So communities come in a number of different shapes and forms. From the people within the area you live, your classmates, your bowling club or other groups you may be involved in, each forms a community with people who have similar interests. Another form of communities are virtual or online. I get to tell you about three online communities of my choice that are relevant to either me or to OT.
My first placement brought me into contact with a thing called Sensory Processing Disorder so I'm going to introduce three communities that are concerned with SPD. SPD is a disorder where sensory information is not 'normal' examples include being highly sensitive to touch or taste, bright lights may cause children pain that leads to tantrums, others need to feel pressure on their joints to be calm. It's such a broad classification that i advise looking through these communities and having a read to better understand what it is really like.
1. Firstly let me introduce you to www.sensory-processing-disorder.com
This is a website devoted to being a resource center for all things related to SPD from signs and symptoms to picky eaters pretty much everything is covered. Including a section for parents, stories about SPD experiences, a Q & A section and is choc-a-block full of information. This site is interactive and anyone can ask a question and be given feedback from others. This site is primarily to give help to desperate parents.
Heres an example of some of the input from people and it shows the importance of communities such as this, it is a place where other people understand and wont just tell you you're imagining things.
"My son has been diagnosed with Sensory processing Disorder and people are asking if the reason why he is acting like this is maybe it because of having tubes put in his ear is this possible or is it really SPD?"
with a response saying
"..People are constantly suggesting other diagnosis's or telling me he will grow out of it.. or telling me "we don't know yet and we should wait until he is older". Other people jump in to say, "my son does that... or my daughter does that.. why are you so worried". No one seems to get it..."
Ethics and all that
Site management state that they use tracking to moniter the movements and activity of users for the sake of analysing trends and gathering demographic data. There is a lack of identity and accountability but the nature of the site is primarily for the parents and provides information for them. Parents are going there to find other things that might work for their children and abuse of the resources are not overly likely.
2. Just as with everything else that exists today there is a Sensory Processing Disorder group on facebook http://www.facebook.com/group.php?gid=51964841184&v=wall
So, facebook is a very useable resource for members of the community in general to get together and discuss things. This group is providing a platform for parents to discuss and get new ideas and support for their children and how to deal with SPD. The group page is open to the public and it is conveniently located within facebook so for many people who do use facebook it is more conveniet than going to an external site for support. It's a world wide community with input from people from a range of cultures and backgrounds, offering more assistance than one could normally find in their local community. Members give input about everything including products that are useful or camps and retreats.
Here's an example of some of the member content
"Does anyone else's child clear their throat every minute or two? My son has been doing this for 3 days now and it is driving us all insane! He does it more when he is about to put food into his mouth"
"Yes, our daughter does (she has had to do since she was little). Constantly telling her to take a big cough. It got better once we put her on the GFCF diet. Just found out this week that she is allergic to soy, peanuts, and egg whites. So hoping it will get better soon. Hang in there.... it does drive people insane."
Ethical issues with facebook include the fact that your full name will be displayed to other people on facebook and information can be viewed by anyone with a facebook account. There could potentially be cases of people abusing the system however knowledge of SPD is not overly common so it is less likely to be stumbled upon by opportunists.
3. Last but not least is the Sensory Processing Disorder Foundation website www.spdfoundation.net
The SPDF's purpose is expanding knowledge, fostering awareness and promoting recognition of Sensory Processing Disorder. The website encourages members to participate in research and members gain a 10% discount on training programs with the foundation. As with the first community i discussed the is plenty of information but the first one had far more detailed and usable information. Membership costs $50 but does provide some added extras for members. There are newsletters and libraries of resources for both the public and for members. Member participation is hidden in the member only section of the website so i'm not entirely sure of what they have to offer but the site does seem seem to be well put together and has lots of useful information.
The ethics surrounding this website are not overly compromising. you have to be a registered member to access member only areas and it protects member information
Tada, this should be the end of a long post. Thankyou for bearing with me!
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