The First Cut is the Deepest

I apologize in advance because some of this may not be of any interest to many of the readers who subscribe to my blog but I wanted to write a post about it here for a couple of reasons. One is that I haven’t blogged since November and this post is partly an explanation for my absence – I want to give you all a reason why I’ve been too upset to write, rather than just jumping straight back in the saddle (not that there’s anything wrong with that 😉 ) The other reason is, I just need to get this out there. I need to write down how I’ve been feeling and I hope it will be read and will give some of you pause for thought. A good friend of mine, Lara Cross Benefield, has been feeling the same in many ways and I’m hoping she will share with you in a subsequent post how this has impacted her.

As many of you know, since May of last year, I have been involved with a website and Facebook community called A4cwsn. I promoted the community on this blog and I still believe the website provides a valuable service – a video review of apps that parents can view before deciding whether to buy. I was admin on the A4cwsn Canada Facebook page and appreciated the opportunity it gave me to get to know some truly wonderful people.

For those of you not familiar with the A4cwsn community, the last couple of months have been very tumultuous. A number of long-term supporters have been blocked from it’s Facebook pages and villified as “haters” by the page owner (Gary James), his wife and his supporters. I don’t intend to rehash the details of what has happened here, it’s too painful to me personally and its of little interest to anyone outside the community, who are already aware of what’s transpired.

So, what am I trying to say with this post? Well, there’s a question that people have been asking that I think I can provide an answer to. In answering that question I’d also like to share some reflections I have had that, in my opinion, are important for all special needs parents to consider, whether they have been involved with A4cwsn or have never heard of it before. The question many people have asked myself and others is a reasonable one – how could we have been involved with A4cwsn for so long and not have raised concerns earlier?

In answering this question, let me first provide a little context. What really drew me to A4cwsn in the first place was apps. I already had iPads for my boys due to the fundraising I did on my own and the generosity of friends, family and strangers.  Over the course of a few months the focus of A4cwsn moved from apps to iPads, specifically raising funds in order to give iPads to special needs children. This is a laudable cause and one I naturally gravitated towards given the benefit I have seen in my sons since they received their devices. Gary launched his campaign to give 50 iPads to 50 children in 50 states and the idea struck many of us as bold, ambitious and exciting – we could work together to tangibly change lives. However, as time progressed there were a few issues that some of us were finding it increasingly difficult to understand. Why did we have to raise money to cover Gary’s fuel and accommodation costs so he could drive across the U.S. and deliver all the iPads personally when Apple ships for free? Why was Gary so aggressive with respect to his timeline and in pushing everyone to finish raising the money needed as quickly as possible? Why was there so much pressure put on individuals and developers to donate?

In early September some of us got an answer to that question. At that time, Gary told four of us that he only had 3 to 6 months to live.  He had publicly stated before that he had survived two bouts of cancer so this revelation didn’t come completely out of the blue but nonetheless, all of us experienced it as a huge shock. Despite the urging of some, he didn’t want this information disclosed to the A4cwsn community and we were asked to keep it a secret. In private, those of us who he had told realized that many things we had questioned now made a lot more sense. Gary was pushing to complete the 50 iPad campaign and we pledged to help him because this would be his legacy. We didn’t understand his choice to spend so much time away from his family on the 50 iPad tour and in fact we doubted whether he would be well enough to complete it. However, we supported his choices because they were what he wanted. We put up with emotional abuse from Gary because we believed he was dying.

After the 50 iPad tour was over we expected there would be a focus on getting Very Special People Inc. (VSP) up and running as soon as possible. VSP would be the non-profit organization affiliated with A4cwsn.  After all, someone who was terminally ill with such a short time left to live would surely want to ensure that all the elements of a succession plan had been put in place, right?  What slowly became apparent however was that everything was business as usual as far as Gary was concerned. We weren’t going to wait until VSP had received tax exempt status; in fact we were going to, not only continue, but ramp up our fundraising efforts as much as possible. Since the 50 iPad campaign, three new GiveForward accounts have been set up with Gary James as the beneficiary. The “iPad 4 the Holidays” campaign raised $6,145 and this fundraiser ended on December 4th. There are currently two active GiveForward accounts with funds in them totalling $4,369.

Assuming the prognosis Gary’s doctors gave him proves to be accurate then his family will be mourning his loss at some point during the next few weeks. At that time, what happens to the A4cwsn monies still in his personal bank account? What happens to the money in the GiveForward accounts of which he is the personal beneficiary? What happens to VSP and A4cwsn and the hopes raised in the community that VSP would provide, not just iPads and apps, but jobs for stay at home parents and therapies for their special needs children? Let me be clear here, with respect to Gary James I am not saying that he has scammed anyone but I do have very real concerns about thousands of dollars of other people’s money being in the hands of a terminally ill man with no safeguards in place.

Together with my friends, I was a part of building a community I loved. To be rejected by that community when all we sought to do was protect it has been hard. Not only have we lost something that was an important part of our lives but we’ve been subjected to calumny and vitriol, just for doing what we felt was the right thing. In reflecting on the broader lessons I’ve learned as a result of this experience, many of the  salient points have been covered by three of my friends in a recent joint blog post. Rather than repeating them here, I’ll just give you a “linky do” (new phrase learned from a friend) 🙂

http://racersmommy.blogspot.com/2012/01/dearly-beloved-we-are-gathered-together.html

In addition to the points made by Lisa, Jill and Caryn, I would like to add one extra thought. Caryn eloquently argues that our strength as a community can ironically be used against us. I agree and would add that what makes us especially vulnerable is the fact that so much of our lives are conducted online. All the friends I’ve referenced in this post (and incidentally, my partner) are people I have met via the internet.  Twitter, Facebook and other social media sites are where we find support, people who understand us and answers to our many, varied and complicated questions regarding our children. We’re used to trusting people we meet online because without our online community in many cases we wouldn’t have a community at all.

For this reason alone I would suggest that all of us need to apply a higher standard to those who claim to help special needs families. In my opinion these individuals and organizations need to not just act legally, but they need to act in a way that is above reproach. There should be more accountability required of these people, not less. As special needs parents we must act to ensure that the bar is raised higher when it comes to our families and refuse to settle for the bare minimum in terms of protection.

For those of you who are wondering where the title of my blog post comes from I’ll paraphrase some lyrics which, for some reason seem to encapsulate how I feel about losing a community that was a source of fun, information and most of all, support. My apologies to Cat Stevens for mangling his lyrics and to you all for the mawkish sentimentality, but hey, it’s my blog and I’ll cry if I want to:

I gave you all of my heart
but there’s someone who’s torn it apart

if you want, I’ll try to love again
I’ll try to love again but I know

The first cut is the deepest, baby I know
The first cut is the deepest
’cause when it comes to being lucky she’s cursed

I still want my friends by my side
just to help me dry the tears that I’ve cried
I’m sure gonna give it a try
and if you want, I can try to love again
I’ll try to love again, but I know

The first cut is the deepest

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33 Comments on “The First Cut is the Deepest”

  1. Lisa Gallegos January 13, 2012 at 11:51 pm #

    I love you lady!! Always grateful for being able to meet you online among tons of people and you are one of the ones who stuck.

    Being friends with you and sharing everything has made life enjoyable. ((HUGS)) to you and those boys! You are a awesome friend and a wonderful mother!!!

  2. Virginia Dorrell January 13, 2012 at 11:53 pm #

    Well Done, D, Well done!

  3. Tiffany January 14, 2012 at 12:07 am #

    Brilliant D.

  4. trishasmom January 14, 2012 at 12:16 am #

    Great blog! Remember many months ago I mentioned about putting a person on a pedestal well this is why I mentioned that. I had my doubts a long time ago and there were so many red flags. But in all honesty if we follow someone as if they were the piped piper and blindly follow without question then we have to accept part of the blame as well. I know we all want what is best for our children but at what cost? Do you know I have an aversion to the F5 key because of that page.

  5. Emma Apple January 14, 2012 at 12:25 am #

    I’m still involved with A4, I don’t want to go there (I am not getting involved), I just wanted you to know I feel the sadness in this post and I miss you very much. I look forward to this all being over for everyone, whatever the eventual outcome is.

  6. Caryn January 14, 2012 at 12:34 am #

    Well done. Very VERY well done. You know I’m in your corner, m’dear. Sending lotsa love your way. -C-

  7. Gail Pubols January 14, 2012 at 12:35 am #

    Very well written, interesting, and sad post. I hope that others can learn from your experience and won’t have to go through what you did. What a shame that this man is terminal and is not making sure his legacy is protected. I hope it all gets sorted out. Thank you for trying to help other parents. Not always easy, but always worth it in the end.

  8. morgansx6 January 14, 2012 at 12:48 am #

    Thanks Deanne for putting into words how many of us are feeling.I feel so blessed to have met you and all my other courageous friends. xox

  9. edebw@yahoo.com January 14, 2012 at 1:55 am #

    Well written. This is the best post that I have read on this controversy.

  10. Anne Yates January 14, 2012 at 1:58 am #

    My heart felt heavy as I read your blog. Many months ago, you defended him and his cancer to me on the phone. I am sickened that he took advantage of your compassion. I am proud of you for writing. I know it was really difficult to do. You have my absolute respect in how you presented the nightmare that you have gone through.

    • Rivkah Hammer January 14, 2012 at 7:36 am #

      The more I hear the more I know I made the right move in questioning him!! The best thing to come from all this mess are the friendships I have made from those banned and bullied by Gary James. Good job Deanne 🙂

  11. Kaisa January 14, 2012 at 7:30 am #

    Great post, D.
    I hope this makes people realize WHY the people, like you , who poured their heart and soul into A4, feel the way you do. It goes way way beyond the ridiculous idea that everyone is jealous about not getting an iPad (which is clearly not the case).

    I just hope to God that no one would actually lie about being terminally ill with cancer. I really do. I don’t think there are words for how wrong that would be.

  12. Rhonda Logan (@pugariffic73) January 14, 2012 at 8:38 am #

    ((hugs))

    Sorry you all had to go through that. For 2 days i sat here astonished reading the blogs and picking my jaw up off the floor at what you all were going through. It’s horrible what has happened to you, and all of the other members involved in this scam. At least you all can walk away, lesson learned with all of your dignity in tact. ❤

  13. Autismmom1021 January 14, 2012 at 9:12 am #

    Exceptional. Love to read your writings! Always inspired.

  14. Gingerheaddad January 14, 2012 at 9:52 am #

    I know that your relationship with A4 started with such enthusiasm and support. It is so tough for other parents of asd kids to trust that someone is actually hearing them, let alone supporting them completely. That a lot of people experienced a lot of unpleasant things simply by voicing concerns about the direction of the group reinforces that “show me” attitude that we have when it comes to medical professionals, educators and bureaucrats standing in the way of what we want for our kids. These issues with A4 developed over time and it is reasonable to think that you and others tried to guide the organization. Unfortunately you received grief and invective in return.

    It is very hard to call attention to bad behaviour and questionable practices when you know how hard it is to find support as a parent.

    I hope this post provides a cathartic moment and that you will be able to bring your voice back to your blog.

  15. Holly Stillwagon January 14, 2012 at 11:04 am #

    D,
    I know how difficult this was to write, how you must have wrestled with the choice of voicing this “private matter” to the public. I know you did not enter into this lightly.
    I’m proud of you, D, and so glad to have met you.

  16. Karen V. January 14, 2012 at 11:05 am #

    You are a smart woman and a grateful one who tried to “pay it forward”. Your eloquence and intelligence has come through in all your blog post. That is no less the case here.

    I am far removed from this whole controversy but I do know you thru our online community enough to know where your heart is and know that every sentence here is one worth reading and absorbing for every special needs parent out there.

    Getting back on the blogging “horse” after that hard throw is brave and should prove quite cathartic. It can only make us all stronger.

  17. A January 14, 2012 at 11:08 am #

    Some of the drama sounds like poor relationship and social skills, it’s tough managing people and lots of people fail. You may be right on target and there are critical problems that show low moral turpitude but people also aren’t going to follow your vision & timeframes either. Ego gets in the way, people seek fame that others do not want and in the end say a profitable movie or DVD results that helps more kids. There are better ways to help kids but non-profit and traveling are not inherently wrong to me. Lies and omitting truths are wrong but I think I’d worry about timing and death a lot more after surviving cancer too. I worry and waste less myself whenever I think for a moment about special needs lists we face.

    I have no idea what the story is but as an outsider I’d say to compete with your own non-profit and heal or make up of sorts. If it is ever possible sometime down the road or don’t rule it out — but protect yourself and seek healthy boundaries and time & energy with healthy honest trustworthy people.

    Hiding the story and truth is not needed or possible in this Internet age, the truth will surface with time regardless of what people want to believe or convince others to believe.

    But don’t let it stop you or preclude you from sharing and posting!!! The community is big and has room for many views and ways and you are a good strong well-intentioned one we NEED to watch our backs now more than ever it seems! YOu GO go go!!!

    • I like A January 27, 2012 at 11:11 pm #

      well said – I stumbled across this and it sounds like any huge blow in in any number of groups I’ve belonged to or seen where online communities and fundraising tore people apart. I hope you all heal and you and your children fare well from adaptive technologies. Is this the man from 60 minutes? Has anyone considered skiing their experienced team of investigative journalists to revisit the piece and the new controversy? If this is widespread they very well may rerun in in a slow TV month with new info and if its egregious … but they have the tools to suss out the truth and the legal understanding to differentiate between non profit and for profit and trustees etc.

      best of luck to you all

  18. Trish January 14, 2012 at 11:12 am #

    I’ve been having a really bad feeling about A4 since the summer, after Gary became obsessed with the iPad project. I couldn’t put my finger on it, but it made me uneasy and by November I had dropped both the facebook and the twitter connection. I didn’t know he was dying, though he also told me he’d beaten cancer in the past. I thought he was a narcissist and wanted to be seen as some sort of saint or Father Christmas. That he needed the joy and gratitude from his iPad recipients to feed his psychosis. I’m sorry to sound so cynical, but I find his prognosis to be hinky as well. Was this just a way to manipulate those in his inner circle to do what was necessary to get him the tools he needed to feed his ego? I’m especially sorry that you and others like Lara were pulled in by the idea that you were doing a good thing to help special needs children. That has happened, so maybe it will help you to remember that you made yourself vulnerable for a good cause.

  19. tam554 January 14, 2012 at 11:58 am #

    Amazing.. It is as if you stepped into my heart and translated its feelings so beautifully. I am so blessed to have met some amazing people through that group. Months of working with them helping them to find what is needed for their child. We made connections with developers and shared them. We talked on the phone till all hours of the night with people consoling them. We offered up what helped us through a particular situation in hopes that it saves someone some anguish. I have an empty spot in my heart for the friends that turned their back on me, but at the same time understand that they did what was needed in hopes of having their child’s needs met. I miss them… was my last almost 10 months wasted NO. The idea is a great one! I hope that some organizing takes place and allows the dream to come true. I pray that each of the followers/ community members get what they so desperately need out of this page. We shall see.

  20. Amy Gould Caraballo January 14, 2012 at 12:00 pm #

    This reminds me of another person who has been known to defraud the Autism communities pretending to be all sorts of different people with many different credentials. Has anyone done any research to see if this person is who he claims to be? I’m suspicious.

  21. Colleen Marie January 14, 2012 at 12:20 pm #

    Another excellent post D! I have been wanting to say this for a while – you are a true inspiration of moral courage. I know it sounds corny but you are not afraid to stand up for the truth and what is right and insist on that from others. Our kids deserve the best and you demonstrate in your words AND actions that this is where your heart is. -Colleen-

  22. Tracy Sherwood (@Petunia_tracy) January 14, 2012 at 12:24 pm #

    A beautifully written post that echoes the worries and sentiments that many of us have. Your sadness in having those who you counted as friends in the community YOU helped build turn their backs on you is evident in your post. Its almost tangible. I have met some amazing ladies online and through the page and am glad to count you as one of the ones I respect the most. What could have been an amazing community of SN parents has been soured by one person it would appear.

    The truth will out eventually. It always does xx

  23. Diane January 14, 2012 at 1:09 pm #

    We are close friends with Lara, and so hate this situation. Our daughter received an iPad from the amazing fundraiser Lara organized. To give forward, we thought it would be great to ask for donations instead of birthday presents at her party and use that money to help purchase an iPad. Our original thoughts were to donate to A4, but in between planning and my daughter’s b-day, I saw how horribly you were all treated. I know and trust Lara and knew she had been nothing but positive, so that made his rantings seem like exactly that, out of control rantings. We worked with our Church and were able to raise enough to get an iPad, case and $100 in apps for a wonderful special needs family. Here’s the realization I had from this. During the planning time, all the holiday sales were going on. There were 2 apps in particular that would have been $75, but were free. I so wanted this family to have these, but the developer wouldn’t extend the sale or supply codes–obviously fine. Soooooo, the only way I could get them for the family was to actually call them and have them download the app. I wasn’t sure how I could do this without tipping them off, but worth the risk. Here’s the thing–they suspected nothing. Why? Because as fellow special needs parents, we develop an immediate and strong trust for other special need parents. As the mom said, “You said we needed this, so I just figured we did and downloaded them.” No questions asked….no what are you be up to….no why are you asking me to do this…..just complete trust. I will always be so grateful to A4 and Lara for helping our daughter, but I’m so hurt that this very special trust that does make us vulnerable was broken by A4. After Gary published your names, I knew how dangerous he was. As I said to someone else, we were so happy to give this family an iPad–we certainly didn’t expect anything in return, and we certainly would never, ever hurt them by publishing their names on the internet in such a hateful manner. You’re right, we do have to be more careful–I just wish all of you didn’t have to learn this lesson in such a hard way. But know that your sharing will help many, many people.

  24. Anonymous January 14, 2012 at 1:12 pm #

    I’ve been involved with A4 for a long time, though not so much on Facebook. I understand the concerns here, but I think the problem is more likely to be a lack of organization and growing too rapidly. I don’t believe that A4 was ever a scam, or that Gary was or is trying to steal people’s money.

    I have not been aware of the banning of people for “questioning” Gary. Only of the turf war between Gary and Jeremy before and during the “Back to School App Party” that Jeremy was involved with. Not to say that it didn’t happen.

    The people who are scanning Twitter for mentions of A4CWSN and then spamming them with blog links, in my opinion, are out of line. This is the first post questioning Gary that I’ve found to be anything near civil, and as a friend of Gary’s, I’d like to thank you for it.

    I don’t think that any mismanagement or deception was intentional. I hope that the organization of VSP will clear all this up, and I hope that more people can start acting like adults and be constructive like you are being here (though I think many of your commenters are missing your point). I hope that soon we can be brought back together for the good of our kids.

    • trishasmom January 14, 2012 at 2:33 pm #

      for me there were to many red flags for me not to take notice. His whining about people unliking his page was very unprofessional, his writing comments and then removing them another sign that sent up a red flag for me. For me (just MY own opinion which we are all entitled to) the group reminded me of a cult which is what turned me away from that group altogether. Before anyone jumps on me, I didn’t say it was one, I said it reminded me of one.

    • Anne Yates January 14, 2012 at 2:35 pm #

      VSP is not A4cwsn. There is not simply a shift of names. The receipts for money donated show A4cwsn. It has been VERY clear that the money donated this year will NOT be accounted for with the IRS. It is “gone”. VSP is just a means of collecting money, but because VSP is a Non-stock organization, NOT a non-profit, transparency with funds is NOT required AT ALL.

    • Gail Pubols January 14, 2012 at 7:23 pm #

      I understand your position, but would like to know if Mr. James is actually terminally ill. As a close friend I am sure you would be aware of this. I am also wondering if you have any insight as to why he would berate and bully people online? Whatever the truth is, surely you can’t condone his baiting and bullying tactics.

      • Anonymous January 14, 2012 at 10:33 pm #

        I’m a friend, but not a close friend. He has never mentioned being terminally ill to me. Sure, I would also like to know, out of concern for him. But I don’t think that it’s my place to ask him about it.

        As for the baiting and bullying, I’m seeing it from both sides and it’s certainly not the right or mature way for anyone to deal with things. However, assuming that he is innocent of embezzling money, and I’m fairly certain he is, I can understand the frustration that he must be feeling. He’s trying to help kids, and he sees people organizing to undermine his efforts, like the recent SunSuper episode. The efforts to keep A4Aus from winning were contemptible. I gather that he feels he is “defending” himself and the good work that he HAS DONE. He’s not going about it the right way, but I am sympathetic.

  25. denise render January 14, 2012 at 1:43 pm #

    Wow! Wowee! Wow!
    I knew in my heart of hearts that something was desperately wrong. We have dealt with a very ill person, who needs our prayers.
    Thanks for sharing what my heart already knew, but my head did not want to believe. The truth sets us free!!! I Hope our person gets set free and restored to perfect health, mentally, physically and spiritually.

  26. Cynthia Gregory January 14, 2012 at 1:53 pm #

  27. j pearson January 24, 2012 at 11:22 am #

    None of this “poor organizational skills, poor communication skills are going to matter if someone sues him, or he gets arrested for cyber threatening someone. You cannot pretend, lead people on to think you are a charity, when you are not, that is against the law. For those that just want to blame it on his illness (whether that is true or not) do you actually think the IRS is going to care??? They wont’. He is not only hurting himself, but if he seriously is terminally ill, they will just go after funds left for his family instead. Let alone anyone working for him has the potential of finding themselves in trouble as well, as co-conspirators. There are so many screen shots of him saying to people on Facebook that he either is a charity, or in the process of being a charity, he just doesn’t have the ability to bite his tongue.

    When I joined up, I just observed from a distance and beyond that had nothing to do with the organization as I could see what a disaster it was. I work for a online forum and when we hold contests you have to follow through, if we bring 3rd party people in to do contests and they fall through, then we still have to follow through. If they promise to give someone an Amazon card and they stiff the person, we shell out the $50 Amazon card, as we are not in the mood to be sued. When we have our Charity section give things away..we have to follow the letter of the law. We have pages and pages of rules with our organization to cover our butt. Gary is going to get sued, he is going to find himself in trouble with the law, you CANNOT run an business/organization or fake charity this way and last forever. Between someone getting sick of it and suing, and the Government catching wind of it..someone will get dark and dirty with him and take legal action. It’s just a matter of when.

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