Thursday, April 28, 2011

One Step Closer

As of tonight, we are 35 days until the big surgery day for Kate's eye muscle realignment revision.

35. Days.

And today, because her awesome optho said that her vision worsened since August and she is a bit more near-sighted, we need to put her back in glasses.

Her eyes began to strain too much and the muscles couldn't handle it.

Hence, the revision planned for early June.

So she picked out her own frames, my big girl.

And of course, they are her fave color: blue.

And I think she is more beautiful than ever!

Wednesday, April 27, 2011

Make The First Five Count!


I just signed a petition to support the millions of young children with undiagnosed learning and health issues who never receive desperately needed treatment and therapies.

I believe all kids deserve a chance to start school ready and able learn alongside other children their age.

Will you add your name to the Easter Seals petition and support our country's most vulnerable kids?

MAKE THE FIRST FIVE COUNT!

When kids with disabilities or at risk of developmental delays get the treatment and therapy they need before the age of five therapies that work to strengthen their physical, social, emotional and intellectual abilities they can succeed in school and achieve their full potential.

However, we as a nation don't invest nearly enough in these vital programs.

If you believe, as I do, that all kids deserve a chance to learn alongside their peers, build lifelong skills, and achieve their dreams, please speak out today!

MAKE THE FIRST FIVE COUNT!

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Tuesday, April 26, 2011

Tuesday Top Ten


10. A beautiful Easter Sunday.

9. Finding out that Kate's surgeries will be done on June 3rd.

8. Too much chocolate = two hyper kids and a sleep deprived Mama.

7. Mom and Dad on board for calling another IEP Meeting.

6. The bond of strangers with special needs children.

5. Counting down the days until the end of school...only 5 weeks left!

4. The peace and quiet of house when both kids are in school....strange.

3. Networking.

2. Boy giving up the bedtime pacifier routine...for good!

1. I love my kids!

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Monday, April 25, 2011

Request for IEP Meeting is.......


....SENT!

A Mom has gotta do what a Mom has gotta do!

Now, I sit here and wait....for those 10 legal days for a response....

I've got all of my ducks lined up in a row, so when they call me, I am ready!

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Friday, April 22, 2011

Phonemic Awareness


First of all, Phonemic awareness is not phonics.
Phonemic awareness is the ability to hear, identify, and manipulate individual sounds-phonemes--in spoken words.
Before children learn to read print, they need to become more aware of how the sounds in words work.
They must understand that words are made up of speech sounds, or phonemes (the smallest parts of sound in a spoken word that make a difference in a word's meaning).

Unfortunately, many children with apraxia struggle with this.

And this is why I am fighting the good fight with our school SLP.
Why?
Well, she doesn't think that my daughter has an issue with this (everyone else does!) and was frankly "surprised" as she put it when I brought it to her attention.
NOTE: This is the first SLP that has shocked me with her lack of understanding of the basics of speech and language.


Why Phonemic Awareness Is Important?
•It improves students' word reading and comprehension.

•It helps students learn to spell.


Phonemic Awareness Can Be Developed Through Activities
•Identify and categorize sounds

•Blend sounds to form words

•Delete or add sounds to form new words

•Substitute sounds to make new words


Phonemic Awareness Instruction Is Most Effective When--
•Students are taught to manipulate phonemes by using alphabet letters.

•Instruction focuses on only one or two rather than several types of phoneme manipulation.

•Phonemic instruction is taught in Kindergarten or First Grade.


Phonemic Awareness Instruction Basics
Children who cannot hear and work with the phonemes of spoken words will have difficult time learning how to relate these phonemes to graphemes.
(A letter of an alphabet, or all of the letters and letter combinations that represent a phoneme, as f, ph, and gh for the phoneme-American Heritage Dictionary) when they see them in written words.

Early readers can show they have phonemic awareness in several ways:
•recognizing which words in a set of words start with the same sound

•isolating and saying the first or last sound in a word

•combining or blending the separate sounds in a word in order to say the word

•breaking up or segmenting a word into its separate sounds.


Examples of Phonemic Awareness Skills
•Blending:

What word am I trying to say? Nnnnn-oooo--t.
•Segmentation (first sound isolation): What is the first sound in not?

•Segmentation (last sound isolation): What is the last sound in not?

•Segmentation (complete): What are all the sounds you hear in not?

So this is why my feathers are ruffled.
This is why I called a Parent-Teacher Conference.
This is why I will be calling another IEP Meeting.
And due to the number of untruths in an email that I received, there is not a program in place to help my daughter learn this in school.
Yes, teaching takes place at home as well, and we are trying so hard to help her, but this is where the schools have to step up and help.

And thanks to a great Parent-Teacher Conference, not to mention that the school's Principal was also in attendance, a program is being instituted.
Click here to see what we are using to help her learn this skill.

And yes, I will be adding this to her IEP in the coming days.

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Thursday, April 21, 2011

Going to the Bank


It's amazing what one can find on Google.

Ab-so-lute-ly amazing.

And how handy this site is going to come in for me when I finish rewriting my daughter's IEP goals prior to the meeting that I will be calling in the next few days.

A-mazing!

The sad thing is that I believe this is where a lot of the goals are coming from, proving my theory that they are not "personalized" to my daughter's needs.

Need help or ideas on IEP goals?
Click here!

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Wednesday, April 20, 2011

44 Days

Until Kaitlyn's surgeries.

Yes. That was an /s/ on the end of that word "surgery".

Yes. That means eye muscle revision as well as tonsils and adenoids.

Yes. Both docs agree that the surgeries need to be done, and luckily they are ready to do them on the same day.

That means one anesthesia, but for two hours instead of two 45 minute procedures.

The stars are aligning.....

....And I am so nauseated.

Tuesday, April 19, 2011

Tuesday Top Ten

10. Email exchanges with the school staff which exposed substandard work by select few. That is a shame!

9. Getting the appropriate homework for Kaitlyn....homework that should have been sent home from Day #1 and not the end of the school year.

8. A nice phone call and a potential plan with our Ophthalmologist last week.

7. Kaitlyn understanding what her surgical plan may be.

6. Kaitlyn moving up a level in swim lessons. The breast stroke will be difficult for a child with a motor planning issue.

5. Planning to call an IEP Meeting to rewrite goals.

4. A mad Dad. Enough said!

3. Andrew exhibiting signs of right ear issues. Yes, I knew this was a possibility.

2. Continued progress with both kids in speech.

1. I love my kids!

Monday, April 18, 2011

50 Ways To Support Your Child's Special Education


IEPs get all the attention, but there are things you can do every day to support your child's special education that make all the difference between success and frustration.

Parents have the power.

You want your child to have the best of everything -- especially education.
But you may not even know where to begin, given the often confusing and ever-changing landscape of special education.
The Individualized Educational Programs (IEP) are complicated -- but in "50 Ways to Support Your Child''s Special Education," you'll find simple ways to advocate for your child every day. You'll learn how to:

+ Communicate effectively with teachers
+ Get the most value from homework
+ Become more involved at school
+ Ensure your child is well-rested
+ Start a school day on the right foot

Advocacy starts at home, with you and your child.
You don't have to take a backseat or take on the school district, the state, or the lawmakers to improve your child's learning experience.
With these easy and effective tips, you can make a difference in your child's life, each and every day.

Author Terri Mauro is the About.com Guide to Parenting Special Needs Children and the author of "The Everything Parent's Guide to Sensory Integration."
Her humorous website, Mothers With Attitude, on which she shares many of her special education strategies and struggles, has been named a USA Today Hot Site and a Good Housekeeping Site of the Day.
Mrs. Mauro serves on her school district's special education parent advisory committee, and has been trained to help other parents through the IEP process.
She also has a dozen years of experience shepherding her own two children through the special education system.

You can find the "50 Ways" Facebook Page here.
Or you can follow her on Twitter here!

And yes, you know I have the book and I follow her, too!

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Friday, April 15, 2011

My Awesome Find!


Even though we just had Kate's IEP Meeting in January, we are calling another one in the coming weeks.
Yes, we are unhappy with some of the programming.
And now that I have had a meeting as well as ample time to read and re-read the current IEP, I feel that it doesn't reflect my daughter's needs.
Not the entire IEP.
Just the speech and academic portions.

But when you go online for info, there is so much out there and so much to try and comprehend and digest.
We have already consulted with both an advocate and an attorney, so we know that we have valid points and a darn good reason to call another meeting.
Plus, I would prefer that the current team rewrite the IEP sections that I am concerned about before the next school year rolls around because I really don't want to have to train a whole new team.
More importantly, it would not be fair to them to clean up the mess from one member of the current team.

Can you tell that she has not scored points with me at all???
She talks a good talk, but I was action and I don't see it.
A new, revised IEP will force action.
So I found this awesome book.
It's like OMG awesome, and it answers all of my questions.

"Your special needs child needs a special education, and as a parent, you face a number of obstacles as you work with your school district to develop an Individual Education Plan (IEP) - lots of steps, complicated paperwork, and intimidating procedures may seem like too much to take on...

...but you can do it! Let The Complete IEP Guide guide you through this complex process with vital information, strategies, and the encouragement you need to secure your child's education. Get everything you need to:

*understand your child's rights
*untangle eligibility rules and assessments
*collect all school records
*draft goals and objectives
*pinpoint specific problems
*develop a blueprint of program and services
*research school programs and alternatives
*prepare for IEP meetings
*resolve disputes with your school district

Whether you're new to the IEP process or entering it once again, this user-friendly, plain English guide is your outline for an effective educational experience for your child. You'll get all the forms, sample letters, and resources that you could possibly need at any stage of the IEP process.

The 7th edition is completely updated to reflect the latest -- and major -- changes to federal regulations concerning your special education student, including details about your child's eligibility for special education services."
Click here for more info and to order!

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Thursday, April 14, 2011

Why Is It....

...that when Mom gets all ticked off, people start to jump?

...that when Mom gets all ticked off, people start sending super-duper detailed emails?

...that when Mom gets all ticked off, slips are made and mistakes are noted?

...that when Mom gets all ticked off, things get done?

Why can't people just do their jobs from Day #1?
I don't get it.

Yep, this Mom is a little ticked off.
And it's funny how "phantom" therapy techniques are coming out of nowhere now.
Really?
Really?

Maybe it was because the Principal was cc'd in my original email.
And my bet is that someone may be in a little trouble.

Glad it's not me!
And trust me, I won't be quiet for long.
There is much, much, much more to come!

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Wednesday, April 13, 2011

Election Day: The Final Results


Before I get into all the details, I want to take a moment to THANK YOU all for your support after last week's Election Day incident.
Shortly after my post went live, I could almost immediately feel your love.

While very few people publicly commented on the blog post itself, my email inbox was inundated with private words of empathy and encouragement.

I had crying Moms writing to me.

I had mad Dads writing to me.

Teachers, therapists, and complete strangers offered their support.

I even had one gentleman tell me that "a Cubs fan would not have done this", referring to my love for the Chicago Cubs and that the election judge wore a Chicago White Sox sweatshirt.
Thank you, anonymous sir, for making me smile!

And yes, I had one person tell me that I was over-reacting.
But that's OK, because you were only exercising your amendment right and I respect that.

One week has passed has I am no longer licking my wounds.
My tears are dry.
I am smiling once again.
And more than anything, the love that I have for my children is greater than ever.
I am stronger than that evil man and he can not break me.
And all of you....your support, words of encouragement, and offers of help made me even stronger.
I belong to an amazing sorority/fraternity with you, and special needs families stick together in good times and bad.

Earlier today, I spoke with the same ladies at the County Clerk's Office.
Their attitude towards the events of that morning had not changed, and I could truly feel their sincerity on the phone.
Investigations are ongoing.
Fellow Election Judges confirmed the events as true.
Phone calls had been made and phone-tag has been played.
But I wanted them to know that this man violated me and my daughter in a way that an apology would not erase.
I wanted an example made of him and his actions so that other Election Judges would learn what is acceptable and what is not acceptable behavior and conduct.

And I got my wish.
Because 10 minutes after that morning conference call, I received another phone call from that same group of individuals.
And they told me that the man in question would NEVER serve as an Election Judge again.

EVER!

Later that morning, a friend sent me this message:
"...That's the right decision! Remember anything you could have or would have said to him that day will not have the lasting effect that this consequence has. If you would have lectured him, he would have thought you were some "crazy special needs parent", but this decision came from his supervisors who clearly sent a message that his actions have consequences!"

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Tuesday, April 12, 2011

Tuesday Top Ten


10. Last week's fiasco on Election Day.

9. The emotional hi's and low's of being a Mom to a special needs child.

8. Advancing to the next level of swim for Kaitlyn: HOORAY!

7. Andrew informing me "It's Andrew's turn...Andrew swim school". Yikes. Gotta find a class for the boy now.

6. A Parent-Teacher Conference with an unusual guest: the Principal.

5. Getting my point across at above conference, even if it meant throwing some people under the bus.

4. 80 degrees in Chicago in April!!!

3. The wonderful support of other SN parents to my Election Day story. Thank you!

2. An upcoming ENT/Optho appt for Kaitlyn.

1. I love my kids!

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Friday, April 8, 2011

A Letter To My Daughter

Dear Kaitlyn,

Seventy-two hours ago, you were assaulted by something that I have worked seven years to protect you from: ignorance.
It may be the first time, but I am sure it won't be the last.
However, I promise you that I will continue to protect you as well as I can.
That is my job description.

You didn't know that the old bitty that you asked "What's your name?" gave you a look of annoyance.
I did.
You didn't realize that the tone of her voice when she said "Joo-death" (Judith) was sarcasm.
I did.
You didn't see her roll her eyes to the woman sitting next to her in reference to you.
I did.
You didn't pick up on her aggravation with you when she scolded you for touching that cord between the voting booths.
I did.
You didn't see me give her the look of "she's-my-daughter-I-will-take-care-of-discipline-if-I-think-it's-necessary".
Judith did.
You didn't feel my disappointment in a public official.
I did.
You couldn't read my mind as I walked up to her to hand her a card with your diagnosis, hoping to educate her closed-mindedness.
Don't worry, Judith couldn't either.
You will never understand the pain I felt when that nasty old bitty of a man (and I use the term "man" very lightly) told me to put a sign around your neck so that others would know that you had special needs.

I will never forget it.

But what I want you to understand is that I did what I thought was right at that moment.
I chose to protect you.
I chose to not acknowledge his ignorance and evil.
I chose to walk away.
I chose to keep you from witnessing further harassment and discrimination from two people who, in my opinion, do not deserve a second glance or even breathe the God-given air around them.
I chose to protect you from physical harm, because if that man could bellow words so cruel and painful, what would stop him from physically hurting you or I?

I chose to breathe and pray.

Please don't think that I let you down by not standing up to them.
My silence was my stance.
But I only kept my silence for a short time.
I want you to know that I made sure the right people knew what he did.
A lot of right people.
Hundreds of people have read your story, my dear.
And those people have been very supportive of you and I.

So don't look at me in your funny little way if I pull you a little closer to me while we are out in public.
Don't be mad if I don't let you learn to fly on your own a little sooner.
Go on and keep playing if you see me talking with a stranger a little longer about why your speech isn't perfect yet.
Let me stroke your hair a few more times.
Let me give you one more hug before you walk into school.
I won't shelter you.
I will still allow you to do all the things that you did before.
I will just watch you a little closer.
And I will listen to those mean people a little closer.
Because mean people suck.
(Kate, please don't repeat that word, OK?)

But most of all, I love you more than life.
You are my life.

Love, Mommy

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Thursday, April 7, 2011

A Sign?


See this beautiful face?

Next time ANYONE says anything about where I should hang a sign.....

...I'll SHOW them where they can put their sign!

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Wednesday, April 6, 2011

Why Darius Rucker REALLY Rocks!

I am sure you have seen this.
Or at least heard this.

If you haven't, pause my blog music on the lower right corner and sit back in awe of what our kids CAN do!

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Tuesday, April 5, 2011

Discrimination on Election Day @ It's Worst!

At approximately 8:25am, I entered the building, my designated polling site.
I brought my 7 year old daughter with me as time was tight and she needed to be at school at 8:45am.
She quietly interacted with the two ladies at my designated polling table.
One lady's name was Judith, but I did not get the other name.
There was a man with a black White Sox sweatshirt standing behind them.

I was given my ballot and covering device and walked to a polling station.
My daughter was standing to my left.
As I filled out my ballot, my daughter was playing with the cord that attached the booths.
All of a sudden, Judith walked up to my daughter and said in a very stern voice "Um, do NOT play with this, OK?"
I looked up and grabbed my daughter towards me and informed Judith "She has special needs. She doesn't understand that what she may have been doing was wrong."
In a huff, Judith walked away.
I went to place my ballot in the machine and walked out with my daughter.

I was upset that someone would choose to discipline my child in public for something so minor.
I was even more upset that she chose to direct her discipline at my daughter instead of coming to me as the adult and parent.
I walked to my car and retrieved a business card which has information about my daughter's needs as well as a website which someone could go to if they had questions.
I walked back into the polling place and walked up to Judith and handed her my card quietly saying "The next time you think about scolding a child, speak to the parent, first."
Judith immediately retaliated with "I was not yelling at your child!".

I said once again, "The next time you think about scolding a child, speak to the parent first. She has special needs."

I turned and walked away.
At that moment, the man standing behind her (wearing a black White Sox sweatshirt) screamed in a loud bellowing voice:

"THEN MAYBE YOU NEED TO PUT A DAMN SIGN AROUND HER NECK!!!!"

I felt my heart rise to my throat.
I kept walking away.
I did not turn to the man.
I kept walking away.
I did not address the man or his comments.
I kept walking away.
I was shocked at what I just heard.
I kept walking away.

My eyes welled with tears as my daughter held my hand and skipped in the sunlight.
Luckily, she didn't understand what he said.
Luckily, she doesn't know how I feel right now.
Luckily, she doesn't realize what injustice just transpired and how she was affected.
But she saw my tears.
And she said "Hi, Mommy. Don't be sad. Let's go to school."
OK, kiddo. Let's go to school.

Along with this man and Judith, there was another woman at the table as well as other tables with other people around.

The room was very quiet.
Almost Church-like quiet.
The room was not empty.
There were other Election Judges and other random voters in the room.
People whisper when they come to vote.
I could hear the room echoing with his hurtful words as I walked outside.
I know other people heard him as well.

I did not stay long enough to see if anyone came to my or my daughter's defense.

I didn't have a response for that mean man....until now.

If I could, I would go to that man and ask him if he knows God.
Any God.
Because if he said yes, I would have to tell him that we must believe in completely different Gods.
But that I would say an extra prayer to MY God for him.
Because MY God is a good God and would not allow the devil to speak to a child like that.
About a child like that.

Sure, I made some phone calls.
I filed a complaint with the County Clerk.
God was truly lifting me up from such darkness and pain because he put two beautiful women on the phone with me.
Who both had children with special needs in their lives.

You see, He is always working little miracles like that...that God of mine.

Now, if someone could please tell me how to get my broken heart out of my throat........

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Tuesday Top Ten (and a Par-Tay Invite!)



Yes, the 5 Minutes for Mom and the Ultimate Blog Party is still going on.
If you haven't met any of my new friends yet, click on the UBP photo or link above and it will take you to the site to be at this week!

In the meantime, here is my weekly Top 10 list.
It's no David Letterman, trust me.
But it's the Top 10 highs and lows and in-betweens this week in my house.

10. Andrew's ENT appointment that showered us with the ole "I've-got-good-news-and-bad-news" kind of junk.

9. The good news: Andrew's right PE tube is OPEN and PATENT! Can I get a "Yee-haw" out there????? YEEE-HAW!!!! (Yes, I'm from Illinois!)

8.. The bad news: Andrew's right PE tube is not only OPEN and PATENT...it is also FALLING OUT! Grrrr!

7. Oh, you want more bad news from the ENT you say? How 'bout "OOOH! Your daughter needs her tonsils out!". Um, she wasn't even the patient! I was just asking a question! Mamma always told me to keep my big mouth shut!

6. Spring Break. It would have been better had the kids read the memo (note: they both can't read yet!) that this also meant "SLEEP IN AND DON'T PLAY WITH LEAPSTERS BEFORE 8:00AM!" I need to hide those batteries at night! *sigh*

5. Library hour with the kids.

4. Warmer weather!

3. Planning for an "interesting" Parent-Teacher Conference on Tuesday.

2. Hearing my daughter say "I love you" clear as a bell. Love perfect articulation!

1. I love my kids!

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Monday, April 4, 2011

VOTE for a Voice


I have been given yet another opportunity to interview a wonderful woman who is doing the things that I can only dream of right now.
And I want you to meet her, too.
But before you meet her, I have a favor to ask of you all:

CAN YOU PLEASE VOTE FOR HER?

Mary Clare Tarpley is a spunky woman with dreams and drive.
And she has been selected as one of the finalists for the Georgia's 2011 Impact Award sponsored by Parent to Parent of Georgia.

Have I mentioned that I would LOVE if you voted for her?


Here is a little background about Mary Clare Tarpley and our interview:
************************************************************************************
AM: Tell me a little about yourself and your children.

MCT: "I am an elementary school teacher and am married to Brad Tarpley, also an educator. I have been teaching for over 17 years. I have an undergraduate in Early Childhood Education PreK-5th, a master's in Reading Education K-12 and an educational specialist in Elementary Education 1-8, as well as am a certified Reading Specialist. We have been blessed with 2 children~Maggie (8 years) and Luke (2years). We have a wonderful support system, as my mother and father have retired from teaching to care for Luke, take him to and from therapy and to take Maggie to and from school. Maggie was tongue tied as a baby, and required surgery and speech therapy through Early Intervention. She is in the gifted and talented program, thriving as a 2nd grader with no speech problems today. Luke has Childhood Apraxia of Speech and Dyspraxia of Motor Movement. He receives speech therapy 5X30m. per week and occupational therapy 1X60m. per week. We also do at home therapy daily with speech, OT and PT."

AM: What inspires you?
MCT: "Children inspire me~they truly are our future. This quote encompasses how I feel: Our children are not ours because they share our genes... they are ours because we have had the audacity to envision them. That, at the end of the day... or long sleepless night, is how love really works. --- Unknown We, as educators, must treat these children that are entrusted to us, as if they are our own. Passion, dedication and innovation are the keys to being a master of the craft of education. Although it is not easy, the joy of changing just one life makes my heart happy."

AM: What is the Parent to Parent Impact Award of Georgia all about and why do you think you should be the award recipient?

MCT: "Parent To Parent of Georgia is a way for parents to obtain information about special needs. I have used this organization on many different occasions to inquire about laws and services. They recognize an educator and a community member for their service with the P2P Impact Awards yearly. My teaching partner, Melanie Langston, actually nominated me. I believe that there are many worthy nominees, but I would most like to receive the award to enhance instruction with technology."

AM: Tell me about the Olive You Foundation.

MCT: "I founded The Olive You Foundation Charitable Fund in honor of my children, who both have had or have speech difficulties. It was very frustrating for me to find that insurance would deny speech therapy for my youngest child, Luke. Luke has Childhood Apraxia of Speech and needs intensive therapy in order to overcome his communication disorder. I saw how difficult it was to find funding to provide this amount of therapy and felt called to start a fund to assist others experiencing the same problems. Although we are just in the beginning stages, we hope to one day be able to give grants to children in need of speech therapy. Currently, I am assisting people with finding funding and grant writing."

AM: Along with your blog, what social media sites can people find you on and follow you?

MCT: Unlocking Luke's Voice on Facebook and The Olive You Foundation on Facebook There is also the Unlocking Luke's Voice website and The Olive You Foundation website

I told you she was AWESOME, didn't I?

Now for the moment you have been waiting for: the video and voting.
You can view her entry video below, just please go to the right lower column of my blog and "pause" my music.
I apologize for the inconvenience.



Please click here to vote!
Just remember to scroll down and find her name...a name you will NEVER forget:

Mary Clare Tarpley
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Sunday, April 3, 2011

My Kinda Party!

Welcome to my party!


Meet some of my great friends here!


Get to know us all!


We are Moms, Dads, caregivers, you name it!


And we all have something to say.


Some of us a just a little louder than others!


I am Apraxia Mom: a Mom of two kids with...yes, you guessed it...APRAXIA!


And it's rough.


We struggle with speech and language issues, schools and insurance companies, neighbors and family members.


It's no walk in the park.


But I wouldn't have it any other way!


These kids are my gifts from God...what I choose to do with them is my gift to HIM.


You can find me here on my blog, or on Facebook or Twitter as well.


Talk to you soon!


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Friday, April 1, 2011

April Is Here!


And hopefully that means Spring warmth will be here soon, too!

Happy April 1st!
And a big THANKS to Teri Mauro for allowing me to share this months' calendar with you!

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