Today's gift is a daddy day.
As you all know...it is Mother's Day weekend. I like to find something fun to do with the kids on Mother's Day. And it is sometimes hard to try and do you want to do while also thinking of what your kids would like to do and all the other "mother's" in your family.
Today I surprised my mom and drove up to see her with my son. Remember I mentioned last weekend we were alternating weekends with who spends time with daddy....well, this weekend was a "girls" weekend with daddy. My mom had no idea we were coming up, but my dad was in on the surprise.
Everyone loves spending time with daddy. And I couldn't be happier! I am so lucky to have a husband who is caring, understanding, hands on and everything in between. We are a good team and we both know when we each could use a little break from the kids to recharge our batteries.
Today came at a perfect time.
I am not going to lie...I needed a little space and needed a little time to myself. It has been busy week and the Rett Monster is doing some things to my daughter I don't like. I needed some time to clear my head and I needed some time to relax and enjoy the moment.
I also needed a little mommy time...my time with my mother.
I am very lucky that I see her weekly, but many of those days are shared with all my kids too. And if you think I worry about my daughter with Rett Syndrome...you haven't seen anything. My mom worries more than I do! Which is good...to an extent.
I need a place I can go and not have to talk Rett....where I can escape the world of Rett for a little bit. Of course it is always on my mind...but I don't have to talk about 24/7. And sometime you just want your mom. But sometimes it is hard to go to your mom to escape, when you know she is going to talk Rett...and you know she is going to talk about something she is worrying about.
It truly is a hard place to be.
However, today my visit with my mom was great. I don't know if she knew I needed her time and attention on me. I don't know if she didn't want to talk Rett either. I don't know.....
But what I do know is it was nice. It was a breath of fresh air. It was what I needed.
And while I was having my "mommy" time, I knew my daughter was having the time of her life too....after all she is Daddy's Girl!
Here is a quote for today....
When you are a mother you are never really alone in your thoughts. A mother always thinks twice, once for herself and once for her child- Sophia Loren
© copyright 2012 – All rights reserved
365 Days Gift
Saturday, May 11, 2013
Friday, May 10, 2013
Successful Field Trip
Today's gift is a successful field trip.
Wow, I am tired. And I assume my daughter was too as she went to bed a little earlier tonight. We had a long day together on a field trip.
Today the fourth grade went to Jamestown. We had an incredible day weather wise and the field trip was a lot of fun. Exhausting, but fun.
I love seeing her among her peers...her mainstream peers. I love seeing her look at them and them interact with her.
Luckily for my daughter, most of the field trip she could be pushed in her cruiser and didn't need to walk. Which I have to say was a very good thing for this field trip. Due to her walking issues lately, there would have been no way she could have participated in the field trip if it wasn't for her cruiser. It was a lot of walking...for 2 1/2 hours.
As we moved from building to building, hut to hut, boat to boat, she listened and participated just like her peers. She loved being a part of something so "typical".
I remember the days where "typical" field trips were an issue for her. Where just riding on the bus was a lot for her. Where the day was too long for her. Where the stimulation of everything was too much. And when I think of the past, I smile, because today we have come so far.
Today, she road on the charter bus with her class and was fantastic! She participated in the entire field trip with no issues. Nothing surprised her...not even when the canons were firing! Which was amazing!!!! She didn't even blink!!! I loved seeing all of this!!!
However, I will say one part of the field trip was hard for me to watch...and it was her mobility. I don't know why, but her walking is becoming more and more of an issue...some days better than others. And it truly kills me to watch this. Kills me.
Today, the kids were able to walk up a ramp and get onto a ship. I started up the ramp with her before her class so we could take our time. The ramp was flat with an incline going up and then three little stairs going down into the boat. This. Was. A. Workout. For. Me. I had no idea. Two years ago she would have walked up the ramp with no issues. Today that was not the case. It scared me. I don't like seeing her like this. I basically pushed her up with all that I had.
And then we had to walk down. Which we did. But again, it scared me.
I will not let this one issue, this one negativity take away from all the positives I saw today. While it is a big issue (and one we will continue to work on), it still will not take from the great day we had together. It will not take away how far she has come.
We ended our day with a yummy picnic in the shade. This field trip was the perfect way to kick off my Mother's Day weekend!
Here is a quote for today....
Tell me and I forget. Teach me and I may remember. Include me and I will learn- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
Wow, I am tired. And I assume my daughter was too as she went to bed a little earlier tonight. We had a long day together on a field trip.
Today the fourth grade went to Jamestown. We had an incredible day weather wise and the field trip was a lot of fun. Exhausting, but fun.
I love seeing her among her peers...her mainstream peers. I love seeing her look at them and them interact with her.
Luckily for my daughter, most of the field trip she could be pushed in her cruiser and didn't need to walk. Which I have to say was a very good thing for this field trip. Due to her walking issues lately, there would have been no way she could have participated in the field trip if it wasn't for her cruiser. It was a lot of walking...for 2 1/2 hours.
As we moved from building to building, hut to hut, boat to boat, she listened and participated just like her peers. She loved being a part of something so "typical".
I remember the days where "typical" field trips were an issue for her. Where just riding on the bus was a lot for her. Where the day was too long for her. Where the stimulation of everything was too much. And when I think of the past, I smile, because today we have come so far.
Today, she road on the charter bus with her class and was fantastic! She participated in the entire field trip with no issues. Nothing surprised her...not even when the canons were firing! Which was amazing!!!! She didn't even blink!!! I loved seeing all of this!!!
However, I will say one part of the field trip was hard for me to watch...and it was her mobility. I don't know why, but her walking is becoming more and more of an issue...some days better than others. And it truly kills me to watch this. Kills me.
Today, the kids were able to walk up a ramp and get onto a ship. I started up the ramp with her before her class so we could take our time. The ramp was flat with an incline going up and then three little stairs going down into the boat. This. Was. A. Workout. For. Me. I had no idea. Two years ago she would have walked up the ramp with no issues. Today that was not the case. It scared me. I don't like seeing her like this. I basically pushed her up with all that I had.
And then we had to walk down. Which we did. But again, it scared me.
I will not let this one issue, this one negativity take away from all the positives I saw today. While it is a big issue (and one we will continue to work on), it still will not take from the great day we had together. It will not take away how far she has come.
We ended our day with a yummy picnic in the shade. This field trip was the perfect way to kick off my Mother's Day weekend!
Here is a quote for today....
Tell me and I forget. Teach me and I may remember. Include me and I will learn- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
Thursday, May 9, 2013
Hiccup
Today's gift is hiccup.
This afternoon I had an appointment and while I was out my mom helped me by giving my daughter her evening bath. Thanks Mom!
Sometimes my daughter lets you dry her hair and sometimes she does not. When I got home her hair was still wet so after my mom left I decided to bring the hairdryer downstairs to see if she would let me dry it while she watched tv on the sofa.
Instead of watching tv, she wanted to play on her iPad....did I mention she was really into her iPad lately!?! So I started blow drying her hair...which by the way makes the morning routine of "doing hair" so much easier if it is dried after her bath. While I was drying her hair she kept saying "up" over and over again. Then she would start laughing. I thought she was telling me she was over me drying her hair and she wanted to get "up". Silly me!
I finally looked down on her iPad to see what was so funny and I was amazed! She was saying "up" appropriately and for a reason!!! She was on her feelings app and she kept touching the hiccup button and little character would "hiccup"....which would make her laugh and her say "up"!!!!
Since the hairdryer was on I could not hear the iPad saying "hiccup", all I could hear was her saying "up".
I am so proud of her for communicating to me the best she could!!!! She amazes me every day....she truly does!
Here is a quote for today...
The greatest thing you can do is surprise yourself- Steve Martin
© copyright 2012 – All rights reserved
365 Days Gift
This afternoon I had an appointment and while I was out my mom helped me by giving my daughter her evening bath. Thanks Mom!
Sometimes my daughter lets you dry her hair and sometimes she does not. When I got home her hair was still wet so after my mom left I decided to bring the hairdryer downstairs to see if she would let me dry it while she watched tv on the sofa.
Instead of watching tv, she wanted to play on her iPad....did I mention she was really into her iPad lately!?! So I started blow drying her hair...which by the way makes the morning routine of "doing hair" so much easier if it is dried after her bath. While I was drying her hair she kept saying "up" over and over again. Then she would start laughing. I thought she was telling me she was over me drying her hair and she wanted to get "up". Silly me!
I finally looked down on her iPad to see what was so funny and I was amazed! She was saying "up" appropriately and for a reason!!! She was on her feelings app and she kept touching the hiccup button and little character would "hiccup"....which would make her laugh and her say "up"!!!!
I am so proud of her for communicating to me the best she could!!!! She amazes me every day....she truly does!
Here is a quote for today...
The greatest thing you can do is surprise yourself- Steve Martin
© copyright 2012 – All rights reserved
365 Days Gift
Wednesday, May 8, 2013
Engaging in Something of Interest
Today's gift is engaging in something of interest.
After school my daughter asks for a snack the minute we walk in the door. Our routine starts with settling down and having a snack before we start homework. My kids are hungry when they come home!
Once she had her snack, instead of watching tv she was really engaged in her iPad. She was playing games, listening to music, watching Hannah Montana, switching songs, looking at pictures, etc. She did this for over thirty minutes!!!! I could not believe it! Usually she will play with her iPad for about 15 minutes....but 30...wow!
She was tapping and swiping the screen like she was on a mission. Every time I would look to make sure she wasn't trying to communicate something to me through her Touch Chat app, I saw she was on her iTunes account! She loves her music! She was definitely on a mission for something!
It didn't end here though!
After her bath this evening, while I was blow drying her hair she picked up her sister's iPad and was engaged once again. She didn't want to stop! Well, after her hair was dried, I just let her enjoy this down time where she was entertaining herself....for so long. It was a very nice surprise to not have to be watching her....constantly.
I have seen her be engaged with her iPad and photo albums before, but not to the length and intensity she was today. There was definitely something different about...but I can not put my finger on what it was.
Then tonight, I was getting the kids book bags ready for school tomorrow and read her news and notes from school. I had scanned it briefly when we came home, but not all the way. It said that she was a typing machine today! She was typing and spelling away! Well, that explains her pointer finger getting all the extra exercise this afternoon.
I guess something "clicked" today at school and she wanted to make sure her pointer finger didn't lose its touch. All the times I "think" she is randomly pressing apps and randomly playing on the iPad....isn't so random. In fact, it is her way of practicing and keeping her pointer finger active to be able to type...purposefully. And hopefully one day...when she gets the concept of typing down fully we will be able to get more out of her little head and she can tell us more about her!
Here is a quote for today....
Doing your best is more important than being the best- Zig Ziglar
© copyright 2012 – All rights reserved
365 Days Gift
After school my daughter asks for a snack the minute we walk in the door. Our routine starts with settling down and having a snack before we start homework. My kids are hungry when they come home!
Once she had her snack, instead of watching tv she was really engaged in her iPad. She was playing games, listening to music, watching Hannah Montana, switching songs, looking at pictures, etc. She did this for over thirty minutes!!!! I could not believe it! Usually she will play with her iPad for about 15 minutes....but 30...wow!
She was tapping and swiping the screen like she was on a mission. Every time I would look to make sure she wasn't trying to communicate something to me through her Touch Chat app, I saw she was on her iTunes account! She loves her music! She was definitely on a mission for something!
It didn't end here though!
After her bath this evening, while I was blow drying her hair she picked up her sister's iPad and was engaged once again. She didn't want to stop! Well, after her hair was dried, I just let her enjoy this down time where she was entertaining herself....for so long. It was a very nice surprise to not have to be watching her....constantly.
I have seen her be engaged with her iPad and photo albums before, but not to the length and intensity she was today. There was definitely something different about...but I can not put my finger on what it was.
Then tonight, I was getting the kids book bags ready for school tomorrow and read her news and notes from school. I had scanned it briefly when we came home, but not all the way. It said that she was a typing machine today! She was typing and spelling away! Well, that explains her pointer finger getting all the extra exercise this afternoon.
I guess something "clicked" today at school and she wanted to make sure her pointer finger didn't lose its touch. All the times I "think" she is randomly pressing apps and randomly playing on the iPad....isn't so random. In fact, it is her way of practicing and keeping her pointer finger active to be able to type...purposefully. And hopefully one day...when she gets the concept of typing down fully we will be able to get more out of her little head and she can tell us more about her!
Here is a quote for today....
Doing your best is more important than being the best- Zig Ziglar
© copyright 2012 – All rights reserved
365 Days Gift
Tuesday, May 7, 2013
The Importance of Maintenance
Today's gift is the importance of maintenance.
My daughter works so hard every day with everything she learns. Whether it is learning something new in school, learning how to do something for herself like feeding herself with a fork or learning a new type of stretching at physical therapy she is always learning. And with learning also comes maintenance...to help her maintain the skill.
During the summer and throughout the school year she is given "maintenance" work to go over in school and at home so she doesn't lose any of the skills she has worked so hard to gain. At physical therapy they are always incorporating many different types of techniques...new and old...so she is always has familiar ones in case a "newer" technique doesn't go smoothly. Sometimes when they try a new method of stretching she doesn't like it as she is unsure so they have to maintain the old ones to have a fall back, in order to get the stretch for the day.
Tonight at dinner she stated she wanted "more" after she was finished. I had already given her a little extra to eat, but didn't want to give her a full second helping. So I asked her if she wanted some fruit....and she said "ya". So my middle daughter brought over some blueberries to the table. After I gave her a couple to pick up and eat, I decided to turn this into a little "maintenance" session.
I placed a large blueberry in one hand and a small blueberry in the other hand. I then asked her to point to the larger blueberry. Bam! Without hesitation, she not only pointed to it, but picked it up and ate it! Then I switched the smaller blueberry to the other hand (without her looking) and picked up a larger blueberry and asked her the opposite question. Bam! Again...perfect answer followed by a blueberry in the mouth!
Next I decided to work on numbers as numbers and my daughter don't go well together...she is not a numbers girl....kinda like her mommy!!! I placed three blueberries in one hand and one blueberry in the other and asked her to point to the hand with three blueberries in it. WOW! She was on fire tonight! We kept doing this over and over again. And she kept showing me that she knew her "stuff"!!!!
Something so easy...I know. However, learning these skills was not easy for my daughter and I am so thrilled that she understands the concept of larger and smaller and more and less!!!! I am beyond thrilled with her desire to learn and only want to help her maintain all her knowledge!
Here is a quote for today....
Let her sleep... for when she wakes, she will move mountains-Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
My daughter works so hard every day with everything she learns. Whether it is learning something new in school, learning how to do something for herself like feeding herself with a fork or learning a new type of stretching at physical therapy she is always learning. And with learning also comes maintenance...to help her maintain the skill.
During the summer and throughout the school year she is given "maintenance" work to go over in school and at home so she doesn't lose any of the skills she has worked so hard to gain. At physical therapy they are always incorporating many different types of techniques...new and old...so she is always has familiar ones in case a "newer" technique doesn't go smoothly. Sometimes when they try a new method of stretching she doesn't like it as she is unsure so they have to maintain the old ones to have a fall back, in order to get the stretch for the day.
Tonight at dinner she stated she wanted "more" after she was finished. I had already given her a little extra to eat, but didn't want to give her a full second helping. So I asked her if she wanted some fruit....and she said "ya". So my middle daughter brought over some blueberries to the table. After I gave her a couple to pick up and eat, I decided to turn this into a little "maintenance" session.
I placed a large blueberry in one hand and a small blueberry in the other hand. I then asked her to point to the larger blueberry. Bam! Without hesitation, she not only pointed to it, but picked it up and ate it! Then I switched the smaller blueberry to the other hand (without her looking) and picked up a larger blueberry and asked her the opposite question. Bam! Again...perfect answer followed by a blueberry in the mouth!
Next I decided to work on numbers as numbers and my daughter don't go well together...she is not a numbers girl....kinda like her mommy!!! I placed three blueberries in one hand and one blueberry in the other and asked her to point to the hand with three blueberries in it. WOW! She was on fire tonight! We kept doing this over and over again. And she kept showing me that she knew her "stuff"!!!!
Something so easy...I know. However, learning these skills was not easy for my daughter and I am so thrilled that she understands the concept of larger and smaller and more and less!!!! I am beyond thrilled with her desire to learn and only want to help her maintain all her knowledge!
Here is a quote for today....
Let her sleep... for when she wakes, she will move mountains-Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
Monday, May 6, 2013
Her Love for People Who Help Her
Today's gift is her love for people who help her.
90% of how my daughter communicates many things is through her body language. The more you know her, the more you can find out what her body language means.
One thing she never forgets is a face...whether it was a positive experience or a negative one, she will never forget a face. This is extremely helpful when we are trying to figure out who is the best match to work with our daughter whether a babysitter or a therapist. Her body language and facial expressions tell the story.
There have been many times when she has gotten the "look" in her eye when around someone she doesn't like or didn't like it when they were a part of her life. Times like these let us know she is unhappy and must move on and that apparently the person working with her is not the right fit.
Thankfully, I can count on one hand the number of people who fall into this category! But to this day if we see them, she will get "the look" on her face. She means business!
I am beyond thrilled to say we have more people who leave her laughing and grinning from ear to ear! Just like today, she went to the chiropractor for the third time. From the girls at the front desk to the doctor, she is all smiles...big smiles...and I know she approves of them. I know she feels comfortable in this environment. I know I can trust her body language!
I am so happy she has her signs to tell me she approves or doesn't approve of someone working with her. I have to trust her in that she will tell me and I have to be ready to watch for any signs she may give me to let me know something isn't right.
My daughter is extremely blessed to have so many people who truly care for her and want what is the best for her. I couldn't be happier with her team of teachers, therapists, and doctors and I know I can trust my daughter to tell me otherwise.
Here is a quote for today....
Character is how your treat those who can do nothing for you- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
90% of how my daughter communicates many things is through her body language. The more you know her, the more you can find out what her body language means.
One thing she never forgets is a face...whether it was a positive experience or a negative one, she will never forget a face. This is extremely helpful when we are trying to figure out who is the best match to work with our daughter whether a babysitter or a therapist. Her body language and facial expressions tell the story.
There have been many times when she has gotten the "look" in her eye when around someone she doesn't like or didn't like it when they were a part of her life. Times like these let us know she is unhappy and must move on and that apparently the person working with her is not the right fit.
Thankfully, I can count on one hand the number of people who fall into this category! But to this day if we see them, she will get "the look" on her face. She means business!
I am beyond thrilled to say we have more people who leave her laughing and grinning from ear to ear! Just like today, she went to the chiropractor for the third time. From the girls at the front desk to the doctor, she is all smiles...big smiles...and I know she approves of them. I know she feels comfortable in this environment. I know I can trust her body language!
I am so happy she has her signs to tell me she approves or doesn't approve of someone working with her. I have to trust her in that she will tell me and I have to be ready to watch for any signs she may give me to let me know something isn't right.
My daughter is extremely blessed to have so many people who truly care for her and want what is the best for her. I couldn't be happier with her team of teachers, therapists, and doctors and I know I can trust my daughter to tell me otherwise.
Here is a quote for today....
Character is how your treat those who can do nothing for you- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
Sunday, May 5, 2013
Opinion
Today's gift is opinion.
We all have opinions. We may not all agree on things and that is ok...this is what makes us all unique. Imagine what a boring world this would be if we all agreed on everything.
I try and ask my daughter her opinion on things...whether it is a food choice, drink choice, movie choice, etc...as I know she has likes and dislikes. I want her to be able to tell me as much as she can...so we give her choices. Sometimes I wonder if her choices...as in the number I give her...are enough. Or the right ones. I hope so.
This afternoon we were sitting on the sofa together looking at an US magazine...catching up on Hollywood Drama. I decided to ask her questions all through the magazine as I wanted to see what she thought...I wanted to see her tastes...I wanted her opinion.
One of the first pages we opened had the topic, Slammin' Salmon on the Red Carpet with six ladies wearing the same color, but different style dress. I asked her which dress she liked the best. She studied each one and after a minute or two she pointed to one. And I have to say she has great taste! She picked Camila McConaughey who was wearing Escada...and the dress is simple, but elegant. It was my second favorite.
We did this throughout the magazine and had so much fun. It was neat to see her tastes and likes. I feel like I know a little bit more about her tonight. Something so simple, yet so informative.
I can't wait till the next magazine to find out more! This time our magazine will be different too!
Here is today's quote...
Don't let the noise of other people's opinions drown out your inner voice- Steve Jobs
© copyright 2012 – All rights reserved
365 Days Gift
We all have opinions. We may not all agree on things and that is ok...this is what makes us all unique. Imagine what a boring world this would be if we all agreed on everything.
I try and ask my daughter her opinion on things...whether it is a food choice, drink choice, movie choice, etc...as I know she has likes and dislikes. I want her to be able to tell me as much as she can...so we give her choices. Sometimes I wonder if her choices...as in the number I give her...are enough. Or the right ones. I hope so.
This afternoon we were sitting on the sofa together looking at an US magazine...catching up on Hollywood Drama. I decided to ask her questions all through the magazine as I wanted to see what she thought...I wanted to see her tastes...I wanted her opinion.
One of the first pages we opened had the topic, Slammin' Salmon on the Red Carpet with six ladies wearing the same color, but different style dress. I asked her which dress she liked the best. She studied each one and after a minute or two she pointed to one. And I have to say she has great taste! She picked Camila McConaughey who was wearing Escada...and the dress is simple, but elegant. It was my second favorite.
We did this throughout the magazine and had so much fun. It was neat to see her tastes and likes. I feel like I know a little bit more about her tonight. Something so simple, yet so informative.
I can't wait till the next magazine to find out more! This time our magazine will be different too!
Here is today's quote...
Don't let the noise of other people's opinions drown out your inner voice- Steve Jobs
© copyright 2012 – All rights reserved
365 Days Gift
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