I have a friend who is older than I am–her son was born a year after I was. He also was born with intellectual disabilities in a time that was pre-IDEA and pre-PARC decree. She told me she joined mailing lists and how she and other moms would chat on the phone for hours….and anxiously await by the mailbox for newsletters. Can you imagine? Waiting for the snail mail?
I actually do remember those times, but didn’t live them as a special needs parent. I have another friend who is overwhelmed by the 8000+ unopened emails in her inbox. “I might want to use it later.” That would drive me nuts.
117 new Facebook notifications. 34 new, unread emails. That’s what I woke up to today, and I’ve been working very hard to keep it under control. I just love the internet. There is so much information out there, think of all the things we have access to, that families just a generation ago didn’t have. But with the wealth of information, comes a wealth of JUNK! So how do you weed through it all? How do you mix a bit of being social and entertained, but not getting sucked in to a total time waster?
Here is an overview of the information I think I need, as a mom to a child with disabilities.
Assuring a good mix of Special Needs Information in your inbox or Facebook
- education-resources, trends, innovation, ideas I can use at home, SDIs to suggest to my child’s team
- health-resources, innovations, research, new treatments, etc.
- individual advocacy-how to be a better advocate for my child and my family
- systems advocacy-new trends in law, case law, calls to action, pending legislation, budget issues, etc.
- recreation-fun activities that are just for special needs families
- validation-I like memoir and story-telling sites, sometimes we just need to know we are not alone.
Tips for making your online experience less overwhelming, more enjoyable and useful
- Unfollow, hide, unfriend and unsubscribe…generously!: Seriously, if it’s not useful to you, why are you following? If you are subscribing or following as a courtesy to a friend, put them on hide on Facebook.
- Use an Email Sorting System: Gmail has one built in, I think Outlook does too. I use OIB or Other Inbox so that some things are automatically sorted for me.
- Delete generously: Seriously, if you have not used the information in 2-4 weeks, you don’t need it. Or, you can google it later. Delete!
- Take two weeks: I do this every January, usually because in December I’ve done quite a bit of online shopping and then you get signed up for more stuff. But for two weeks, I diligently unsubscribe to every email that is not useful to me. I unfollow on Facebook. If you do it seriously for two weeks, you will have a very noticeable difference in a less noisy and more pleasant online experience.
- Learn Facebook features: You can be friends with people and just put them on hide or unfollow, to not see what they post. You can be in Facebook groups and not receive notifications. You can disable Facebook apps so that you don’t get game requests. Take an hour to poke around Facebook and hover over things, learning how to use them. Then, follow the same two week rule–diligently clean up your Facebook every time that you are on it, for two weeks, and the clutter will disappear.
- Only use social networks that are useful to you: There are so many out there, find the few that really work for you and stick with them. You don’t need to be on everything.
- Remember that you don’t need everything delivered to you on Facebook or Email. You can always search for information as the need arises.
Websites that every special needs parent should follow
- Mine! No, seriously, please go follow me. Buttons are in the sidebar. Plus, my site regularly hits items 1, 3, 4 and 6 from above, so it’s a useful mix of information. And, on my Facebook page, I have many of the sites below on auto-feed so that you get all of them in one spot–you don’t have to follow them all.
- Your State’s Protection and Advocacy group and Parent Training Center: Every state has a Protection and Advocacy group for disabilities. Find yours and follow them, sign up for your email so that you know what is going on in your state. Every state also has a Parent Training Center.
- Your school and school district: Many districts have more than one email list. Mine has one for each building, but you can also sign up for district news and school board news. You want to know when important policies are being discussed and voted upon, and you want to receive surveys in your email if they send them out.
- Your child’s disability + national and local group: Almost every disability has at least one national group. Find one that is a good fit for you (such as Autism Now vs. Autism Association of America) and follow them and get their email. I would also check if they have a local chapter that you can join or subscribe to. Local chapters are more likely to have workshops and events.
- Advocacy or “pro” websites: These are websites that either have a large blog with many contributors, or they curate a selection of blog posts and articles that apply to a certain topic. Examples of this would be Disability Scoop, the Thinking Person’s Guide to Autism, Think Inclusive or Autism Self-Advocacy Network.
- Advocacy or lobbying firms: COPAA is a national organization for parents, parent attorneys and advocates, so they are good to follow. The Education Law Center is a great one to follow if you are in PA. The Southern Poverty Law Center has great information even if you don’t live in the south. The National Center for Learning Disabilities has an advocacy center on their website. Poke around, see what you find.
And that’s really it. I mean it! You don’t need to follow dozens and dozens of places so that it’s overwhelming you. You can get the information you need with just a handful of sites, as long as you have the right mix of information.
Author’s note: This post was originally published in 2012, but I am updating and reworking old posts to keep them current.
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