Showing posts with label picture communication. Show all posts
Showing posts with label picture communication. Show all posts

Sunday, March 6, 2011

Sahara's Voice

Dear Friends,

My daughter, Sahara, is a pre-verbal six year old kindergartener… she has delays across the board developmentally and academically. Our family is still recovering from a 7 month unemployment situation caused by an agency wide down-sizing last year. As a result we, like many autism families, are unable to afford an iPad for Sahara. I am writing you to let you know how disheartened I am to learn that not all professionals see the obvious benefits of an iPad for autistic kids and what I want to do about it.

Let me start by telling you our story: I contacted our insurance company in early December to see if they would fund this much needed tool for her. I was pleasantly surprised to learn that all we needed to do was present documentation from her doctor and speech therapist stating that she would benefit from this assistive devise. If we could provide this, then they would put it before a panel that would make the ultimate decision… not a definite yes, but a better answer than I expected.

I inquired to our speech therapist about writing a letter on Sahara’s behalf. She was pleasant about it and said she would do so over the holidays. Well, the holidays came and went and no letter arrived. Finally, 7 weeks later I called to ask where the letter was. I was stunned to get the response that, “I can’t … it is unethical.” She continued to tell me that there was no research or proof that an autistic child would benefit from such a devise. (I am pretty sure she is living in the Stone Age!)

I am even more certain this response is political and follows a money trail. She was initially more than happy to comply during our first conversation and now was saying it would be unethical to recommend an iPad for an autistic child with gross language , communication , social and academic delays? To further illustrate my political theory, let me share that she also refused to work with another piece of equipment we have immediate access to. I informed her that I have a friend willing to GIVE me a Tech-Speak and she refused to work with Sahara with this equipment too… well, that is unless we completed an assistive technology evaluation through her agency. She then proceeded to tell me that this is a “very expensive” evaluation which “most likely will not be covered by insurance.”

Now, I understand that this $2000 Tech-Speak will not have all of the apps the iPad offers. In fact, I am pretty sure its capabilities are inferior by far. From what I understand the iPad does have a multitude of applications that can help aid in language & communication, academics, social stories, scheduling and so much more. I know from watching Sahara on the computer, that she is technology savy… must take after her father!! In fact, she can navigate through files on the computer almost better than I.

So, what do I do?

To make a long story short, I have decided to hold a fund-raiser to raise funds for the iPad. I hope that I can raise enough money to not only fund the iPad and applications for Sahara, but for other autism families with economic hardships. I am wondering, does any know if Apple ever offer discounts in such situations? So many families are struggling like ours… 1 in 91 kids today have autism… how can we get this equipment into the hands of those of us who do not have access to extra funds for this essential technology?

If you would like to donate to this fundraiser, you can do so HERE or you can send a secure “gift payment” directly to us through paypal via ladysusan@sbcglobal.net.

If you would like to apply to win a iPad through this this fundraiser… we are creating an application for you to do so. Once we raise enough money, we will post how many we have available and how you can apply.

We are raising funds until April 15th… in hopes that we can have the iPads by May 1st.

Thank you,

Susan, Jim, Emily and Sahara

Sunday, June 20, 2010

A Song Reveals An Amazing Gift

Amazing!

I was looking for a song to post for Father's Day on Facebook for my wonderful hubby... being he has 2 fabulous daughters, I immediately went to you-tube looking for Paul Simon's 'Father and Daughter'.


As I listened to the words, "I believe the light that shines on you, will shine on you forever" .... "There will never be a father who loves his daughter, as much as I love you," I knew this was the song.

So, what is so amazing about that??

As I was listening to this song, Sahara booted up the computer, went to the right drive and selected our backup file for The Wild Thornberrys Movie. Firstly, we have 4 drives on the computer with 100's of files. She was able to pick the appropriate drive and find this file among all the others with zero assistance. Amazing!!

Secondly, If you don't know... Paul Simon's song Father and Daughter is the theme song for this movie. So, not only did she find this file, she found it because she recognized it while I was listening to videos on you-tube.

Amazing!!

I have to wonder... is she reading the words on the computer files or does she have them pictorially memorized? She is just entering the world of communication and although I read to her I do not think she can read.... or she can and I don't know it yet?

Any way it is amazing... if this child can memorize this many icons and files and know where each is categorized... what a gift she possesses. I think this is an answer to my question... should we revisit her picture communication program? This is a most astounding YES!