What Facebook Means to Special Needs Families

Facebook is ubiquitous these days; every website, article, operating system and mobile device has a way to share directly to it. It’s become so popular with the adult masses that today’s teenagers find it lame (which makes me feel ancient and lame, myself).

These days it’s mostly a telephone and email replacement for extended family updates. Aunt Judy up in Michigan can see how sweet Bobby and Sally are doing without leaving the comfort of her couch.

It’s a dumping ground for Instagrammed pictures of people’s kids, dinner, and anything else they happen to take a picture of that day. It’s confused itself into thinking it’s Twitter, and added the ability to use hashtags. It’s where people feel comfortable airing their political and religious beliefs and end up getting into comment arguments with that guy from high school they barely remember, but accepted his friend request anyway.

Yeah, Facebook is annoying. It’s overused and overexposed.

But, for parents of children who have rare diseases or disorders, special equipment, body deformities, or something that makes them extra unique… it’s the most precious invention, ever.

Seriously. Thank you, Mark Zuckerburg. I don’t think you actually know what Facebook means to these parents.

It means never feeling alone.

Learning your child has been diagnosed (finally) is exhilarating, and absolutely terrifying, particularly when it’s with something you have never heard of, and neither has anyone else.

Guess what? There’s a Facebook group for that.

My daughter was diagnosed with an extremely rare, random and downright weird neurological disorder. Doctors had barely heard of it, and had never seen it. Yet, when doing research on it myself, I found a closed Facebook group of parents with similarly affected kids.

These parents shared their experiences. They shared photos. They asked for advice, and received feedback. For the last two years I’ve been apart of this group, I have watched people post their worries and concerns, as well as their happiness over their kids’ triumphs.

One tiny app on my phone, and suddenly, I’m not alone. These are people who share my fears about everything her diagnosis entails. And, now, with our second’s array of medical issues, I have added four new groups in the last week, each one alleviating at least some of the anxiety I feel for what the future holds for him.

I can talk to and ask questions of people who are going through the same things, even though they may sit in Australia. Videos, pictures, documents, surveys of symptoms; the resources are endless.

For a special needs parent, it’s like being thrown a lifeline. Suddenly, there’s a place you can go at 2 a.m., and ask for help when you’re unsure whether a symptom is normal or not.

And, when you’re scared for your kid, and your friends can’t understand the depth of that, having that safe place of understanding people to vent to is like finding gold.

Thanks, Mark Zuckerburg. Thanks for the lifeline.

44 thoughts on “What Facebook Means to Special Needs Families

  1. Shannon says:

    I love this post – I don’t think my family members understand how much FaceBook means to me. That’s my extended family inside that screen! Go ahead and swear it off and say it’s not cool and a waste of time, but it isn’t to me. This is great.

    Like

    • Rachel Engel says:

      I totally agree! When I diagnosed my daughter with my Google degree, my family thought I was crazy… until her neurologist backed me up! My little closed group of parents with kids who have the same thing she does comforts me more than anything else in the world.

      Like

  2. Mary Elizabeth Tait says:

    I spend days and days at home taking care of our 24 year old son. Facebook gives me a social connection whenever I can take a few minutes off. It keeps me from going crazy.

    Like

    • Rachel Engel says:

      Exactly! Connecting to people without having to leave the house is amazing, especially for those of us who can’t leave the house due to the medical necessities of our kids. Hugs to you, mama!

      Like

  3. nydia I caraballo says:

    Facebook is the onky way I socialize. Since my son was born all my friend disappeared and my family lives in another state. On Facebook I found groups of people that understand what I’m going through with my son. They have become part of my family. If their children are sick we feel bad for them. If they have surgeries we pray for them. If they make an accomplishment we celebrate with them . I don’t feel so alone anymore and if I do I go to Facebook and I know there are friends waiting to see how me and my son are doing. Thanks Facebook.

    Like

  4. priscilla says:

    My son is undiagnosed. He has a neuromuscular disease. Would you message me the name of your child’s disease so I can research if it looks like what my son has. My son is Truett of Truett’s Voice on Facebook. He was on headline news now in February for needing a diagnosis.
    Thanks!

    Like

  5. katelyn fleck says:

    My son has eosinophilic esophagitis and his own fb page for it to spread awarness and help of others going through this horrible disease ftt and asthma sudden rapid heartbeat and so on its nice to have people there who fully understand!!!

    Like

  6. munkeesmama says:

    Very Well said. For year we didn’t have a name for the genetic disorder which causes my daughter to have lung issues, g.i. issues, muscle weakness, fatigue, pain, heat intolerance and the list goes on. It was through Google and Facebook that I researched for hours on end and eventually found a possible diagnosis which fit the symptoms. I was then able to bring my idea to the doctors for further testing, and she was officially diagnosed with mitochondrial disease. The internet and Facebook can be a lifeline to those of down in the trenches!

    Like

  7. "Yucca" says:

    Thank you. I’m thankful for what Facebook does for many, many people. Each user of Facebook uses it as they chose & that’s were personal responsibility comes into play. Thank you Munkeesmama. This is an awesome post & it reflects what is best on Facebook. It isn’t a “teen” place any more, Facebook has grown up & entered the adult world. Facebook has “…come of age…” & I think that’s a good thing.

    Like

  8. Ellen McLean says:

    Our grandson has CHARGE syndrome and the CHARGE extended family is a lifeline for so many people who have just found out the name of their infant’s difficulty, people who have adolescent kids with CHARGE, older kids with CHARGE who enjoy having friends who understand, grown CHARGErs who are making their way in the world, and the grandparents, friends, and relatives who support any and all of the above. Yea, Facebook!

    Like

  9. Emma Fahy Davis says:

    I can so relate to this – just last week, I met in real life a friend I have been chatting to on Facebook for months, bonded by our daughters’ common diagnosis. Ironically enough, we met in the hospital…

    Like

  10. pam says:

    I work all school holidAys for the inclusion project with special need children with all sorts of disabilities I love it and love them my daughter was born with severe heart defects she has had many operations two of them open heart . This is a great site

    Like

  11. Brittany MacVittie says:

    This made me cry, cuz it is so true. Thanks to some support groups I’m part of on here, I feel like I’m not alone in dealing with my sons numerous problems.(theres a group for that) lol. My son has a list of medical conditions and I have found groups for each individual diagnoses. And being able to cry and vent out my frustrations with his doctors to other people who understand and knowing what to ask his doctors, from the advice from the other parents who are dealing with the same thing is amazing. My family(except my mom and husband) think I’m crazy, but I have proven everyone wrong thanks to all the wonderful groups and support I’m part of on facebook. Facebook gives me an extended family that I never had before, and living in a town of 60,000 people with a child born with a 1 in 30,000 disorder facebook makes it easy for me to communicate with parents like me. GO FACEBOOK!

    Like

  12. StephsTwoGirls says:

    So true! I can see daily how much support parents of PDA children have gained from a Facebook group with thousands of members, all across the globe. It’s the one group that I receive every notification for, and where I always try and respond to any post, whether it’s to celebrate happiness or to give ‘virtual’ support. Even the fact that I’ve found your post via Facebook re-confirms how great it is. I love Facebook!

    Like

  13. Monica says:

    No words. Honestly Facebook is the best tool I have to find support, answers, companion when I feel I’m too lonely or it’s too dark out there. These connections fill spaces and make us feel better because we use it well…..thank you!

    Like

  14. Christine says:

    I cannot imagine doing this without Facebook to provide support, connections, friendship and to alleviate the loneliness and isolation that usually comes with these situations. Excellent post.

    Like

  15. jodykp says:

    Perfectly written. It is an oasis for we parents who deal in the trenches every day, every hour, and know that there is someone somewhere doing the same.

    Like

  16. Shelley says:

    I would love to find some different groups that share some of what we are going through. Our daughter has an undiagnosed regressive disorder (neurodenerative). Sometimes we just feel so lost in everything she is going through. Unfortunately, I don’t even know where to start looking to find some groups :-/

    Like

    • Yawourkee says:

      It took me two years of reading science papers, internet pages, forums, e-mail to specialist over the world, parents with similar stories, until I found what I was searcing for. Don’t give up. You are your daughter attorney.

      Like

      • Shelley says:

        Thank you. So nice to know that we are not the only one fighting this battle. We have been tying to get a diagnosis for over 18 months and still nothing. Test after test after test. All the tests come back just fine, but everyone knows that is not the reality. And than I research and research some more. LOL. Hopefully we will eventually get an answer, but they are starting to tell us that it is unlikely

        Like

  17. Vivian Mimms says:

    All of that is true, but it is also important to the extended family that can’t be there in person (cuz we are too germy!) to be able to stay in touch and offer the internet shoulder to lean on! So, yes, thanks Mark!

    Like

  18. Lindsey Best Kinsella says:

    Facebook is great. I gave birth to a lil boy 2 years and 5 months ago and 5 months before he was born we got d devastating news that he had a congenital heart defect called Hypoplastic left heart syndrome. This means d left side of Tristan’s heart didnt develop. Tristan has had 3 life saving operations since he was born with thanks to Our Ladys Childrens Hospital Dublin Ireland. I am now on two facebook pages with parents who are going thru the same as me or something similar. Thank you so much Mark Zuckerberg x

    Like

  19. Ellen McLean says:

    https://www.rarediseases.org/rare-disease-information/rare-diseases Shelly, this may help you find some of what you are looking for. It includes syndromes as well as illnesses. It’s hard to try and become an instant diagnostician, but you are now and forever your daughter’s advocate. The National Institutes of Health also may help, but be prepared to look up medical terms. http://www.ncbi.nlm.nih.gov/pubmed/6301358 (((Shelly & sweet daughter)))

    Like

    • Shelley says:

      Thanks for the info. I have checked out these sites and lots more. LOL. The doctors, my husband and I have come up with lots of ideas, but the testing is always negative. The docs have basically told us it is time to start considering how much more we want to put her through to find an answer. For now, we wait and see if anything shows up in the latest testing.

      Like

  20. Jacqui Server-Garcia says:

    I’m really happy to see this post. This should be shared with care givers as well as foster parents who care for children with disabilities. As a foster parent you go though the same things and your pretty much on your own. Your friends and family don’t understand why in the world would you even think about taking a foster child in let a lone one with special needs. I loved every one of my little one’s and what a joy to see them achieve something that was never to happen. Facebook has given a gift to a lot of people way beyond the the idle chit chat. It’s a gift to home bound adults and children to be able to touch the world from their homes is just awesome

    Like

  21. shalray george says:

    I have had a few doctors even ask me what. The Facebook support page says about certain symptoms or medications. With such a rare disorder , facebook serves as a data base or registry in many cases. And I have found people living in my state that have a child with my sons rare disporder ….(only 900 diagnosed worldwide) so that is amazing. Not to mention how convenient it is to take your phone and FB app with you to the many dr appointments and ER , hospital stays. 2 months ago I jumped on FB to ask the group what they thought was the best wheelchair for my son. Made all the difference to have a consensus from the people who have already been there.

    Like

  22. Jose Reeve says:

    My grand daughter has spherocytosis , we keep looking at the site, she was so unwell for the first 12 months of her life many transfusions, but has been in great health and not had a crisis yet.

    Like

  23. Janis Walker says:

    It’s an amazing support for even for us adults with rare diseases. I have achalasia, which is an esophageal disorder (1:100,000 occurrence). Finding a support group on FB has helped so much with not feeling so alone in this, dealing with the disease, pain management ideas, doctor recommendations, etc. Thank you, Facebook!

    Like

  24. Tiny but Mighty M says:

    YES! You are spot on. When our son was diagnosed at our 20 week ultrasound with a birth defect my whole world came crashing down and I felt completely alone. And then I found a support group on Facebook that helped me pick up the pieces. It’s our extended online family. Great post!

    Like

  25. jackie says:

    Thank you for writing this…I shared on facebook! My daughter has found great support and knowledge for my Grandchildren with PHA through FB. Thanks for putting it into words!

    Like

  26. Amber Bobnar says:

    A few weeks ago Facebook posted a video about the history of Facebook and I cried. I felt stupid. Why was I getting emotional over Facebook? Then I realized that my entire extended family of parents raising kids like mine live in Facebook. That’s how I know them and talk to them. It really is a lifeline.

    Like

  27. Carol Sutton says:

    My daughter has Wolf Hirschhorn Syndrome (1 : 50000) she is 32 and we did not get her dignisis until she was 11 years old. Even the internet didn’t exist then and life for parents of children with rare conditions was very lonely indeed. Facebook is a fantastic resource, it must be a godsend to new parents!

    Like

  28. Mira says:

    Reblogged this on Fight The Hunger and commented:
    Before I knew there were groups on Facebook, groups that knew what we as a family were going through with our daughter and PWS… I felt alone. Now, I feel as thought my family has grown, a new type of family. Facebook has allowed me to meet so many amazing people. This is the community that Facebook has made possible. I am so thankful.

    This is my first time re-blogging a post from someone else’s blog. I Just agree with it so much that I needed to share it with everyone!

    Like

  29. kristy says:

    I agree with everybody. I wish there were facebook support groups years ago when our special needs son was younger.
    Even though God has always been available for me to talk to, there were times I wish I had someone with skin on to talk to.
    I often felt like I was all alone in a boat in the middle of the ocean, especially when I tried to talk about our son and others, especially relatives quickly changed the subject.

    Like

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