Tuesday, September 27, 2011

Online Researchers: BEWARE!

I, for one, do a lot of online research. Not only as the parent of a child with a rare condition or as founder of a budding nonprofit organization; but as a parent, a wife, a student... you name it, the web is the place to find the answers. 

Sometimes it clearly sucks you in with no intention of ever spitting you out (think Facebook), as the world around you keeps spinning seemingly out of control! To prevent falling prey to the endless World Wide Web of information, I have had to set aside a specific time to spend online doing my classwork, now that I am enrolled in online classes and to do miscellaneous other things of interest. If I run out of time, then it just does not happen that day. I stumbled upon this article in my online folder of blog topics and thought I'd share. Its message rings loud and clear for many of us with extra special little ones, especially...

by Joan Celebi, Ed.M., CLC
Founder, SpecialNeedsParentCoach.com
When you saw that title you probably thought this would be an article about evaluating the reliability of the information you find on the internet. Nope. Instead, I want to focus on something that's affecting many parents of children with special needs, and it's all to easy to let happen: the internet draining away your time and energy in ways you may not even realize.

We parents of children with special needs spend a lot of time researching. We want and need access to information on our children's diagnoses and disabilities. We need to stay abreast of the latest treatments, therapies, equipment, and more. Much of this research we do online. We are incredibly fortunate to be living in an age where information is readily available with just a few clicks of the mouse! However, researching on the internet can take a big toll, too. I know -- both from my own past experience and from the experiences of fellow parents of children with special needs. Beware these common pitfalls:

~Sacrificing sleep for research time. Many of us do internet research after the kids go to bed - and stay up way too late in the process. 

~Zigzag surfing. You click to read an interesting article, then click on the author's name to find out what else they've written. 

~Just then you notice an ad along the side for a medication your child's doctor mentioned -- click. A testimonial pops up, sounds intriguing, and you click to read more testimonials. One of the testimonials mentions a helpful book. Click. Pretty soon you've spent 30 minutes, an hour, or more -- and forgotten how you even arrived at where you are now!

~Allowing the online world to take the place of a real, live social life. True, you can build great friendships online. But you still need time in person with your local buddies too! 

~Posting comments on websites, blogs, or forums you never planned to visit, and probably will not visit again. Even brief comments take time and mental energy.

~Getting drawn into online conversations. They can go on far longer than you intended!

~Absorbing others' anger, desperation, and grief. While researching online, you will come across personal stories that will evoke real emotions: you'll feel furious, or outraged, or heartbroken. These stories may even bring you to tears.

Too much info can be too scary. Sometimes it's better not to know EVERYTHING the doctor knows. Too much info can be, simply, too much. How many articles do you currently have in your inbox or in piles on your desk, waiting to be read? It creates stress in your life as you chide yourself daily for not having time to read them all. There are reasons for all of the above when you're online, I know. I've been there and done that with every single bullet point above. But with online research, moderation is key - along with a healthy dose of discipline. Here are some tips to get started if you feel it's time for you to start limiting the amount of time you spend with online research.

1. Set a specific time when the computer simply must be turned off. My own limit is 10:30. Earlier would be even better but ... I'm working on it! Designate certain nights as computer-free nights.

2. On a sticky note, write the topic you want to research. Stick it to the top or side of your computer screen as a reminder to stay on track. And remember, zigzag internet surfing gets worse the more tired you are (re-read #1).

3. If you're online a lot, make a point of getting out with friends at least once a month, preferably more. And instead of emailing friends, call them if possible - even if it's just a quick hello or question. There's a lot to be said for the sound of actual friendly voices!

4. If you feel the urge to post a comment, ask yourself these questions: "Am I willing to spend the time to respond to replies to my comment? Is this directly related to the topic I'm researching? How likely am I to come back to this website in the near future?" Even brief comments take thought and precious minutes to write, so guard your time and your mental energy carefully! 

5. Post wisely. Connecting online with fellow moms and dads of children with special needs is a wonderful way to get and give friendship, support, strength, and information. I highly recommend it as a way to combat the isolation many of us experience as special needs parents. However: choose your online conversations carefully. As much as we would like to, there simply aren't enough hours in the day to participate in every forum or list serve we want to. And keep your posts succinct. Longer conversations can take place by phone. 

6. You don't have to read every heartwrenching story you find! As a parent, you feel the authors' stress, fear, and even trauma -- sometimes almost as strongly as if their children were your own. Protect your emotional energy and well being by limiting how many of these kinds of stories you read each day or each week.

7. If you're researching medical information, you need a strong stomach and a thick skin. The abundance of medical information online is a two-sided coin. On the one hand, it's a blessing to have so much information at our fingertips which used to be largely inaccessible to the average person. However, is it too much information for you? You can end up terrified and ill over obscure facts, yet-to-be proven theories, surgical details, uncommon side effects, rare complications that likely don't even apply to your child. Be aware of your tolerance levels, and allow yourself permission to click away if it's getting to be too much. 

8. Ask for recommended resources from your child's teachers, therapists, doctors -- anyone who works with your son or daughter professionally. Often, these professionals have excellent books, websites, and articles they can either suggest or hand to you right then and there. This will save you the time and frustration of trying to find resources on your own.

So ... if you've been spending a lot of time on internet research lately, take a break. Turn your focus to other things. Get some sleep. All that information will still be there when you need it. And then some.

Great advice! However, I still believe that the more knowledge you possess, the more empowered you will feel. There is a point, especially when your child is living with a very rare condition deemed terminal, that you must know more than most of the doctors. These are the cases when that overload of computer-generated information can come in handy. The most important thing I've learned, is to be sure that I am taking care of myself... if I'm not good, nothing else is going to be good either! *easier said than done!!

1 comment:

  1. Great advice! Thanks for posting and also for your perspective on it. I've struggled with being depressed about the health struggles and losing so many of 'Our Kids' but at the same time wanting to be there for each other and feel honoured to share the pain with other parents.


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