Sometimes we have to stop and reevaluate the direction we’re going in

One of the things I’ve shied away from since beginning my new life as a single , is the brutal honesty that once filled the words on these pages.  When I made the change to from , my goal was to tell a new story about our new lives.

Somehow along the way, I got into a rut and just haven’t found the words to dig myself out. 

Going forward, I plan on returning to the sometimes uncomfortable truth about my life raising 3 boys with

That’s not to say I haven’t been honest until now because I have.  It’s just that I shied away from the some of the things I should have been sharing because my confidence had recently been shaken and I just wasn’t in a place to write that way..

One of the reasons so many people followed me was because of that honesty and transparency.  It helped them to realize that they weren’t alone in their struggles and that someone out there understands.

Writing the two pieces on felt so good and that helped me to realize where some of my stumbling blocks were. 

Going forward, if reading about the very real struggles of an Autism makes you uncomfortable, simply don’t read it…. ☺

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  • Kim Gebhardt

    Regarding your posts on , what exactly do you want to see change? You’ve laid out why you don’t particularly care for Speaks, but it’s because of organizations like them that people are more aware of autism and what it is, and because of that, your kids have more help and benefits than they would have 30 years ago. Schools to teach kids and give them IEPs weren’t around. Your kids would have simply been in public and been labeled ‘the bad kids’ or ‘the shy kids’ or ‘the weird kids’ or ‘the stupid kids’ and they would have fallen off the radar and never had the chances that they currently have and will continue to have. Your health insurance wouldn’t have paid for OT and/or PT to help them with processing issues and speech issues and physical limitations… they and you would have been on your own. Dr. Pattie and her help wouldn’t be an option unless you wanted to pay for it out of pocket. Getting financial help through Social Security wouldn’t be happening. Go back another 30 years and would probably be in a State run institution. Awareness and research isn’t about just helping families in a direct manner, it’s about figuring out the condition and what can help make it better, and in some cases cure it. And because we know more about autism than we did years ago, your kids have a better chance at a future.

  • Kim Gebhardt

    But they do help families, just not by handing checks to individuals. What they do is grant money to programs which in turn help individuals/families.

    You mentioned in another reply that Speaks spends most of their money paying inflated salaries. Well, I looked at their financials and that’s simply not true. In 2014 they raised $57 million and had an admin fee of 5.1%. Do you realize how low that percentage is? Komen is almost double that. I run a non-profit and my admin fee is 5.5%, and my salary takes up about 40% of that. 5.1% is outstanding, especially when you realize that the 5% is not just for salaries. It’s for office space, telephones, computers, supplies, web design and upkeep, and a host of other things that the average person never thinks about.

    I have no love for AS. I understand that they’re controversial and that I’m on the outside looking in, but they DO help. Maybe not in the way that you want them to, but they are making a difference.

      • Kim Gebhardt

        I understand the feeling towards them and I even understand why some may feel as they do, but I don’t think they’re quite the monsters people make them out to be.
        Question: I know you love your kids and say you wouldn’t change them for anything, but if you could take away even one of Gavin’s disorders and give him a better and more independent life, wouldn’t you do it? How about if you could wipe Elliott’s away or take away Emmett’s issues? Would you do that? I see people comparing AS to Nazi Germany and thinking that they’re all about eugenics, but I don’t see it that way. I see it as them trying to help make things better for the future. As a way of either getting rid of a disorder or making it easier to live with. Is that really so bad?

        • Jimmy Rock

          Kim, for all the good it has done, AS has historically had a very disturbing attitude towards autistic individuals. Considering it is the most influential and well known organization of its kind, there has existed a bizarre disconnect between it and the community it represents. Recent changes in their leadership and recent appointments of 2 autistic individuals to their executive board, as well as the resignation of their longtime chairman of the board (and new appointment) is hopefully a positive sign. I could really delve into this but people who are far more articulate than me, many of whom are autistic, have written about this all over the place.

          And as far as “wiping away” any behaviors, that’s a very slippery slope. Many autistics, and the people who love them, realize that they cannot be so easily separated from some of their challenges. It’s part of what makes them *them*. John Elder Robison, a fairly prominent autistic (“Look Me in the Eye” is his fantastic memoir), recently published “Switched On” about his recent experience as part of an experimental study on the effect of TMS on emotional intelligence. He came out of the study profoundly changed — and on an objective standard “improved” — but perhaps not for the better. I haven’t read this yet, but I’m sure it’s excellent, as is his previous work. Mr. Robison, by the way, previously was on the Board of AS, but ultimately resigned in frustration because of their backwards and bizarre (but not Nazi) philosophies.

          These aren’t easy issues and require a much more thorough discussion than I’m willing to engage in here. Fortunately there are many resources easily and readily available if you wish to further educate yourself on the subject.

          • Very well said. Kim, that’s what I was trying to get at but my brain isn’t firing on all cylinders today…

            Thanks Jimmy… Very, very well said…. ☺

          • Kim Gebhardt

            Hi Jimmy, sorry for the super delayed reply but life got in the way last night. 🙂
            I hear all that you’re saying and I think on the surface, having autistic people on the Board makes perfect sense. However, when you scratch the surface and look at the rules and regulations of the non-profit world, it’s not quite that easy. I run a non-profit. I cannot add or subtract ANYONE from my Board without meetings and Board approvals and resolutions and a host of other criteria. Secondly, I cannot have anyone on my Board who may benefit from the services that my non-profit offers, nor can I have anyone who makes donations to my Foundation on my Board. Not following the criteria can have a terrible impact on the Foundation. Worse case scenario, I would lose my status as a 501(c)(3) and be well and truly f**ked. Best case scenario is a nightmare of paperwork and explanations and everything hangs in the balance while it’s straightened out. I’m not saying that this is why AS functions as it does, but again, it’s not as easy as just ‘putting someone on the Board’.
            As for wiping away behaviors, I agree that it’s a slippery slope, but I really am curious if parents would get rid of some of the challenges their kids face. I mean, if you are willing to medicate a child to help decrease or attention deficit issues, wouldn’t you also be willing to give a pill or a shot to cure that same problem? I feel like people are afraid to say that they would do it for fear that someone will think they don’t love their child just as they are. Someone over on Facebook said it well when she compared autistic children (hers included) to unicorns.

            • Jimmy Rock

              Kim, i appreciate your knowledge of the mechanics of non-profits but this isn’t about the rigors of board appointments. My post referenced the fact that previously appointed autistics to the AS board had resigned because of the organization’s philosophies. I also expressed optimism because of their recent appointments of autistics to their board (including Stephen Shore- look him up) the resignation of their chairman, and other executive moves. Not sure why you thought I was suggesting that AS simply needed to “put someone on the Board”. The problems that AS has have nothing to do with potential conflicts of interest when making board appointments. See my comment above, as well as one I made from several weeks ago when AS came up for more on my issues with AS.

              And on to the slippery slope…and this gets to part of why some believe AS has gotten it wrong throughout most of its history. isn’t like cancer. I’m sure everyone would agree that eradicating cancer, and destroying cancer from individuals’ bodies would be a wonderful thing. Eradicating autism? Or even trying to parse out specific traits and eliminate them? Not the same — and not so easy. Read what Temple Grandin has said on the subject. See my earlier post about John Elder Robison and his most recent book.

              I really could write more but (1) my more detailed opinion on this is more personal than I care to share in this forum, (2) this subject matter s is all over the Internet and I doubt I could be any more insightful than anything else already out there, and (3) I don’t want to hijack Rob’s blog anymore! Oh and (4) I’m kind of tired, although not tired as Rob seems to be – he’s on a lack of sleep blogging roll lately…. 🙂

              Kim, I appreciate reading your comments on this blog…