Friday, May 31, 2013

Her Artwork

Today's gift is her artwork.

I know I have mentioned my daughter has an amazing "Anne Sullivan", right?!?!?  Maybe once or twice.

She helps my daughter in so many ways throughout her school day.  One area I always think is so incredible is how she thinks "out of the box" for my daughter in art class.  First, I have to say "Anne Sullivan" created an art box for my daughter with all the tools she uses in art class....that are what she needs in order to participate.  She adapted an art box for my daughter!

As we know many things done in art class are not easy for my daughter.  Functional hand use which is always used is sometimes difficult for her.  "Anne Sullivan" knows she "thinks out of the box".

She lets my daughter "color", "draw", "scribble", "paint", whatever it is the class is doing and then takes a step back to look at what my daughter has "created".  Since "Anne Sullivan" is artsy herself and extremely creative, she will find a picture within the picture my daughter has drawn and outline you see a "picture".  Isn't this incredible?!?!?!

The work my daughter brings home is beautiful.  It is a team effort between her and "Anne Sullivan".  It  truly shows love and dedication and each piece is so special.  Each piece takes time to create just like any artist.  Some pieces she will work on for many weeks...but the finished product is well worth the wait!!!

Here are some pieces from her collection....

Here are two quotes for today....

If a child can't learn the way we teach, maybe we should teach them the way they learn- Ignacio Estrada

Art has the role in education of helping children become like themselves instead of more like everyone else- Author Unknown

© copyright 2012 – All rights reserved
365 Days Gift

Thursday, May 30, 2013

The Rose Dance

Today's gift is the rose dance.

Just yesterday I mentioned how much I enjoy reading about my daughter's day...didn't I??!?!  It truly is a highlight of mine.  But next to words, pictures and videos of her day are the priceless!

This afternoon on my way to get the girls from school I received a text.  When I pulled into the girls school to get into carpool line, I looked to see who it was from.  It was from one of the teachers in my daughter's class sending me two videos of her.

Today she had music with her mainstream class.  In class they were doing the Rose Dance.  Have you ever heard of it?  I had not, until today.  I don't know if there is a "story" to go with the Rose Dance (didn't find one online), or if it is something the music teacher made up.  But here is what I was have three chairs at the top of the room and two lines facing the chairs.  There are three students (two girls and one boy/two boys and one girl).  The person in the middle will be choosing who he/she wants to dance with down the line in between the rest of the class.  The person they do not chose, gets the bouquet of roses and moves to the middle, while the one they choose gets the dance.  Make sense?!?!

My daughter was picked on both of her turns and she also picked someone on her turn.  She really enjoyed the "dance" too....all smiles.  I think she was a little shy too....she just had "that" look on her face!  I love how the kids always want to include her.  I love to see all the children have an interest in her and not just the girls.  I love how they treated her just like them today!

It was really bittersweet for me to get these videos today of her!

The word "dance" makes me sad....when I think of the future.   It does.  Cotillion, homecoming, prom, first father/daughter dance at weddings....they all make me a little sad for my daughter.  So seeing videos like these are bittersweet for me.  I love them dearly and pray and hope her future holds special dances.  You know the dances you always dream about when you are little.   

Deep in my heart, I know her future will have lots of dancing!

Here is a quote for today....

Sometimes the best you can do is not think, not wonder, not imagine, not obsess.  Just breathe and have faith that everything will work out for the best- Author Unknown

© copyright 2012 – All rights reserved
365 Days Gift

Wednesday, May 29, 2013

iPodding with Friends

Today's gift is iPodding with friends.

Every day I get "Notes and News" home from my daughter's school.  I love reading about her is always a highlight of my day.

This afternoon I was so excited when I read what it said!!!!!  Here was the note...."she had speech today with T using her PODD and the children used her PODD today to say various things to her!  AC sat with head phones on while watching a video after she requested an item using her PODD"!!!

Wow...just wow!!!

I don't even know what to say.  So much excitement in one note...and that was only part of her day.  I love how she wants to use her iPODD and sees how when she requests something, she is given it.  This helps her to realize...we understand...we hear her.

I love it even more that her friends want to communicate with her using her iPODD!  This is a huge bonus to my daughter...she sees them use it and can communicate to me using my communication book....which only makes her want to use it more too!  I would love to know what they talked about.  I would have loved to have been a fly on the wall.

Just like the speech therapist from NYC will take baby steps for my daughter to start communicate with her iPODD, but once she "gets" it she will take off.  She is taking baby steps indeed, but I have to say she is further along in 10 days than I thought she would be.

Wow, I can't even believe it has only been TEN DAYS since we introduced PODD to her and she is doing so well.  I can't wait to see where we will be in TEN WEEKS!!!

I am one happy mom tonight and couldn't be more proud of my daughter and her friends. The iPODD took on a new meaning to them today.  I hope they understand the importance of this iPODD....while it doesn't play music and you can't watch movies on opens up a way for their friend to communicate to them with her voice.

Here is a quote for today....

I thank you for your part in my journey- Author Unknown

© copyright 2012 – All rights reserved
365 Days Gift

Tuesday, May 28, 2013

Walking Machine

Today's gift is she was a walking machine.

Wow!  She got her groove back!!!  It is so good to see.

As you know my daughter's walking hasn't been the best lately.  I know it was bothering her just as much as it was killing me to see her walk with difficulty.  However, over the past couple of days she has been getting better and better.

If her walking was good, her sitting up straight was off.  If she was sitting upright better, her walking was off.  But today....everything was great!  Everything was working like it is supposed to.

She started her morning with physical therapy.  I have to say she wasn't the happiest camper when we got there, but she pulled through (as we know she is a rock star!) and had a great session!  She was walking, running, jumping, and dribbling a ball that was easily four times her size!

Then she went to school with all smiles where overall she had a good day.  The best part of her day for me was watching her walk out to the car!!!!  I couldn't believe my eyes!!!  It has been a long time since I have seen her do this.  In between taking pictures, I was giving her thumbs up through the window!

Her busy day didn't stop after school, as she also went to the chiropractor today.  She really enjoys going and I have to say I truly believe she must feel so much better from going, otherwise she would not want to go one more place after school.

So why is her walking better?  I have no idea.  Is it the fact she went through a growth spurt and now her body has adjusted?  Is it the fact she added a chiropractor to her list of specialists?  Is it a combination of growth spurt evening out, chiropractor and physical therapy?

I do not know.

What I do know is she loves being back in her old body again.  She loves being able to walk and run freely.  I love being able to watch her go with no worries of her falling over.  I love having her sit at the table and not have to keep adjusting her as she leans to the side.  I love having her be herself again....herself... with the way we have lived with Rett Syndrome for 6 years.

As she has taught me, there are always going to be bumps in the road and mountains to climb.  This was a little bump we took, but hopefully one we can put behind us.  Thanks to the bumps and the mountains we are stronger individually and stronger as a family.

Here is a quote for today....

Sometimes God pushes us to our limits.  It's because he has greater faith in us than we have in ourselves- Author Unknown

© copyright 2012 – All rights reserved
365 Days Gift

Monday, May 27, 2013

Backyard Fun

Today's gift is backyard fun.

Happy Memorial Day.  Let's us not forget why we are able to spend this day with our family and friends.  Thank you to all who served and who continue to serve our country.

Today we had a very relaxed day.  My daughter slept in (till 10AM!!) and my husband let me sleep in too!  Thanks honey.  I can't believe I am still tired...maybe too much sleep.  We hung around the house and then went to get frozen yogurt for the kids afternoon snack.  When we got back the sun was starting to come back we headed to the backyard.

We haven't spent many afternoons back there yet, as many of us in the house suffer from allergies.  So it was really nice to get back outside again.  The best part, we were all outside together.

My oldest daughter and son were swinging together, while my husband and middle daughter played golf toss.  Then we would rotate in playing the winner.  Then we played girls against boys.  This is a new game to our family (thanks Mimi and Poppy) and the kids love it!  Actually we all love it!

We had such a busy weekend, it was really nice to have a catch up day before the busy week started.  I loved having all of us, (even the dog) outside enjoying the beautiful day playing together.  It was super fun and the perfect way to end a fun filled weekend.  And a perfect way to kick off the start of the week!

Here are two quotes for honor of Memorial Day.... do you thank those who most bear the burden of ultimate sacrifice? 

While only one day of the year is dedicated solely to honoring our veterans, Americans must never forget the sacrifices that many of our fellow countrymen have made to defend our country and protect our freedoms- Randy Neugebauer

© copyright 2012 – All rights reserved
365 Days Gift

Sunday, May 26, 2013

Playing a Little Football

Today's gift is playing a little football.

We have been really lucky this weekend.  We have had incredible weather and two fun days in a row with the kids and family.  Today we tried a new vineyard that was having an event for the local SPCA chapter...the one where we got Midnight.  So we thought...why not...

I think we found another fun place for our family.  Another place that is low key.  Another place where we can bring our own fun while listening to music and enjoying delicious food from local food trucks.  One of the same food trucks we enjoyed on Mother's Day weekend was at this vineyard today too, and I think has become our family's favorite!  Between the crepes and the amazing homemade ice cream....I don't know which one is better.

While we were enjoying the beautiful weather and listening to music my husband and middle daughter were throwing a football back and forth.  After about five minutes my oldest daughter jumped up out of her chair and walked over to my husband.  She indicated she wanted to play too.  Of course she did!  They were playing ball!

We know she loves to kick the ball.  We know she loves to dribble a ball.  We know she loves to throw the ball.  And today she caught the ball!

It was so cute watching the three of them throw the football.  She was having the best time.  I was so proud of her for catching the ball.....for throwing the ball....and for standing and walking so great!!!!

They were having so much fun I had to jump in too!  In between my turns I was snapping pictures!!!  

After perfecting a new skill today I think it is safe to say she will sleep well!  There is nothing like watching her have so much fun.  Knowing she is happy makes me happy!

Here is a quote for today...

Life is Good!

first catch...

second catch

daddy teaching her to "really" throw the football

© copyright 2012 – All rights reserved
365 Days Gift

Saturday, May 25, 2013

Strawberry Picking

Today's gift is strawberry picking.

We had a very fun day as we were celebrating Granny's birthday!

We took Granny strawberry picking and she had both of her children with her and all but one grandchild.

Remember in the fall we found a new place to pick apples.  Well, we went back to the same place to pick strawberries.  And it was just as perfect.

Interestingly enough, my daughter didn't want to "pick" any strawberries, but only walk the fields and watch.  And I have to say I think she was smart.  After about 5 minutes my hands and wrists were itchy.  If I stopped picking strawberries the itching would stop.  Clearly it was something about the plant.

She had the best time watching us and telling us where to look for strawberries.  However, I think her favorite part was the homemade strawberry ice cream we had at the end!!!  It was incredible!!!!

We truly had a really nice day with our family.  It was great to see the kids with their cousin.  While there is an age difference...she is a sophomore in high didn't stop their bond.  They really liked spending time together.

When the kids had dinner tonight, my daughter was really fond of the strawberries we picked today.  She enjoyed them and kept asking for more.  She loves fruit!  All fruit!!!  I think it was a great experience for her today.  I think she loved being part of the process of picking out the actual fruit we brought into the house.

I'm glad she likes them so much too....because we will be eating strawberries for a while!

Here is a quote for today....

The purpose of life is to live it, to taste experience to the utmost, and to reach out eagerly and without fear for newer and richer experience- Eleanor Roosevelet

© copyright 2012 – All rights reserved
365 Days Gift

Friday, May 24, 2013

Overcoming Obstacles

Today's gift is overcoming obstacles.

Every day my daughter overcomes some obstacle.  Some may be easier for her while others may be more difficult.  But no matter the obstacle, she faces it head on and overcomes it!

Watching her every single day has taught me more than I could ever imagine.  I have learned to appreciate every little thing.  I have learned never to give up.  I have learned to dig deep when challenged and to pull through....even if I feel like giving up.

I like to try new challenges where I can have a "taste" of what hard work really means.  I don't mean "hard work" as in work in the office, but "hard work" as in challenging myself outside my comfort zone.  Making myself feel uncomfortable....just like my daughter probably feels on many occasions.

Last year running a half marathon was one of those times I was definitely out of my "comfort zone".  Today, it was indoor rock climbing!

Wow....who knew my forearms would be so sore.  I knew it would be hard, don't get me wrong, but I thought my body would be sore, all over...not just my forearms.  Tomorrow morning will probably be a different story!

I am not one who is really afraid of heights, but today being 50 feet up on the side of a wall was a little queasy...I am not going to lie.  And going up was much harder than I anticipated.  The whole time I was thinking of my daughter...and what it must feel like for her to do something that makes her work hard.  Something that takes all she has.  These thoughts helped me reach the top.

On my last climb today I wanted to give up.  I did.  I challenged myself to one of the harder walls...on purpose.  This climb was for her.

I don't know if you have been rock climbing or not, but when you go, you try to stay on one color all the way up.  Two of the climbs, this was easier to do on....the last one....not so much.  The spacing between the grips was further apart and you really had to work.  You really had to trust yourself.  You really had to plan.  You really had to push yourself to overcome the obstacle facing you.

My hands were sweaty...just like my daughter's are daily...from wringing them.  My upper body was shaking....just like my daughter's does in therapy when trying a exercise.  My mind was taking time, longer than usually to make a decision and to plan my next move....just like my daughter's apraxia sets in everyday, in every situation.

I wanted to stop.  I wanted to call it.  I wanted to give up.

But just like I cheer and encourage my daughter when I see she wants to throw in the towel, there were a team of friends at the bottom....cheering me on.  Telling me not to give up.  Telling me it is okay to take a break.  The same words I say to my daughter.

A break is what I needed.

I wiped off my hands.  Looked at what was ahead of me.  Took a deep breath....and climbed to the top.  It was hard.  I am not going to lie.  And I did step off one green and onto one blue.  But I didn't care.

Me stepping on one blue was better than me giving up.  Just like my daughter may not walk straight on the treadmill every day, she still walks on it.  She doesn't give up.  Even when things are tough.

I thank her for teaching me how to overcome obstacles I may face...planned or unplanned.  You just put your best foot forward and work at it one step at a time.  If you need a break, you take it.  But you never give up!

Here is a quote for today...

Rather than being defeated by your situation, picture it as a mere chapter in the amazing story of your life- Charles Marshall

joking about how my heart was racing and I wasn't even climbing yet!

following the blue and green

coming down is the best part

starting my challenge climb

thinking I'm doing pretty well

at the point where I wanted to GIVE UP!

but didn't....

almost there

I made it!

the ladies who cheered me on!!!

© copyright 2012 – All rights reserved
365 Days Gift

Thursday, May 23, 2013

My Little Manipulator

Today's gift is my little manipulator.

How many of you have a child who likes to manipulate you? Come on be honest.....

My youngest two try to do it as much as they can.  Whether it is asking me/ my husband something and then when one of us says no, they go to the other one to try and get what they want.  Or they are really good when they "want" something and as soon as you give it to them they start acting out.

Kids definitely know how to work us and sometimes they do get away with it.

My oldest daughter with Rett Syndrome must have been taking notes.  She pulled one over on me today.

This morning she had physical therapy.  She was in a happy mood and was excited to go.  We walked in, she went right over to the treadmill ( as she knows the routine ) and she was ready to work.  She walked like a rock star on the treadmill...and hasn't walked that well in a long time.  After her treadmill time she walked with her therapist to grab all their materials they use for stretching...just like every session.

And then she got "the look".

And "the look" didn't go away.  In fact, she got a bit upset.  We tried to cheer her up to no avail.  She was adamant she wanted to go....pointing to the door and saying "go"!  So we went to the car.

We sat in the car for a little bit to see if it would pass and we could maybe go back in. Nope..."the look" was still there. So we called it a day.

As soon as we pulled out of the parking lot, she rolled down her window and started laughing! Really!?!?  I couldn't believe it!  I looked at her and said, "you played me".... and she laughed harder! In fact she laughed all the way to school.

Her are the pictures I took of her.
Here she is rolling down her window...breeze in her hair!

We talked about how physical therapy is important for her and how she needs it.  I told her how I understand some days are tough and it may be uncomfortable, but we can't act like we did today. Hopefully with her new PODD system we will be able to get her to communicate to us she needs to take it easy and not have her get so upset.  She knows she got away with it today....but not next time.  I have her number now!

Here is a quote for today....

Life if better when you are laughing- Author Unknown

© copyright 2012 – All rights reserved
365 Days Gift

Wednesday, May 22, 2013

A Girl and Her Dog

Today's gift is a girl and her dog.

This afternoon I took my daughter for a walk as it was a beautiful day.  It was just her and I....there are not many afternoons where it is just the two of us.

I was going to just have the walk just be us, but decided to take Midnight, our dog, with us too!  She loves him and he loves to go on it was the best for both of them.  My only concern was him taking us on a walk!  He tends to walk fast...and she is already on wheels in her cruiser....and sometimes he will pull to the side.

However, I gave it a try!

It was one of the best walks in a long time.

It's funny how I trained for months to run a half marathon and as soon as it is over....I'm done!  The thought of running (the long runs did me in!) still doesn't appeal to me...but I do miss walking.  It was great to get back outside.  It was great to clear my head.  It was great to get some vitamin D.  And it was great to enjoy some one on one time with my daughter talking about all the little things.

When we started out, Midnight did just what I thought he would....walked on a diagonal right into her cruiser.  I kept telling him I wasn't moving and he needed to start walking straight.  I guess he thought I was kidding as he did it about four more times.  And every time he ran into us, my daughter would laugh....she thought it was pretty funny.

Finally, after the fourth time....he got it!  His listening skills are kinda like my other two children's!

From then on, he walked right next to her cruiser, in a straight line.  Which made it much easier for me too!  Pushing her and having a dog pull in another direction or into you is not easy.

I loved watching my daughter and Midnight.  He stayed right by her side on the walk and she stared at him much of the walk.  I loved watching her watch him.  There was something about it.

Maybe it was the fact, she will not be able to "walk" her own dog...unless a cure is found as he would definitely take her for a walk.  So having him walk next to her, is the next best thing to "her" walking him.  Maybe it was the fact she felt safe having him by her side.  Every time someone or something came into his view he really checked them out and would not let anything/anyone get close to us.  Or maybe it was she just loves her dog and enjoyed having him be part of our walk too!

You know what they say....a picture is worth a thousand words.....

Here is a quote for today....

A friend is someone who helps you up when your down; and if they can't, they lie down beside you and listen- Author Unknown

© copyright 2012 – All rights reserved
365 Days Gift

Tuesday, May 21, 2013

Ca Ca

Today's gift is Ca Ca.

You might be able to guess it....she said a new word!!!! Now to most of you, you probably can not guess what word she is saying.  And I will give you the credit that you didn't know the context it was used in either.

How many of you had the word 'car' come to mind first?

No....that is not it.  She actually can say the word 'car'.

I will not leave you hanging anymore....

Tonight my husband was starting to put her to bed for me while I was busy and then I was going to switch places with him as it is technically my turn to put her to bed tonight (we alternate nights with all the kids).  He was asking her to chose her book she wanted read to her, just like we do every night.

She pointed to "Cocoa and Cowgirl Kate" and said "CA CA"!!!!  Ca Ca was for Cocoa!!!!

The speech therapist who was just here with us this past weekend for the PODD training said we may start to see her vocalize more now too and get new approximations/words.  I loved the idea that this was possible.   But, never did I expect the surprise so fast!

The simplest surprises are the best...aren't they?!?

Here is a quote for today....

Keep your face to the sun and you will never see the shadows- Helen Keller

© copyright 2012 – All rights reserved
365 Days Gift

Monday, May 20, 2013

Getting More Comfortable at the Chiropractor

Today's gift is getting more comfortable at the chiropractor.

This afternoon was adjustment day!  My daughter loves going to the chiropractor...and she knows the routine when we walk in.

Routine is key for her, as well as, repetition.  Each adjustment is done basically the same way.  Which is easy for her to remember and get used to.

Today, was no different.

Except, she was more relaxed!  Usually when she is lying on her stomach, she isn't 100% relaxed and has her head elevated a little in the head rest.  Today, she laid down and immediately rested her head all the way down into the head/face rest!  I couldn't believe it!

She was showing us how comfortable she is now going and trusts him to help her!

We also tried the "wave" table (the intersegmental traction table) at the end.  She didn't know what to think of it, but she also liked it.  It was a different sensation, but after exposing her to it, I know she will like it for sure.  Think of it as a massager.  It is an ergo-wave roller pattern which travels up the spine like a wave and all areas of your spine are covered with three independent rollers.  I have tried it too...and it does feel funny the first time, but it also feels good on your spine.

I love watching my daughter grow.  Grow at her own speed, in her own way.  There is no rush.

Here is a quote for today....

Every accomplishment starts with the decision to try- Author Unknown

© copyright 2012 – All rights reserved
365 Days Gift

Sunday, May 19, 2013

iPodd, yes with TWO d's

Today's gift is iPodd....yes with TWO d's.

As I said in yesterday's post we have been training all weekend on a new way to communicate with our daughter.  The system is called PODD...and we as a team joked and call it iPodd.  She has had an Apple iPod (with one 'd'), and she loves her iPad, but now we have the iPodd!

PODD stands for Pragmatic Organization Dynamic Display. And if you are like me, you are probably wondering what does this mean.

A lot!

Let's start with breaking down what PODD stands for...
Pragmatic- the ways we use language socially
Organization- words and symbols organized in a systematic way
Dynamic Display- changing pages

The PODD system is a way of organizing whole word and symbol vocabulary in a communication book or speech generating device to provide immersion and modeling for learning.  The PODD is aimed to provide vocabulary for continuous communication all of the time, for a range of messages, across a range of topics and in multiple environments.  The PODD system is designed to be just one tool in the toolbox of communication needs.  For example, my daughter will not stop using her gestures, actual words, pointing, facial expressions; however, we will help her now to chose whichever method is most effective for each situation.

She is using a book similar to the one in the upper left hand corner...two pages.

To say she enjoyed her introduction to her new way of communicating...would be putting it lightly.  She loved it!  And actually said she "liked" it!!!!

We know she is not going to take off overnight with it and start talking tomorrow.  With everything, practice and repetition are key.  But it doesn't stop there.  We have big shoes to fill too!

We... her family, her "Anne Sullivan", her therapists, her peers...must communicate with her using it too!  The beauty of this is that she sees we are all learning this the same time.  And let me just say, it is not easy.  She will see us stumble and look confused too.  But just like "Anne Sullivan" said today, "us learning this system is like us having apraxia.  It is very humbling".

She is 100% correct. It gives you a glimpse of what is must be like for my daughter.

There are rules to the book.   My daughter is not allowed to turn the pages.  She can point, but not turn. She will have book partners who know and understand the book, who will guide her through it after she makes her choices by pointing and help those who want to communicate with her.  It is not to be forced, but be used naturally.  Everything can not be asked to her in question form...but true conversational speech.  This will be extremely hard for all of us.  For 11 years we have been asking her everything in question form..for example, "do you want to do ' x'; do you want this or this for lunch; do you like this or that better, etc". We have been asking her questions and offering her choices we think she wants.

It will be difficult, but rewarding.

In order for us to understand we must talk "PODD" to each other to get a true understanding of the book and how it flows.  The better we navigate the system, the better we can help her.
What I love about it, is her freedom to tell us just about anything, we aren't expected to learn overnight and it may take her six months to a full year to start using it...consistently....and that is okay!

We start with baby steps...first week we just get in the habit of taking the book (which is waterproof!!!!) with us every place she goes to form the habit of having it.  Second week we work on the 'quick words' only on the first page.  Then week three we work on a branch...a word/thought that will link us to another page.  We will focus on one branch at a time to fully understand it and then move on to another branch.  And then before we know it we will be fluent in PODD and helping my daughter to be as well.

Tonight before we left my room to go to bed, I grabbed the book and said the following sentence all through pointing to the symbols (think of it as buttons) in her PODD book...."It's time to go to the bathroom and then we are going to go to bed".  Then like you do in PODD language I brought us back to the beginning of the book.  I looked at her and asked her if she would like to say anything before we go.  She looked intently over the two pages and I was just about to close the book, thinking she didn't have anything to say (which is OK if she does not...there will be times she doesn't...many of them...just like us), when she pointed to "I have to go to the bathroom".  I said, ok, let's go.

And she went!!!  Mom, I know you are rejoicing!!!  Not because she went to the bathroom (she has been potty trained for years), but because she purposely said she needed to go...with a voice!

But the excitement didn't stop there...for me.

Before I read to her, I put her lotion on her hands and covered them with socks to help the lotion really make her hands smooth as she has sores from wringing them so much.  After I was done, I noticed she was really looking at her hands...the socks on she was really interested.  So I grabbed the book and created the sentence..."I think you feel silly having socks on your hands".  To which she said, "thank you"!

I didn't know if she was thanking me for realizing she felt silly or if she was thanking me for putting the socks on with the lotion as it makes her hands feel better or thanking me for opening up a new way for her to communicate.

As we were taught in our training, I went with the situation...the context of our immediate situation.  I said, "you probably do feel silly, but the socks will help the lotion stay on your hands and make your hands feel better."  I said this verbally...not using the PODD.

Then she touched, "thank you" again...along with other symbols.  Which is okay, as this is her way of babbling, her way of learning what everything is.  This "thank you" was her telling me she was thankful for a new voice.  I know it was!  I explained how this was new to all of us and we will help her.  As she was touching the symbols, I was reading them to her, so she would know what they all mean and what they say.  I was following her lead.

I am in awe of the FIRST day with her new PODD awe!  I can't wait to see where we are in six months.  This is a commitment...a family commitment to our daughter.  If we want her to be her best and be able to communicate to us, we have to model and learn her new language with her.

This weekend we as a team came up with a little motto for her and her friends, you?  They didn't yesterday, but they will tomorrow!

Here are three quotes for today....

I didn't say it was going to be easy, I said it would be worth it- Author Unknown

I thought I would have to teach my daughter about the world.  It turns out I have to teach the world about my daughter- Author Unknown

This last quote was just sent to me in an email from my daughter's speech therapist saying how she is so happy to be part of a dedicated team for her....

My heart is singing this morning.  A miracle has happened!  The light of understanding has shone upon my little pupil's mind and behold, all things have changed- Anne Sullivan...the true Anne Sullivan, Helen Keller's teacher

Did I mention my daughter is truly blessed with a wonderful team!!!!???!!!

© copyright 2012 – All rights reserved
365 Days Gift

Saturday, May 18, 2013

Inspiring Others

Today's gift is inspiring others.

Whew...what a day!   Today my daughter's team (her amazing "Anne Sullivan", her two school speech therapists and two AT therapists from the school system and I) all attended a six hour training on a new system to help her communicate with us.

It is called Pragmatic Organization Dynamic Display (PODD).  It is very popular in the Rett community and I see why!

We were very lucky to have a speech therapist from NY come to our home to train us on this new method!  We are extremely blessed to have an amazing team give up their weekend with their families to help someone in mine!

My daughter truly is inspiring...not only to me, but to all who know her and work with her.  I could tell today by the filled room how much they truly want to help her the best they can.  The energy in the room was amazing!!!

It isn't going to be easy.  It isn't going to happen overnight.  But we all know this.  Just like everything else patience and repetition is key.

However, being the amazing child she is, we all know she will take off with this new way of communicating and we can't wait to hear what she has to say!!!!

I can't wait for tomorrow's session....all of us with my daughter.  All of us learning how to use it with her.  Including her siblings!  

Instead of a quote...I would like to ask you a question...we were asked this today too....and it really hit home.

Right now, I want you to think of two things you would rather be doing than reading this blog post.  Don't say them out loud....just keep them to yourself....

 are your choices of what you can do.....

Is what you were thinking one of these pictures?  No...

The choices we think my daughter wants to do is probably not what she wants either.  I can't wait to unlock her voice!!!

Friday, May 17, 2013

A Little Extra Time Together

Today's gift is a little extra time together.

Just thinking about this weekend exhausts me.  We have some exciting plans this weekend (future posts), but it is going to be an exhausting weekend for sure.

Today the girls had field day at school.  I was trying to get it all "in" today....between running my last minute errands to get ready for this weekend and going to field day to snap some pictures I was non-stop...and this was while the girls were in school.

And then for personal reasons, my daughter came home with me after field day....which meant some things got left undone.  Which is okay.

The timing was perfect for us to spend a little extra time together.  This weekend is all about her, however, tomorrow I will be busy and will not see her much (I know...confusing until you know what I am talking about...sorry!).  Knowing I will not see her much tomorrow, I enjoyed our extra time.

Not to mention the beautiful weather we had today too!

It was a sign for me to slow down.  Take a deep breath.  Enjoy the moment.

I could have been a basket case and stressed out...but I wasn't.  I actually enjoyed putting everything on hold and just enjoying her company.  Just enjoying us.  Just enjoying the moment.

I think she did too!

Here is a quote for today....

If you're always racing to the next moment, what happens to the one you're in? -Author Unknown

© copyright 2012 – All rights reserved
365 Days Gift

Thursday, May 16, 2013

A Good Day

Today's gift is just a good day.

I feel like lately we have been going going going.  And while we are going we have had some bumps in the road.

But today it was nice and refreshing to just have a good day.

Physical therapy was a little challenging this morning and caused my daughter to get a little upset, but she turned herself around.  She doesn't like it when they "work" her too much...but that is the reason we do physical therapy.

After PT this morning, her walking was a little stressed, but I believe it was due to the fact she was tried from working extra hard first thing this morning.  Her school day was great, as well as, her afternoon at home.  Her legs shaking were even better...almost no tremors today!  I honestly don't get it.  One day the tremors are constant and the next non-existent!

I am really happy for my daughter today.  I just want all her days to be happy ones.  Ones where there is no pain.  One filled with no frustrations.  One filled with doing whatever she wants to do and not what we ask of her.  One filled with joy and not anxiety.

Today was a breathe of fresh air.  Today was one of those days you need to fill your spirits back up to help you through any rough patches that are to come your way in the future.  Today was a reminder, good days do happen and when they do you must not take them for granted.

Here is a quote for today....

You can't have a better tomorrow if you're still thinking and worrying about yesterday- Author Unknown

© copyright 2012 – All rights reserved
365 Days Gift

Wednesday, May 15, 2013

An Honor at School

Today's gift is an honor at school.

I never thought that on the same day we have an IEP meeting I would be writing how my daughter's gift today is an honor at school.

I truly believe there is a reason this "honor" came home today...this gift.

Yes, we had an IEP meeting....a three hour IEP meeting.  Yes, they are not fun.  Mostly just long, long, long, but something we must do...every year.

All and all our meeting was very successful.  As I have said in the past we have an amazing team working on behalf of my daughter.  They believe in her and that is all we can ask.  We did have a minor bump, but we figured it out...and moved on.

Coming out of IEP meetings I am drained...physically and emotionally.  It takes a lot out of me, especially when you get heated about something you are passionate my daughter.  When I come home I just want to decompress a little...but everyone (grandparents) want to know what you relive it again and get all worked up...a little bit.  Today, I will say I was able to decompress and have lunch before round two.

And it was during this time, that my mom told me about my daughter's honor she got at school today (she picked her up as I was still in the meeting).  Next year she will be in 5th grade and 5th graders can have "jobs" at school throughout the day.  My daughter applied for a couple and had to submit an application...just like everyone else.  Well, today...she was honored with TWO jobs!!!!

For the 2013-2014 school year, she will be a safety patrol in the morning AND as part of the school helper program she will help in the bookstore!  I could not be happier for her!  And she is so proud of herself!!!!

This gift is exactly what I needed today!  She works so hard and deserves chances just like everyone else...and her school GETS it!!!  This gift today helped me realize how incredibly lucky we are to have her in a school where inclusion is understood and accepted and wanted!  We couldn't be happier having our children be part of this school community.  Even through all the politics we have to deal with, at the end of the day we are extremely blessed.

Here is a quote for today....

Your life is your message to the world.  Make sure it is inspiring- Author Unknown

© copyright 2012 – All rights reserved
365 Days Gift

Tuesday, May 14, 2013

Being a Bedtime Joker

Today's gift is being a bedtime joker.

My daughter was funny tonight!

As I was getting everyone ready to go to their rooms to relax before bedtime stories she was roaming around the upstairs.  Turning lights on and off.  Turning the faucets on and off.  Shutting doors.  And laughing.

When I told the kids to go to their rooms and to wait for me to come to read to them, my daughter went into her brother's room.  All of a sudden I hear him telling her to go to her room and you can't sleep in here tonight.  I walk into his room and sure enough she is in there.

In his bed....flipping through a book!  She definitely made herself comfortable!

She just laid there with the biggest grin on her face, like what are you going to do about it.  She was so cute I had to take a picture!

she moves so fast, sorry the picture is a little blurry!

I love how she knows just when I need a giggle.  She knew I needed a little gift tonight to make me smile and for me to know everything is going to be okay!

Here is a quote for today....
Live every moment.  Love beyond words.  Laugh everyday- Author Unknown

© copyright 2012 – All rights reserved
365 Days Gift

Monday, May 13, 2013

A Fighter

Today's gift is a fighter. in never gives up.

Watching my daughter daily truly is inspiring.  Watching what she has to overcome every single day is heart wrenching to watch, but also rewarding at the same time.  She simply amazes me.

Here I am going to think about being in her should too.

First and foremost I honestly can not imagine not being able to talk.  And since I am Italian, how about not being able to talk AND not being able to use my hands. 

But it is more than just speech.

How about having to have someone wash me, dress me, feed me.  Take care of all my activities of daily living....for example helping me in the bathroom.  I have little privacy.  

Then there is watching me to make sure I do not lose my balance and fall, which could produce a fracture.  I can not walk up or down stairs...and walking on stairs is getting harder and harder for me.  It scares me and the person helping me.  I am relying on them more and more.  I hardly have any time to myself.

My walking has become inconsistent and I don't know why.  My legs shake...all the time.  Like a tremor.  I don't like it.  My mom can see it in my eyes, but she tries the best she can to understand.  I know that.

I try to communicate the best I can through my words, my iPad or through gestures....but sometimes they just don't get it.  And it is very frustrating.  So I get mad.  I can't help it.  

I know my parents and my family and my "Anne Sullivan" want what is best for me.  I can tell by how they never give up on me.  I know it must be hard for them to watch me when my body starts to do new things, which make my life more difficult.  Trust is hard for me too.  I have a high pain tolerance, but sometimes it does hurt...but it is hard for me to communicate this feeling.  Hard for me to adjust.

But I do.  I fight through it all because I will not give up on them as they promised not to give up on me.

My daughter has a lot to overcome daily and she fights with all her heart.  Whether it is easy or a challenge she gives it her all.  She knows we do everything we do for her to help her be the best she can be.  There are days when it is not easy to watch her me.  It kills me.  But the days she overcomes obstacles in her way is so rewarding.  For both of us.

Today was an adjustment day.  Her walking and shaking hasn't really improved and I am waiting to hear back from her doctor in NYC.  But what was interesting was her "Anne Sullivan" knew she was going today and asked her if she liked going to the which she answered "Ya".  And then "Anne Sullivan" asked if she felt better after she went and she said "ya" again.

I believe it!  Minutes before we left for the appointment, she was starting to not be happy.  As soon as I said it was time to go see Dr. M she jumped up off the sofa and had a smile on her face!  And has had one ever since!

I promised my daughter when she was diagnosed with Rett Syndrome 6 1/2 years ago I would never give up on her.  And I will not.  Whether is it is educationally, emotionally, physically, name it....I will never give up on her.  We will fight the fight day at a time.

Here is a quote for today....

God can restore what is broken and change it into something amazing.  All you need is faith- Joel 2:25

Life has no limitations.  Except the ones you make- Author Unknown

© copyright 2012 – All rights reserved
365 Days Gift

Sunday, May 12, 2013

A Wonderful Mother's Day

Today's gift is a wonderful Mother's Day.

I have been celebrating this day for 11 years.  Sounds like a long time when I write it out, but the time has flown by.  I wish I could go back to the day they were all babies!!!

I honestly can not believe all my "babies" will be so old this year.  This September will be my oldest daughter's last year before she is a teenager.  October will be my middle daughter's last year in the single digits.  And in July my son will begin counting his age on two hands!

Mother's Day is a day for us to celebrate being a mother and/or to honor our own mothers and grandmothers.  It is a day everyone tries to make special for you or you for them.

Of course on Mother's Day there are some aspects of the day you would like to have to yourself...right...come on, be honest!??!  But on the other hand you also want to be with the ones who gave you the title "Mother".  I like a little of both.

And today my family did a great job of giving me the BEST Mother's Day!

Sleeping in, breakfast in bed and time to myself to get ready....heavenly!  But I also wanted to share the day with my family.

When I am thinking of ideas to give to my family for what I would like to do on Mother's Day I think of everyone involved.  What is going to be fun for all of us, but most importantly will my daughter with Rett Syndrome have fun?  Will she be able to participate in what we are going to do?

Sometimes the choices are limited.  And that is okay, because the most important thing is having fun together and creating our own memories!

This afternoon we took at picnic to a local vineyard.  We brought food for the kids (from one of my daughter's favorite places!) and my husband and I shared a delicious sandwich from one of the two food  trucks at the vineyard.

We brought a blanket, chairs, lawn games....and had a blast!  The weather was beautiful, there was someone playing the guitar and singing and there were other families creating memories too!

My daughter enjoyed every second of our day.  She loved hearing the music (which was the perfect volume!).  She loved people and dog watching.  She loved playing ball.  She loved her ice cream treat.  And she even enjoyed a visit from a teacher she hasn't seen in years!  Remember how I mentioned not too long ago she never forgets a soon as she saw her old teacher...from her preschool years at the school for Autism she attended she got a huge smile on her face!

I enjoyed every second of our day too!  I love how we were all together enjoying the day as a family...just like everyone else around us.  I love how we found a new place for our family to frequent where we can go and relax and have fun.  It was like we were at a friend's house playing in their backyard...with other friends.  Everyone was so friendly!

I get really excited when I find new places for our family because we are unique.  What fits for us, is different for most.  However, this is a place we could come with friends and everyone would have a great time!

This evening before putting all the kids to bed I told them how much fun I had with them today.  They all agreed they wanted to go back!  That is a sign of a good day!

Here is a quote for today....

There is no one perfect way to be a good mother.
Each situation is unique.
Each mother has different challenges, different skills and abilities and certainly different children....
What matters most is that a mother loves her children deeply. -Elder M. Russel Ballard

someone always has to look in another direction ; )

being silly 

people watching!

like father like son

blast from the past!


© copyright 2012 – All rights reserved
365 Days Gift