Wednesday, October 31, 2012

A Boo-tiful Halloween

Today's gift is a boo-tiful Halloween.

Halloween can be hit or miss for us and our daughter with special needs.  We have had some very good years and we have had some very bad years...and a couple in between.

I honestly do not know how she feels about Halloween and the whole dressing up thing.  However, I do know she loves the candy part.

Every year we narrow down her costume selection choices to a few and let her pick what she would like to be, when I know she would prefer to go as herself and collect all the candy she can.  I mean come on, who isn't going to give her any candy.  Plus, after seeing some of the kids come to my door tonight...in their "regular" clothes, I am tempted to not worry about the costume next year.

But then it would not be the same.

My husband and I would love for our entire family to dress up with a theme one year...but our youngest two haven't bought into the idea..yet.  Maybe next year...with some bribing!

This year our daughter with Rett Syndrome picked her costume herself in the store.  No choices...just walked right up to the costumes and picked it out.  And I have to say she was one adorable pirate....don't you think so too!


Right before we got her dressed after dinner, she was starting to teeter....meaning either she was going to go into a behavior or she wasn't.  We prayed she would not have a behavior and tried to keep the peace....which was challenging as the other two were ready to go out the door.  Half the time, she gets upset from watching them act ridiculous!  

We were able to get her dressed and out the door with the help of five skittles...whatever it takes...right!  Of course when we get outside, I want to try and get a picture of all the kids together.  Between them and my camera, it is amazing I got anything!



My husband and I really wanted her to walk this Halloween as last year she was still recuperating from her surgery and was unable to.  But she had other plans....she wanted to be pushed in her "cruiser"....she is no dummy!   All we wanted was for her to be happy...so we pushed her to the first few houses and then had her walk a whole cul-de-sac.  

Then she was done.  Not done, being outside, done walking and trick or treating.  She just wanted to be pushed and look at everyones costumes and see her friends.  Ok...she won!

After an hour, I was beginning to not feel my toes anymore, so she and I went back home to hand out candy with my mother-in-law....where it was nice...and...warm!

Of course, when we came in she wanted to have a couple of pieces of her candy she worked hard for...so she did get them!  We enjoyed watching another 40 kids come to the door in a 30 minute window...we have tons of kids in our neighborhood.  

When we only had 10 pieces of candy left we called it a night.  A successful night!  A Boo-tiful night!  No behaviors....just laughs and lots of candy.

As we were getting the kids into their pj's our door bell started to ring.  Of course we were ignoring it as our light was off on the front porch.  Someone kept ringing it as they saw my middle daughter walking upstairs.  My middle daughter came running into our bedroom and said who was at the door.

One of my daughter's (my daughter with Rett Syndrome) best friends was at the door!  She wanted to come say Happy Halloween and see her in her costume.  This friend does not even live in our neighborhood!  Unfortunately, she didn't get to see her in her costume, but she did get to see her.  

The smile on my daughter's face from seeing her friend at the door was the perfect ending to our Boo-tiful Halloween!  

Here are some quotes for today...

One kind word can change someone's entire day- Author Unknown

How beautiful a day can be when kindness touches it- Author Unknown

Make your smile change the world, but don't let the world change your smile- Author Unknown






Tuesday, October 30, 2012

Letting me sing to her...still

Today's gift is she still let's me sing to her.

Let's face it, I'm no Carrie Underwood or Taylor Swift, but I do like to sing along to music. Who doesn't? I loved singing to my children when they were babies and rocking them to sleep. They certainly did not know a good voice from a bad one back then....or they covered it up well.

Luckily, two of my children still do not mind my voice...my oldest and youngest.

Both of them actually request I sing for them...my daughter points to the hand which means songs when I give her a choice using both of my hands (one for books and one for songs) and my son uses his voice to ask me to sing to him.

My favorite songs to sing are Christmas Carols. Don't ask me why, I just love them. While singing them in the middle of the summer does not put me in the Christmas spirit, singing them now does.

I love the way my daughter looks at me when I sing to her. It's like all her cares in the world are gone and she just melts in my arms. No handwringing, just relaxed 100%, resting next to me, listening to every word I sing to her. My voice either must be soothing to her or scary as she falls asleep usually by the second song. I'm going to go with soothing on this one...not to say I am a good singer, but for the fact she is calm and not hiding under the covers.

Once she is asleep I love just looking down at her sleeping so peacefully. I wonder if she dreams of singing to me. I hope so. And I hope her dream comes true one day, as I would love nothing more than for her to sing to me.

Instead of quotes tonight, I'm going to share my favorite Christmas Carols I sing to her....

My all time favorite is White Christmas

Other favorites are Silver Bells, Chestnuts Roasting on an Open Fire, Home for the Holidays, It's the Most Wonderful Time of the Year, Jingle Bells, Joy to the World

And our favorite is Rudolph the Red Nosed Reindeer. When I sing this to her I do not say the word nose...she does as she points to hers. And when we get to the part.."and if you ever saw it, you would even say it glowed...". ...she also says glowed for me! When we first started singing this song together she only pointed to her nose...now she says two words!



Monday, October 29, 2012

Appropriate Reaction to a Scene in a Movie

Today's gift is an appropriate reaction to a scene in a movie.

Like most people living on the East Coast, we did not have school today and were hunkered down waiting for Sandy to show up enjoying a pajama day.   We had a very productive day of organizing and cooking, but also enjoyed movie time!

Every one (well, my three kids) were able to chose what movie they wanted to watch today....on a rotating basis.  When it was my oldest daughter's turn, she picked Santa Paws....nothing like getting ready for the holidays a little early (and I can't complain as I LOVE Christmas music!).

I do not know if you have seen this movie or not, but it truly is a very sweet movie.  However, it does have some sad scenes.  My daughter was sitting on the sofa with me and my younger two were sitting on the chair nearby.  She was snuggled up with a blanket and her pillow pet next to me.  I have to note here, most times when her pillow pet is around...it is just that....around.  She will touch it once or twice, but will not use it like her peers as a "pillow".

There is a scene early on in the movie where the lady in charge of the orphanage is mean to one of her orphan's and throws her only stuffed animal into the incinerator.  At this point of the movie, my daughter reacted like she never has before....

She grabbed her pillow pet and hugged it for a good 7 minutes like I have never seen.  It was as if she actually felt how horrible this would be to have someone treat her stuffed animal like this.  I was so excited for her for reacting appropriately, showing her true feelings, I actually took a couple of pictures....as this was one of the most beautiful things I have seen her  do.

This is right when she grabbed her pillow pet....


And this was a few minutes later as she was watching so intently....


She continued to watch the rest of the movie with one hand on her pillow pet.   

My daughter truly surprises me in the littlest ways.....especially when I least expect them.  

Looks like tomorrow will be another pillow pet hugging kind of day!

Here are two quotes for today...

The best things in life are found when you are not even looking for them- Author Unknown

From one of my favorite movies....
It's the rule of life that everything you have always wanted comes the very second you stop looking for it- Sex and the City




Sunday, October 28, 2012

A little game of hide and seek

Today's gift is the game hide and seek.

There are not many times when my husband and I can have a conversation which is not interrupted by one of our three children......until they are all asleep!  Someone always wants to talk to us....at the exact moment we want to talk to each other.

Interesting how this happens.

My daughter who has special needs requires constant supervision as we do not want her to hurt herself or for her to make a mess by emptying shelves in the playroom.   Either my husband or I are constantly watching her making any conversation we have with one another kinda difficult, as we usually are moving all over the house with her.

There are times when she will sit still for a little bit....either to play connect 4 or to actually "chill" out on the sofa to watch tv; however, we still need to be close by as these times come in spurts.  The amount of energy this child has is impressive!  She is like the energizer bunny!!!!

This evening while I was making dinner, my other two children started playing hide and seek with their sister.  For 15 WHOLE minutes they were playing together AND my husband and I had a conversation with no interruptions!!!!  It was one of those moments were you honestly can't believe you are having this moment.  Both of us in the kitchen....me cooking a delicious dinner...and we are having a conversation....something so little....yet so big.

She loves to play hide and seek.  She prefers to be the seeker rather than hide, and her siblings are ok with this.  If you ever play with her, watch out...she is fast!  You don't have much time to hide.

It amazes me how a simple game of hide and seek can allow my husband and I time to talk, instead of waiting until the kids are in bed.  Hide and seek not only allows us to be able to talk and have some "down" time, but also allows all my children to interact and play a typical game....together.

As far as I see it...hide and seek is a win win for all of us!  Game on!

Here are two quotes for today...

When I am playing hide and seek and the seeker walks past the place where I am hiding, I feel like where's Waldo- Author Unknown

It is the sweet simple things in life which are the real ones after all- Laura Ingalls Wilder


Saturday, October 27, 2012

Independence

Today's gift is independence.

I think we all take for granted life's simplest tasks. Do you ever think how fortunate you are to be able to eat using utensils, get yourself dressed, bathe yourself, type on a computer or text on your phone, hold a cup and drink from it....the list can go on and on.

My perspective on these tasks, which I used to take for granted changed once I had a child with special needs.

My daughter requires assistance in all aspects of her day.

  • She cannot get herself dressed independently, but will help me when I ask her.
  • She cannot bathe herself...from getting in and out of the bathtub to actually washing.
  • She cannot feed herself with utensils, but will pick up the fork or spoon if we put the food on it for her and feed herself, place the utensil back down and wait for another bite.
  • She cannot get in and out of the car without assistance.
  • She cannot walk up and down the stairs without assistance.
  • She can not grab a cup from the cabinet and pour a drink into the cup, but she can hold the cup and drink from it.
  • She needs constant supervision as she does not realize danger.
When my daughter is thirsty she will open the fridge and point to what she wants. Sometimes she will try to grab it, but then this is where her "trying to get something to drink" ends. If a cup is out on the counter she will bring it to us and say cup. But this is it.

However tonight...all the steps came together...

We always have a cup upstairs in our bedroom as someone is usually thirsty. Tonight we were getting everyone ready for bed and I heard my daughter in our bathroom...alone. My 8 year old walked in and said, "she is getting something to drink...mom, she really is getting something to drink!"

Sure enough, she found a cup....turned on the faucet....grabbed the cup...held it under the faucet...watched it fill with water....pulled the cup out from the faucet...drank from the cup...placed the cup on the counter...and turned off the faucet.

And then did it again!

She has done this maybe twice....ever.

I love seeing her be independent in areas where she can be independent. I love how the times she is being independent is often times when we are not right on her, but giving her space to explore (times like these are hard as you never know if she will just swipe everything in sight). I love how she overcame her apraxia to put all these steps together.

Something so simple to most, is extremely challenging to some.


Here are two quotes for today...

The things you take for granted someone else is praying for - Author Unknown

Any child who is self-sufficient, who can tie his shoes, dress or undress himself, reflects in his joy and sense of achievement the image of human dignity, which is derived from a sense of independence - Maria Montessori







Friday, October 26, 2012

Good grades

Today's gift is good grades.

Who doesn't like it when their children get good grades in school?  I love seeing how proud my kids are of themselves by their expression on their faces.

I especially love it when my daughter with special needs comes home with good grades....actually great  grades!  I don't think you have any idea how this makes me feel.

Seeing her succeed in school with her school work just proves she can do anything she puts her mind to and works hard to achieve.  I have no doubt in my mind....my daughter can do anything....if she wants to....and if she puts her mind to it.

When I opened her folder this afternoon and saw her Social Studies test staring me in the face....with a  13/13 A+.......I couldn't help but smile from ear to ear.   And then I hugged my daughter and told her HOW proud of her I was!

I will never give up believing in her....and this test just validates why I should and always....will believe!

Here are two quotes for today....

A good teacher is like a candle, it consumes itself, to light the way for others- Author Unknown

The art of teaching is the art of assisting discovery- Author Unknown

Thursday, October 25, 2012

Being in a great mood

Today's gift is being in a GREAT mood!

It is getting close to the end of the week and I know my daughter is getting more and more tired as the week goes on.  And just like us, she loves the weekends....to relax!

Thursdays are a therapy day for her and honestly her mood depends on how the session is going to go. Every Tuesday and Thursday mornings I pray she is in a good mood so we have a great therapy session.  The last two weeks she has been off a little.

However, today she was not only in a good mood, but a GREAT mood!  From the moment she walked into our room at 5:45am till I dropped her off at school at 9:55....giggles and grins!

One of the hardest parts for her in the morning on therapy days is not leaving to go to school when my husband leaves to take my other daughter, instead she has to wait another hour before it is time for us to leave.  This hour to her feels like an eternity....and sometimes it does for me too!  She loves school and wants to go so badly when they leave in the morning.

This morning we played a little connect 4 and reviewed her homework on Native Americans...which she rocked by the way!  I always try to keep things calm and play with her...as I don't want to rock the boat!

When it was time to leave she hopped in the car, pointed to the radio for me to put on her music....Jack Johnson...and we dropped her brother off at a friend's house so he could ride with them to school.

All the way to therapy....which luckily is only a 2 minute drive....I honestly could walk IF the road wasn't so curvy..she was laughing and saying my name over and over and over again.  This is a good sign she is HAPPY!   When we walked into the therapy center she walked into the treatment room like she owned the place looking for her therapist.  I thought we were going to have a minute or two of not being happy as another child was on the treadmill and this is how she normally starts warming up.  The look she had on her face said it all!

Luckily, she didn't mind starting off differently.  Change to my daughter sometimes can be a bad thing as she thrives on following a routine!

Therapy today pushed my daughter to get into positions she normally does not like as it is making her work and stretch her muscles....which of course causes some discomfort.  You never know if she is going to take it and be a trooper OR go into a behavior as she is not happy.  Today, she was a trooper!  Although, there were two times her therapist's hair did get pulled....more as a warning sign from my daughter as to not cross the line of pushing!  At these points I had to break out my silly hat and perform tricks to keep the mood happy!!!

Worked like a charm!  I promised my daughter a special treat if she worked hard today after therapy.  Just like we treat ourselves to "something" after we stick to something hard whether it be working out for x number of days consecutively or losing x number of pounds....we need rewards.  Well, so does my daughter.

As promised, after an incredible therapy session in a GREAT mood, she was rewarded with 4 skittles....and yes....4 is all it took!  She has better willpower at times than I do...I could have had to have the whole little bag!

Her great mood continued all the way to school!  She loves rolling down her window and feeling the breeze on her face.  For years she has been able to push the button to roll her own window down, but could not pull the same button to close her window.  This summer, she figured it out and now she can roll her window up and down....and up and down....and up and down....

It becomes a game, one I hope isn't going to cost me a new window one day!  Thank goodness I can lock the window too!

Seeing the smile on her face as the fall breeze blew on her and hearing her say "Mommy" over and over again as I drove her to school, put me in a GREAT mood!  I have to say she started my day off right....thanks Pookie!  And ended it still smiling!

Here are some quotes for today...

The neat thing is that you are always in charge of your mood, so pick a good one- Unknown Author

It's amazing how one song can change your mood, thoughts and emotions- Unknown Author

You can never change the past nor control the future, but you can change the mood of the present day by touching someone's heart- Unknown Author


Wednesday, October 24, 2012

Taking care of myself

Today's gift is taking care of myself.

Isn't true how we put our kids before ourselves? All the time.

Their yearly doctor and dentist appointments are made before mine. Their haircuts are scheduled before mine. They have the next seasons clothes bought from the store before I can even rearrange my closet.

I make sure everything is done for them....and if and when there is extra time I fit things in for myself. Don't get me wrong....I do go to my yearly check ups and I do get my haircut....but it is always well after I should have gone.

As my daughter starts getting taller and slowly inching her way to closing the gap between our heights, I realized I needed to pay more attention to taking care of myself...physically. I have always been active...whether playing sports growing up or going to the gym, it has always been in my blood. However, it wasn't until she started getting "bigger" in which I realized I needed to be stronger.

I would love to be able to workout every day....but let's be honest...it isn't going to happen. A good week for me would be getting to exercise three days a week. In these three days, two will be days I am running for cardio as I start training for a half marathon...and very soon, two days of running will turn into three. I strength train once a week to help me be able to care for my daughter. She is now more than half my weight, so I need to be really careful when I lift her. The last thing we need is something happening to me.

The above workout schedule often....well, falls apart because... life happens. I have to try to stick to it as much as I can....especially for the next 16 weeks until my half marathon. However, if I didn't have a schedule for my exercise to stick to...or look at...the excuses would be much easier to give in to.

There will be many days where I am going to want to throw in the towel and take the "day off", but I can not. There is a little girl who is counting on me to be there for her...emotionally and physically. There will be days and weeks where I will be pulled in three different directions by three different kids leaving only a window of time to myself, but I have to not waste this "window" and exercise if only for 20 minutes. These are the days when I want to take a pass....but can not.

Today for instance was a crazy day....one where I really wanted to take a pass to allow me to have some "down" time, but instead I pushed along. Woke up at 5:45...and by 6:00 all three kids were also awake. By 7:15 my husband and daughters were out the door. I then had one hour and fifteen minutes to eat my breakfast, clean up the house a little, get my son and I dressed and out the door to grab a friend we drive to preschool. Drop them off, then drive to my strength training class. An hour later I'm driving home to have a snack, take a shower, make dinner, head out the door to get my son from school, immediately drive to the girls school to get them, come home, get them a snack and homework started before I have to leave for a doctor's appointment. My appointment was at 3, seen at 3:30, and walked out the door of the office at 4:20. Came home went over my daughters homework, fed them dinner early as my son had Tae Kwon Do tonight (big night!), get him dressed, leave for his class and then didn't walk back in the door tonight until 8:45! Thankfully I had help between my mother-in-law and parents so I didn't have to take all my children with me to the doctor and to my son's class.

In this crazy day, where I felt like I didn't stop...I took care of myself twice...exercise class and a doctor's appointment. When I wanted to not exercise to have an extra hour to myself today, I didn't, I pushed along knowing I had to do this not only for my daughter, but also myself. My daughter has taught me I must take care of myself. And taking care of me actually makes me feel so much better. After all, we do know exercise is great for releasing stress, as well as, all the other health benefits. It truly needs to be a priority in everyone's life.

I am sure there are many days when my daughter wants to throw in the towel and say...no more doctors, no more physical therapy, no more pushing me. But she doesn't, she keeps pushing forward. When my daughter was diagnosed with Rett Syndrome, I promised her I would not give up on her. In order to care for her, I need to be there for her emotional and physically and if I start being slack then I am only going back on my word to her.

More importantly, if I want to be here for her and my other two children I need to take care of myself...one day at a time.

Here are some quotes for today...

Those who think they don't have not time for bodily exercise will sooner or later have to find time for illness - Edward Stanley

It is exercise alone that supports the spirits and keeps the mind vigor - Marcus Tullius Cicero

To keep the body in good health is a duty...otherwise we shall not be able to keep our mind strong and clear- Buddha

Tuesday, October 23, 2012

Introducing me to friends

Today's gift is introducing me to friends.

Friends I probably would never have met if it wasn't for our common connection of being a mother to a child with special needs.

Or if our paths did ever cross and one of us didn't have a child with special needs, the level of our friendship would be different.

Due to my daughter having special needs, I have met some pretty amazing women in my life.  Women who are also trying to balance it all, while taking care of their child (or children) with special needs.  Women who "get me" and I don't have to explain myself.  Families who "get us".  Siblings who just "get it" and no words needs to be exchanged.

Tonight, my middle daughter and I went to our special group together.  Five moms and five siblings (ages 8-10) get together once a month.  The siblings sit at one table and the moms at another....close enough we can still keep half an eye on them!  Last year, our children participated in a 6 week class where they opened up to one another about having a sibling with special needs...in this case....they all had sisters!  Not only were they all girls who had special needs...but five different kinds of special needs....Mitochondrial Disease, Goldenhar Syndrome, Angelman's Syndrome, Down Syndrome and of course Rett Syndrome.

We both love our time with this group.  My middle daughter can be herself and ask questions to friends who will understand her.  I can be my self and talk about issues, only these women would understand.  It is a time where....once....I don't have to explain myself or where I am coming from....for they too know how I feel.

I don't know what I would do without women like these special ladies in my life.  I am so lucky to have a support group here where I live, but also have women all over the world who I could call upon if needed....with no questions asked.  These friendships I have made over the years are truly priceless.

You explain your journey with your daughter to them, they share their journey with you....and you instantly connect....and go from there.  It really is....this simple.   It is amazing how you feel like you have been friends for years....and many times it is only months.

They make me feel relaxed, they make me laugh, they make me cry....though the laughing is my favorite!

My daughter with Rett Syndrome has introduced me to many of the amazing friends who are in my life....I guess she knew I would need them by my side.

Here are some quotes for today...

I may not have gone where I intended to go, but I think I've ended up where I needed to be- Douglas Adams

Walk with the dreamers, the believers, the courageous, the cheerful, the planners, the doers, the successful people with their heads in the clouds and their feet on the ground- Wilferd Peterson

Friendship isn't about whom you have known the longest....It's about who came, and never left your side....-Author Unknown







Monday, October 22, 2012

Helping others learn about my daughter

Today's gift is helping others learn about my daughter.

If it wasn't for my daughter with special needs I would not be able to teach others about her or about others like her.  I'm not going to lie...I wish I did not know as much as I do about special needs.  But I do.

My daughter has taught me it does not matter if you are verbal or nonverbal, we all can learn.  It may mean you have to adapt the curriculum differently, but children with special needs can learn.  And they love to learn new things.  They want to be included just like their peers.

Just like you may have to adapt the curriculum for them, you may have to adapt many things in their life for them to be able to participate like their peers. Sports, art, acting, music, you name it, they can do it.   It just requires you to be creative and help them succeed.

Children with special needs teach us how to use our creativity to help them.  Seeing a child with special needs succeed is both rewarding to the child and to the teacher.  And seeing their peers light up is an extra bonus!

Tonight, I had the privilege of talking to a group of teachers who work in the children's ministry in our church about my daughter and children with special needs. They had a list of impressive questions they wanted me to answer....luckily I had them before our meeting!

I started off with a game...of reality and perspective. I adapted this idea from two amazing mothers whose daughters also have Rett Syndrome. I wanted them to share some information with me about themselves. I asked them a question letting them answer as they would normally communicate. Then for the next question, I took away their ability to use their voice. Then I took their ability to use their hands away. On the last question, the only way they could communicate with me was by using their eyes.

While my daughter can use her hands and sometimes her voice there are many children who can not. I wanted them to feel for a little while what it may be like to have these freedoms taken away from them. I wanted them to realize the frustrations they faced in answering the questions and to understand how many children face these frustrations....daily.

They know what they want to say, but do not know how to communicate their thoughts, wishes, and feelings.

The meeting was more informational...me sharing my daughter with them and talking about children with special needs and how to include them within the children's ministry. This isn't going to happen overnight, but having this talk and knowing how accepting of our family and future families they were was heartwarming to see.

The more I talk about my daughter and spread awareness the more comfortable I am talking to groups...funny how this happens. Tonight, was probably one of the times I felt the most relaxed and comfortable talking to a group.  And I do not think this was by accident.

Church is a great place to teach others about special differences as God made us all and he did so for a reason.

Here are some quotes for today....

God doesn't give you the people you want, he gives you the people you need. To help you, to hurt you, to leave you, to love you and to make you the person you were meant to be - Author Unknown

We don't meet people by accident. They are meant to cross our path for a reason- Author Unknown

God has a reason for allowing things to happen. We may never understand His wisdom, but we simply have to trust His will- Psalm 37:5



Sunday, October 21, 2012

Having a favorite.....book

Today's gift is having a favorite book.

Every night we read to my daughter and let her pick what book she wants us to read to her.  We give her a choice of 3-4 books and she picks the one she wants.  Nine out of 10 times she will pick the same book.

I love how she can tell us what her favorite book is.  I love how she wants us to read it over and over again to her.  I especially love how I truly enjoy this book and don't get tired of reading it over and over again.

Her favorite book is Ferdinand.

I can't help but think my daughter likes to compare herself to Ferdinand.  She is at peace and content with herself as he is.  While she wishes she did not have Rett Syndrome, she is happy with who she is as a person....with Rett Syndrome.  She doesn't live her life comparing herself to anyone or impressing anyone, but lives it for herself.

I love reading Ferdinand to her.  I love sharing this time with her at night.

Tonight as we climbed into bed to read, I gave her a choice of three books....and once again Ferdinand was the selection for the evening.  It is also interesting to me to see how on the nights I read her this story, she often drifts off to dreamland much faster.

I think it is safe to assume she not only loves hearing this story, but this story comforts her.

Ferdinand has been a classic for years and it still is.  In a world which can be mean and ugly or petty and foolish, Ferdinand is true to himself and goes on living his life the way he wants to.  Just like the world my daughter lives in....when times can be mean and ugly or petty and foolish...she remains true to herself....and this makes her happy.

Here are some quotes for this today...

You're never too old, too wacky, too wild, to pick up a book and read to a child- Dr. Seuss

If you want your children to be intelligent, read them fairy tales- Einstein

There is more treasure in books than in all the pirates' loot on the Treasure Island- Walt Disney




Saturday, October 20, 2012

Acceptance

Today's gift is acceptance.

Have you been someplace and felt like you are being judged? Have you ever been part of a group and felt you had to keep up with everyone just to "fit in"?

Before we had children and before our daughter was diagnosed with Rett Syndrome we pretty much "fit in" with any social circle we socialized with. We were "accepted" no matter where we went....no stares, no looks, no judging.

Life was easy before "D" day....diagnosis day. We could go pretty much anywhere with or without our two children (this was before my son was born) and our friends could watch our children...at this point our daughters were both "typical".

We didn't have to worry about anything which would keep us from being able to do the things we wanted as a family....going out to dinner, going to an amusement park, going on a vacation via an airplane....even going to church.

However, once something in your life changes....something "visible" to everyone....everything changes.

You see changes in the way strangers look at you and may even talk about you....in front of you. Many of the social circles you used to run in will start to get smaller as many people don't want to deal with your new situation, so ignoring it is easier than "accepting" it. People who you "thought" were your close friends, are no longer close friends....or your friend at all.

This was certainly a learning experience for us....not only with learning what Rett syndrome was, but learning how our life was going to change on all levels.  And places were we could feel comfortable and accepted was a challenge for us.

As you know from my past posts....all I have mentioned above is of the past.  Our life now is wonderful...except Rett Syndrome is still a part of it.  But even with Rett, we are very blessed.  However, for this post,  I had to bring you back to the days before Rett Syndrome entered our lives.

One place which was a challenge for us to find where we could feel both comfortable and accepted was at church.  After our daughter's diagnosis we were going to a church which had a program for families with children who had special needs....like us...but there was something missing.  Something didn't feel comfortable to us.  Or maybe it was not the right time for us.

So we stopped going...and kept putting "finding" a new church on the never-ending "to do" list.  It remained on the list for FOUR years....until we realized we had to make it a priority....we realized not going to church was a huge void in our life....we realized we needed a relationship with God.

This past spring we started going to a new church.  A church which has brought HOPE into our lives.  A church where we feel both comfortable and accepted.

Last month I was asked by the church to share my story with them for an upcoming video they were filming for their 15th anniversary celebration.  I was both honored and scared.  Scared....because we know how I feel about public speaking...right!  Honored...they chose me and felt our story was worth sharing with the church.

Today was our church's big "15th" celebration!  Today they shared the video for the first time to the church.  Today people heard our story and how we felt comfortable and accepted in our first couple of visits to the church.  This level of comfort and acceptance hasn't changed.  

We were accepted with our challenges....and with our challenges we felt comfortable in our new church.  This is not a place we have to pretend.  This is not a place we have to hide our fears.  This is a place we can just be us.  This is a place where we have found HOPE by being accepted....exactly as we are.

Here are some quotes for today....

There is so much grace in acceptance.  It's not an easy concept, but if you embrace it, you'll find more peace than you ever imagined - Loretta LaRoche

Accept what you can not change, and change what you can not accept- Author Unknown

Happiness can only exist in acceptance- George Orwell

***If you receive the gift daily by email make sure you look at yesterday's gift too.  It was not emailed to you last night as you can see I have a new look to my blog.  Just want you to be caught up!!!  Thank you!***




Friday, October 19, 2012

The Little Things #3

Today's gift is the little things...#3.

I love when I see my daughter do something appropriate....sweet....and spontaneous. All three individually are special, but when she does them all at the same time, in the same moment...this is just spectacular!

This evening we were walking outside to get the mail and while we were in the yard, we saw my husband...aka Daddy...coming down the street. He was home earlier than normal and this was a pleasant surprise. My daughter must have enjoyed his earlier arrival too, as she walked right over to his car.

She just stood against his door, making it so he could not get out. Instead she pressed her face against his car window, pursing her lips as to kiss her daddy through the window! She kept doing this over and over again.

This was one of the sweetest moments I have witnessed in a long time. I wish I had my camera or phone with me to snap a picture of the two of them kissing through the window. It always seems like when moments like these happen, I never have my camera!

I think she was happy Daddy was home, what do you think?

Here are two quotes for today....

Everyone is trying to accomplish something big, not realizing that life is made up of little things- Frank Howard Clark

Never get tired of doing little things for others, sometimes those little things occupy the biggest part of their heart- Unknown Author

 

Thursday, October 18, 2012

Acting Silly

Today's gift is acting silly.

Children bring out the best in us, don't they?  How many times have you found yourself doing something ridiculous and you start laughing at yourself, because you can't believe your child has brought you to this level of craziness.

I feel like this weekly, if not daily.

Kids love being silly.  They don't care what other people think as this is the time they are exploring who they are and their environment.  It doesn't matter if they are typically or not typically developing children....they all act silly in their own ways.  And they want us to act silly with them.

They don't care what you sound, act or look like when you are being silly.  All they care about is laughing.  However, I think we start to step out of our comfort zones sometimes when we are put up to the test of acting silly for our children....especially out in public.  How far are you willing to take your circus act?

Thanks to my daughter with special needs, I have been forced to overcome my fear of acting silly in public.  She is honestly the one person who has forced me to overcome this fear.

I hate talking in public.  I start to get all hot and sweaty....just writing about it makes me nervous.  If you know me, you would probably never believe I do not like public speaking....as I am a chatterbox (really...my 6th grade computer teacher told my parents, I would talk to the computer if it would talk back to me!).  However, speaking for my daughter has helped me overcome this fear (even though I still hate it a little bit).

What helps me the most in getting over this fear is acting silly for my daughter, when she is placed in situations which causes her anxiety or when I need her to do something for me when we are out in public and me acting silly is the only way it is going to get done.

Just like yesterday, we had another doctor's appointment today.  Nothing like getting them all out of the way in the same week!  My daughter doesn't mind going to the doctor, but it is all the vitals they have to take she doesn't care for too much.  Most people go to the doctor and step on the scale...no big deal, right.  But what about the child who has stability issues and doesn't like being off balance......when she goes to step on the scale it is moving under her constantly as she is shaking....which usually leads to an "estimated" weight.  Or the blood pressure cuff....the feeling of something tightening around her arm is making her more anxious, which results in the inability to get her blood pressure.

Luckily, some doctor's offices (like the one we went to yesterday) have a scale, where you sit in a chair.  Whoever designed this is brilliant and receives an A+ from me!  This makes getting my daughter's weight so much easier...for all of us.  I always put her weight and height in my phone with the date for future doctor appointments.

Unfortunately, no one has invented the "perfect" blood pressure cuff (hint hint) or the offices we frequent have not seen them if they exist, so this is where I have to break out my "silly hat".  My daughter does not like having her blood pressure taken...at...all.

She starts wringing her hands faster and faster as she watches them come closer and closer to her with the machine.  When trying to grab her hands apart you feel like you are going to break her hands as they feel like they are suctioned to each other.  And they are super sweaty.  Once you have them apart, you have to hold them down in her lap AND keep her still.  This is not easy.  However, this is easier if there are two people....and luckily today my mom...aka Mimi, was with me.

Mimi has one hand, I have the other and I start breaking out in the song my daughter has requested....Rudolph the Red Nosed Reindeer.  As I belt out this song to help keep her calm, I can feel my face getting red like Rudolph's nose.  But she is smiling and we are getting her blood pressure...all is good.  As soon as we hear the machine beep, I know my signal has gone off to stop embarrassing myself.  The nurse today actually told me good job and I stopped singing too soon (as I didn't finish the song)...trust me, she didn't want to keep hearing this mess.  Only a select few are privileged enough to hear me sing....and you have to work in a doctor's office or lab!

This is just one example of where I have to act silly for my daughter and where she has helped me realize it is ok to act silly.  I will do whatever it takes to help her feel comfortable....even if it means I have to embarrass myself.  What we do for our children!

Here are some quotes for today....

There is a certain happiness in being silly and ridiculous- Author Unknown

Be silly.  Be honest.  Be kind.- Ralph Waldo Emerson

Silliness makes your soul smile- Doe Zantama


Wednesday, October 17, 2012

Perseverance

Today's gift is perseverance.

Every day my daughter is very persistent in her actions.  She pushes along daily in everything she does despite the difficulty or the obstacles she faces to prove herself.  I admire her determination and will.

I have mentioned in past posts how regaining her strength to walk again had been a challenge for her over the summer.....actually since December.   In March we started physical therapy at a new location and by May she was walking again....and now running!  Everyone who sees her is amazed!

She has not seen her orthopedist in six months and today was our check up.  The last time he saw her, she was walking hunched over and was walking with assistance.   He told us in April...it will take time.  Time...I thought....what time.  She had surgery in September, shouldn't she be walking now????

I never thought her recovery would be as long as it had been.

Throughout my complaining for not having "my" daughter back to the way she "was" before surgery.........you know who never complained.....not once........my daughter.

It was today at the doctor's office when the nurse lit up when she saw my daughter walking down the hall....all....by....herself....when my light bulb went off!  They asked me, who the "magical" physical therapist was....and at this moment, I realized it was my daughter!

Yes, it was also her PT team for not only believing in her, but pushing her.  However, if she didn't perform and continue to perform outside of physical therapy, we would not be where we are today.   She was persistent....she wanted to walk again...she wanted to run again....nothing was going to get in her way.   She was stubborn and had every right to be!

I wanted "my" daughter back, not really realizing all the hard work to get her back to where she needed to be, was work she had to do....not me.  I was not the one in physical therapy twice a week being stretched beyond my comfort level.  I was not the one learning to walk again, let alone with a brace on.  I was not the one who was fatiguing easier as I was working double time.  I was not doing anything other than driving her to therapy and being her cheerleader.

She.  Did.  Everything.

And just like the doctor said....it will take time.  It did, but also thanks to her perseverance.

Here are some quotes for today...

Permanence, perseverance, and persistence in spite of all obstacles, discouragements, and impossibilities: It is this, that in all things distinguishes the strong soul from the weak - Thomas Carlyle

Great works are performed not by strength, but by perseverance- Samuel Johnson

Perseverance is failing 19 times and succeeding the 20th- Julie Andrews

Never, never, never give up- Winston Churchill






Tuesday, October 16, 2012

Outsmarting me

Today's gift is outsmarting me.

You know the tv show, Are You Smarter Than A Fifth Grader ? Well, if I was ever a contestant on this show, let's just say I would not last long! I'm not going to lie, I was the type of student who would study for a test and as soon as the test was over, I would forget the information. So it is fun "learning" everything again with my kids, LOL!

This afternoon I was going over homework with my daughter who has Rett Syndrome. She has multiple study guides to review before she has to take her tests on the material. One of the units we were reviewing this afternoon was the Water Cycle.

I was going over the Water Cycle with her and asking her questions, one being "what is the first part of the water cycle"? I gave her three choices to answer with....condensation, evaporation, and precipitation. She kept pointing to evaporation. And I kept asking her, if she was sure.....to which she kept pointing to evaporation. Thinking she was incorrect, I looked down at my notes....as it has been a long time since I even thought about the water cycle...to find she was absolutely correct! I was outsmarted by my 4th grader!

When I told her how proud I was of her for sticking with her answer and proving me wrong, she had a smirk on her face. She blew me away! She never stops amazing me.

Next time I go to review her homework with her, I think I will review the materials first to know what I am talking about! This gift is proof to never underestimate the knowledge of your children, verbal or nonverbal.

Here are two quotes for today...

Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence- Helen Keller

I cannot emphasize enough the importance of a good teacher- Temple Grandin

 

Monday, October 15, 2012

Her expressions

Today's gift are her expressions.

I love the different looks my daughter gives me. They show me whether she likes something, if she doesn't like something, if she is happy, if she is mad, if she is unsure, if she is scared...they show me she is reacting to a situation.

Usually the expression she gives to me is an appropriate reaction to something she experienced. I can find out a lot about her expression to me. This is very helpful in finding out what things she does not like or care for.  Equally as important is for me to know what she enjoys, however, these things are usually easier for me to figure out.

I love watching her expressions, as I know she is understanding what she is experiencing. Her expressions many times, if not all the times are the same as not only her siblings, but her typical peers. Seeing these expressions in person as they are happening is wonderful, but catching them with the camera is a way for me to always have these images to look at.

This morning I was looking at the pictures we took yesterday while we were picking apples and I captured one of these priceless expressions. I was clicking away when she was picking her first apple ever. Two pictures I took back to back show so many emotions through her expressions. The first one shows she is a little unsure as what to expect as she has never done this before. She loves apples, or "a-po" as she calls them, so she knew what she was looking at and about to grab. Then the second picture shows her with the look of surprise on her face, as she pulled the apple from the tree. I caught it! And I love looking at it over and over again. She was so happy and proud of herself! But to me the expression on her face was appropriate for her in experiencing this for the first time. This makes me happy and proud too!

As you know my daily gifts have to be a gift she has given me daily, the day I am writing the post. So while she didn't give me the expression above today, I still wanted to share it with you as it is too perfect! However, there is another expression I did get today from her as well.

The expression of "are you kidding me"! Tonight when we were having dinner, she kept telling me, "cup" as she wanted to keep drinking the yummy apple cider we bought yesterday (I don't blame her, it's delicious!). After she drank the whole cup, she indicated she wanted more. I told her she drank it all and there was nothing left. Obviously, she didn't believe me, as she grabbed the cup from my hand, looked inside, and then handed me the cup back...with a look on her face, to express the words, "are you kidding me?". I had to laugh, as she thought I was holding back on her, when in fact she had nothing in her cup. Of course, I got her something else to drink after she finished eating her dinner. If I let her drink a lot, then she will not eat all her food....so I wanted her to finish eating.

Her facial expressions many times tell the story her voice can not. Even though my daughter can not communicate with me verbally, I can still feel her emotions.

Here are two quotes for today....

The face is a picture of the mind with the eyes as its interpreter - Marcus Tullius Cicero

If you have good thoughts they will shine out of your face like sunbeams, and you will always look lovely- Roald Dahl







Sunday, October 14, 2012

Picking Apples

Today's gift is picking apples.

This weekend we had perfect fall weather.  And the fall happens to be my favorite time of year.  Apples...apple pie...anything pumpkin...sweater weather....pumpkin patch....leaves changing colors...making s'mores....even a little football....I just love this time of year.

Every year we go apple picking and to pick our pumpkins.  We have a favorite place we visit every year and it happens to be a favorite for probably the rest of the state!  It is always crazy crowded!  The views are amazing and they have the best apple donuts, which are always a special treat at the end of the day.

Apple picking to us in the past has been, "picking" from the already picked apples in the big barrels as the terrain to go and "pick" the actual apples isn't the best conditions for my daughter with special needs.   And going to pick your pumpkin always involves the famous hayride...which could be a good or bad thing for us....but we always do it.

This year I searched to see if there was another place similar to the one we usually go to and I found one about 15 miles further down the road....and they happen to be owned by the same people....so I was praying the apple donuts would be at this location too!

The drive to the apple orchard is half the fun.  Driving up and down the hills on the back country roads looking at the trees which are starting to turn different shades of orange, yellow and red, with the perfect blue sky...just starts the day of perfectly!   When pulled up to the orchid, I knew this was going to be the perfect place for our family in many ways.

First and foremost, there were maybe 40 cars there....tops....compared to at least 200 at our old location.  This is so good on many fronts for my daughter!  Second, every place we walked was flat!  This means  we did not have to worry about her tripping or falling and we could let her roam!!!!  Third, it was spread out...apple picking was on one side of the road and then you cross the street...no hayrides...with your red wagon to the other side to pick your pumpkin!  And last but not least....they had APPLE DONUTS!!!!

We decided to go apple picking first, so we grabbed our bags and headed down to pick away!  When we started down the row where we would begin picking our apples, my kids started looking and grabbing immediately....all of them!  We had to remind them to have us look at the apples first, as any apple picked has to be bought....this is what they tell you and we want to follow all rules....although by looking at the ground, not many people follow the rules!

My children loved the whole aspect of picking apples today.  Finding them, making sure they were ok and pulling them off the tree!  Seeing my daughter with special needs, be able to not only walk among the apple trees with us, but go up and look so intently at them was amazing.  We would inspect them together and then my husband would hold the branch still for her, while she....picked the apple off the tree!  I was snapping pictures the whole time as this was the FIRST time she has ever picked apples!!!! She loved it!  In fact she enjoyed it so much, we actually had a couple of apples we left on the ground too!  Oops!  Seeing her be able to be a part of the apple picking just like her brother and sister was truly a gift today!

After we picked apples, we headed across with street with our red wagon to find our pumpkin.  There was no long hayride and the kids didn't seem to care.  It was a nice walk to the pumpkin patch with nothing but mountains all around us.  My daughter and husband walked down one row looking for the perfect pumpkin while me and my other two little ones started down another row.  The pumpkins were not only huge, but also a different shape.  Instead of being round, they were taller.  And guess who found the perfect pumpkin for our family.....my daughter and husband!

As we drove home with our 11 pounds of apples, apple cider, half dozen of apple donuts and our 28 pound pumpkin.....it will be the memories of this perfect day I will always remember!  And to top it off, I think our family has found a new place which is just perfect for us!

Here are some quotes for today...

Never lose an opportunity of seeing anything beautiful, for beauty is God's handwriting- Ralph Waldo Emerson

What really matters in life, is rarely on my daily "to do" list- S. Graves

Things have a way of working out- Author Unknown





Saturday, October 13, 2012

Her Lap

Today's gift is her lap.

I am sure you can not count all the times your child has laid their head in your lap as it has happened so many times. My children love to lay their head in my lap and for me to rub their head, just as much as they love for me to rub their back....I think they inherited this from me!

But can you count how many times you laid your head in your child's lap? I can. Once. Today I shared this special gift with my daughter who has special needs.

This afternoon, after playing outside on this beautiful fall day, we came inside to relax. I was kind of sleepy, so I laid my head in my daughter's lap. As I was lying there, I was thinking to myself...this could go two ways. She could either start pulling my hair, which would be a little uncomfortable as she has a strong grip.....or.....she would actually rub my hair.

Well, it started out as a light tug, but turned into an actual rub. I don't know what I was more surprised about....the fact she was rubbing my head or the fact she let me keep my head on her lap for 20 minutes! Both took me by surprise and I was enjoying every single second of it!

I love when my daughter surprises me in the littlest ways, but the impact they leave on my heart is huge!

Here are two quotes for today,

Children are great imitators. So give them something great to imitate- Author Unknown

The soul is healed by being with children - English Proverb

 

Friday, October 12, 2012

Cuddle Time

Today's gift is cuddle time.

It is no secret (and I think I have mentioned in past posts) I love my sleep.  When a woman is pregnant and is nearing the last trimester sleeping becomes an issue for many....well at least it did for me.  I couldn't find a position which felt good with having a foot under my rib or my heartburn was keeping me awake or was it my stomach was just too big.  Whatever the reason, it was a wake up call to my body to get used to these sleepless nights as this will become my life as soon as my bundle of joy was born.

Little did I know then, my little bundle of joy, now at 11 years old would still be waking up at an early hour.  I have to note here....where she is now with her sleep and where she used to be are worlds apart.  Here is a clip from my other blog about her old sleeping habits...."It would take her HOURS to go to bed and many nights we would have to drive her around for over an hour to get her to fall asleep in the car.  And then PRAY that when you transitioned her from the car to bed, she did not wake up!" Thankfully we no longer deal with nights like these.  Today she loves being read to before bed, falling asleep listening to a story....but she still loves to get up early...just like her dad and her siblings.  No alarm clock is needed in this house...we have at least three of them...each coming in within 10 minutes of each other.  The first one is  to come in is our alarm going off and then next two are our snooze buttons!

When my kids come in early in the morning I am ok with it....as long as they are quiet....and stay still.  This morning when my daughter came she was starting to get a little wild, but then calmed down.  I was not at the operating stage yet....so I got close to her and she did what I love the most.  When we put her to bed, she will through her leg on top of yours, as if to say...you are not going anywhere....try to escape after I fall asleep....and yes sometimes it is tricky.  So as soon as I cuddled up next to her, she through her leg on mine...which is a sign she wants to cuddle too.  And then she tilted her head to mine.

It was ten minutes of pure peace...no handwringing...just cuddles.  No words needed to be exchanged.

Here are some quotes for today....

No one will ever know the strength of my love for you.  After all, you are the only one who knows what my heart sounds like from the inside- Author Unknown

I know a girl, she puts the COLOR inside of my world -John Mayer




Thursday, October 11, 2012

Being Content

Today's gift is being content.

There is no one in my life who can truly teach me the meaning of being content like my daughter with special needs.  While I know there are many things she wishes she had like her siblings and peers, I also know she is content within her own body.

Every day she wakes up and still has Rett Syndrome, but she doesn't let this hold her back from conquering the day.  She has become comfortable within her own skin.  She knows until the researchers find a treatment or a cure for Rett Syndrome, she has to beat it herself....with one skill, one word, one step at a time.

When I am having a bad day or wishing for something more,  I just think about my daughter or look at a picture of her.  While she would love to be like a typical 11 year old,  she is very lucky to be able to do as much as she can for a girl who lives with Rett Syndrome.

She has so much to be thankful for...she does not have seizures, she does not have a feeding tube, she does not have scoliosis, she does not have breathing issues.

Her biggest strengths are her mobility and functional hand use, while her biggest weakness is her communication, which sometimes leads to frustrations (behaviors).  Yes she does have words she can communicate, but she does not have conversational speech where she can tell me what is bothering her or what she really wants to tell me.  If there is something she can not communicate to me either with her voice or iPad, she gets extremely frustrated and it will lead to a behavior.

My daughter is content with herself... it is almost like she has found peace within, which she shares with others.  My daughter is very confident with who she is, what she is doing and where she is going.  She does not have to explain herself to anyone.  While, I know she is probably not happy she has Rett Syndrome, she still approves of herself, all she has accomplished and all the opportunities yet to come.

Her inner peace has helped me reach out to others and talk about her journey with special needs.  Seeing her content and at peace, has made me become more content with myself.

Here are some quotes for today....

Be happy with what you have and are, be generous with both, and you won't have to hunt for happiness- William E. Gladstone

Happiness consists not in having much, but being content with little- Marguerite Gardiner

Contentment is not possessing everything but giving thanks for everything you possess- Author Unknown




Wednesday, October 10, 2012

Reading....together

Today's gift is reading...together.

I love to read.  I love to read to my children.  I love when my children are learning to read and they read to me.  

When my daughter was diagnosed with Rett Syndrome learning to read was one of the dreams I thought would never come true.  She isn't able to communicate verbally, how is she possibly going to be able to read.

Well, like many challenges my daughter faces....daily...learning to read is one she is overcoming!  I never thought she would be able to read....period.  Let alone read out loud to me!  

Last year she started a reading program called Edmark.  Her teacher....her one to one...her best friend....her true believer....knows she can do anything she puts her mind to.  The material may need to be altered to accommodate how she learns, but she will be given the same chance as any other child.  And just like any other child who is learning a new skill....some things come quickly to her and others take time to learn.

My daughter has always loved books...ever since she was a baby.  She loves to flip through the pages and not only look at the pictures, but point out what she sees....and if she can say the word for the picture, she will say it to me!  For years, we have been reading age appropriate chapter books to her every night.  I want her to experience some of my favorite childhood authors, like Roald Dahl,  and for her to enjoy books her peers are reading too.  One of her favorite activities to do for quiet time is to flip through her "pre-teen" magazines...and she loves pointing out Justin Bieber and Zayn from One Direction!  If she ever met them in person, I know she would be starstruck for sure!

Both of my other children have a passion for reading as well.  They enjoy reading to their sister and I love the moments when they do read to her.  Watching my 5 year old son, read a story to my 11 year old daughter doesn't seem right.  Shouldn't it be the other way around?  It should, but it isn't.   The beauty in seeing my son act like a big brother to his big sister, is heartwarming to see.   This is a gift by itself.

This afternoon after my daughter and I did her homework, we put on some light classical music for background noise and I asked her if we could read together.  She liked the idea and hopped up on the sofa.  She is able to read many words in the "my first" level reading books, like the Biscuit series.  We sat down and started to read.  When we came to a word I knew she could say, I would stop...point to the word...and she would say it.  While I was reading to her I also was pointing to each word as we were reading so she could follow along with me.  Just because she can not say some of the words in the story, I know without a doubt, she knows what the words say.  She has been working on reading many sight words in school for the past two years, so I know she is understanding what she is reading...on her own!

Our "reading together" experience is not your typical learning to read experience like I have shared with my other two children.  However, I never thought I would be given this type of reading experience with my daughter with special needs.  The fact she isn't reading to me like a "typical" 11 year old girl doesn't bother me.  The fact she is reading is all I care about.  If it is one sight word at a time...I will take it.  I never thought this "typical" milestone would be reached and I am excited to see where her reading takes her!  In the meantime, we will enjoy reading....one book at a time!

Here are two quotes for today....

Being happy doesn't mean that everything is perfect.  It means that you've decided to look beyond the imperfections- Author Unknown

The more that you read, the more things you will know.  The more that you learn, the more places you will go- Dr. Seuss


Tuesday, October 9, 2012

Expressing your feelings

Today's gift is expressing your feelings.

When you are frustrated with someone or something what do you do? You talk out loud to yourself or someone getting some steam off your chest. When your sad, you cry and probably most of us talk to someone about our feelings. If your not feeling well and you need help from someone you are able to tell them what is wrong and what you need. And of course when you are happy, most of the world can see how you feel by the smile on your face or the joy in your voice.

To most of us, being able to express our feelings, comes easily...naturally....but to others, like my daughter, expressing feelings is anything but easy. It is extremely difficult.

This morning my daughter slept in and lucky for her she had physical therapy this morning, so she didn't have to get up as early as she normally does on a typical school morning. Our morning went smoothly eating breakfast, getting dressed and driving to therapy. However, as soon as we started her therapy session, she was just "off" a little, but was still doing what was asked of her. Her therapist could also sense she wasn't on her "A Game", so she did not push her and have her walk backwards on the treadmill like she normally does. Instead they went straight into stretching.

My daughter's body language speaks volumes. Once you get to know her, you will see she tries and does express so much from her body language....whether it is a certain giggle, a certain word being repeated over and over again or a look in her eye....they all mean something different. Since she can not express her feelings verbally like you and me, she has to have another way to express her feelings to us.

While her therapist was stretching her legs this morning, my daughter was really quiet....more so than she normally is during therapy. I just kept an "eye" on her as I watched her body language for signs she was going to show us the feeling "frustrated". Not 20 minutes later, my intuition was correct....she got "the look" and started to get upset.

The million dollar question....why? I wish I knew why she was getting upset. She was doing the same therapy she normally does, nothing new was being introduced. However, something this morning was making her upset.

We did not have her "work through it", instead we left and I had her calm down before returning her to school. I did not want her walking into school upset or starting her day off on the wrong foot.

The rest of her day at school went very well. And her afternoon at home was fine too. However, sometimes when her brother and sister get all wild or fired up, it can cause her to become the same. My middle daughter did not have trouble expressing her feelings today towards doing her homework...wow! I have no idea what got into her between school, her Girl Scout meeting and coming home...but at this moment her talking it out to herself was the best thing.

Of course, my daughter didn't like hearing her sister carry on, so she started her "happy" yelling...which I don't like any better than her "mad" yelling, except I know she will not be getting mad with this yell. Great...now I have two of my three kids carrying on! Thankfully my son was staying to himself and being good. And thankfully my middle daughter stopped carrying on about her homework and did it...beautifully I might add!

My daughter still does an amazing job of getting many of her feelings across to us. While I wish the harder ones would be easier for her to express, they are not. The feelings she has the hardest time expressing to us, truly breaks my heart and makes me feel helpless at times. But then she will do something like she did tonight before bed which makes me feel closer to her....and not helpless. Tonight we were all lying on our bed and my daughter wanted me to play "boo" with her. I look at her, close my eyes, and keep moving my face closer to hers slowly and at some point I say, "boo" and she jumps and laughs! We were in the "wind down" stage and I didn't want her to get all "wound" up, so I wasn't doing "boo" like she was requesting. Then she took her hand, placed it on my face, and moved my face towards her face, looked me in the eyes and said, "boo"! Like I could say no to this!

After not knowing what was making her feel upset this morning, there was no other way I wanted her to end her day, other than feeling happy!

Here are some quotes for today...

Feelings are much like waves, we can't stop them from coming but we can choose which one to surf - Jonatan Martennson

Of all the things you wear, your expression is most noticeable- Janet Lane

Never take anyone's feelings for granted because you never know how much courage they took to show their feelings to you and trusted you completely- Unknown

 

Monday, October 8, 2012

Letting me share one of my favorite childhood movies with her

Today's gift is letting me share one of my favorite childhood movies with her.

The kids had off from school today. Usually they are climbing the walls by 10:00, but today everyone was enjoying relaxing and cuddling under the blankets on the sofa. It must have been due to the weather change...it was really chilly today!

I recently went to Barnes and Noble to buy some movies I watched when I was my daughter's age. She received two gift certificates for her birthday last month and thought sharing a part of my childhood with her would be fun....after all she loves movies!

I walked in knowing which three movies I wanted to buy.. Girls Just Wanna Have Fun; Freaky Friday (the original one with Jodi Foster); and Parent Trap (the original one). They only had in the store Freaky Friday and Parent Trap....however, Freaky Friday, was not the original one, but the one with Lindsay Lohan and Jaime Lee Curtis. I loved the movie so much, I went ahead and got it...at least this was before Lindsay Lohan....well, became the Lindsay Lohan we all hear about today.

Even though I could have stayed curled up all day, I needed to run out today for some errands. I knew I could run to the store quickly, so I could surprise the kids with movie time this afternoon!

Movie time happened! And I was so excited to share a favorite childhood movie with all my children, but especially my oldest daughter. We watched Freaky Friday all curled up under blankets on the sofa and watched as a mother and daughter changed places. My daughter laughed appropriately throughout the movie, making this time together extra special.

During the movie, I couldn't help but think if my daughter and I changed places. What would she think about seeing herself through my eyes and vice versa? Would I be able to understand more of what frustrates her? Would I be able to help her more, when we changed back? I wonder if my daughter was having the same thoughts as me while she was watching the movie....

It is just a movie, but if I could trade places with her for one day to be able to understand her better, I would jump at the chance. But since this isn't going to happen I will continue to learn from her one day, one moment, and one laugh at a time.

Here are two quotes for today....

Childhood is the most beautiful of all life's seasons -Author Unknown

If you carry your childhood with you, you never become older- Tom Stoppard





Sunday, October 7, 2012

Her Hugs

Today's gift are her hugs.

My husband and I were away for one night as we went to the wedding of a dear childhood friend of mine yesterday. She was in our wedding 14 years ago....makes me feel real old!

While we love having time away from our kids to spend time with each other....as this is very important too....we certainly miss them and think of them often. I am sure while we are gone, they probably hardly miss us as they are having a great time with their grandparents or friends!

The best part of coming home and being away from your children is seeing them run to you when you open the door and to hear them say, "mommy....daddy...". Usually when we return from a trip this is how we are greeted. Today, it was different. First we had to pick our middle daughter up from her friend's house. As you can imagine, when she saw us she was not too thrilled as this meant her sleepover was coming to an end. However, much to our surprise she didn't put up a fuss when it was time to leave.

Then we drove home to see our other to munchkins and when we walked in the door, they both were engaged in a game with a grandparent. They just looked at us and kept going on! Maybe we weren't gone long enough for them to really miss us yet and they didn't want their "Mimi and Poppy" time to end.

However, after my parents left.....then they wanted to show us how much they missed us! My daughter came right over and sat down next to me on the sofa and gave me lots of hugs....and "mommy's". Her hugs are so genuine and soft. I love having her release her hands from wringing them so hard to put them around my neck to give me a hug....which is usually followed by a kiss, an extra bonus!

While my daughter can not tell me with her own words, "I missed you", she can show me with her actions. Her hugs and kisses along with our snuggle time this afternoon was a good sign she missed me...just a little!

Here are some quotes for today...

Where I live, if someone gives you a hug it's from the heart- Steve Irwin

Everybody needs a hug. It changes your metabolism - Leo Buscaglia

A hug is worth a thousand words- Unknown

Saturday, October 6, 2012

Her words

Today's gift are her words.

For most girls with Rett Syndrome, the freedom of speech has been taken away by the Rett Monster. While my daughter can not hold a conversation with you, she understands everything you are saying. And while she does not have conversational speech, she does have words she can say...actually over 70!

I pray daily we can have a conversation one day as there is so much I want to know from her. But until the day comes when we can have this conversation, I will take all the words I can get...even if it is one word at a time.

In the mornings when she walks in our room... this is usually the case around the fine hour of 5:00 AM, she hops up in our bed to watch tv while we try to get a couple of more minutes of shut eye before our second little visitor comes in....our son! Once I am awake....or shall I say, once my brain is awake and at the point to hold on a conversation, I love snuggling up to my daughter and saying "Good Morning" to her, to get a "guh mor ning " right back from her. Do you know how long it took my daughter and her special one on one teacher to get these words from her mouth? Months...close to 6.... But they never gave up on each other!

I love hearing her little voice. The innocence in each word. Something we take for granted every single day. I honestly can not begin to imagine what it would be like to not be able to communicate my needs, wants, and wishes.

My favorite word of course is Mommy, I'm not going to lie. However, every word or approximation she says I love. She is so proud of herself when she says a new word and we keep saying it to have her keep saying them as we do not want her to lose them. After all it was patience and repetition which has helped her acquire the vocabulary she currently owns. I used the word "own" here for two reasons....these words she does "own" as she worked extremely hard to learn how to say them.....and they are her "own" words....she said with her "own" voice.

Just like I love starting my day with a "guh mor ning", I love ending it with a "guh nigh"!

I have always loved the saying less is more, and when I think about my daughter's ability to communicate with me one or two words at a time, I see how true this saying is....for us, less is more....

However, I will never lose hope and I know one day we will have a conversation with lots of words!

 

Instead of a quote I want to share some of the words she uses on a daily basis...

Guh mor ning- good morning; Mommy; Daddy; B- for her sister; E-I, for her brother ; Ah-me; Mimi; Poppy; Ne- for Granny; me; cup; more; cracker; bee; hi; bye; puh me- for push me like when she is on the swings; ball; up; boo- loves playing hide and seek; kaboom; go; car; and guh nigh.

***I am sure there are more, but as I type this, these are the ones which come to mind immediately!***

 

 

Friday, October 5, 2012

Girl Power

Today's gift is girl power!

Early this morning I received an email from my middle daughter's teacher telling me my oldest daughter was on the morning announcements.  But it did not stop there!  Here is what she wrote to me....

"your daughter was on the announcements this morning for donating a basketball for the birthday fitness fund.  The whole class (now this is my middle daughter's class!) broke out in cheers and claps when they heard her name.  You should have seen your daughter's (my middle daughter) face beaming.  It was so sweet and showed such love." 

Talk about starting your day off right!  Wow!  I was so happy, I was actually crying....happy tears!

The year before my middle daughter started kindergarten we thought we were going to send her to private school.  We tested at two...she was accepted at both....we picked one....and then it was the day our deposit was due and we had to make the finally decision....private or public (our public school is really good, so this was a hard decision!).   We always asked our daughter what school she liked throughout the whole process and her decision NEVER changed....from day one....she always said she wanted to go to school with her sister.   Keep in mind at this time she was ONLY 5 years old!!!!

My husband and I went back and forth, as we wanted to be the "decision makers" for her, not her for us.  However, those nine words.....I...want...to...go...to...school...with...my...sister, were far more powerful than we ever realized.   As you can see, we chose public as they are in school together!  It honestly is one of the BEST decisions we have EVER made and one we have not looked back on AT ALL!

My daughter with Rett Syndrome has one of the biggest cheerleaders with her every day at school...her little sister.  At school she is known as my oldest daughter's little sister...not the other way around!  She does not hesitate to show her love for her sister in school....in front of her friends....she not only introduces her friends to her sister, but explains why she does things she does...both good and bad....when friends come over she explains everything which could happen to prepare them....but in a way they are comforted and not scared.  All of her friends are intrigued by her sister and want to know and learn....and it is all because of the size of my middle daughter's heart....sometimes I feel like she has an old soul living inside this little 8 year old body!

It is a team effort between my two daughters in how they embrace their school community to be so understanding and to help them realize my daughter really wants to be just like her peers, but she just has extra daily challenges.   I say it is a team effort of showing true GIRL POWER, as my daughter with special needs could not want to be as engaged with her peers or her sister...but it is the exact opposite....she LOVES the attention from all the kids.....and her little sister only shows love and she is an example to her peers.

For my middle daughter's WHOLE class of 24 students to cheer for her sister....I can only imagine what her face was like....beaming....and extremely proud!  When I picked the girls up from school their gym teacher came over to the car to tell me about morning announcements too....but added an interesting piece.  He asked my daughter to pick what piece of equipment she would like to give as her gift from the fitness birthday fund.  She pointed to the basketball....picked it up.... and started dribbling it!!!!!!!!!!!   No wonder my middle daughter's class was cheering!  Wow!  I emailed the school for a copy of the morning announcements as they always video tape them!

Everything happens for a reason, though we may never know what the reason is.  However, I see why we had to listen to those 9 words my middle daughter spoke countless times to us at the age of 5....she knew her sister needed her....and together they were going to spread GIRL POWER in more ways than one!

Here are some quotes for today....

We can do it, girls are strong- Unknown

I am only ONE, BUT I am one.  I cannot do everything, but I can do SOMETHING.  And I will not let  what I cannot do interfere with what I can do-  Edward Everette Hale

Anything is possible, if you've got enough nerve- J.K. Rowling

She believed she could, so she did- Unknown

Life does not have to be perfect to be wonderful- Annette Funicello

Every experience God gives us, every person He puts in our lives, is the perfect preparation for the future that only He can see- Corrie Ten Boom




Thursday, October 4, 2012

Dancing

Today's gift is dancing.

If you have been reading the gifts daily, you know my daughter loves music.  If you are new to this blog, I must tell you my daughter enjoys listening to music....a lot!  To read about my first music post click this link.... Her Love for Music #1 

I love it when listening to music with my children turns into an impromptu dance party.  There is something about dancing around the room, with the music turned up....you forget about everything on your mind and truly enjoy the moment.  Today, I shared one of these moments with my daughter!

I was listening to music on my computer while my son and I were eating our lunch this afternoon and when we ran out the door to pick up the girls from school I forgot to turn it off.  So of course, when we walked back in the door it was on.  My daughter with special needs, was looking all around the kitchen wondering where the music was coming from as I often do not listen to music on my computer while they are around....since I would not hear it anyway!

She loved looking at my computer and thought it was a huge iPad and started touching all the buttons thinking it would work just like her iPad does.  I had to tell her, while they were both apple products (she knows the icons look the same as on her device), this was a computer and it works differently.  I asked her if she liked the music and she said, "la"....which is her "yeah...for yes".  So I turned it up and she started swaying back and forth...this is her dancing.  Then I grabbed her hands and we started dancing around the kitchen together!  She had the biggest smile on her face....as did I!

At this moment, nothing mattered...as I was enjoying every second of this moment with her....holding hands....looking into each others eyes....smiling and laughing.....listening to music while we were dancing.....it was perfect!  And now when I listen to the song we were dancing to, I will always remember our impromptu dance party.  However, moments like these I will never forget!

Here are some quotes for today....

Life isn't about waiting for the storm to pass.  It's about learning to dance in the rain....-Vivian Greene

To watch us dance is to hear our hearts speak- Hopi Indian saying

Dance is the hidden language of the soul- Martha Graham