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What Are You Looking For In a TS Blog?

Greetings from Los Angeles. As of today, tics for Stink remain at a minimum. (Knock on fake wood desk.) I need to make a few gluten free sandwiches with natural strawberry jelly and carrot sticks (can you feel my son’s excitement?) so I’ll keep this short:

Is this blog enough?

Assuming I continue to write 3 days/week, I really want to know: Why do you come here?

* Tips on diet?

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Emotional support?

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*Updates on my year without beer?
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That’s me on the right!

I ask because I’m considering doing another site – a kind of “upgrade” support group type site. I belong to my beloved private one – Twitch and Bitch – and it’s been awesome. As much as I love writing here – and will continue to for FREE – I wonder if maybe it’s time to dig a bit deeper and bust out the diet charts, the doctor referrals throughout the USA, the homeopathic ads and all the stuff that has really helped Stink.

The fee would be minimal and it would provide a deeper connection to folk going through crisis. As a produced TV and magazine writer, it would also allow me to continue to make a living at my craft providing content for what I am passionate about, rather than taking on another gig pushing organic diapers for $5 bucks/ post to elite parents with kids named after cities and house plants whose feeeeeelings define the universe and who think tics are little black bugs you catch at camp.

My concern with an upgrade site, of course, is that I don’t come of predatory. Example: A big reason I don’t have blog ads here is that I am not a fan of the whole “Oooooh, your son is having seizure like face tics? Click on my ad for magnesium so I can make 6 cents on a click-through and you can waste money on a supplement that may or may not work.”

* For the record: Love the magnesium! More on that another day. (And those You Tube ads at the bottom? Not sure how they got there. Like tics, some things remain a mystery and I can’t worry about it.)

In conclusion, go check out my favorite TS site – the New Jersey Center for Tourette Syndrome. They could use some love and some bloggers also. Are you a writer? I will hook you up over there! Great for your portfolio and you can help moms and dads struggling with tic issues. Their latest post? Dental appliances and tics. I spoke about that once before and it’s an option if your kid’s tics are really yukky.

So…. feedback please! I really want to know what you think of an upgrade site!

14 thoughts on “What Are You Looking For In a TS Blog?”

  1. Thanks for the love Andrea! We are trying to find out what people want, too, and so far, we haven’t received much response. We think a lot of people out there are just silent readers. At least on our site. On other sites, however, there are TONS of people participating and commenting. Check out A Little Bit Different: Tourette Syndrome on Facebook. This girl is a teenager who blogs for our Teens4TS site, and she has one of the most responsive TS sites on the web. Perhaps we can put our minds together to develop something along those lines. Let us know!

    1. Hi Jeff – I think you are doing a great job with the site in NJ. It looks good and you have great content. Your outreach and response is really fast and supportive. I believe that the reason people don’t comment much on TS, here or on yours, is that parents are in huge crisis and feel awful. TS is still believed to be a cursing disorder by so many folk and when someone’s kid is first diagnosed, their first response is likely, OH NO MY KID IS GOING TO CURSE THE F WORD IN CIRCLE TIME! So they don’t give it a name so they don’t have to deal. If they don’t write about it their kid doesn’t have it. I think that the reason the teen is having so much luck is she’s calling out the elephant in the room – herself. It’s not someone talking about their kid. It’s her talking about HER issues. I still think there is a huge need for parents to talk, but it needs to be done with candor and humor, not scare like so many other sites. I can talk to you offline if you like – but wanted to lend my support that you are onto a good thing. Keep going! I will keep writnig for you!

      1. Thanks Andrea, we appreciate it. Let’s start up an e-mail conversation about this. That’s the best way for us to communicate, and that way there is a paper trail if we ever need to go back to reference some ideas!

  2. Absolutely! Go for it-m you deserve to make a living doing what you love and what is, judging by myself at least, so sanity-saving. I def came here for emotional support, especially in the beginning. I also get so much info from you (just started a new supplement that seems to be helping), not to mention (in a last but not least kind of way) the laughs. I love your writing. I’m in!

  3. I’m always interested in alternatives to pharmaceutical drugs, so I’ll say yes. I found your blog through TSParentsOnline. I’m also interested in finding more on the associated behaviors/disorders with Tourette’s more than the tics. For my child, these are the issues that interfere the most, mainly anxiety, getting very easily frustrated and rage.
    To my child’s dismay, we’ve been GF for a year now and I would be very interested in finding out what supplements your son takes and what you’ve found that works. My child’s tics seemed to be less severe when we first stopped eating gluten, but at the moment there doesn’t seem to be much of a difference.

  4. Andrea – I don’t follow blogs as a rule and have never commented on one other than yours. (Which I found, as I’m sure many do, when I first realized my son had TS and was googling like a madwoman.) I find inspiration in your posts and hope that you continue this blog for all the mothers who find themselves gobsmacked by chirps and eye rolls and don’t know where to turn. I’m not sure if I’d pay for diet info and the like or not.

    1. Gwen – I would never give up this blog. It is my committment to moms (and dads) in crisis as well as healing who need connection. I aim to always post 3 days/week. Do you think, besides not wanting to pay for diet tips, it’s “predatory” to charge for other things like other membership sites do? Example: Chat rooms, podcasts, guest speakers, testimonials, etc. ? Thanks for your candid input!

      1. I don’t think it’s predatory, but I think you have to really deliver on what you promise. And obviously you’d need enough members to make it worth your while. What’s the ROI? i.e. Is the effort you would have to put into it worth the pay off?

        I’m not really familiar with paid membership sites, so take my opinion with a grain of salt. But I, personally, would likely not pay for those things, although I might have two years ago when we first started this journey. Because then I needed information, information and more information. Now that I am past the OMG stage and moving on to the acceptance stage, I really just want to connect with other mothers for commiseration, support and advice. One of the best things I ever did (for my own sanity, and for my son’s tics), was step away from the computer, stop researching and start accepting.

        (Lest that sound too self-righteously, path-of-enlightenment-y — rest assured I’m nowhere near Nirvana. It was only a week or so ago I was doing chores in the kitchen while listening to sports talk radio because I couldn’t figure out how to change the channel on my husband’s little portable transistor and I needed something to drown out the tics from the living room lest I burst from the relentlessness of it all! But knowing I can step away and not have to wonder if it was the cat’s flea medicine or a morsel of gluten or not enough epsom salts in the bath that caused it (while still taking those things into consideration in the big picture) makes a big difference in my mental well-being which in turn is better for my son.)

        So what I’m trying to say in a very verbose way (sorry!) is that I would pay for a bulletin board if it were active, but information, not so much.

        Thanks for your blog and your concern for other parents who find themselves in the same boat. You are making a difference, even if it there is no monetary reward.

  5. I absolutely love your blog! I usually don’t follow blogs either, but I visit your site frequently, mostly for emotional support. It always makes me laugh and helps to remind me to stay positive and to keep things in perspective. I think a website upgrade is also a fantastic idea and would love to see more information on what works for others. It’s hard to say how much diet has affected my son’s tics, esp. considering they went away completely over the summer when he spent most of his time outdoors playing and swimming. He pretty much ate everything under the sun, although he really didn’t watch any TV or play video games. He also had a huge growth spurt at the same time the tics went away. Not sure if there is any correlation? I think good healthy living and reducing stress certainly helps a lot. I think for me I’d also like to see something on ways to help reduce stress and anxiety.

    1. Marisa – Thanks for reading and glad I can make you laugh! (Someone needs to appreciate me. :0 ) As for the diet, you sound like me. My son seems to do best when he is stress free, even more than with food, but the food component is there, along with less screen time, more sleep and tons of exercise. THANK YOU for being a loyal reader. I appreciate you! Andrea

  6. very very interested in everything you have to say. Your site has bought he huge comfort in recent months as we begin this scary journey with our son. I check your site every day in hope of more good news with your son’s progress . thank you for all you have done – you also make me laugh A LOT ! 🙂

  7. As I am newer to diet and finally getting serious about pursuing some eliminations and perhaps more vitamins or supplements I would be interested in that. Especially if you have a real yummy gluten free, easy, nutritious recipe you wanted to share. I like hearing about things you’ve learned and things you think are crap (people trying to get your money). Love your writing and hearing about stink and pip of course.

  8. I would love it! I don’t think it’s predatory at all, especially if you keep this blog going. You have to make a living. I would be very interested to find out more about the natural interventions you use, such as diet and supplements. I am having a hard time finding all that within the search function. I just found the site and you have made me laugh a bunch already. Thanks 🙂

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