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Sunday, February 20, 2011

Busy, Busy, Busy

Can't you just hear him saying Choo Choo?

SO, instead of getting depressed about insurance denying our speech services~yet again, I just got mad and worked harder. 

I found and completed not one but two applications for grants this weekend and will put them in the mail tomorrow.

Chugga Chugga~!!! 
I think I can, I think I can, I think I can

And instead of dwelling on what we don't have, I just decided to count all the blessings that we do have. 

Forgive me, but I am still counting....

Because our blessings are plenty ;)

Ahhh, yes...and here is one of those many blessings 

Friday, February 18, 2011

Did you know that speech was a luxury?


We heard back from United Healthcare.  They denied our request for speech, again!  They consider speech to be a luxury.  A luxury! 

That totally infuriates me!

I just keep thinking how hard we have to fight to continue getting services and help for Luke. 

Sure we have been blessed by so many people and organizations along the way, and I am in no way forgetting these blessings, but I am ticked.

I am allowed days like this, right?

I just keep thinking...about time lines. 

Our grant from The Lindsay Foundation runs out at the end of March (for the additional 2 speech therapies per week) and so does the Babies Can't Wait extra speech session per week. 

This stresses me out and makes me anxious.  I have to find more funding to keep Luke's therapy going 5 days a week.  Going to therapy 5 days a week with the same therapist has been huge in helping Luke make gains.  And I cannot let him regress. 

Another worry that I have is that I haven't heard back from the Small Steps in Speech grant about changing our dates for the Kaufman Children's Center.  They had approved our April visit, but Nancy had a change in her schedule and we had to reschedule to early June.  I pray that they allow us to keep the grant. 

And then my worries subside.

I have a fun time at gymnastics with my little family, recalling how far Luke has come since October.  He is saying so much more, attempting 2 words sometimes and making lots of sounds.  He is jumping and moving so much better and he is visibly stronger.

And then I open the mailbox and see an unexpected package (from an angel).  The therapy tools that were on our wish list were purchased by her and her organization.

With these tools, Amy will be able to better assist Luke with his tongue placement to make specific sounds.  

I have said it before...but God is Good,

All The Time!!!

Tuesday, February 15, 2011

Unlocking Luke's Voice


The Quota Club of Valdosta is hosting a Yard Sale on Saturday, March 5th to benefit Luke.  We are so excited that this wonderful group of people has stepped up to assist us in helping Luke unlock his voice.

I wrote and told them our story and was immediately contacted.  They wanted to help, but in a big way, so they shared Luke's video with the club and then came up with a plan for a Yard Sale.

They have already started getting things together for the sale, moving furniture, contacting the press and radio, scheduling interviews, and spreading the word about apraxia of speech.

The same morning that I woke up and told my husband that I didn't have any more grants pending, was the exact same day that Robbie called and said that they wanted to help us in a big way.  All I can say is...God is Good~He hears our prayers and He provides!

Wednesday, February 9, 2011

Heaven's Very Special Child


A meeting was held quite far from Earth

"It's time again for another birth"

Said the Angels to the Lord above

This special child will need much love

His progress may seem very slow

Accomplishments he may not show

And he'll require extra care

From folks he meets, way down there

He may not run, laugh, or play

His thoughts may seem quite far away

In many ways he won't adapt

And he'll be known as handicapped

So let's be careful where he's sent

We want his life to be content;

Please Lord find the parents who

Will do a special job for you

They will not realize right away

The leading role they're asked to play

So with this child sent from above

Comes stronger faith and richer love

And soon they'll know the privilege given

In caring for this gift from Heaven


This special child so meek and mild

Is "Heaven's Very Special Child".

Author Unknown~

Tuesday, February 8, 2011

Sister

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playrounds and in grocery stores. I've become an expert at indentifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your heart and soul. You are compassionate beyond the expectations of this world. You are my "sister".
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's clinics, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consulataions, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.

We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have laboured to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued muncipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaningn strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip to Holland" and Erma Bombeck's "The Special Mother". We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat". We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left of the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith anyways. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolours, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through the world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

~Author Unknown

Monday, February 7, 2011

Lists

I never considered myself a list person until recently.

If I didn't make a list, I don't think I would ever accomplish anything.

It has to be the accountability in the list~

Or maybe the satisfaction that I get in crossing things off the list~

Whatever it is, it makes me keep my sanity~complete the task(s)~and feel a sense of accomplishment.

All because of a little thing, called a list.

Saturday, February 5, 2011

Daddy Daughter Dance

The shoes...


In lieu of flowers...she chose jewelry :)
(that's my girl)



The ROCKSTAR nails...



The hair and the dress...



The brother...



in her shoes...



All my loves in one picture <3


And then...we sent them off on their date night ;)


Daddy Daughter Dance 2011

Friday, February 4, 2011

WAW!


WAW~What A Week!!!
 
Here's a countdown...

10.  This week was our first full week of therapy 5 times
with the same therapist, Amy Struble, of Keystone Therapy. 
Special thanks to the Lindsay Foundation
for making this dream possible.

9.  I can already tell that Luke is "talking" more. 
He is vocalizing, babbling and even voicing sounds
more than ever before.

8.  I was able to reschedule our visit to the Kaufman Children's Center.  We are scheduled to go back at the end of May. 

7.  I also emailed back and forth with Nancy Kaufman this week.  
We plan on videotaping a few of his ST sessions and sending them
to her to see his progression. 

6. We received the first technical denial from our Katie Beckett waiver request.  I gathered notes, letters and documentation, faxed back and forth to therapists and doctors all over the place, and then attempted to fax 80 pages to the state of Georgia...only to hear a busy signal...all day long.

5.  I received a call from an inquiry I had made a while back to Easter Seals/Champions for Children.  We had emailed a few times and she decided to call me. 
She listened and explained what they did, she promised me that
they would help Luke.  She also mailed me information and an application. 
I feel very positive if Katie Beckett doesn't come through
that this will be a good back up plan to fund Luke's therapy in the future.

4.  :(  Luke bit Maggie on the face.
He also slept in his big boy bed, all night long, and
hasn't taken a bottle in almost a week!  ;)

2.  Organized a fundraiser that starts at school
next week called "Valentines for Voices" and signed the paperwork for 
The Olive You Foundation and made it "legit".


1.  Almost ready to send my girl, Maggie, and her sweet daddy to the Father/Daughter dance tomorrow night~what will Luke and I do while they are gone?  LOL!

Thursday, February 3, 2011

Different Iz Good's Valentines for Voices


Different Iz Good's Valentines for Voices

~3 Valentines to choose from ~  $5, $25, $50 


$5 Valentine: Your sweetheart, friend, parent or child will receive a Valentine-Gram via email with a special message from you and us letting them know you helped purchase a voice for someone with communication disabilities.

$25 Valentine: Your sweetheart, friend, parent or child will receive a Valentine-Gram via US Mail with a special message from you and us letting them know you helped purchase a voice for someone with communication disabilities (including an insert with information about our current recipient).

$50 Valentine: Your sweetheart, friend, parent or child will receive a Valentine-Gram AND a silver plated pewter pendant prayer box via US Mail with a special message from you and us letting them know you helped purchase a voice for someone with communication disabilities (including an insert with information about our current recipient).
 
*The Valentine-Gram would be handmade by Fairy Princess Lillian Darnell*
 
For more information visit The Different Iz Good Facebook Fanpage at
http://www.facebook.com/?ref=hp#!/DifferentizGood

Tuesday, February 1, 2011

Guest Blogger for DIG


I can now officially add "guest blogger" to my resume ;)

Please check out my post at
http://differentizgood.org/category/communication/

Thanks in advance and happy reading~!!!