best wherever you go!
i scream, you scream, we all scream for ice cream!
"Impromptu" drives, get togethers, events, etc.....are the best. I truly love them. Typically there is no stress involved and you just go with the flow. We are so blessed we are able to enjoy impromptu "things" as I remember the day we could not.....and it wasn't fun.
Having fun without the planning involved is the best and also is a nice surprise for everyone. And of course when there is water involved it is a double bonus. No matter spring, summer, fall or winter being by the water instantly soothes the soul.
Here is a quote for today.....
When you do things from your soul, you feel a river moving in you, a joy- Rumi
© copyright 2012 – All rights reserved
365 Days Gift
Friday, July 26, 2013
Her Pointer Finger
Today's gift is her pointer finger.
Another beautiful day here equals more porch time. I can't believe the amazing breeze we are having in July!
My daughter loves sitting on our back porch. I honestly think she would sleep out here if I let her....who knows maybe I will let her sometime.
When she is outside she loves to either take in nature by relaxing and taking in all the sounds. Or she likes to play on her iPad.
As she is on her iPad I am just amazed at the use of her pointer finger. She is extremely blessed to have incredible finger isolation. If she didn't have the finger isolation that she does, then when she touched her iPad with her whole hand and no finger isolation the same button would be pressed over and over again OR nothing would happen. When touching anything "i" related you need to be rather precise in where and how you touch the button.
If she pressed a button but didn't receive the output she was expecting it would be extremely frustrating for her resulting in her not staying engaged or interested in the iPad anymore.
Lucky for her....lucky for us.....this is not the case.
Can you imagine not being able to use your hands the way you want to? Can you imagine only having one strong finger to help you be able to actually do things....on your own? I am so thankful my daughter has this strong pointer finger to help her be able to make choices, initiate requests by pointing, have fun, and to be able to help her not wring her hands by having that one finger busy.
I am sure there is another finger my daughter would like to show to the Rett Monster...but she hasn't....yet.
Something so little to most, yet something huge for another. Something truly life changing.
Here is a quote for one day....
A dream is a wish your heart makes- Author Unknown
Another beautiful day here equals more porch time. I can't believe the amazing breeze we are having in July!
My daughter loves sitting on our back porch. I honestly think she would sleep out here if I let her....who knows maybe I will let her sometime.
When she is outside she loves to either take in nature by relaxing and taking in all the sounds. Or she likes to play on her iPad.
As she is on her iPad I am just amazed at the use of her pointer finger. She is extremely blessed to have incredible finger isolation. If she didn't have the finger isolation that she does, then when she touched her iPad with her whole hand and no finger isolation the same button would be pressed over and over again OR nothing would happen. When touching anything "i" related you need to be rather precise in where and how you touch the button.
If she pressed a button but didn't receive the output she was expecting it would be extremely frustrating for her resulting in her not staying engaged or interested in the iPad anymore.
Lucky for her....lucky for us.....this is not the case.
Can you imagine not being able to use your hands the way you want to? Can you imagine only having one strong finger to help you be able to actually do things....on your own? I am so thankful my daughter has this strong pointer finger to help her be able to make choices, initiate requests by pointing, have fun, and to be able to help her not wring her hands by having that one finger busy.
I am sure there is another finger my daughter would like to show to the Rett Monster...but she hasn't....yet.
Something so little to most, yet something huge for another. Something truly life changing.
Here is a quote for one day....
A dream is a wish your heart makes- Author Unknown
Thursday, July 25, 2013
Talking TO Her IPad
Today's gift is talking to her iPad.
Yes, you read that correctly. My daughter was talking TO her iPad today!
Probably one of my favorite features on any ACC (augmentative communication device) device is the voice output. Whenever you hit a button, the button pressed is spoken back to you. The button acts as your voice.
I honestly feel my daughter loves this part too! It talks for her.
Along with the iPODD (which she is still learning) she also still loves her iPad. She uses it more for watching movies, listening to music and playing games than speaking....but she does still visit her communication software on it to talk fairly often too.
Sometimes when you hit a button there is a little delay in the voice output. Especially when you are trying to get the device to speak the word accurately for you....like when you have made changes or added a button.
This afternoon my daughter and I were sitting on the back porch. It was GORGEOUS outside and we were taking in the incredible weather like it was candy! She was listening to music on her iPad and then she was "talking" with her software.
She was on the page with all her school teachers and she was hitting their buttons. These buttons are some of the buttons where the voice output is on a little delay. As she was pushing the button, it would say "Mrs".....and then there would be a brief pause before it would say the last name of the teacher. She kept hitting the same two teachers over and over again....and they both happen to be her speech therapists at school. One she calls by her last name "B" and the other one she calls by her first name "T".
So this is what happened....my daughter would hit one of their buttons....the voice output would say "Mrs" and in the delay portion she would say "B" or "T" for which ever one it was....and then you would hear the iPad say their last name! She did this over and over again. It was so cute! There are not many times when I have seen her TALK TO her iPad like this before....if ever!
I think she misses seeing them and she was letting me know it. We are very blessed to have B and T on her school team....they truly believe in my daughter....and she knows this!
Here is a quote for today....
You are never too old to set another goal or dream a new dream- C.S. Lewis
© copyright 2012 – All rights reserved
365 Days Gift
Yes, you read that correctly. My daughter was talking TO her iPad today!
Probably one of my favorite features on any ACC (augmentative communication device) device is the voice output. Whenever you hit a button, the button pressed is spoken back to you. The button acts as your voice.
I honestly feel my daughter loves this part too! It talks for her.
Along with the iPODD (which she is still learning) she also still loves her iPad. She uses it more for watching movies, listening to music and playing games than speaking....but she does still visit her communication software on it to talk fairly often too.
Sometimes when you hit a button there is a little delay in the voice output. Especially when you are trying to get the device to speak the word accurately for you....like when you have made changes or added a button.
This afternoon my daughter and I were sitting on the back porch. It was GORGEOUS outside and we were taking in the incredible weather like it was candy! She was listening to music on her iPad and then she was "talking" with her software.
She was on the page with all her school teachers and she was hitting their buttons. These buttons are some of the buttons where the voice output is on a little delay. As she was pushing the button, it would say "Mrs".....and then there would be a brief pause before it would say the last name of the teacher. She kept hitting the same two teachers over and over again....and they both happen to be her speech therapists at school. One she calls by her last name "B" and the other one she calls by her first name "T".
So this is what happened....my daughter would hit one of their buttons....the voice output would say "Mrs" and in the delay portion she would say "B" or "T" for which ever one it was....and then you would hear the iPad say their last name! She did this over and over again. It was so cute! There are not many times when I have seen her TALK TO her iPad like this before....if ever!
I think she misses seeing them and she was letting me know it. We are very blessed to have B and T on her school team....they truly believe in my daughter....and she knows this!
Here is a quote for today....
You are never too old to set another goal or dream a new dream- C.S. Lewis
© copyright 2012 – All rights reserved
365 Days Gift
Wednesday, July 24, 2013
Excited to See Daddy
Today's gift is excited to see Daddy.
My husband has been away for the past three nights and we picked him up at the airport early this evening. I don't know who was more excited....me....or the kids!
I think it is safe to say we were all very excited to see him! However, one little girl was super excited to be going to get daddy. All the way to the airport my daughter was saying "daddy, daddy, daddy". She was all smiles dancing in the back seat.
And then she did her famous...'I am super happy' pose....arms over the head!
From the moment he got into the car till the moment she fell asleep she was by her daddy's side. You could tell daddy's little girl definitely missed her daddy.
My other children can tell me they miss us when we are gone...they can vocalize their excitement....my daughter can not. We have to watch her body language and also listen closely for the few words she can say to express her feelings. After eleven years I can interpret a lot from my daughter; however, there are still times I feel lost.
Tonight's feeling of excitement and joy was not a guess....it was 100% accurate.
Here is a quote for today....
Some people don't believe in heroes, but they haven't met my dad- Author Unknown
My husband has been away for the past three nights and we picked him up at the airport early this evening. I don't know who was more excited....me....or the kids!
I think it is safe to say we were all very excited to see him! However, one little girl was super excited to be going to get daddy. All the way to the airport my daughter was saying "daddy, daddy, daddy". She was all smiles dancing in the back seat.
And then she did her famous...'I am super happy' pose....arms over the head!
sorry they are blurry...she was so excited.....she was dancing nonstop!
From the moment he got into the car till the moment she fell asleep she was by her daddy's side. You could tell daddy's little girl definitely missed her daddy.
My other children can tell me they miss us when we are gone...they can vocalize their excitement....my daughter can not. We have to watch her body language and also listen closely for the few words she can say to express her feelings. After eleven years I can interpret a lot from my daughter; however, there are still times I feel lost.
Tonight's feeling of excitement and joy was not a guess....it was 100% accurate.
Here is a quote for today....
Some people don't believe in heroes, but they haven't met my dad- Author Unknown
Tuesday, July 23, 2013
Fun Day with Her Friend
Today's gift is a fun day with her friend.
My daughter has a fun week planned. Two friends are coming over this week to hang out! Today one friend came over.
She loves spending time with her friends. They truly make her happy. There are no words to describe how it feels as a mother, to see a friend of your child's....your child with special needs....treat your child with such compassion. My daughter's friend understands my daughter. She helps her whenever she needs assistance. She communicates with her using not only her own voice, but the iPad and iPODD....to be an example to my daughter as modeling is key. My daughter's friend is patient with her and doesn't take it personally if my daughter is not on her A game one day. She is one of my daughter's true blessings.
"Anne Sullivan" took my daughter and her friend out on the town today. They started at PT with my daughter this morning. This isn't the first time my daughter's friend has accompanied her to PT. I love it when her peers go as they get to see exactly what my daughter goes through on a weekly basis just to keep moving. They get to not only see what my daughter experiences every week, but others like her. It is a glimpse into a world they do not see often, but one that exists for to many.
After physical therapy the three of them had fun going to a local art museum, walking around downtown and enjoying lunch out. We are so incredibly blessed to have "Anne Sullivan" for many reasons, but one I never truly thought about was until my daughter started getting older. When my daughter "hangs out" with her friends or goes places with them...."Anne Sullivan" can go with her and it is "cool" and accepted by her peers. If I went, it wouldn't be so cool at all! Even my daughter wouldn't want her mom tagging along all the time...who can blame her. But "Anne Sullivan" is truly thought of among my daughter's peers as the big sister.
My daughter's friend stayed over well after "Anne Sullivan" had left. I love watching my daughter interact with her friends. I love seeing the genuine friendship they have....one built on actions and few words. I love watching her friends get involved in her world....because they want to. I love watching how comfortable my daughter is around them....and them around her. I love it all!
One of the sweetest moments today was sitting next to them as they watched a movie. My daughter was tired from not only a busy day, but also from getting up early. As they watched, my daughter laid her head on her friends shoulder.....and her friend didn't mind. It melted my heart...
Friends are important for all of us. I couldn't be happier for my daughter that she has some amazing friends in her life. I just hope and pray as time goes on, they remain true friends.
Here is a quote for today....
Friendship isn't about who you have known the longest. It's about who walked into your life, said " I'm here for you" and proved it- Author Unknown
My daughter has a fun week planned. Two friends are coming over this week to hang out! Today one friend came over.
She loves spending time with her friends. They truly make her happy. There are no words to describe how it feels as a mother, to see a friend of your child's....your child with special needs....treat your child with such compassion. My daughter's friend understands my daughter. She helps her whenever she needs assistance. She communicates with her using not only her own voice, but the iPad and iPODD....to be an example to my daughter as modeling is key. My daughter's friend is patient with her and doesn't take it personally if my daughter is not on her A game one day. She is one of my daughter's true blessings.
"Anne Sullivan" took my daughter and her friend out on the town today. They started at PT with my daughter this morning. This isn't the first time my daughter's friend has accompanied her to PT. I love it when her peers go as they get to see exactly what my daughter goes through on a weekly basis just to keep moving. They get to not only see what my daughter experiences every week, but others like her. It is a glimpse into a world they do not see often, but one that exists for to many.
After physical therapy the three of them had fun going to a local art museum, walking around downtown and enjoying lunch out. We are so incredibly blessed to have "Anne Sullivan" for many reasons, but one I never truly thought about was until my daughter started getting older. When my daughter "hangs out" with her friends or goes places with them...."Anne Sullivan" can go with her and it is "cool" and accepted by her peers. If I went, it wouldn't be so cool at all! Even my daughter wouldn't want her mom tagging along all the time...who can blame her. But "Anne Sullivan" is truly thought of among my daughter's peers as the big sister.
My daughter's friend stayed over well after "Anne Sullivan" had left. I love watching my daughter interact with her friends. I love seeing the genuine friendship they have....one built on actions and few words. I love watching her friends get involved in her world....because they want to. I love watching how comfortable my daughter is around them....and them around her. I love it all!
One of the sweetest moments today was sitting next to them as they watched a movie. My daughter was tired from not only a busy day, but also from getting up early. As they watched, my daughter laid her head on her friends shoulder.....and her friend didn't mind. It melted my heart...
Friends are important for all of us. I couldn't be happier for my daughter that she has some amazing friends in her life. I just hope and pray as time goes on, they remain true friends.
Here is a quote for today....
Friendship isn't about who you have known the longest. It's about who walked into your life, said " I'm here for you" and proved it- Author Unknown
Monday, July 22, 2013
Hanging Out with Her Brother
Today's gift is hanging out with her brother.
Early this evening after dinner my daughter walked into the playroom and sat on the sofa. Her brother was in there playing Wii and she wanted to hang out with him.
It was the most precious and sincere thing I've seen her done in a while. She didn't want to bother him, like she sometimes does, but truly wanted to sit and watch him play.
I let them have their time for a little bit, then I went in to join them. We all hung out where my daughter wanted to instead of us telling her where to sit. It was the perfect way for us to unwind from the day.
I love watching my daughter with her siblings. She has a different relationship with both of them and they each help each other grow. They get along, but they also have "typical" tiffs like "typical" siblings. Siblings for my daughter have been the best gift to her!
Today's gift was one which is small, but one packed with lots of love!
Here is a quote for today....
In a family love is spelled T*I*M*E- Author Unknown
Early this evening after dinner my daughter walked into the playroom and sat on the sofa. Her brother was in there playing Wii and she wanted to hang out with him.
It was the most precious and sincere thing I've seen her done in a while. She didn't want to bother him, like she sometimes does, but truly wanted to sit and watch him play.
I let them have their time for a little bit, then I went in to join them. We all hung out where my daughter wanted to instead of us telling her where to sit. It was the perfect way for us to unwind from the day.
I love watching my daughter with her siblings. She has a different relationship with both of them and they each help each other grow. They get along, but they also have "typical" tiffs like "typical" siblings. Siblings for my daughter have been the best gift to her!
Today's gift was one which is small, but one packed with lots of love!
Here is a quote for today....
In a family love is spelled T*I*M*E- Author Unknown
Sunday, July 21, 2013
FaceTime with a Friend
Today's gift is FaceTime with a friend.
Let me ask you a question, does your child text or FaceTime with their friends? You probably answered yes to this question. And my answer is yes for my other two children too. Well, actually my 6 year old son doesn't text his friends, but he does text and FaceTime his family.
I know my oldest daughter would be doing the same thing...if she could....on her own. But she can not.
The next best thing is having her friends FaceTime her, on her iPad or FaceTime her sister to talk to her. And tonight after dinner one of her friends did FaceTime her!
My daughter's face lit up like a Christmas tree when she saw her friend. I love to see the joy they bring to my daughter. I love how my middle daughter helps her sister connect with her friends by holding the iTouch or iPad so she can see them and will also follow her around the house if she is on the go so they can still interact. Something so easy, yet means the world to someone.
Technology today has really helped people with special needs in so many ways. But from a friendship point of view it has made a huge difference in my daughter's life. FaceTime is a game changer for relationships and friendships for someone in our shoes. From us being away from our daughter to her friends wanting to see her and talk to her...FaceTime allows this to be possible. They can do all the fun things they would do in person to make my daughter laugh over wi-fi! In person is always better, but when it isn't possible FaceTime is second best.
Here is a quote for today....
Technology is a given, not a debate- Author Unknown
Saturday, July 20, 2013
The Little Things #11
Today's gifts are the little things #11.
When you have kids and you are away from them it is so hard not to think about or talk about them. It can be anything from a song you hear reminding you of them, another child you see doing something they do or just the fact you can picture them with you enjoying the place your visiting too.
This afternoon as I was sitting in the sun looking out into the water of the Chesapeake Bay I couldn't help but think of my three kids and how they would love it here. Each one would love different things showing their personalities. And it is often at these times when I tend to feel upset for my daughter with Rett Syndrome and how I wish she could enjoy everything like her siblings.
There is something incredibly relaxing about the water. It helps clear my head and truly helps me think. I was having all these thoughts run through my head of how if we brought all the kids here there would be some things my daughter couldn't do which my other two would want to. And then it is a case of divide and conquer....which I don't like....but a concept we know all too much about. But just as I was thinking this out in the water comes a mom on a paddle board with her child sitting on the front.
It was then that I reassured myself, a trip is what you make it. Everything we do has to be altered some way, but it doesn't stop us from going and doing. Of course it would be ten times easier if Rett wasn't in our life, but it is. And we don't take for granted what we are able to do.
So if we have to divide and conquer at times...so what. At least everyone is having fun. The most important thing is we are together and enjoying the moment.
When I saw the mom with the paddle board, I couldn't help but wonder if my daughter would sit on it with me. I don't know why not as she has an unbelievable core. And of course she would be sitting in front of me with a life jacket on....and I would have someone else near by. It is something I would love to try with her....as you never know until you try.
My daughter has definitely taught me how to make the best of a situation. She has taught me to appreciate what is truly important in life. She has taught me to try new things and be adventurous. She has taught me to live life to the fullest. And all of these values I try to apply to our life together...and it has made all the difference!
Here are two quotes for today...
Change your thoughts and you will change your world- Author Unknown
Embrace imperfection, it's a sign you're not afraid to try new things- Author Unknown
Friday, July 19, 2013
Her "Anne Sullivan"
Today's gift is my daughter's "Anne Sullivan".
Our entire family was incredibly blessed when my daughter's one to one...her "Anne Sullivan" walked into our lives. She started as my daughter's teacher...and still very much is....but something more came out of the relationship.
She became a friend to all of us. She became like a big sister to me. She became like another daughter to my parents. She became like an aunt to my other two children. She became family.
She truly is the big sister I never had.
"Anne Sullivan" had her "29th" birthday not too long ago and my mom and I wanted to take her away. Well, thanks to my husband, my dad and my mother-in-law this weekend we are celebrating! It has been planned for a while and the weekend is finally here.
I have to also thank my daughter for sharing her with me today as today was a day off from school work for my daughter. And once again, if it wasn't for my daughter with special needs, "Anne Sullivan" would never have entered our lives.
I honestly can not put into words how amazing she is. She cares and loves my daughter just like we do. She believes in her just like we do. She is incredible with her. She is the reason my daughter can do as much as she can. She is my daughter's angel.
But just as she is important to my daughter, she is important to me too. She is the big sister I never had. She is truly one of the only people I can talk to about things as she truly gets it, as she lives it with me. It being Rett Syndrome. She is the hand I need to hold when I'm scared, she is the shoulder to cry on when I need comfort and she always has a joke when I need laughter.
I can't thank her enough for all she does for my little girl, for me and for my family. She truly is an angel.
Here is a quote for today....
Every good and perfect gift comes from above- James 1:17
Thursday, July 18, 2013
Knowing the States
Today's gift is knowing her States.
My daughter has been on a roll playing games lately. The key is catching her when she is willing to sit for a period of time and play. When she does this she loves playing games.
While I was making the kids lunches today, "Anne Sullivan", my daughter and my son played a States game. I was curious to see how "Anne Sullivan" was going to introduce this game to my daughter.
The game is played where you roll a die and what is shown on the die indicates where you move to and what type of State question you get asked. No matter the question, you have to answer with a name of a State.
Right at the beginning, "Anne Sullivan" went to my daughter's iPad and pulled up her States page under social studies. I didn't even know we had that button!!!! In my defense, it is not one we would have used often as typically Social Studies is done in school...but now knowing it is there will be so helpful!!!
My daughter would roll her die and then "Anne Sullivan" would ask her a question and give her two States to chose from for her answer. Would you believe she got EVERY one right!?!?! I couldn't believe it!
I love watching her be able to play a typical game with her siblings. I love watching them help her learn. I love watching them get excited for their sister when she achieves success! I just love to watch them interact.
This is the second game this week she has played and showed an interest in the game. Not every time we ask her to play does she want too...and that is okay....as I said you have to catch her at the right time. But knowing she can play and enjoys it makes me so happy for her. And what makes me happier, is watching her play a typically game with her siblings....sharing a typical moment.
Here is a quote for today....
Sometimes being a brother is even better than being a superhero- Marc Brown
© copyright 2012 – All rights reserved
365 Days Gift
My daughter has been on a roll playing games lately. The key is catching her when she is willing to sit for a period of time and play. When she does this she loves playing games.
While I was making the kids lunches today, "Anne Sullivan", my daughter and my son played a States game. I was curious to see how "Anne Sullivan" was going to introduce this game to my daughter.
The game is played where you roll a die and what is shown on the die indicates where you move to and what type of State question you get asked. No matter the question, you have to answer with a name of a State.
Right at the beginning, "Anne Sullivan" went to my daughter's iPad and pulled up her States page under social studies. I didn't even know we had that button!!!! In my defense, it is not one we would have used often as typically Social Studies is done in school...but now knowing it is there will be so helpful!!!
My daughter would roll her die and then "Anne Sullivan" would ask her a question and give her two States to chose from for her answer. Would you believe she got EVERY one right!?!?! I couldn't believe it!
I love watching her be able to play a typical game with her siblings. I love watching them help her learn. I love watching them get excited for their sister when she achieves success! I just love to watch them interact.
This is the second game this week she has played and showed an interest in the game. Not every time we ask her to play does she want too...and that is okay....as I said you have to catch her at the right time. But knowing she can play and enjoys it makes me so happy for her. And what makes me happier, is watching her play a typically game with her siblings....sharing a typical moment.
Here is a quote for today....
Sometimes being a brother is even better than being a superhero- Marc Brown
© copyright 2012 – All rights reserved
365 Days Gift
Wednesday, July 17, 2013
Giggles with Her Sister
Today's gift is giggles with her sister.
Short and sweet.
As most of you know it has been a hot and very sticky week! My daughter loves to sit on the porch outside, but right now it feels like you are walking into a sauna sitting out there....even with the ceiling fan on.
She asked many times to go outside and I kept saying it was too hot...it is too hot....it is too hot. Luckily she didn't get too mad at me.
After dinner she was standing by the door pointing and saying "go". How could I say no!?! So I opened the door and told her she could sit out there for ten minutes as it was still steamy. I asked her sister if she would sit outside with her while I cleaned up the dinner dishes.
All I heard was laughter! They were laughing non-stop. Full on belly laughs. And to be honest I have no idea what they were laughing at! My oldest daughter was just laughing as she was throwing some cushions around and my middle daughter was laughing at her sister laughing.
It was really cute and one of those moments where you find yourself laughing too....and you don't know why....you just do!
There is nothing better than hearing the laughter of a child....especially when it is your own!
Here is a quote for today....
Laughter is the shortest distance between two people-Victor Borge
© copyright 2012 – All rights reserved
365 Days Gift
Short and sweet.
As most of you know it has been a hot and very sticky week! My daughter loves to sit on the porch outside, but right now it feels like you are walking into a sauna sitting out there....even with the ceiling fan on.
She asked many times to go outside and I kept saying it was too hot...it is too hot....it is too hot. Luckily she didn't get too mad at me.
After dinner she was standing by the door pointing and saying "go". How could I say no!?! So I opened the door and told her she could sit out there for ten minutes as it was still steamy. I asked her sister if she would sit outside with her while I cleaned up the dinner dishes.
All I heard was laughter! They were laughing non-stop. Full on belly laughs. And to be honest I have no idea what they were laughing at! My oldest daughter was just laughing as she was throwing some cushions around and my middle daughter was laughing at her sister laughing.
the shirt over the head = laughing really hard and something is really funny
It was really cute and one of those moments where you find yourself laughing too....and you don't know why....you just do!
There is nothing better than hearing the laughter of a child....especially when it is your own!
Here is a quote for today....
Laughter is the shortest distance between two people-Victor Borge
© copyright 2012 – All rights reserved
365 Days Gift
Tuesday, July 16, 2013
Feeling Relaxed
Today's gift is feeling relaxed.
There are not many times during the day when I can honestly say my daughter is "truly relaxed". No hand wringing, being calm and looking like she has no worries in the world.
I hardly ever see her feeling this way when she is in a therapy. The only time at therapy she gets like this is when she is being massaged....then who can blame her for being relaxed. I would be too!
Today, she not only had physical therapy, but also the chiropractor.
Today was also the first day she laid on the table and was 100% completely relaxed. The chiropractor was finished and she was still laying there! She was so relaxed, I honestly thought she fell asleep! It made me feel so good to see her like this as I always feel like she is so tense and anxious. It made me feel really happy to see her like this, while she was being adjusted, as usually she starts to get a little anxious right before...even though she loves it!
She even relaxed on the wave table afterwards and never tried to get up before her time was finished!
I love to see her in a relaxed state as her body moves constantly throughout the day. It truly isn't until she is asleep that her little body stops moving. If she isn't walking around, her legs could be jerking or her hands are wringing.....something is always moving.
I wish she could have many more relaxed days and give her little body a rest. I can't imagine moving constantly throughout the day. Sometimes we just need to be still....and relax....and take that deep breath. I hope she enjoyed her minute of pure relaxation, she definitely deserved it!
Here is a quote for today.....
Relaxation means releasing all concern and tension and letting the natural order of life flow through one's being- Donald Curtis
© copyright 2012 – All rights reserved
365 Days Gift
There are not many times during the day when I can honestly say my daughter is "truly relaxed". No hand wringing, being calm and looking like she has no worries in the world.
I hardly ever see her feeling this way when she is in a therapy. The only time at therapy she gets like this is when she is being massaged....then who can blame her for being relaxed. I would be too!
Today, she not only had physical therapy, but also the chiropractor.
Today was also the first day she laid on the table and was 100% completely relaxed. The chiropractor was finished and she was still laying there! She was so relaxed, I honestly thought she fell asleep! It made me feel so good to see her like this as I always feel like she is so tense and anxious. It made me feel really happy to see her like this, while she was being adjusted, as usually she starts to get a little anxious right before...even though she loves it!
She even relaxed on the wave table afterwards and never tried to get up before her time was finished!
I love to see her in a relaxed state as her body moves constantly throughout the day. It truly isn't until she is asleep that her little body stops moving. If she isn't walking around, her legs could be jerking or her hands are wringing.....something is always moving.
I wish she could have many more relaxed days and give her little body a rest. I can't imagine moving constantly throughout the day. Sometimes we just need to be still....and relax....and take that deep breath. I hope she enjoyed her minute of pure relaxation, she definitely deserved it!
Here is a quote for today.....
Relaxation means releasing all concern and tension and letting the natural order of life flow through one's being- Donald Curtis
© copyright 2012 – All rights reserved
365 Days Gift
Monday, July 15, 2013
Playing a Game
Today's gift is playing a game.
Last week Mimi brought the kids a new game to play. She is always on the lookout for new games my daughter can play and games which can travel easily. The newest addition to the game cabinet is Tenzi....a dice game.
Tenzi is really fun. But what makes it really fun is the fact the whole family can play it...all five of us...even my daughter with special needs.
I played it yesterday with my son for the first time to understand the game. There really isn't too much to understand as the directions are really easy to follow. It was a fast moving game too, which is always good for my daughter. She doesn't like waiting around...it needs to keep moving.
This afternoon we had some down time before dinner, so I thought it would be a great time to introduce Tenzi to my daughter. Granny was over too, so I was able to introduce it to her as well. I also used this time to play the game using her iPODD. I started off my telling her through PODD I had something to show her...a dice game. Then I asked her through PODD what color she wanted to be (yellow, orange, green or blue) to which she picked blue.
The three of us played the game. She truly enjoyed it and sometimes she would get our goat and throw the dice in the opposite direction, which required Granny to get up and get it and she would laugh (my daughter....not Granny!). While we played I would say using PODD it was her turn to roll or she was done or it was my turn or it was Granny's turn.
My daughter was also enjoying a snack while playing. She had been watching and hearing me say "another" through PODD for it was " her time for another roll". Well, she took that icon today to indicate a different reason for wanting "another".... It was to tell me he wanted another pretzel!
How incredible was it that she was communicating to me using an appropriate word on a new page in her PODD book while playing a game! She has always used the word "more" either verbally or through her iPad to indicate she wanted "more" to eat....never has she used the word "another"!
So in reality, even though she didn't say it verbally, she definitely gained a new word to add to her vocabulary list as she proved to me today she clearly knows the meaning of the word "another"!
And the best part of the game...was telling her through PODD, that she won! She was so proud of herself! It came down to my daughter having one die left and me and Granny having two.....and the luck of the roll. It must have been the good luck kiss my daughter gave her die right before she rolled it into Granny's hand.....to get her the lucky number she needed to win!
What a fun way to end our afternoon. We are big fans of Tenzi and can't wait to play again!
Here is a quote for today....
Always walk through life as if you have something new to learn- Vernon Howard
Last week Mimi brought the kids a new game to play. She is always on the lookout for new games my daughter can play and games which can travel easily. The newest addition to the game cabinet is Tenzi....a dice game.
Tenzi is really fun. But what makes it really fun is the fact the whole family can play it...all five of us...even my daughter with special needs.
I played it yesterday with my son for the first time to understand the game. There really isn't too much to understand as the directions are really easy to follow. It was a fast moving game too, which is always good for my daughter. She doesn't like waiting around...it needs to keep moving.
This afternoon we had some down time before dinner, so I thought it would be a great time to introduce Tenzi to my daughter. Granny was over too, so I was able to introduce it to her as well. I also used this time to play the game using her iPODD. I started off my telling her through PODD I had something to show her...a dice game. Then I asked her through PODD what color she wanted to be (yellow, orange, green or blue) to which she picked blue.
The three of us played the game. She truly enjoyed it and sometimes she would get our goat and throw the dice in the opposite direction, which required Granny to get up and get it and she would laugh (my daughter....not Granny!). While we played I would say using PODD it was her turn to roll or she was done or it was my turn or it was Granny's turn.
My daughter was also enjoying a snack while playing. She had been watching and hearing me say "another" through PODD for it was " her time for another roll". Well, she took that icon today to indicate a different reason for wanting "another".... It was to tell me he wanted another pretzel!
How incredible was it that she was communicating to me using an appropriate word on a new page in her PODD book while playing a game! She has always used the word "more" either verbally or through her iPad to indicate she wanted "more" to eat....never has she used the word "another"!
So in reality, even though she didn't say it verbally, she definitely gained a new word to add to her vocabulary list as she proved to me today she clearly knows the meaning of the word "another"!
And the best part of the game...was telling her through PODD, that she won! She was so proud of herself! It came down to my daughter having one die left and me and Granny having two.....and the luck of the roll. It must have been the good luck kiss my daughter gave her die right before she rolled it into Granny's hand.....to get her the lucky number she needed to win!
What a fun way to end our afternoon. We are big fans of Tenzi and can't wait to play again!
Here is a quote for today....
Always walk through life as if you have something new to learn- Vernon Howard
Sunday, July 14, 2013
Hope
Today's gift is hope.
I have two blogs, but unfortunately the other blog has taken a back seat since I started this one. It is really hard to write for one blog, let alone two. Once this one is finished (16 more to go!!!), I will continue to write on my first blog, originally titled Her Climb, but changed it too Our Everyday, Finding Color Amidst the Grey, in October 2012.
Back in April of 2012, I wrote a post on my first blog titled, HOPE. This post was written when our journey with Rett Syndrome hit a bump in the road with my daughter and how hope had entered our lives in a couple of ways.
Hope always has a way of finding its way into our lives when we need it the most. It really does.
The church we started attending a little over a year ago is called Hope. I would love to say we have been regulars, but we haven't. We were really good at the beginning, then we started going down hill. Some of the reasons were to do with my daughter and others were not. It left an empty hole in our lives...one I honestly felt.
After being away for the last FIVE out of six weekends, we finally made it a much needed priority to go back to church. It felt incredible to be back. It was exactly what I needed and as soon as we entered I felt the "hole" go away.
Last Saturday I wrote a post titled, "A Message". What you do not know (yet, in due time you will) is that this message came at a time when my husband and I really needed it as my daughter was having the Rett Monster enter her world in a way he never had before. The "message" of hope that was given to us that Saturday morning I will never forget.
My daughter loves going to church. She sits with us and does not attend the regular Sunday School class...yet. I still say "yet" as I would love for her to participate, but the other side of me also enjoys having her be by our side listening to the sermon. She loves the music and loves people watching. If she didn't enjoy it, then I would help her in Sunday School. Right now, this is a good fit for all of us.
We watched a short video in church this morning, which was extremely funny....and she laughed appropriately! She was laughing at the joke just like the rest of us! And she was able to witness two babies getting baptized.
Then at the end of church as we were walking out of our aisle, the gentleman behind us, tapped my husband on the arm and said something. I couldn't hear as it was loud from the music, but by the tears welling up in my husband's eyes when I said, "what did he say" told me it must have been powerful.
Once we were out in the hall, we pulled over to the side and he told me the gentleman said, "thank you for loving her". Ok...tears in two parents eyes!
Two wonderful messages of hope one week apart! You know what they say....things happen in threes! I am very curious what my third message of hope is going to be.
I went on to get our other two children and while my husband was waiting for me, the man came up again to him. They started talking and he ACTUALLY knew what Rett Syndrome was...I mean REALLY knew!!!! He asked my husband if there was anything he could do for her and he said, "just please pray for her". I can not thank this gentleman enough for taking the time to say those five words which really meant a lot and truly caring about us and our daughter.
Why do I call both of these messages, messages of hope? Because both are telling us how special our daughter is and how she was given to us to love, nurture and care for, for a reason and how through hope, we will see this journey through. Both of these messages would not have been given to us if it were not for our daughter having special needs.
Getting this message today at HOPE, was the sign I needed to remind me we do need to go to church as much as we can...no excuses. I feel like a different person when we leave church on Sunday and it helps me start my week of right. I have tried it the other way...praying at home, on my own. And it isn't the same.
Both of these messages were perfect for my husband to receive first hand too as he deals with his emotions and concerns with Rett Syndrome differently than I do...we all do. It was a perfect reminder for him too, that sometimes we do need a place we all can find hope on our own personal level. All of us....me, my husband, my daughter with Rett Syndrome, my middle daughter and my son. We all need hope in our lives.
Here is a quote for today....
For I know the plans I have for you, says the Lord. Plans to prosper and not to harm you, plans to give you hope and a future- Jeremiah 29:11
© copyright 2012 – All rights reserved
365 Days Gift
I have two blogs, but unfortunately the other blog has taken a back seat since I started this one. It is really hard to write for one blog, let alone two. Once this one is finished (16 more to go!!!), I will continue to write on my first blog, originally titled Her Climb, but changed it too Our Everyday, Finding Color Amidst the Grey, in October 2012.
Back in April of 2012, I wrote a post on my first blog titled, HOPE. This post was written when our journey with Rett Syndrome hit a bump in the road with my daughter and how hope had entered our lives in a couple of ways.
Hope always has a way of finding its way into our lives when we need it the most. It really does.
The church we started attending a little over a year ago is called Hope. I would love to say we have been regulars, but we haven't. We were really good at the beginning, then we started going down hill. Some of the reasons were to do with my daughter and others were not. It left an empty hole in our lives...one I honestly felt.
After being away for the last FIVE out of six weekends, we finally made it a much needed priority to go back to church. It felt incredible to be back. It was exactly what I needed and as soon as we entered I felt the "hole" go away.
Last Saturday I wrote a post titled, "A Message". What you do not know (yet, in due time you will) is that this message came at a time when my husband and I really needed it as my daughter was having the Rett Monster enter her world in a way he never had before. The "message" of hope that was given to us that Saturday morning I will never forget.
My daughter loves going to church. She sits with us and does not attend the regular Sunday School class...yet. I still say "yet" as I would love for her to participate, but the other side of me also enjoys having her be by our side listening to the sermon. She loves the music and loves people watching. If she didn't enjoy it, then I would help her in Sunday School. Right now, this is a good fit for all of us.
We watched a short video in church this morning, which was extremely funny....and she laughed appropriately! She was laughing at the joke just like the rest of us! And she was able to witness two babies getting baptized.
Then at the end of church as we were walking out of our aisle, the gentleman behind us, tapped my husband on the arm and said something. I couldn't hear as it was loud from the music, but by the tears welling up in my husband's eyes when I said, "what did he say" told me it must have been powerful.
Once we were out in the hall, we pulled over to the side and he told me the gentleman said, "thank you for loving her". Ok...tears in two parents eyes!
Two wonderful messages of hope one week apart! You know what they say....things happen in threes! I am very curious what my third message of hope is going to be.
I went on to get our other two children and while my husband was waiting for me, the man came up again to him. They started talking and he ACTUALLY knew what Rett Syndrome was...I mean REALLY knew!!!! He asked my husband if there was anything he could do for her and he said, "just please pray for her". I can not thank this gentleman enough for taking the time to say those five words which really meant a lot and truly caring about us and our daughter.
Why do I call both of these messages, messages of hope? Because both are telling us how special our daughter is and how she was given to us to love, nurture and care for, for a reason and how through hope, we will see this journey through. Both of these messages would not have been given to us if it were not for our daughter having special needs.
Getting this message today at HOPE, was the sign I needed to remind me we do need to go to church as much as we can...no excuses. I feel like a different person when we leave church on Sunday and it helps me start my week of right. I have tried it the other way...praying at home, on my own. And it isn't the same.
Both of these messages were perfect for my husband to receive first hand too as he deals with his emotions and concerns with Rett Syndrome differently than I do...we all do. It was a perfect reminder for him too, that sometimes we do need a place we all can find hope on our own personal level. All of us....me, my husband, my daughter with Rett Syndrome, my middle daughter and my son. We all need hope in our lives.
Here is a quote for today....
For I know the plans I have for you, says the Lord. Plans to prosper and not to harm you, plans to give you hope and a future- Jeremiah 29:11
© copyright 2012 – All rights reserved
365 Days Gift
Saturday, July 13, 2013
Her Love for Boo
Today's gift is her love for Boo.
My daughter loves the movie Monsters Inc. This movie came out when she was 7 1/2 weeks old! I don't know when the first time she saw it was, but I do remember it was instantly a favorite! It was this movie which got her saying the word "boo". When she was little many people would come up to us and say she looked like Boo in the movie. And she did.
This summer as you know Monster's University came out and I can not wait to add it to her collection of movies. There is something about Boo, Mike and Sulley that she loves. Maybe it's just the fact they make her laugh and she is happy when watching them.
With all the hype of the new Monster's University movie the stores have all kinds of Monster's themed items...books, dolls, toys, games, etc. Right before our road trip I bought her a new Monster's book...Boo on the Loose. It is an early reader one and the reason I bought it. I was hoping and thinking we could read it together. What a better motivator too, than to read about her favorite characters!
We read it over our trip, but tonight was the first night she was "awake" enough when I put her to bed to be interested in reading it with me. I let her read all the words she could say (some required a partial prompt) where others did not. She said all three characters names by me just pointing to their pictures on the page....(Boo=Boo, Mike=Mi, and Sulley=I would say Sull and she would say E). This part of reading the story was her favorite!
After we finished the book, she looked at me and said in her most sincere voice, "Mommy"....which to me means she was so happy! I asked her if that was fun and she said, "ya"!
I love taking what she knows and what she can say and use it in a totally appropriate, typical setting. Of course the book isn't on peer level, but I don't care. It is on her level...and a level I never thought she would be on.
Here is a quote for today...in honor of the movie here is a quote from Monster's Inc....
You're not supposed to name it. Once you name it, you start getting attached to it- Mike to Sulley in regards to naming the little girl, Boo.
My daughter loves the movie Monsters Inc. This movie came out when she was 7 1/2 weeks old! I don't know when the first time she saw it was, but I do remember it was instantly a favorite! It was this movie which got her saying the word "boo". When she was little many people would come up to us and say she looked like Boo in the movie. And she did.
This summer as you know Monster's University came out and I can not wait to add it to her collection of movies. There is something about Boo, Mike and Sulley that she loves. Maybe it's just the fact they make her laugh and she is happy when watching them.
With all the hype of the new Monster's University movie the stores have all kinds of Monster's themed items...books, dolls, toys, games, etc. Right before our road trip I bought her a new Monster's book...Boo on the Loose. It is an early reader one and the reason I bought it. I was hoping and thinking we could read it together. What a better motivator too, than to read about her favorite characters!
We read it over our trip, but tonight was the first night she was "awake" enough when I put her to bed to be interested in reading it with me. I let her read all the words she could say (some required a partial prompt) where others did not. She said all three characters names by me just pointing to their pictures on the page....(Boo=Boo, Mike=Mi, and Sulley=I would say Sull and she would say E). This part of reading the story was her favorite!
After we finished the book, she looked at me and said in her most sincere voice, "Mommy"....which to me means she was so happy! I asked her if that was fun and she said, "ya"!
I love taking what she knows and what she can say and use it in a totally appropriate, typical setting. Of course the book isn't on peer level, but I don't care. It is on her level...and a level I never thought she would be on.
This was taken in September of 2011 at Disney!
Here is a quote for today...in honor of the movie here is a quote from Monster's Inc....
You're not supposed to name it. Once you name it, you start getting attached to it- Mike to Sulley in regards to naming the little girl, Boo.
Friday, July 12, 2013
Getting Her Point Across
Today's gift is getting her point across.
Even though my daughter can not communicate verbally, she has many ways to get her point across. As you know from previous posts she will use the words she can say to request something she wants. But not all the time.....like when she can not verbally express the word she wants to say.
Frustrating. I can't even being to imagine. I think we should all try it for one day. To live in her shoes. I bet we wouldn't make it an hour.
If she doesn't have the word she often will use gestures or actually get the thing she wants. If I had to pick a favorite gesture she uses to get her point across, it would be how she indicates she would like her legs rubbed....like she did tonight.
She waits for you to sit next to her and within minutes she will throw her leg over on top of your lap, pull her pant leg up (if needed) and point to her leg. If you stop, she will wiggle her leg or make a sound to indicate she wants you to continue. She really cracks me up.
I know where she gets this gene from...me! I love a good massage!
Even though there are many ways for her to express what she wants, there are many days we are still left in the unknown. The days we are lost are often the times we wish we understood or could help her the most.
Here is a quote for today...
I know it's been tough, but I'm still cheering for you...always...- Author Unknown
Even though my daughter can not communicate verbally, she has many ways to get her point across. As you know from previous posts she will use the words she can say to request something she wants. But not all the time.....like when she can not verbally express the word she wants to say.
Frustrating. I can't even being to imagine. I think we should all try it for one day. To live in her shoes. I bet we wouldn't make it an hour.
If she doesn't have the word she often will use gestures or actually get the thing she wants. If I had to pick a favorite gesture she uses to get her point across, it would be how she indicates she would like her legs rubbed....like she did tonight.
She waits for you to sit next to her and within minutes she will throw her leg over on top of your lap, pull her pant leg up (if needed) and point to her leg. If you stop, she will wiggle her leg or make a sound to indicate she wants you to continue. She really cracks me up.
I know where she gets this gene from...me! I love a good massage!
Even though there are many ways for her to express what she wants, there are many days we are still left in the unknown. The days we are lost are often the times we wish we understood or could help her the most.
Here is a quote for today...
I know it's been tough, but I'm still cheering for you...always...- Author Unknown
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