Bloggers Beware

Many parents of special needs children have turned to the internet to find community. For some of us it is the only way to connect with other parents in similar situations. Our lives have been forever changed by Autism, Cerebral Palsy, Down's syndrome, Fragile X, childhood strokes, . . .the list could go on. Most of us can't just take a few hours to attend a support group so blog communication becomes our support. The appeal of meeting people who "get it" is huge. Unfortunately that need can cause people to let their guard down. When I work on research skills with my students, I stress the point that anyone can write anything on the internet. I can start a blog and call myself a Ralph Waldo Emerson scholar. I can write that his favorite food was peanut butter and that he played hopskotch as he formulated his transcendentalist philosophy. If you inculde that in your research paper you have made a great error. My hypothetical blog is not a peer reviewed edited publication. In the same way, someone can start a "special needs" blog and not actually be a person with any connection to the special needs community. Or, the person may have a family member with special needs but use the blog to pull on readers' heartstrings to get donations.

Why would someone do this? Well, why would someone steal savings from elderly people? Why would someone molest a child? Because some people suck. There are people out there whose brains lack a moral compass. There are also people out there who are complete narcissists. They need an audience, they believe their story ought to be on everyone's mind and they will do anything to make people sing their praises. SOme people are pathological liars. For example, I met a girl in college who faked 2 pregnancies (I am not kidding, it was intense).

On the internet you have to be as careful as you would be while walking around a strange city or strolling anywhere at night. You cannot assume that because someone claims something in a blog, it is true. You have to fact check and get to know the person before investing anything like money or personal information with that person. Your radar has to be on.

Recently a number of special needs parents were scammed. I was one of them. My previous post has a link to another blog. The comments page has words from many of the parents and from the man(?) himself.

I first heard about the ipad giveaway on another blog. I won't mention which because it doesn't matter. The entry was simple (if you don't frequent a lot of blogs, this is pretty standard). Just leave a comment or send an email. No information besides name/blog necessary and no money sent. I have done this before and on one blog, I won a beartiful handmade doll for Maya (with that entry I had legitimate reasons to trust the blogger because I first read her blog through a real, established agency). The contest blog is a blog about infantile spasms. The Dad writes about his experiences with his severely disabled daughter. Supposedly he has started a foundation for fundraising and awareness. He also raises money for her surgery (that is a whole other discussion).

I entered Sam. At this point I figured, no harm in entering but we probably won't win.

We made it through the first round. The second round simple involved having your therapist or doctor send a note confirming that your child has the disorder you claim and that your child could in fact benefit from an ipad. I am lucky enough to have a therapist (through Sam's IEP) that come to my house so she sent an email to the blogger. Again, we were not asked for money or anything that wasn't already stated on my own blog so I wasn't too suspicious. I still figured it was a long shot and I didn't count on it.

Soon we heard that all forty of the finalists had been selected because this man's "bosses", who love to help him fundraise but want to be anonymous, could not make up their minds. We were all getting ipads plus credit for apps. At that point my scam radar went up. These are hot items. Individuals can only buy limited numbers. Maybe cooporations have different buying options but the contest was not through his company. Plus credit for apps? If they have all this money why not just pay for the kid's care? I KNOW Apple didn't donate all this stuff to him. That would be all over the news.

I also noted that there was no non-profit number for his "foundation". As I said before, I can call my blog the Ralph Waldo Emerson Foundation. That doesn't make me legit.

Again, I didn't worry because I wasn't asked for money. I figured if it was a scam, so what?

We "winners" were stalled again and again while he waited for "legal paperwork" from his "lawyers". We got regular emails "updating" us on the progress of this endeavor as well as detailing his daughter's care and condition. All this took months.

Then the ipads shipped. Oh wait, only 7 of them made it. Oh wait maybe 20 of them made it. But no one who did the shipping used a checklist so the man had no idea whose had gone out. At this point I was 100% sure this was a scam. No person I can imagine would ship such valuable items in such a manner. He emailed us that it wasn't his fault because HE didn't handle the shipping - some people at his company far away did it. He was going to make it right for us.

I know many parents were suspicious at this point. Some of us began to contact each other quietly. I still figured it was probably not for real but what is the harm in just waiting to see?

The we got an email from the man saying he was getting "threats". He sent us a copy of the email.

This is his email which includes the "threat". I blacked out the man's (contest man) name for now. Otherwise this is the complete email:

I just got a very disturbing email from somebody anonymous on the internet. I've included it in it's entirety... I apologize for the language in it in advance.
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Hi Mr. _______,I know who you are, and I know what you're doing with regard to the iPad scam, and all the other scams in which you've participated. I have all of your contact information, employment information, as well as your criminal history. I have archived your entire blog. I have a file that is ready to be sent both to the Fairfax County DA and police department, to Apple, and to every single parent who thinks they will be receiving an iPad from you.Here is what you need to do if you want me to drop this issue without reporting you. I want you toa) announce on your blog that no one will be receiving an iPad. I don't care what story you make up as to why this has happened, just announce it.b) refund all the donations.c) stop accepting money.d) get the fuck off the internet, you crazy, disgusting bastard.You have one hour from now to make the announcement on your blog (NOT in private emails) or the file will be sent to all concerned parties.Looking forward to your update,Me
PS I have spoken with Apple's legal department, and they have no idea who you are.
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I don't know who sent this. I don't know what their motivation is. I'm just letting you know. I'm trying to engage whoever this is in a dialog to see why they'd want this.
If anybody wants the email directly forwarded, then I'll be happy to send it.
-_____



At this point we were told all shipping was on hold while police looked into this. Protecting his family was his primary concern. There were no threats to his family in that email. It was just another reason not to verify shipping. It all came to a head this weekend. One blogger brought up what many of us were thinking and as you can see in the link I listed in my previous post. The person (actually 2 people who sent the "threats" have revealed themselves and explained their actions here:https://sites.google.com/site/bustedyourbunny/

After many demands to prove that the ipads existed, the contest man gave in and admitted there were no ipads. He still tried to come out looking good. This is what he said:

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. As to my obliqueness about my bosses and the company I work for, If their identities ever got out, long ago they promised I'd lose my job, my insurance, and take us for everything we have making Marissa's surgery impossible to afford. If I keep my mouth shut and the fact that I got screwed never gets out in any way then I keep my job, and my insurance, and they've promised to pay for Marissa's surgery after we give everything we can. 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. We're not going to fundraise any more. There won't be any more giveaways on Marissasbunny for special needs or otherwise. I'm still going to update with Marissa's surgical preps and that kind of thing, but that's all. Marissasbunny is going back to what it was before they got involved, back when many of you started reading. No more promotions, just Marissa and her brother's story. There are the first words that are my own and not through a corporate lawyer since Thursday. Regretfully,-_____

I suspect this is just another ploy for sympathy. If this man cared about his reputation in the SN community, he would not have put the dreams of so many on the line. I would not be surprised to find out this guy is using another name and site to fundraise in the next few years.

So what did he do that was so bad besides disappoint a bunch of struggling parents? I have said again and again that he didn't ask us for money. So what did people lose besides a little hope and faith? This man used the ipad givaway as a way to promote his fund for his foundation/his daughter's surgery. Some parents were so taken by his generosity that they gave to his fund. Other people who knew parents who were promised ipads gave money out of gratitude. Some people with no direct connection gave money because they thought he was a do-gooder. Also, some who didn't "win" in this round were encouraged to enter the next round which was a raffle. It required a small entry fee because according to him he was hit hard by legal fees for tje first givaway.

I had a lot of doubts throughout this process but in the bustle of everyday life with 3 kids and special needs, I didn't put a lot of thought into it. I wish I had really thought about what was going on and asked some questions sooner. Maybe if more of us had done that, people wouldn't have lost their money in the fundraising. I think we all owe SN Avenger a thank you for bringing this out into the open. Hopeful families would probably waited weeks more before calling this guy to the mat.


So bloggers and readers beware. If it seem too good to be true it probably is. If a group claims to be a foundation, there ought too be contact information and in most cases a non-profit number. If there is fundraising connected to the givaway, procede with caution. Some are legit but make sure you are are clear on where the money is going. If you win something that is worth more than a certain amount, there is paperwork you have to compelte for tax purposes.

unrest in blogland

I was working on a post about this but I think it has all been said here:

http://www.lovethatmax.com/2011/07/mystery-of-missing-ipadsand-unrest-in.html

read the comments too

Yes, we were one of the "winners". Unlike some of the parents though I never counted on it. There was a part of me that hoped something that good could really happen but the realist (cynic) in me was pretty sure it wouldn't materialize. There were too many things that didn't add up, too many "perfect" promises. I figured that an entry was relatively safe since he didn't ask for any financial info. As they say, there is no such thing as a free lunch. Maybe in a few weeks we will all be surprised . . . what are the chances?

Swings

If we could just bottle whatever it is that swings do to Sam's brain I think he would be ok. When he is pushed on a swing his body is calm, his eyes look around at a normal pace, and he smiles in a relaxed and happy manner. He stops stimming completely.

Unfortunately, the effects do not last a second past the time he gets off the swing but it is sweet in the moment.

Milk and Nice People

Yesterday afternoon, while I was helping Maya figure out a new game, Sam stole the carton of milk from the fridge and threw it around the living room. The rug was saturated and the piano had a big puddle on top.

As I cleaned up after dinner, Sam grabbed the salad spinner out of the sink and threw the leftover salad all over kitchen.

That was day one of the countdown until ESY begins for Sam. Come on, July 5th. .

On the positive side, neighbors have been calling me from various stores to see if I need anything. It is an amazingly helpful thing. Yesterday, a friend from work picked up bread and dish soap and this morning a neighbor brought over bagels. Since, when Mark is at work (6 days a week), I am homebound with the kiddos, I can't run out to get little thing like that when we need them.

New Therapist(s)

I am about to express my annoyance over new therapists. Please note thought at these therapists are lovely, dedicated, well-trained and well-intentioned women. I am just generally pissed off.

We are incorporating some new therpaists into Sam's home program. Why? Because I am Master of the IEP (yes, I have given myself an official title)Sam will get 8 hours a week of home therapy continous throughout the year (no breaks in the summer). This is in addition to his school and extended school year program. Will it make any difference? I hope so but I doubt it.

How did I get this many hours? I carefully wrote letters detailing the specific actions Sam engages in that create danger for himself and others. I also pointed out, in writing, that I was keeping anecdotal records of his behavior and making video tapes of Sam in our home. I also mentioned that I was considering private placements for Sam for which I expected the district to pony-up (considering all the documentation I have of his lack of skills developments and so on. . appropriate education environment. . )

The frustrating part about adding new people is that each person askes the same questions about Sam's behaviors. (what is you give him something appropriate to throw? so you make him clean up? have you tired an activity schedule? and on and on). Yes yes and #$@^#*& yes. We have been working at this home program for nearly three years with trained professionals and YES we have tried it. It doesn't work. Nothing works. He is stimming 90% of the time. He will not substitute something appropriate because part of the appeal is the loud thud and the way things break when they hit the floor. Making him "pick up" did not work in the classroom so why do they all think it will help at home? We make him do it because children should clean up after themselves but it has no effect on whether he will cover the floor with books a minute later. He will only follow an activity schedule if someone stands over him and enforces it. even then his limit is about 2 activities. He is capable of doing a puzzle or stringing beads but those activities hold no value for him so he will not do them unless forced. We do them anyway but after three years and no change in his interest or ability it seems like a waste.

So, while I am very happy to have these extra hours because maybe, just maybe they might help and they give me psychological and physical break (and those of you who know me know I am getting ready to add the psych hospital to my speed dial - for me or for Sam - who cares?), I am not convinced they will do much. The only suggestions a whole team including behaviorists, teachers and aides has given me are to make him clean up every 10-15 minutes and put him in his room (which is almost a "safe room" at this point since I had to remove almost everything from it). I made them promise out loud that they wouldn't call child services on me for shutting him in his room.

A number of people have asked why I don't just take the books away. After losing quite a few books I DID remove some books and box them up. I don't have anywhere to store those boxes right now so they are in the living room looking lovely. I also have another set of shelves in another room he hasn't gone after yet (although he is checking them out from time to time)and I moved some item there. The problem is, if I take the books away he will move on to the next thing. He is throwing the books because I took away the last thing he obsessively threw (blocks). Giving the blocks back, unfortunately did not reverse the habit. I know what he is considering for his next obsession: the picture frames. I could remove those too but then what? This is a compulsion that can't be blocked with the basic behavioral tools and I can't turn the house into a psych hospital. The girls deserve to be able to play. The big problem is that Sam has no other interests and no amount of ABA has been able to develop one in him.

The additional therapists are wonderful as I said before but I am already seeing looks of "holy crap" on their faces. They have reported back to their supervisor that Sam is one of the toughest cases they have seen. And while the validation that I am not crazy or doing something amazingly wrong is nice, it doesn't make me think that thing will improve any time soon.

On the plus side, due to generous support from family members who are hoping to keep me out of the psych hospital, Sam is probably going to day camp for two weeks in August.

Sam Stimming

This is Sam stimming with books (the voice in the video is Maya who is a bit jealous because she wants to make a video too). He does this most of his waking hours when he is in the house. When he is out of the house he does the same action but with other objects. The resulting mess is maddening. The sound of books hitting the floor still makes me cringe. We make him "clean up" but it has no effect on the behavior.

Diet Romance

I have been flirting with the idea of putting Sam back on a gluten free diet. We are pretty confident Dairy free did nothing for him last time around. He doesn't like milk and only eat sheese and yogurt anyway. I think I am thinking about it because one of the books I have had to rescue from Sam is Special Diets for Special Kids. I didn't find it to helpful the first time we did "the diet" because Sam couldn't have eggs and many of the recipes called for eggs. He has been cleared by the allergist to eat eggs now so I might get more use out of it. I re-read her story at the beginning of the book and it sounds so similar to ours.

I bought a bunch of gluten free products at the store today and when I checked out and realized the cost I had second thoughts . . .

THose of you out there who are GF, what do you do for lunch? Sam has to bring lunch to school and I haven't found (or made) a decent GF bread. GF pasta doesn't re-heat well. I am at a loss (I have already read the TACA site).

I don't know if we are going to head down this read again or not but I am going to at least start introducing more GF foods into his diet this week to see what he tolerates.

Anyone out there with a success story?