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Monday, May 23, 2011

Bridges

When looking for a pic to put at the top of this post~
this one seemed to perfectly symbolize what I am feeling~
with this commentary,
Bridges~you can either build them or burn them.
We were asked several times to comment on Babies Can't Wait by emailing Chase Bolds or presenting your comments/complaints in person at several open forums about Babies Can't Wait around the state.  I chose to email.  I am sharing this email today because I FINALLY got a response from him today. 
(Over a month after I emailed him with my concerns)

Email sent on 4/14/2011~


Mr. Bolds,

I would like to express opinions about the Babies Can't Wait program.

At one time, Babies Can't Wait meant the world to my family. It helped back in 2003-2004 when my daughter had a developmental delay with her speech. After surgery, she received speech therapy through Babies Can't Wait for a few months and made a complete recovery. She is now a second grader and in the gifted and talented program at her school.

I wish that I could say that we had the same positive experience in 2010, when I brought my son for an evaluation with Babies Can't Wait. It was at that first evaluation that things started to go wrong.

Knowing what I know now, I long to go back to that evaluation and tell them that if they suspected apraxia of speech they should also request an evaluation for occupational therapy. (He ran into a table and a wall during the evaluation. Clearly, he had a problem with his balance. I told them that he was clumsy and had difficulty climbing stairs, etc. I also told him that he put everything in his mouth.) This mistake cost my son almost 6 months of time without therapy or intervention.

The SLP suggested that he had apraxia of speech, but only prescribed therapy 1 time per week. (research shows that apraxic children need at least 3 to 5 therapy sessions per week) This mistake also cost my son and robbed him of the earliest and frequency of intervention.

After thoroughly researching Childhood Apraxia of Speech, I had to request that our therapy be increased and was met with resounding opposition. Finally, they agreed to "allow" us to get 2 speech therapy sessions per week. ( I say "allow" because we have to pay the 35% copay for these services)

When asking for more therapy, my former service coordinator texted me that he could only get 2 speech therapy sessions per week, end of story. I reported this to her supervisor and her supervisor's supervisor. We immediately received a new service coordinator.
After receiving our new service coordinator, I had problems with unprofessional behavior with several BCW employees during a team meeting that we had to discuss our request for more therapy and occupational and physical therapy evaluations.

After an awful meeting, that a Valdosta State Faculty member referred to as a "bar brawl"; my son was finally approved to be evaluated by OT and PT. The OT evaluation showed that he did in fact need occupational therapy for Dyspraxia of motor movement, Hypotonia and Sensory Processing Disorder. (6 months after our initial evaluation) I am still outraged that I had to fight so hard to get services that should have been offered to us at the initial evaluation.

During this meeting, several Babies Can't Wait employees were rude, condescending and even went as far as asking me if I wanted my son to be special. I was also questioned repeatedly about what was wrong with my son, having to retell his birth story and history. (when they should have read the file and been prepared for the meeting) No one should be put through what we were put through in that meeting.

We also had problems with a play therapist that is employed with Babies Can't Wait. I reported this incident to her superiors, and also emailed you.

Since reporting these issues to the Tifton office, BCW came to our house and tried to help us fill out the Katie Beckett Waiver. We have since been to the Kaufman Children's Center where my son has been diagnosed with Childhood Apraxia of Speech. We also have gone back and forth trying to get more services for our son.

Babies Can't Wait met last week and agreed to "allow" my son to receive 3 speech therapy sessions until his 3rd birthday.

It pains me that we had to go out of state for a diagnosis, to apply for countless grants to fund the therapy that honestly should be provided by Early Intervention Agencies such as BCW, and that we had to fight tirelessly with the people that are supposed to be supporting and helping us, but ultimately~I will do anything that I must to meet my child's needs.

I cannot begin to tell you about the pain and stress Babies Can't Wait has brought to my family in the past year and it is because of this that I wrote to you.

It is my hope that this letter will help shed some light on the problems with the Babies Can't Wait system.

I also hope that it will save another family from having to endure the stress, the unprofessionalism, the misdiagnosis, and the basic disregard for special needs children and their parents. I worry that parents that are not as educated and not as financially able or skillful, will not get the help for their children. The earliest of intervention is key.

I look forward to hearing your response.


Now I know you are really to know how he responded, right?  His letter must be really well thought out and well planned, especially since it took him over a month to work on it.  LOL!!!

Here is the email that I received 5-23-11 from Chase Bolds of Babies Can't Wait~


Thank you for your comment. I first would like to apologize to you and your family for your experience and state that I take this comment very seriously because we must provide quality, appropriate supports and services to children and families. Unprofessionalism is not tolerated and will be addressed.

In addition, we have identified and addressed training needs surrounding evaluation/assessment, service delivery and IFSP development.

Thank you again for your input as we are continually working to improve the program overall.

Chase Hall Bolds, M.Ed
Babies Can't Wait Program Manager

Office of Children and Youth with Special Needs
Maternal and Child Health Program
Division of Public Health
Georgia Department of Community Health
2 Peachtree Street, N.W. Suite 11-222
Atlanta, Georgia 30303-13422
office:404-657-2878 fax:404-657-2763
email:chbolds@dhr.state.ga.us

Saturday, May 14, 2011

Pictello

We have a new app for Luke's iPad 2 and it is a HIT with all of us~Luke, Maggie, and me! 

Pictello is an app that allows you to create your own story with pictures (using your own pictures).  It took me about 5 minutes to create a really simple story for Luke about his favorite things.  I am so excited about it because this is just another way that we can reinforce words that we are working on while incorporating literacy. 

I cannot wait to make another one.  As soon as I can get him to put it down, Maggie and I are going to "pen" a few more stories.   



This page says Luke loves popsicles~

This page says Luke loves his family.
This page says Luke loves bubbles.

More about Pictello~by AssistiveWare
http://www.assistiveware.com/

Pictello is a simple way to create talking photo albums and talking books on your iPad, iPhone and iPod touch. Each page in a Pictello Story can contain a picture, up to five lines of text, and a recorded sound or text-to-speech using high-quality voices. Stories can be shared using iTunes File Sharing or via WiFi with other Pictello users through a free account on the Pictello Sharing Server.


Pictello is developed for all ages and skill levels, so it is easy to use and requires no reading skills to locate and read stories. Pictello offers an easy visual story creation wizard so everyone can use pictures and sound to share important moments in their lives. An advanced editor gives full control of the editing capabilities.

Uses for Pictello stories include:

•Stories to teach social skills or to recall events
•Photo albums to allow nonverbals to share news and interests
•Sharing important events and memories with family who live far away
•Talking books
•Teaching narrative skills as part of a literacy or language skills curriculum
•Schedules, Task instructions, etc.

When Mary Holds Your Hand...

Luke and Mary Poppins
I just love this picture.  Mary Poppins is one of our favorites.  Maggie and I were so excited to be able to see it on Broadway last summer.  Unfortunately, Luke wouldn't have made it through a Broadway performance...he still hasn't made it through one of Maggie's Gingerbread Players performances yet. 

We did all get to eat with Mary Poppins at Disney and this is when Luke attempted a getaway.  Thankfully, Mary being the perfect nanny that she is, caught him and brought him back to our table.  LOL!!!  She also got him to finish eating. 

It is true...when Mary holds your hand, you feel so grand...

Grace App

Luke asleep next to his iPad with Grace App

Elly the Reindeer



S.P.E.A.K.


Summer S.P.E.A.K. (Speech Praxis Experience at Kaufman)

Luke was fortunate enough to be accepted into the Summer S.P.E.A.K. program where he will work with Nancy Kaufman, intensively for a period of 3 weeks. The program runs Monday through Friday and has two sessions offered.



The daily schedule for the 3-week program includes:

•One half-hour morning speech session with Nancy Kaufman

•One half-hour morning speech session with another highly trained member of the SPEAK team.

•One hour-long afternoon group session with other children in the SPEAK program.

Many families choose to receive occupational therapy services as well during their time at the KCC (this would be an additional cost). Oftentimes, kids with apraxia of speech will benefit from oral-motor, fine-motor, and even sensory integration techniques.

For more information about KIDSPEAK~
http://www.kidspeech.com/services/intensive-programs-for-childhood-apraxia-of-speech/792-3-week-intensive-program.html



Special thanks to The Hudson Family Foundation
 
and Quota Club of Valdosta
for making this therapy and trip possible. 

They are truly angels here on earth!

Saturday, May 7, 2011

Georgia Pre K Cuts

I am sickened by the fact that my state (Georgia) has decided to cut Pre K to 160 days per year, I guess in an effort to balance their budget. They also are only going to give these Pre K teachers 60% of their pay next year. :(



Absolutely pitiful, but I hear no one voicing their outrage. If you are interested, here are the links to let your voice be heard.

http://www.votesmart.org/official_state.php?state_id=GA&dist=&go2.x=5&go2.y=8

Someone has to be a voice for these children, will it be you?

How will this "make the first five count"?  I can think of a lot more ways to cut the budget without cutting programs that directly touch children.  And believe you me, I will be that voice~a LOUD voice. 

Thursday, May 5, 2011

FirstWords App ;)

Love this little brilliant boy spelling BIKE 
Manipulating the letters to spell JEEP!

Watching the JEEP go after he manipulated the letters to spell it~
Spelling TAXI
Manipulating those letters~check those RAD fine motor skills!
 
Loving the FirstWords app for all the reasons above...and for those I failed to mention.

Developed by Learning Touch, the FirstWords app collection teaches kids to recognize letters, practice the sounds they make and begin to spell by developing a relationship between letters and words.


 

Sky Miles and Buddy Passes


As many of you know, we will be spending A LOT of time in Michigan this summer at the Kaufman Children's Center.  Luke will receive intensive therapy in speech therapy, oral motor therapy and occupational therapy for 4 days in June and again for 3 weeks in July

While almost everything for our trip has been covered, we still have an additional need.

It is very important that Luke's SLP in Valdosta get to Michigan this summer while he is receiving intensive therapy.  Nancy Kaufman will work and train our speech and language pathologist personally, if we can get her there.  (Sure we have Kaufman's DVDs, but to see how she actually works with Luke in person~would bean answer to our prayers)  When we were at the KCC in November/December, there were other kiddos who had brought their SLPs or had them flown in for part of their visit~so this is not something unusual.

This is critical to Luke's speech and oral motor therapy, his development adn progress~To have his therapist trained and working with the leading practicitioner in the world~phenomenal opportunity for us and for other children with communication and speech disorders in Valdosta and the surrounding area.  (There are 4 or more apraxic children of varying ages and severity in the Lowndes County area that I am now familiar with.)

THE Nancy Kaufman ;)
Here is where I ask, beg and then plead for your help...if you have frequent flyer miles or access to buddy passes~PLEASE consider helping us fly Amy Struble to Michigan.


My boys cheering for Maggie ;)

You can contact me via email, facebook messaging or commenting on the blog or facebook link for more details~especially about giving frequent flyer miles~I have investigated the whole gifting frequent flyer miles plan and know that it would take anywhere from 25,000 to 32,500 frequent flyer miles to make this round trip happen and that it is cheaper and easier if the "gifter" just purchases the ticket versus "gifting" it.  (Delta charges $30 to gift and 1cent per mile, but to use your FF miles they only charge taxes)

Wednesday, May 4, 2011

The Lindsay Foundation

Helping Sponsor The Lindsay Foundation's Ride for the Bear 2011


This isn't the first time that I have written about The Lindsay Foundation and it definitely won't be the last.  This foundation has my heart, as not only have the helped Luke~they have helped numerous friends with their special needs' children~funding speech therapy, physical therapy, occupational therapy, medical equipment, strollers, wheelchairs, lifts and communication devices.

http://maggieandluke.blogspot.com/2011/01/announcing-another-grant.html

I am forever grateful for their help and am now asking that you help them.

They need you to go to the Vivint Facebook Page and LIKE it.  
Then click on Vivint Gives Back Project.
The Lindsay Foundation is located in the Central zone on the map.
Click on them and ENDORSE.  
You will have to do this daily to make an impact.

$100,000 to $250,000 is going to be given to charities~that would help A LOT of children.

And if you don't~then consider this...donate at least $20 to The Lindsay Foundation.
If you feel lead to do so, please make your donation in honor of Luke Tarpley.  If we have donations that "pay forward" what we have received, we will be able to apply for additional help for Luke's therapy if/when needed.

The Lindsay Foundation

P. O. Box 1073
Huffman TX 77336

Go to http://www.lindsayfoundation.org/ and then click on Lindsay's Kids to see all of the kids that they have helped so far.  Look closely and you will see Luke's pic ;) 

Mission
The Lindsay Foundation is a 501-C-3 non-profit organization whose primary goal is to assist families with the resources necessary to provide medical treatment, therapies, and rehabilitative equipment in order to improve the quality of life for their special-needs children.


Background
Lindsay was a special needs child. She passed away in 1999. Her mom, Laurie McMillan-Henry, so many times had to fight bureaucracies and insurance companies in order to obtain what she needed for Lindsay. She established The Lindsay Foundation in 1999 in the hopes that she could assist other families fighting those same battles. Her statement was that "having a special needs child is not a burden, providing those needs is".

Families with special-needs children face traumatic medical expenses whether due to birth defect or catastrophic illness or accident. They often see themselves having to choose which need they can meet due to financial restrictions. These are the families that the Lindsay Foundation is there for.

Once information is confirmed, every application for assistance is presented to their Board of Directors for review.

After being established in 1999, they assisted their first family in July 2000. They have provided, among other things, medical supplies not covered by insurance, aquatic therapy, horse riding therapy, a special power supply for a communication device, a Chat PC, a custom fitted power wheelchair, a number of wheel-chair lifts and, in one instance, they were able to pay the reduced surgical fees to a pediatric cardiologist.

The Lindsay Foundation is funded solely by events and donations and all work within the Foundation is done on a voluntary basis.

Danielle's Foundation

In keeping with my latest decision to share funding resources with you~here is another grant that we applied for, but didn't get.  See, we don't win them all~LOL!!!

Danielle's Foundation

Danielle’s Foundation was created by a group of volunteers—parents, advocates, and attorneys—to help parents more easily access the information needed to navigate the complexities surrounding brain injury and cerebral palsy. Their goal is to help parents demystify the complicated system they find themselves working within, and to restore hope during a difficult, tumultuous time.


They realize that most parents are completely unprepared to deal with the issues they face related to a brain injury or diagnosis of cerebral palsy, and don’t know where to turn for help and support. They are there to help ease the challenges and roadblocks parents of brain injured children face on a daily basis.


While they realize that special needs families have varying needs, they also know that you frequently share many of the same concerns—concerns about finances and legal issues, concerns about securing the necessary treatment, concerns about identifying resources, concerns about education, and concerns about finding the support you need.

Danielle’s Foundation is constantly growing and evolving, and it is their hope that it becomes the most comprehensive, complete site for families of children with brain injury and cerebral palsy.
http://www.daniellesfoundation.org/
 
To find out more about their grant programs~
http://www.daniellesfoundation.org/grant-program/
   
They will also send you a free book, which is very informative~
http://www.daniellesfoundation.org/our-free-book/

Tuesday, May 3, 2011

Kiddo's Clubhouse Foundation

Kiddo's Clubhouse Foundation ;) 

I am going to start sharing more foundations on my blog.  I really feel led to share opportunities for assistance with others~especially since I found out that 6 people that I have shared information with have gotten some sort of help with funding!!!  HOW AMAZING!!!

Lots of friends and family have asked if I have ever been turned down for a grant and the answer is YES~believe it or not, I don't get every grant that I apply for.  I would like to boast that I do, but that would simply not be the truth. 

Which brings me to sharing about a therapy center who has their very own foundation in house~totally fabulous idea, right? 

I SO wish that everyone would feel called to add this part of service to their facility.

Check out Kiddo's Clubhouse at http://www.kiddosclubhouse.com/team.html
and Kiddo's Clubhouse Foundation http://www.kiddosclubhouse.com/clubhouse_connection.html

Vision

That children with special needs of all income levels and abilities have equal access to critical therapies needed to make their lives better.

Mission
To shape better lives for children with special needs.

How
Through the help of corporate partners, community volunteers, families, and other donors, we raise funds for to provide scholarships to families who are not able to pay for therapeutic services for their children with special needs. A portion of the funds are used to provide education about disabilities to the public and to support other nonprofit organizations associated with children with special needs.

http://www.kiddosclubhousefoundation.org/

The Kiddos’ Clubhouse Foundation recognizes that not all families have the financial means to obtain medically required therapy for their special needs children. With the resources the foundation provides we can help families continue critical therapies, relieve unnecessary financial burdens, and regain hope for their children.
http://www.kiddosclubhousefoundation.org/index.php?option=com_content&view=article&id=110&Itemid=190

Scholarship FAQ's
http://www.kiddosclubhousefoundation.org/index.php?option=com_content&view=article&id=111&Itemid=191

Other Resources
http://www.kiddosclubhousefoundation.org/index.php?option=com_content&view=article&id=117&Itemid=193

The INCREDIBLE iPad

OH MY goodness gracious~you could not have prepared me for how the iPad would immediately impact Luke! 

Head, Shoulders, Knees and Toes App :)
I knew that it would assist him in communicating, knew that it would help him learn more, knew that it would keep him engaged~but I honestly didn't think that it would elicit this much language!  WHAT A BLESSING!!!
Head
Shoulders

Knees and Toes~!!!


and here I caught him talking~
If you look real closely you can almost hear him ;)
Now I know what http://www.loudmommy.com/ was making such a fuss about!!!  This technology isn't just a tool, it is a link~a link to learning and language!

Truly and absolutely BLESSED!!!

Monday, May 2, 2011

Wild Adventures MOMS Board


Lots of you have asked how I get up close and personal at Wild Adventures....well, membership has its priviledges.

I am a card carrying member of the 1st Wild Adventures Moms Board and so very proud!

Here's how you can become one, too!
http://www.wildadventures.com/Home/MomsBoardApplicationPage/tabid/590/Default.aspx

Here is a pic of one of my favorite things to do while visiting Wild Adventures~Maggie and Luke love the Lorikeet Landing!!!

Maggie and Luke LOVE the Lorikeet Landing

We also love the animal shows!

This is one of Maggie and Brad's favorite rides ;)

Wild Adventures is open again~FUN TIMES!!!

ODDS




I just read a new statistic that really frightens me. 

Less than 1 in 5 kids get the proper diagnosis & treatment for developmental delays.

Alright~let that sink in.

Reread if necessary. 

Less than 1 in 5 kids~gets the proper diagnosis & treatment for developmental delays. 

Let me put it in perspective~the pictures of Luke below (all four of them), represent the children that are not being diagnosed and served in our country. 

So for every "Luke" at the top, there are 4 "Lukes" that aren't diagnosed or treated.







How can this be?

I knew that there were children going undiagnosed or not receiving the proper diagnosis and even those that weren't receiving the proper treatment and therapy,
but knowing that it is this many children...really sickens me.


It also makes me think.

Is it because there isn't enough help available?

Are there not enough professionals that know what they need to be looking for?

Or is it that the signs are there and people are turning their backs?

Are some people living in denial and ultimately harming their children?

Whatever the reasons~it is a CRYING SHAME!!!

http://www.livestrong.com/developmental-delay-diagnosis/






Sunday, May 1, 2011

1 LOUD MOMMY + 1 LOUD MOMMY =

2 Families Bonded by their Non Verbal Boys and a little something called the iPad




They say a picture is worth a thousand words...well then my friends and followers, these are simply PRICELESS~

Loud Mommy, Tara presenting Luke with his iPad 2

Luke saying ME?!? when Tara gave it to him

Trying to be careful with the contents

Look closely and you can see Grady's hand, helping to give it to Luke <3

The iPad 2

Luke is ready to get started on it

Loud Sister wearing her Loud Mommy band ;)

2 Loud Mommies~Loud Voices in their Sons Silent Worlds
2 LOUD FAMILIES~
and if it seems like the pic is a blur...well, it is~and so was our short time together ;)
This happy ending was brought to you by Loud Mommy~