5 iPads for Autism

I have a brilliant idea!!

I want to get 5 iPads into the hands of non/pre-verbal autistic children... and more if I can.

How?

Well, let me back up a tiny bit and tell you were I got the idea... It stemmed from my frustration with the system. I was using my blog as a rant... aka cheap therapy!! But as I typed those words, I started to get this idea... let's do a fundraiser to raise the funds for an iPad for Sahara.

But, I am not a self-serving person... so I started to think bigger, let's ask for more donations than what we personally need. Let's get enough to fund 5 additional iPads for other Autistics... Imagine the empowerment you would create in those lives!!

Hence the birth of the Sahara's Voice fundraiser.

Well, we posted the fundraiser 5 days ago and have raised $162 so far... while that is awesome!!! I want to keep it rolling.... please share this page with everyone you know... let's show the world what it means to pay it forward!!

Please remember a bunch of little things can add up to be a huge thing!!

If you have a company, consider donating in the company's name. The company will be acknowleged on our blog, twitter, facebook and in press releases.

Here are some links of interest:

iPad GIVES VOICE TO AUTISTICS

Extensive list of iPad applications for people with autism

Expressive application

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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 15^th… in hopes that we can have the iPads by May 1st.

Thank you,

Susan, Jim, Emily and Sahara

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My Morning Rant

I was on Facebook this morning and started to write a morning greeting in response to a post by a local autism center,"

"The latest British Medical Journal paper about autism and vaccines, which provides evidence that the initial report linking autism and vaccines was fraudulent, and the media coverage that ensued, miss an important point…"

...and since my thoughts wouldn't fit the character limit... I brought it here.

Firstly, I was stunned to see an autism school post something so controversial. I do think their job should be education, intervention and advocacy... and that their opinions about the autism/vaccinate debate should be removed from their public statements. (... So I thought that this post was risky.)

But, they are right about questioning the media's coverage ... because, of course, we know that the media is a great place to get unbiased information!!

Secondly, (here I go…) I think Wakefield is a scapegoat!! (Do you know he had nothing to do with our pre-autism decision not to vaccinate?) Yes, that is right we made this decision before autism was in our lives... And in case you are thinking, “See, you didn’t vaccinate and your child still has autism!” Let me clarify, that doesn't 'prove' anything... I often wonder why no one is researching maternal vaccine history... For instance, RhoGam ??

I know too many parents who have reported regressive autism, not to question it’s etiology. I do not think autism is ‘caused’ just by vaccines, and in some cases… that is precisely what I think. But, I also think genetics, environmental toxins take a role as well…

Moving on to what Really pushed my buttons… this particular post went on to quote Autism Speaks,

"Until science discovers the causes of autism and explains its dramatic increase, parents will continue to reach their own conclusions and desperately try a wide range of treatments, whether there is evidence to support them or not. The answer is not to look to the past and look for blame, but rather to look to the future. We need increased research financing directed toward rigorous science that can provide the answers that parents are looking for and deserve. Until this happens, we will continue to wallow in controversy, and people with autism and families will continue to struggle with autism on their own."

Geraldine Dawson

Chief Science Officer, Autism Speaks

New York, Jan. 13, 2011

Editorial in New York TImes by the Chief Science Officer of Autism Speaks

Let me be clear Autism Speaks does not speak for myself OR my child! I have many questions, but mostly where is all this money they raise??? ... and why (or how) should we take YOUR research seriously while you are insulting parents across the world with statements like this... how can we expect unbiased research ? We can't!

In this statement you are indirectly (no, directly) are asking for more money to fund research?? Does anyone else see this statement as exploitation?? In the first two sentences, parental desperation is address… then whap… they put their hand out!

What about the 6 digits your executives are making? Do you know many autism families have lost their homes, have gone down to one income, and are scrapping by to do what they can with what they have for their children while you sit in your fancy upstate New York office getting rich off of us?

I don't need Autism Speaks to tell me that my child is 'broken' or that my marriage is going to end in divorce or that autism is entity stalking my family... I have found a way past her label, the stereotypes, the fears... but that doesn't mean I sit back and quietly listen to this crap... stop exploiting our kids, adult friends and loved ones.

Stop paying your executives 6 digits! Stop spending more ((a lot more)) on travel and office expenses than what you contribute to autism research and family services. Then maybe you don't have to recruit parents on the front line to go out to collect donations and walk... when they should be focusing their attention on their child.

Finally, take the dollar sign of my child's head!!

Let me conclude with this thought...

Whether you believe vaccinations is the trigger for your loved one's autism or whether you embrace nuero-diversity... let's unite to empower the global autism community. It doesn't have to be a heated debate of one side vs the other.

In fact, I have found common ground with both sides. I do believe pre-natal vaccines contributed to my child's condition, but I also accept that she is phenomenal.. autism or not. I will continue to support her and offer her the tools she needs to reduce her challenges. I have found blessings disguised as autism...

But, autism doesn't define who she is... she is Sahara Grace, a fantastic 6 year old exploding with possibilities.

As for Autism Speaks... shame on you for exploiting our community.

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Donation Ideas

If you are considering giving to charity as this year ends... please consider local charities or ones that you know where the money is going.

Many people ask if I support Autism Speaks... I do not. For the same reasons I do not buy pink ribbons and walk walks... I don't know where the money trail goes... well, I have my suspicions, but that is not for this post.

WHO DO I SUPPORT?

I support AWN and NZ... With these two organizations, I KNOW where the money trail is and what they are specifically doing to impact our global community.

Autism Womens Network (AWN) supports females on the spectrum and your donation would go towards hosting workshops across the US to educate and empower families like mine.

This community of autistic women have welcomed me, as a NT mother, into their community with open arms... I have developed a vested interest in their work. My goal is to empower other mothers like myself and young girls like my daughter. That simple! To donate click here.

NZ (Numinous Zoe) is a non-denominational, Christ centered church that has offered local resources for me to personally work with the autism community through spiritual and energetic mentorship. Your donation would help continue not only my mission & spiritual growth, but would support outreach to many who may not otherwise afford this alternative mode of care for their families and children. To donate contact Nathan at nnorris@numinouszoe.org

TY to both of these non-profit organizations... your personal support this year to my family and the autism community has been immeasurable!!

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