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Monday, January 31, 2011

Friends Of Man !!!

I applied for the Friends Of Man grant back in December and let me tell you...this was not an easy grant to get. 

If you recall me "stalking"a certain neurologist before Christmas and complaining about having to pay $25 for his signature~this would be the grant that it was for. 

Well, with ALOT of
effort,
phone calls,
emails,
faxes,
late nights,
skipped lunches,
prayers,
prayer requests,
and help/support, from Tiffany Johnston Sparks at Walton Options. 

I am pleased to announce that we will be receiving a grant to fund therapy at the Kaufman Children's Center and Kaufman KSLP materials through Friends Of A Man.

http://www.friendsofman.org/

Now~this is why I went ahead and announced The Olive You Foundation before we were fully functional because even though I don't have the money that I would love to be able to give everyone that needs speech therapy and communicative devices for their non verbal children~I can offer them hope and I can offer them advice.  I can also share the knowledge that I have about grant writing. 

It isn't rocket science, but it can be difficult~and oh, so worth it. 

I already helped some people with various questions this weekend.  YIPEE!!!  Go ME!!!

I sent out few emails directing them in the right direction and posted a few suggestions~and it totally validated The Olive You Foundation~to give back and to help others like we have been helped.

Luke's First Video

I was talking to Scott "Panther" Fisher on Saturday night~when I infomed him of his BIG job of Multi Media for The Olive You Foundation~LOL! 

He shared with me that he had found the video that he had first made of Luke on youtube.  He said that before youtube yanked it (because of copyright from the music), the video had over 85,000 hits. 

85,000 HITS!!! 

OMG~!!! 

What is really crazy is that neither Scott nor I had shared it on youtube. 

(Or at least I didn't think that I had~I did in fact unknowingly post it to youtube at one time, but that wasn't the post that had those 85,000 hits.) 

It also had pages and pages of comments Scott said.  It breaks my heart to think that people could have been asking about Luke because of their children going through the same thing, but at the same time it makes my heart smile that some of those comments were probably encouragement and the sharing of their apraxic success stories. 

I just keep thinking...WOW!

If everyone (or even half of the people that viewed it) had donated a dollar to the cause...how much money we would have to fund therapy and communicative devices for others.

Anyway, enough talking about what could have been and the video...check it out for yourself and let's see how many comments and views we can get.

http://www.youtube.com/watch?v=pk_DDmFGSr0

Friday, January 28, 2011

My Heart~


I guess I am just the kind of person that gets wrapped up in other people's lives~their struggles, their fights, their causes and their amazing stories. 

I have a heart like that~and I am so grateful that I do.

~Sometimes that heart gets me into trouble. 

~Sometimes that heart allows me to volunteer to do too much. 

~Sometimes that heart hurts because I can't do as much as I want to do.

~And sometimes that heart feels so full...
full of joy for what I have accomplished,
not just for Luke,
but for others that are in our same boat.

I answer lots of emails, lots of phone calls and lots of facebook messages about apraxia and grants.  From therapy, to diagnosis, to help with finding a non profit~I give lots of information out.  I must admit that I feel like I am sharing a little bit of what I have learned along this journey to them.  I hope that I am helping them and their children.

I dream of one day being able to do this for others...with the OLIVE YOU FOUNDATION.

More about the plans for Olive You~

The Olive You Foundation will be created in honor of Maggie and Luke Tarpley. Both had/have speech difficulties early on, but with ongoing therapy and support they found/are finding their voices. We will have a parent organization that is a 501(c)(3). This ensures that all donations to The Olive You Foundation are 100% tax deductible.


OU will assist in helping children with speech and language disorders by funding supplemental therapies and treatments. OU will also assist charitable organizations who serve children with communicative disorders.

Our purpose will be to provide grants to help children who have speech and language disorders. Our goal is to allow children with communication difficulties the chance to better express themselves. The Olive You Foundation will strive to provide children the opportunity to receive assistance to help improve their communication.

Olive You Board of Directors~
Mary Clare Tarpley, Founder and Executive Director
Charlotte Duplantis, President
Melanie Langston, Vice President
Brad Tarpley, Treasurer
Rachel Allen, Secretary
Kimberly Boals McDaniels, Director of Outreach
Amy Struble, M.Ed., CCC-SLP Advisor
Angela Broderick, Advisor
Scott "Panther" Fisher, Multi-Media



“The Board of Directors of Olive You hopes that we can help others with their communication like those people and organizations that helped Maggie and Luke. Their efforts are the reason for this organization.”

- Mary Clare Tarpley, Executive Director of the Olive You Foundation

Thursday, January 27, 2011

Poor Baby

Poor Baby Luke is sick ;(
It makes me so sad when he is hurting and I can't help him.


He is so good and even told my mom today when he puked and she was cleaning up...Me help!

He didn't get to have therapy yesterday or today because of him not feeling well. 

Today we signed the papers with Babies Can't Wait to start having our 3 speech therapies from them through Amy Struble of Keystone Therapy.  Amy will also continue doing the private therapy 2 times per week.  Our private therapy is going to be funded through a gracious grant from The Lindsay Foundation for the next 3 months.

I am beyond ecstatic over this.  Can't you tell~I can't stop blogging about it! 

I just know what this consistency will mean to Luke.  Over and over again in reading and researching Apraxia I kept seeing how frequency and repetition is so important.  Now we will have all three~consistency, frequency and repetition. 


Stay tuned...big things are going to be happening ;)

Wednesday, January 26, 2011

OT at home


We worked really hard to get the garage cleaned out and set up for our at home therapy program.  I finally got around to taking a few pictures while we were "working". 

Luke is so funny in the "beans n rice" tub. 
He LOVES it. 
He begs to play in it. 


I LOVE seeing him so happy. 
I also LOVE that he gained not one, but two new words...
beans and cheese!
I am not sure if they were the real words or just an approximations,
but I'll take either~!!! 

Here is a pic of him...right as he was saying CHEESE~


SO proud of this baby boy and all of his hard work!

Announcing The Lindsay Foundation Grant ;)


So~Now that we are public again~Let me share the great news with you...

We applied and received a grant from the Lindsay Foundation that will fund Luke's private speech therapy for the next 3 months.

This means that he will start having speech therapy 5 times per week, something that I have dreamed about since realizing that he was really Apraxic this summer.



I posted on facebook that Our God is An AWESOME God~and I was actually singing it as I posted~

Because He is~

~He has been so good to us through this journey.

~He constantly opens doors when others are shut.

~He provides alternate routes when we hit those roadblocks. I am so thankful!


And although I am rejoicing in our joy, I am also reminded of the mother that founded the Lindsay Foundation. 

I had the priviledge of speaking to Laurie at length this weekend and again when she called to deliver the good news~and I am in awe of her strength, her accomplishments, and of her love and devotion to her daughter.

Lindsay would be 27 this year.  How awesome is it that she has kept Lindsay's memory alive through helping other children!?!  What better way to honor Lindsay's life than to support others in their struggles with medical services and therapy.  http://lindsayfoundation.org/

Laurie will now be another member of our family, another remarkable person that we have met and all because of this disorder called Apraxia.


I hope that we can eventually start our own non profit and help others like we have been helped.  It is my dream to "pay it forward".  Stay tuned~it is definitely in the works...

Going Back Public

It was with a heavy heart that I went private with our blog in the first place. 

There have been so many people that I have helped through this blog~and now that we are "in the clear" with having services for the next 3 months~I am going back public. 

It is so therapeutic after a long and hard day, to sit down and blog about it.  I guess I have always been a writer of sorts, scribbling in a journal~my dad has kept a journal for years.  And I must say...it rubbed off on me and on my Maggie.  She, too, journals and just asked to start her own blog.  She is also working on a book :) about having an Apraxic brother. 

That's my girl~

PS Luke said No More yesterday! 2 words~nevermind that he was sassing us~TWO WORDS!!!

That's my boy ;)

Saturday, January 22, 2011

Language Explosion

We've had a language explosion in the Tarpley house, but it wasn't from who this blog is mainly about.  ;) 

Maggie broke out of her quiet shell at school and lost a star today. (this is the first time ever in her school career)

Honestly, it was very hard for me to keep a straight face and not bust out laughing.  I am also very proud that she has proven that she is human.  I was beginning to wonder... (LOL)

If she only knew how much trouble I stayed in at school for talking...on second thought, maybe that isn't a good idea.

It has been said that I talk ALOT and that I never let anyone get a word in edgewise. 

It has also been suggested that Brad doesn't have to talk because I talk for him and that Luke is the same way. 

Maybe Maggie is more like her mama than we thought ;)

Friday, January 21, 2011

Another UGH day that ended in a laugh ;)

Thursday~
Another day of calling insurance, doctors and therapists on my breaks (which are very few).  I found out that OT was correct with their billing. 

We owe them the full amount until we reach our deductible ;( and our deductible went up.

It seems like as soon as we get a leg up on this ladder, we are pushed back again.

I also paid a visit to our neurologist's office.  I called several times, as did insurance, and left a few voicemails.  When I didn't hear back from them after 24 hours, I just dropped in.  They (like they always do) explain that it was someone else's fault and, of course, that person wasn't in. 

I left another message for them to recode Luke's diagnosis. 

I also revisited the records dept. and let them know that I had requested Luke's records 3 times already and still hadn't received them.  They looked it up and supposedly the company that they use says that they completed this request a week ago, so I have to wait and see if it arrives in the mail today.  If not, I have to call some 1-800 number and request them again. 

When I got home, I was tired, really spent. 

And then Brad came in with the kids~Maggie was all excited about the 100th day of school coming up and Luke had just yelled Mama, Mama at a mannequin in the mall dressed in lingerie.

Now that was a great end to an UGH kind of day ;)

Wednesday, January 19, 2011

Aggrivated ~ !!!

I am so aggrivated with the neurologist that was supposed to finally submit the diagnosis to insurance.  We waited close to 2 hours to see him on the sixth of January and he just submitted his diagnosis and get what he submitted as the code...seizures and epilepsy!!! 

What in the world?

Thank the Lord that we don't have epilepsy or seizures! 

I have been calling two or three times a week and checking on it with insurance, because if not~I would have just trusted that he did the right thing.

I would not have a job if I made as many mistakes as this guy has.

And all the while, he is getting paid by insurance and me (with co-pays and deductibles) and we are still not getting our therapies covered by insurance.

I am beyond ticked! 

And to make matters worse, I got a bill from OT today~seems like they have gone up on our co-pays ;( and not just a little. I am hoping and praying that it is just a mistake.

Tuesday, January 18, 2011

Small Steps In Speech Grant

We received word from the Small Steps In Speech Grant that they would be providing a grant for Luke to receive 4 days of intensive therapy at the Kaufman Children's Center this spring.

We had faith that the Lord would provide this for us and make a way, much like He made a way for our first trip to see Nancy Kaufman. 

And Praise the Lord~he made a way! 

We are scheduled to go back to the KCC during our spring break and are greatly anticipating the trip.

Thank you for your continued support, prayers and encouragement.  We sincerely appreciate it. 

Going Private

I hate that I am having to go private with the blog, but because I put everything on the line and am as honest and as blunt as I am...it is a definite liability. 

When I met with our service coordinator on Friday to sign the paperwork to add an extra speech session (making 3 per week from EI), I realized that she was questioning me about what we were doing in addition~almost hinting that if we were doing more (privately) they wouldn't be able to give us this additional segment. 

It was then that I knew I had to either delete the blog (certain posts) or make it private. 

I must do this extra step in order to protect the services that we have fought so hard for. 

If you remember correctly, when BCW found out that we were doing occupational therapy in the clinic setting, they took it away from us through their agency and made us get it privately through our health insurance. 

Our insurance, United Healthcare, only provides 40 occupational therapies per year. 

If that happened to speech~it would all be out of pocket (as insurance still has it coded as a developmental delay, even though we have a diagnosis of congenital anomaly) and it would be detrimental to Luke's progress.

I thought long and hard about going private with the blog because
~the more people that know about apraxia, the better
~the more people praying, the better
~the more people rejoicing in our Luke's progress, the better
~the more people getting information and help through our struggle could lessen others struggles
~the amount of people that have already been touched by the blog is HUGE and I feel lead to share this journey with others

This is why I was torn~going back and forth with the idea of going private~ultimately going private and then going back to public and then back to private.  I did delete and edit a few of my past posts...continue reading, following, praying, and cheering as we continue our journey. 

:)

Saturday, January 15, 2011

Loud Mommies

I didn't sleep that well last night~neither did Luke.  So after he asked for another "baba"~and he went back to sleep, I went online and guess what I stumbled upon....?

LOUD MOMMY!

In walks my husband and he starts reading over my shoulder and then came he busted out with...you sure have found the perfect site ;)

Yep, I am a LOUD MOMMY, especially when I need to advocate for my children!

http://www.loudmommy.com/ is a new website that is dedicated to helping autistic and apraxic kids obtain iPads and applications. 

This site is dedicated to mommies and all the trials, tribulations and triumphs we have as mothers to "differently-abled" children. 

Please go by the website and check it out.  It was just launched at the first of the year.  The cool part about it is that she blogs and invites guest bloggers to contribute posts.  It just goes to show you what one loud mommy can do when she puts her mind to it~

If you would like more information and an application, please go to http://loudmommy.com/apply/

And from one loud mommy to another~I wish them the best of luck!!!

Thursday, January 13, 2011

The Phone Call


My heart went into my throat when my phone rang today and it said...Babies Can't Wait~

All I could think was...here we go again. 

I am grateful that it was just them calling to schedule a time for us to sign all the paperwork for the additional speech segment.  She also asked me what school system we would be sending Luke to because she was going to start working on setting up a "transition" meeting with them in March.  I guess this is where we get to sit down with the school system and they get to tell us what they can offer us in the form of therapy and education. 

WOW...Could it really be that we have almost been doing all of this for 8 months already?  It seems like yesterday when I first heard the words APRAXIA and was asked if I had ever heard of it.  Now I can spell it backwards, plus regurgitate all sorts of random information and research on the topic. 

Luke has grown alot along the way...from the attention span of a gnat...to being able to enjoy a television show and an entire book ;)

He has gone from no sounds to practicing sounds during play.

He used to not be able to imitate or repeat a sound or word, but now he makes an effort.

He is using sign in combination with some approximations now.

His strength and balance have improved, too.

There's still alot more to this journey, but we have come a LONG way...

Wednesday, January 12, 2011

A Mother's Embrace Is Forever

Margaret Jeane Broyles Tarpley

It doesn't seem like it has been 4 and a half years since we lost her.  I think of her all the time.  I think about how things would be different if she didn't have to leave.  I remember all sorts of things about her. 
~How she would tap her pointer finger nail on her pursed lips when she was nervous
~How she always referred to herself as Mrs. Charles Lee Tarpley
~How she could get fired up in a moment's notice about school or sports ;)
~How nobody wanted to sit in front of her at football games because they would get pounded by her pom pom
~How she would blow the horn and all the guys would run out of the house and unload the van
~How she raised such an amazing son (and suggested that he ask that Duplantis girl out)
~How she agreed to retire to care for our first child
~How she exclaimed "what are we going to do with a girl" when we told her we were having a girl
~How hard she fought cancer and how she never let it stop her
~How she loved us, even with all our imperfections

I wish she was still here.  I wish she would have been able to see Luke.  I know she would have adored him.  I know she would be so proud of her Maggie.

Lucas Charles and Mary Margaret

Not a day goes by when Maggie doesn't talk about her, her Gigi.  She remembers so much about her. 

I see how Brad and Maggie miss her every day.

We love and miss you~

Tuesday, January 11, 2011

Floored


My hopes were definitely not high, I know by now not to get excited about anything that happens with our early intervention agency.

We formally requested another speech session from them and presented it today at a "coaching meeting". 

I didn't attend.  I couldn't bring myself to sit through another one of their meetings.  I also couldn't handle more disappointment. 

I honestly did not think that they would approve our request.

So when our service coordinator called me, I was prepared for the worst. 

I must say that I was happily suprised though. 

She let me know that the coaching team had approved for Luke to have an additional speech therapy one time per week for 30 minutes for the next 3 months.  The "coaching team" will meet again in 3 months and decide whether the extra speech has helped him. 

She went on to commend us for all that we have done for Luke and for being so involved in his therapy.  She said that all of our work had not gone unnoticed.  She also reminded me that it hasn't been BCW's fault, they want what is best for Luke, they just have to follow the guidelines that they are given from the state.
 
Wow~!  I am floored. 

Floored that they finally agreed to another speech session...this brings us to the grand total of 3 (3X 30 through them) at least for 3 months ;)

When I pick myself up off of the floor, I'll let you know.  ;)

Monday, January 10, 2011

MMO


Mother's Morning Out

Luke went to his first day of Mother's Morning Out today.  My mom took him after his morning speech therapy.  Thankfully, she took a picture and texted it to me.  I wish I could post it, but I still don't know how to use the new phone ;)  LOL! 

Luke loved MMO so much that he didn't want to leave when we picked him up.  He seemed a little ticked that his playtime was ending so soon (he stayed for about 2 hours).  The girls said that he did well, followed directions, made and played with friends and even talked.  They went over body parts and they said that he said them with them.


My mom also seemed to like him going, too.  She has always been apprehensive about letting him go, but she handled it really well.  She liked the nursery teachers and especially the director, Mrs. Marbeth (really though, who doesn't?)  What would FUMC do without her?  She is such a blessing!


When we called to check on how his big day at "school" went my mom told us that he did extremely well...he didn't bite anyone. 

I don't know who I am more proud of...Luke or Suggie...!?!

Saturday, January 8, 2011

Neurological Impress Method


Finally, something I really am an "expert" at that I can share with you ;)  Although I try to be an expert on everything that I do~I really am certified for this one.

I have been concerned since the beginning of this journey about Luke's future reading.  He wouldn't sit still to listen to a book didn't even show an interest in them like my daughter, Maggie, did.  Of course, this was in the beginning and this was also when he was alot younger.  (plus~he is a boy and he isn't Maggie.  I never compare the two, I learned long ago that siblings should never be compared)


After using various methods, including NIM, Luke now likes books and even chooses books to "read" by himself now.  Maggie has been a "reader" since about 12 months of age.  I swear she had "book sense" back then.  I have actual video of her "reading" when she was about 18 months.  I think that all of the methods that I used with them assisted in their love of books, especially NIM. 

If you don't know, I am a Reading Specialist.  Reading was my passion, "BC"........meaning before children!  I still love reading and the teaching of reading.  I am excited to be able to share this method with you.  It works for any age, any stage and any level.

NIM as it is often referred to, stands for Neurological Impress Method.  I have used this method with students, with my own children and shared it with others.  I have seen nothing but positive outcomes using this method.  The good part is...it is probably something you already do with your child and it only takes about 10 minutes a day~!!!

Introduction

For the sake of consistency, what is commonly called “neurological impress” or
“neurological impress method” is called “neurological impress activity” in this module.

Benefits
Here are some benefits of using a neurological impress activity for beginning readers:
Develops reading fluency
Helps impress the words into the learner's memory
Helps learners imitate correct pronunciation, intonation, and phrasing
Increases confidence in reading
Models reading fluency and mechanics
Provides a pleasant, non-threatening reading experience
Provides immediate feedback and success in reading

Guidelines
Here are some guidelines to follow when using a neurological impress activity:
For best results, do this activity daily over a period of several months.
Be aware of cultural considerations in a close working relationship such as this requires.
Try this procedure in nonformal settings where literate people might teach other family members or friends:
     Use texts with words the learner can already read.
     Use a regular size book

Steps to use NIM

Sit side by side so that the teacher/reader can speak into the learner's ear.
Tip: Determine which hand the learner writes and eats with and sit on that side of the learner.
Jointly hold the book between you.
Begin by reading by yourself (teacher/reader)  The child/student can chime in and read with you when they feel comfortable (not required, but some kids like to...don't discourage this)
Read a little faster and louder than the learner.
Track the words smoothly with a finger as you read.
Note: This allows the learner to hear the word just before saying it, and
imitate the intonation and flow of the language.
Occasionally lower the volume of your voice to allow the learner to lead the reading.
Help the learner gradually take over tracking by guiding their hand smoothly under the words.

Sources
Aukerman 1984
Borneman 1988
Heckelmann 1969
Ringenberg 1991

HAPPY READING~!!!


Friday, January 7, 2011

Dear Lord~Prayer from a friend


Elizabeth Owens Steedley posts on facebook in her status: How can I pray for you today?  It is the most powerful post and what happens from it is even more powerful. 
 
I asked her to pray for Luke and for all that is going on with the pending grants and fundraising.  
 
She shared her prayer with me and I just couldn't stop reading and rereading it.  It is one of the most beautiful prayers I have ever read. 
 
My favorite part is the end~I bolded it.  It reminds me of what I keep saying...what a testimony Luke will have when he does speak! 
 
Here is the prayer~ 
 
Dear Lord,
 
I thank you for Mary and for the opportunity to pray for Luke.
 
Lord, I thank you for the progress that has been made so far in his treatment.
 
I pray that you will continue to put the people in his path that are needed to unlock his voice.
 
I pray for wisdom for those treating him and that they would find new and imaginative ways to care for Luke.
 
Lord, I pray for the Tarpley's as they face the mounting financial burden of this undertaking.
 
I pray that you will open the windows of Heaven and that blessings will fall upon them.
 
I pray that they will be amazed by the grants and financial blessings that are afforded to them.
 
I pray for blessings upon Mary, Brad, Maggie & Luke and that through this, they would draw closer to each other and closer to you.
 
I pray that we will hear from Luke's very own voice the Praise and Glory that YOU deserve for the miracle that is happening in their lives.
 
In Jesus' Name.
Amen.

Thursday, January 6, 2011

You'll Shoot Your Eye Out, Kid

            Doesn't Luke look like the kid from A Christmas Story, but way cuter? ;)


The title of this entry is You'll Shoot Your Eye Out, Kid~because I had to suck it up and hold my anger in today, all so that I wouldn't shoot my eye out!

My mom reminded me as we went on hour 2 of waiting in the doctor's tiny office for the neurologist to see us, that I needed to keep my eye on the prize. (the prize being the final outcome that this office visit would bring)

We have been subjecting Luke to all of this testing (blood tests, EEGs, attempted MRIs) for over 4 months now, all in order to receive a diagnosis that would happen today. We knew what it would be. Congenital anomaly~which would now mean insurance would have to pay for 40 of Luke's speech therapies.
Sounds great, huh? But to put this in perspective for you...40 speech therapies would last us less than 3 months.
Now back to the story, I had to hold in the hostility from the extremely long wait, the disgust with him seeing people who had appointments after us before us, the outrage that this "jackleg" had the nerve to keep charging me ridiculous amounts for 5 minutes of his time and less than 20 seconds for his signature (but that costs $25 per piece of paper), the anguish that I had left my job again to come to this appointment, the frustration that the waiting room was filled with people riding our system with disability and unemployment, and the sadness that my little man had to be told that he couldn't go "ome" when he was crying and pleading to just go and take his nap.

I put this all on the back burner and just grimaced when he came in and said "Good Morning"

Seriously...did he really say good morning?

I held it in and focused on the hoop that we needed to get through. The correct diagnosis and code. When he started to try to copy what I was saying that we needed for insurance down, I gave him my bulleted list. He took it and said that would save him some time and that he would do include those things in his letter to UHC and correctly code the diagnosis as autism and congenitaly anomaly~what? Autism? He totally didn't read Luke's chart. I corrected him and then he read Luke's chart and corrected himself. If I could have gotten him to say autism from the start, we wouldn't still be appealing insurance with all these claims. He only has 1 of the 15 indicators for being in the spectrum of autism, that being lack of speech. DUH?

The doctor told me that he had talked to the doctor with the Friends of a Man grant. He said he explained to him why therapy was needed and that insurance wasn't helping us. He thought that we would get the grant. I wonder if he told him that or if he gave him the correct information about Luke...?

Please pray that the doctor does what he said he was going to do and sends our insurance the correct coding and letter of medical neccessity for the therapies that Luke needs.

Now, I am off to find another neurologist because this guy wants us to come back in 3 months for another appointment and for us to do another MRI~not happening!!!

My eye isn't shot out~but my nerves sure are ;)










Wednesday, January 5, 2011

Making Our Way~


Making Our Way...Through the Red Tape and Paperwork~

I really feel like I have checked and crossed off TONS of things on my 'To Do' list.  So much so, that I feel compelled to post the list or at least tell you what is crossed off~

1. Faxed my complaint letter to United Healthcare.

2. Called UHC and spent all morning on the phone with various departments tracking    down some information.  Gained some valuable tips from a guy about some of our benefits~more on this later.  Told him at the end of our convo that he was an angel working for the devil~yep, you know I did!

3. Called Tifton DFCS and found out that our Katie Beckett Waiver is listed as 'pending'.

4. Followed up on the KBW and found out that our caseworker is in Irwin County.  I contacted her and completed our phone interview today (where they just wanted to be sure that Luke didn't own any farm animals or agricultural land~seriously, that was one of the questions). 

5. Faxed a copy of our insurance card and one signed document to our caseworker~who then said our file was ready to be sent to Atlanta for the final review.  We have made it this far, so continue praying that this waiver comes through.  It would give us Medicaid coverage for Luke.  (We will have to reapply every year until 18 if needed, but it would be a HUGE benefit)

6. Opened 3 letters from UHC denying the faxed letter that I sent  ;(

7. Emailed and checked on the grants that we have 'pending'.

8. Called and checked on the status of requested medical records from various doctors at our pediatrician's office~verified that they had been been received and scanned in December.

9. Left 2 messages at pediatrician's office and spoke to someone about him recoding because they now had records from neurologist and geneticist~holding my breath to hear back from them....

10. Verified appointment with neurologist for TOMORROW~yep, this is the same one that I stalked before Christmas and also still charged me $25 for his signature~!!!

11. Made, confirmed and rescheduled LOTS of therapys for this week ;)  We have a new play therapist who I will meet on Friday for a conference BEFORE she ever works with my baby.  (if you don't get this one, go back to the You're Fired post)

12. Called and filled Service Coordinator at Babies Can't Wait (insert belly laugh from Kim Grace-Brez) in on what we have in the works.

13. Emailed back and forth with SLP about our request for adding another speech session (this would make it 3 from BCW and 2 private).  With a little help and collaboration, we came up with a pretty convincing write up...if I do say so myself.  I was reminded that they will probably not give this to us, but would make suggestions for the SLP to try.  They meet next week~so prayer warriors...please pray that the coaching team has empathy and makes the right decision for Luke.

14. Talked to WarriorTherapyMom last night for over an hour (bless your heart). I know she probably thought I was a stalker at first for contacting her, but felt better when I found out that she had reached out to other bloggers, too.  We shared some awesome conversation.  I am so thankful for her message of hope.

15. Networked with some people and places about recycling phones for Different Iz Good's Gift a Voice Project and mailed our first package of donated phones to DIG!

16. Successfully acquired a new DROID cell phone for free~now the bad news, the KIN studio is closing and I will lose all of my pictures on my old phone and they couldn't transfer any of my contacts on my KIN :(

17. Signed a fabulous report card and gifted/talented report for a spectacular girl that I am so proud of.




18. Started a new list of things to do for tomorrow...and now I break into song...Tomorrow, Tomorrow, I love ya...Tomorrow...you're only a day away.

Tuesday, January 4, 2011

WarriorTherapy Mom's Blog

Mr. Sugar, age 4

This is copied from WarriorTherapy Mom's Blog at http://www.warriortherapymom.blogspot.com/  I found her blog when I started blogging.  I was truly inspired by her writing, her passion and her committment to her little man.  She reminded me of myself, or at least of who I want to be.  I am sharing her latest post with her permission~it was too good not to share with others.  I pray that I can write a similar entry when my Luke turns 4.  ;)

What a year this has been. On January 1, 2010, Mr. Sugar had just turned three. He had five words and still only a handful of sounds. For the most part, he was totally nonverbal. His level of activity (proprioceptive sense) was off the charts. He was very aggressive and very frustrated. He could NOT sit still. The only speech therapy he would participate in was play based therapy. My husband and I were praying a lot. He was going to speech 4 times a week and OT 1 to 2 times per month. He also participated in an after school class for receptive language and not to far into the year we started music therapy one time a week. We had just been given the diagnosis of Apraxia of Speech. I was confused, worried, felt like I was the only mom out there going through this, exhausted and praying for the best possible outcome.
Fast forward- Mr. Sugar just turned 4. We are now in a better spot than I or anyone of his therapists may have imagined. Now, people who meet him have no idea the journey we have been on and those who have not seen him in awhile can not believe the progress that has been made. They keep reminding me that his progress has been astounding and better then anyone had expected. We just had him tested to see where his expressive and receptive language is. They completed three tests.


The first test was an articulation test. (Articulation Goldman Fristoe 2) One year ago (he had just turned three) he was at a 9-12 month level. Now he tested at age level. He can make all the sounds an average 4 year old should make. WOW!


Next they tested his vocabulary. (I forgot the name of this one) One year ago they could not complete this test because he was nonverbal. Now he scored where a 4 year old should score in vocabulary. Again, he is at age level- Amen!


Finally, they tested his comprehension and general receptive and expressive language skills. (PLS4 test) One year ago this test indicated that he had a huge gap between his expressive and receptive language. Now, he has closed the gap and his receptive and expressive scores were almost the same. He has made huge strides, but did score a little below age level on this one. He missed questions like- 'Point to the black cat with the red sweater that is sleeping'. He was then shown a set of pictures including a white cat in a red sweater sleeping and a black cat in a red sweater jumping and a black cat with no sweater sleeping. You get the idea. Since he was a little behind on this test, the speech therapists will now focus on auditory processing, in addition to using his expressive language appropriately in communication with others.


Going back to the proprioceptive sensory issues (what others may see as hyperactivity). One year ago he was bouncing off the walls many of the time. He was more aggressive and frustrated. A year ago he wore his weighted vest for maybe 5 hours a day. We used a weighted blanket at home when he needed to calm down and sometimes when he watched TV. We did lots of "proprioceptive therapy" at home: jumping in a bounce house, trampoline, wheel barrel walking, carrying heavy items, etc. A year ago, speech therapy was partially about getting him to focus on what they were even doing in the session. It was all play based because he would not sit on a chair for 5 minutes and focus.

Fast forward- Now, he only wears the vest during the time at preschool when he needs to focus (maybe 1 hour) and sometimes at speech therapy. He doesn't like or need the other weighted therapy anymore. In addition he doesn't want to wear the vest in front of others. He has become extremely aware of others attitudes towards his vest and doesn't want to be seen as different. (This is when I surely wish people- often times adults- would not judge the vest) During his speech sessions he focuses for long periods of time at a table and works just on comprehension and articulation. He is learning how to help himself calm down and focus when there are too many outside inputs. He is so much more gentle with others and so happy. You can just tell how much less frustrated he is in his daily life.

He is the hardest working boy I know. We are still going to speech 4 days a week and OT once a month (for his high proprioceptive sense). I am not sure how long we will need to go 4 days a week, but right now he is growing and learning in leaps and bounds. I guess as long as I don't go crazy driving to speech and as long as he loves to go, we will continue. He is doing awesome in school and it makes my heart smile to see him interacting with the other children. He has come so far and while we still have room to improve (as does every child) we are in such a good spot right now and thus I don't have as much to blog about anymore. We no longer do music therapy and we don't use any state therapy anymore.  In general things are all going relatively well. My biggest difficulties with Mr. Sugar as of late are typical 4 year old boy things- I guess thank goodness for that!

And I am in a completely different spot myself.

One year ago I would have described myself as an emotional wreck and totally overwhelmed. I started this blog to reach out to other parents across the country to try to connect with and feel not so alone on our journey. So many of you have written me beautifully uplifting comments and emails. Thank you all for helping me learn and grow this year.

This blog was an incredible outlet for me to vent, to reflect and sometimes ask for suggestions. I have learned so much this year about myself and am in a stronger place now than ever. I am SO SO thankful for this journey! I have become a better mother to both of my children and all around more zen- like.

I wish you all the best on your journeys. I am going to take a break from blogging (as I don't have as much to talk about anymore) and concentrate on enjoying all the precious moments with my kiddos. While our therapy journey is not totally over, WE are ALL in a much more "ZEN" spot. So, I guess we found some Zen in 2010. Bring on 2011!

Monday, January 3, 2011

Help with Assistive Technology

Do you or a family member have a communication disability and need an iPhone, iPod Touch or iPad?


Eligibility Requirements for Gift a Voice Project sponsored by DIG

■The individual you are applying for must reside in the United States of America.

■They must be speech impaired, minimally verbal or non-verbal as identified in a speech pathology report.
■They must be in financial need.

■There is no age limit.

■You must agree to donate the device (and accessories) back to the Foundation if it does not help the individual communicate.

Different iz Good feels that if you or a family member are in need of a modern and compact speech generating device (SGD) to allow you/them to satisfy the basic human need of communication; they want to help.

Please keep in mind that DIG is a young, newly formed non profit organization and cannot help everyone all at once. We are assisting individuals in the order applications are received, but please do not let this discourage you from completing an application.

You can also contact us by sending an email to voice@differentizgood.org, tweet an @ mention on Twitter to @DifferentizGood or post on the Different iz Good Facebook page.

Different Iz Good

Gift a Voice Project
Different iz Good and the Turning Views Foundation accepts any cell phones, cell batteries, accessories and electronic devices.  DIG recycles mobile phones, MP3 Players and Tablet Readers to "Gift a Voice" to people with communication disabilities. (kids like our Luke)


The Foundation will use any iPhones, iPods and iPads collected for the Gift a Voice Project. All others will be traded in towards usable devices.







The devices can be mailed to

Gift a Voice
c/o Mac-O-Rama,
4690 Longley Lane #22
Reno, NV 89502.

If you are in Reno, Nevada you can drop off your devices at

Mac-O-Rama
4690 Longley Lane 
Reno

Disability Resources/New2U Computers
50 E. Greg Street
Sparks

Be sure to include your name and email address, so that they can acknowledge your donation on the Different iz Good website, the Different iz Good Facebook Page and email you a receipt.

You can also help in spreading the word as they have more people who need assistance than they can serve.

They especially need cash donations and Apple/iTunes gift cards; but they also have items on their wish list that don’t cost anything but a few minutes of your time.  Check it out at http://differentizgood.org/wish-list/

Sunday, January 2, 2011

Grants for Speech Therapy

Grants for Children Who Need Speech Therapy

Giving children the tools that they need to speak or improve their speech can open up new opportunities and advance their social skills. However, speech pathology for children can quickly have an effect on a family's financial situation, as it may top off at $100 per hour. With children often needing more than one session per week, the costs can quickly rise, and many insurance companies limit the amount of money they provide for speech therapy. Thankfully, there are grants and other programs available for children who need speech therapy.

Statistics
Speech sound disorders occur in approximately 8 to 9 percent of young children; by the first grade, 5 percent have noticeable problems with their speech, according to the National Institute on Deafness and Other Communication Disorders (NIDCD).

Rehabilitation Act of 1973
According to the Rehabilitation Act of 1973, students with disabilities, including speech problems, may be qualified to receive federal financial assistance. Free appropriate public education qualifies all with disabilities in elementary and secondary education programs to be provided services by a school. If the school does not have a speech pathologist on staff, it must provide assistance according to the Act. Education services, including those for children with disabilities, must meet an individual student's needs in the same manner that a nondisabled student's needs are met. Under the Act, education and related services are provided at no cost to the family.

United HealthCare
The United HealthCare Children's Foundation provides grants not exceeding $5,000 for children younger than 16 in need of speech pathology. In order to qualify, the parent or guardian must meet specific income guidelines, live in the United States and have a commercial health plan.

United Way
The United Way operates local organizations throughout the United States and provides financial support for those who are in need of help with medical services, including speech rehabilitation. In order to be considered for assistance, you must apply through a local United Way chapter.

Scottish Rite
Scottish Rite clinics provide evaluation and treatment for speech language disorders and learning disabilities. The programs are provided regardless of a family's ability to pay for speech services for their child.

Consideration
The majority of speech grants for children are provided directly to the provider. In some cases, funding will be made out to you or it will require an endorsement by you and the provider. If you are provided a grant specifically for speech therapy for your child, you cannot spend the funding in any other way or there may be legal ramifications.

Alternatives
In addition to grants, universities provide a helpful alternative for speech language pathology for children. Universities that offer speech pathology degrees often have clinics, so students can attain clinical hours. This can provide a free or low-cost option for your child to receive assistance with speech.

If you qualify based on your income, Medicaid and state health programs for children cover the costs of speech therapy for children.

Taken from eHow.com
 
http://www.ehow.com/about_5806164_grants-children-need-speech-therapy.html#ixzz19uzMUpRt

Isn't it IRONIC?

Isn't it IRONIC, don't ya think?  A little too IRONIC, don't ya think? 
And yes...it did rain on my wedding day.

I find it IRONIC that UHC denies my child's speech therapy, but then has their own non profit organization that gives grants to those with any private health insurance that isn't funding medical treatment or therapy for their children. 

I know, you are scratching your head, too~right? 

Let me repeat, ANY person who has private health insurance that is NOT paying for their child's medical or theraputic treatments can apply for UHC medical/therapy grants. 

There are catches and of course, the main one is income.  Basically if you invested in your education, have a job and contribute to society~you are out of luck!

Honestly, I really think that it may be better for me to sit at home and draw a check for disability~because by now I am feeling a little mentally unstable...LOL!!!  I could also get a disability check for Luke then and have a shot at Medicaid and LOTS more grants.  I would also be able to be present for all of his therapies...hmmm, sounds like an idea! 

*SIDEBAR~United Healthcare once transferred me to Mental Health when I was ranting about them not paying for Luke's speech therapy.  ;)  I told Nequita, the operator that they had transferred me to all about the company that she worked for and how they were making deals with the devil.  She would have probably agreed with me, but of course the conversations could be taped~and she was worried about keeping her job.  Before she transferred me back to the medical side of UHC, I made sure she knew that UHC was Satan!

Before I get too carried away, I am trying to not only vent on this blog, but to also assist others~so here is the information for those who want and need it.  I hope that someone can benefit from the HIGH premiums that we pay.

http://www.uhccf.org/

Below is the UHC grant checklist~yep, alot of hoops to jump through~but most grants are.

United Healthcare Grant Application - Checklist



•Your child's social security number.


•Name, phone number and policy number of your child's current commercial health benefit plan. Medicaid, Medicare, SCHIP (which may be called various names by each state), HIS or other state or federally subsidized health insurance programs given to those without insurance or with low incomes are not eligible.


•A brief description of your child's medical condition(s).


•A description of the medical treatment, medical therapy, etc. your child's doctor has specifically prescribed. You can list up to five medical items in the application.


•Your monthly or one-time out of pocket cost of the medical treatment, medical therapy, etc. Out of pocket cost information should be what you pay after insurance, OR what you pay if insurance does not cover the item. If you do not know your monthly or one-time out of pocket cost information, please work with your provider and insurance company to determine your out of pocket cost. Do not overestimate your costs.


•How much of the cost, if any, your health insurance will help pay for.


•The child's primary care medical doctor (M.D. or D.O.) name, phone number and mailing address.


•An outline of your finances - monthly income, monthly expenses and total assets (bank accounts, investments, 401(k), etc.).


•The Foundation will request that some paper work be sent to us via mail at the end of the online application. We will ask for:


◦A one-page letter from an M.D. or D.O. that very clearly answers the following questions:


■What is the child's specific medical condition(s)?


■What specific impact does the child’s medical condition(s) have on the child’s life? (This may include medical, social, mental, etc.)


■What specific therapy, treatment and/or medical services does the doctor recommend?


■Why does the doctor recommend these?


■Has the child received the therapy, treatment and/or medical services before? If yes, have they been effective?


■What result does the doctor hope to achieve with this therapy, treatment and/or medical services?


◦Your IRS 1040 from the previous tax year that specifically lists your child as a dependent.


◦If you are requesting help with anything that your insurance company will not cover at all (0%), we will ask for proof. Proof will be a letter from your commercial health insurance company, or a copy of your benefits handbook that clearly states what is not covered, or an EOB, dated within the last sixty days, that shows what is not covered.


•The Foundation may also request additional information from you after the application is submitted.

New Year~New Resolutions

Resolutions~

To be...
present
To be...
healthier
& to be...
fit.

To try not to...
complain
To try not to...
whine
& to try not to...
cuss.

To...
laugh more
To...
talk less
& to...
listen.

To...
not facebook (as much)
To...
read
& to...
write.

To continue...
fundraising efforts
To continue...
grantwriting
& to continue...
helping others.

To be...
a better wife

To be...
a better mommy ;)

To...
not let this thing called Apraxia
consume our lives.


To..
live
To...
let live
& to...
love.

To do more...
kneeling
To do more...
prayer
& to do more...
sleeping.


Night~!!!