Visit Rebekah's Page to get updates, read messages and send messages to Rebekah and her family through comments. This is a public "diary" of a family whose little girl started a battle with inoperable cancer in April 2005. In December 2007 our house burned down. And in September 2009 Mommy was diagnosed with a terminal disease (a genetic form of ALS) that took her to Heaven in July, 2011, leaving Daddy and two young girls to make it on their own. Over several years of ups and downs, you will get into our hearts, minds and souls as we share joys and sorrows. It can sometimes be very difficult to read. We hope it is also uplifting. Please find joy in what you read here.
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Thursday, May 22, 2008



Rebekah Needs To Tango

We met with Rebekah's IEP team yesterday to discuss 2 things: the results and future of her mental retardation testing, and her speech/communication needs. The two topics became inseperable as her biggest need is to be able to communicate. Even though her IQ tests come in at just under 50 (thank you radiation to the brain), her comprehension testing is at a reasonably high level - that of a 3 1/2 year old. Unfortunately her ability to express is way behind. In an effort to try and help that we introduce the Tango:

More Info At: http://www.blink-twice.com/

For the past several months Rebekah has been undergoing a trial/test period to see if this device would work for her. The testing involved whether any communicative device would be helpful, and if so, whether this was the right one. The good news is that right at the end of the trial period she "Got It" and really started to grow and be able to use it, expressing things she can't in other ways.

And that is also the bad news. Now that she is at the end of the trial period they take it away. The local special ed district that is helping so much with Rebekah only has one to share between all the potential needs and it is given by the company as a trial. In order to obtain one for Rebekah we need to buy one - at $7,000.00!

The first choice (of the district) is that the parents pay for it out of pocket. Obviously that is not a valid choice for most parents of special needs kiddos. So we then get into the second option and that is looking for outside funding. We are looking into options that include insurance, grants, school district funds, etc. With her diagnosis and the objective (as well as subjective)test results, the communications device qualifies as a "medical neeed." But that still only gives a slight hope for insurance coverage and even then it would only be partial coverage. And of course, trying to pursue all the available options takes time and she doesn't get to keep the one she has while that time plays out. What is really frustrating is that she qualifies for and is getting "extended school year" because she has demonstrated that she will loose ground if she doesn't have continuous exposure to her educational programs - but then they go and take this away and say "Sorry. If it takes a while to get one, hopefully she'll be able to pick it back up whenever you finally do."

SO - if you know of any grants, businesses, etc. that just happen to have $7,000.00 to go to the needs of a special little girl, let us know. Otherwise, please help us and pray that God opens up an avenue to make this possible. Even if we don't, HE does know where the funds can come from.

On a different note, the girls went into daddy's office the other day to show off their pretty dresses. Sarah has a new question, "Do I look pretty daddy?" She asks it all the time. And Rebekah models after her with, "I pretty too." It just melts your heart. Here are daddy's pretty girls that morning:

5 Shared:

At Friday, May 23, 2008 7:18:00 PM, Anonymous Darlene Left a thought...

So glad to hear and see of the progress on your home. We will pray about the need you shared.

 
At Wednesday, May 28, 2008 4:37:00 AM, Blogger Sue Z Left a thought...

Try contacting a parent advocacy group. I don't know the laws in your state but in NJ if a device is recommended in the IEP, then the district is obligated to pay for it. The laws may be similar where you are but the district may not be forthcoming with that info ... thus the advocacy group. Google "child advocacy" and then your state. I'm an OT and I see the school district try to wriggle out of paying for various services all of the time, it's sad. But parents who are well informed with regard to the law can get the services their child deserves, but it won't come without a fight. I wish you success and will keep you in my prayers.

 
At Wednesday, May 28, 2008 7:08:00 AM, Blogger Rebekah Christine Left a thought...

Thank you SueZ. You are absolutely right on all accounts. The controlling issues are under Federal Law so it applies the same here as in NJ or any other state. Rebekah does have a slightly added benefit of daddy being pretty well versed in Special Ed law, so much so that he is available as an advocate to other families. As you said, it is SO important to know what your rights are as the district won't often "offer" them up.

The difficulty with this "solution" is that if the district buys it then Rebekah doesn't get to use it at all outside the classroom. This obviously lowers her familiarity with it as well as its productive uses. She needs to be able to communicate is life, not just the classroom.

For those of you other parents who are reading this. Take SueZ's words to heart. KNOW your rights when dealing with the school district. And one of those rights is to have an advocate with you in those meetings. There are some great groups out there.

-Scott (Rebekah's Daddy)

 
At Wednesday, May 28, 2008 6:09:00 PM, Blogger Deb Left a thought...

...praying that the Lord will provide for this need!!

He is able!!

 
At Wednesday, July 09, 2008 8:34:00 PM, Blogger Paula Left a thought...

I haven't blogged since last November. What a blessing to stop by and see the girls smiling faces! Praise God. My daughter and I still have Rebekah's cancer bracelets from way back when. Glad to hear the recent Pet scans were normal. Will keep you all in our prayers.

 

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