Reaching out to family via facebook?

Post Reply New Topic

Do you have a facebook page that you use expressly to update distant friends and relatives about your own family lives at home? If so, how much information do you share? Is there anything you're not willing to share?

I know it's probably not a new idea but I get the feeling from talking to relatives that they do not know much about our LFA son's abilities other than by our grumblings over the telephone. Given that we're stressed out I'm worried that we're actually painting a bleaker picture than we truly feel and are scaring off some off the more squeamish. I also get the feeling that those whole do want to offer support or even just advice don't fully understand what we're doing or what we've tried and gave up on.

So here's what I was thinking:
- share pictures and videos to "friends" only
- post a schedule of current therapies, school events, special occasions
- share links to articles of interest, autism education related stuff
- links to tweets, blogs, etc.

What do you think? I'd appreciate any other ideas your might have?

I'm not big on Facebook but I would make sure you do not post anything that might embarrass him, later on in life. I know you say he is LFA now, but you do not necessarily know what awareness he will have later on, so I would definitely be mindful of that. I would put up non embarrassing positive accomplishments, though.

I'd agree to be careful. I usually show my son what I'm going to post before I do, and although I post links to articles I am reading about autism, I never connect that to my son online (well, except for here.) Problem with social media is that it's permanent, public, and easy to misconstrue.

I don't know that you will get the meddlers (even the well-meaning meddlers) to understand by posting to social media, either - it is so unfathomably hard (and rewarding) to have a kid on the spectrum that it's hard for other people to process. It's kind of like trying to describe those first years of starting a family to a single person with a dog - there are some very remote parallels and you can kind of relate, but having a family is so incredibly more complex and affects your life in so many ways that the best you can really do is say "well, when you get there, you'll find out."

If your family is on Facebook and you think that it would be a good avenue to share more of your life with them, then I think it is a fine idea. I upload videos to Youtube and mark them as "Unlisted" so only people you give the exact url to can view the video. You can control who you share stuff with on Facebook too, just be aware of who is going to see things when you post them. I personally wish more of my family would get on Facebook. I still have to email certain folks if I want them to see stuff. It would be so much less time consuming for me if they would just look at their FB pages once in a while.

Remember too though that when you post something, its there one minute and buried under potentially dozens or hundreds of other posts in someone's news feed the next minute. So don't expect it to be a good way to disseminate information that a person might need to refer back to often. In that way it is kinda like a phone conversation in that you can tell someone that you've tried such and such a therapy but they may not remember that or it just went in one ear and out the other. Posting or sharing articles and blogs that you find helpful is a good idea. Speaking of which, I have been following this guy: https://www.facebook.com/autismdiscussionpage
on FB. I like the way he presents stuff.

bombaloo, great FB reference!

Personally, most people on my facebook page don't know that my son has HFA. Unfortunately, we are raising generations of narcissistic oversharers - If there is something personal I want to share with my parents or inlaws (all overseas) or those who actually care about my family, then I send an email. Don't get me wrong, I will post a pic of my kids birthday or a pony ride but that's it.

I do a lot of FB and actually have three accounts there - one for WP under my user name, one for personal friends and family, and one for my dog that I post for like it's the dog posting. I'm pretty familiar with what you can do on FB and how to use some of the options they have. I see five choices for you, any of which would work fine but it's really all a matter of what is convenient for you and how you want to manage your updates.

Choice 1. Create an entirely new FB account that is only for updates about your son. Have your privacy settings where no one but but the friends on that account can see the posts and don't put any kind of identifying information in the user name. They tell you that you have to use your real name but you can use something like JohnDoes SonsPage to look like it's a first and last name. This is the most straighforward way to go about it but you will have to sign out of your normal account and into that account every time you want to post there, unless you friend it yourself from your regular account and post there as a friend and not the owner.

Choice 2. Create a list for your updates from your friends list. Put your family and friends and those you want to have access to the information on that list and when you post a status update click the bottom right corner of the box you are typing in. It should say "public" or "friends" or whatever your privacy settings are. You will see a drop down menu with choices of friends, acquaintances, public, custom. Under that will be a list of lists. Click the list that you made for this and then send your update. It will show up to you on your page like a regular update but it will only show up on people's newsfeeds that you have on your list. Depending on your privacy settings, those people may or may not be able to share or tag others in it. This is pretty simple but you have to remember to change the setting for each individual update.

Choice 3. Create a FB page for the updates. You can create a page and place it under "fan pages" and set the privacy settings where it won't show up under searches and it's by invitation only. You can put all the information and pictures up on it and invite whoever you want. All they have to do is "like" the page and the updates will be visable to them on their timeline but won't show up in their notifications. This is an easy way to do it and it gives people the opportunity to check out the page and updates at their convenience without getting a lot of notifications.

Choice 4. Create a FB group for the updates. This is a good option if you are interested in encouraging or allowing discussions and comments. In a group, members can also add a status and start a thread. A group also sends notifications when you update the status or someone posts in the group. You can have privacy settings where the group is either "private" which means it shows up in a search but nobody can see the member list or the posts or information and they can send you a request to join it, or you can set it to "secret" which means that it doesn't show up in searches and the only way people join it are if you send them an invitation or add them directly. This is probably the easiest and most effective option and it also is more conducive to starting discussions and asking questions than a page.

Choice 5. Creat a FB group and divide your members into lists according to level of privacy you want. You could have low, medium and high privacy lists and with each status update you could choose which group sees that information. This would give you the most privacy and control over who sees what.

I would go for choice 4 if it were me. I have a few pages I've created for certain issues and opinions and such and I update them occasionally and invite friends to like them. I have also started and managed a group before and it's no more work or hassle than a page and it's much less of a hassle than a seperate account. Also, in a group you have a documents section where you can put related information and articles for people to read if they choose to.

_________________
I'm giving it another shot. We will see.
My forum is still there and everyone is welcome to come join as well. There is a private women only subforum there if anyone is interested. Also, there is no CAPTCHA.

The link to the forum is http://www.rightplanet.proboards.com

I agree with the above, create a new account specifically for this and only invite family members or others you feel very comfortable with to be friends on this account.

I do a lot of FB and I have over 500 friends...a lot are just acquaintences or people I met online and I would not want to share intimate details of my life or a family members' life with them. I post pics of my son sometimes but never mention his diagnosis on the "timeline," only in private messages to close friends.

A friend pointed out to me one issue: what you don't want is an association online between your child's name and, well, any medical condition. For this reason, most who post here do not use their child's name. Same goes for FB - if you are going to discuss a medical condition (such as autism) make sure it is not associated directly with your child's name (or photo, for that matter, although that is less of an issue since presumably kids will look different when they are grown.)

What you don't want is something like Google coming up with (Child's name) and (medical condition) in a websearch. If people have to hunt a bit to connect the dots, that is a different matter.

A private FB page may still not be enough protection - you are still putting the association on the internet. I am aware that a pseudonym isn't really great privacy protection - but, though it won't help stop a determined individual, at least it doesn't lead to machines deciding to invade your child's privacy.