I spent yesterday morning at a local university, participating in an autism study. Part of the study was an interview about my experience as an autism parent -- including whether there were any benefits to my son Leo's autism diagnosis. "Absolutely," was my immediate reply, "We have become part of an amazing community -- full of people who support, understand, and trust each other unreservedly." But what happens when someone in our special needs parenting community abuses that trust? That's what many of us are worried about, after the Marissa's Bunny Foundation solicited donations from parents of kids with special needs for the chance to win iPads -- and those iPads never materialized.
The father of Marissa, a four-year-old girl with infantile spasms, raised over $29,000 from the special needs and the gaming communities with a stated goal to both finance a surgery for Marissa, and give other parents a chance to win iPads for their own kids with special needs. Marissa's dad said that his boss would contribute matching funds. Forty parents were even selected and notified that they'd won iPads, and that the iPads would be shipped ASAP -- except now parents are claiming their iPads never arrived. And the community is outraged. What happened? Was this a scam?
Here are excerpts from an email the Marissa's Bunny Foundation sent out yesterday, and which special needs parenting powerhouse Ellen of Love That Max included in her own, must-read post:
"There are no longer any iPads. I've never had access to the matching funds I've been promised. Something along the way changed and I'm getting hung out to dry by my bosses.
"My reputation is now screwed with the SN community but I have to be able to give Marissa the best chance for as close to normal as possible and will happily work under whatever conditions I need to. I'll dance with the Devil if it gets Marissa what she needs."
It's possible that this statement is true, of course -- which would make the crisis even more tragic. And some parents have pointed out that a donation is a donation, and we shouldn't expect to get anything for free. But we do have the right to expect people in our community to make good on their promises, especially when, as Emma wrote in the comments on Elllen's post, iPads are expensive and many parents who entered the contest did so because they can't afford to buy one:
OF COURSE people who were promised something have a right to be angry or upset. Most of us can't afford to just go and get an iPad and we thought this was the answer to our dreams. I was skeptical from the start but I was still hopeful.
[Marissa's dad] was NOT obligated to give anyone anything for free but he made promises that he didn't have to make. Here is what troubles me - much of his fund-raising was based on the fact that people thought he was giving back to the special needs community.
Emma also indicated that Marissa's dad may have a history of not making good on his promises:
My therapist ordered a bunny from him (and paid him) because she admired what he was doing. that bunny never arrived either and it has been about three months. Every time she emails she gets a new reason why it hasn't happened. I didn't lose anything because my entry was free -- I just gained a little disappointment -- but my son's therapist lost money. How many others did too?
I really hope that the Marissa's Bunny iPad debacle is truly a legal horrorshow rather than a scam. I hope someone can vouch for Marissa's dad's credibility, or even can proclaim themselves the happy beneficiary of the numerous raffles and giveaways that Marissa's Bunny has hosted in the last two years. That the over $4,000 dollars raised via the iPad giveaway page isn't a separate donation black hole. I hope all this because I want our community healed, and also because I want Marissa's dad to be able to get back to the business of providing his adorable daughter with the care she needs.
In the meantime, I would advise us all to be careful about making donations to causes someone you trust cannot vouch for, or entering unverified giveaways. It makes me sick at heart to write this, because I am a huge proponent of online fundraising for iPads for kids with special needs and other causes. But the Marissa's Bunny situation is yet another reminder that doing our best for our kids requires extra effort -- in this case, a healthy dose of skepticism.
Photo Credit: tocaboca.
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