Sunday, April 10, 2011

Is it wrong to blog about your child with special needs? I say no. Ahem.

Blogging about your kids is one thing. Blogging about a child who is not aware that you have a blog because he has special needs is a whole other thing. Biggest question of all: Are you endangering your child?

On Friday's post about smartphones and online predators, Ken from Blogzilly mentioned that someone reamed him out for blogging about his kids. Called him a "bad parent." Made him feel, he said in his own Ken way, "like a turd."

Ken's opened that can of blog worms, and I'm diving in.

First off: Would it be safest of all for our kids if we never blogged about them?


And if we did blog about them, would it be safer to not show their pictures? Or use their names?


And if we put our kids in a car and drive around with them on a highway or we cross a busy street with them or we let them ride bikes or play outside with other kids or go swimming, is that safe?

Not completely. Nothing in life is guaranteed "safe" except for maybe sitting on your living room couch and staring at the wall.

Sometimes, doing things for the greater good outweighs the negatives. That's what I believe.

Like many bloggers, I do it because it helps. I know from comments and emails I get that Max's accomplishments inspire parents and give them hope for their own children (his purple obsession, perhaps not so much). I know my words—and ones from commenters—encourage parents. I know sharing information here helps other parents help their kids. I know that through this blog, moms have connected in real life and found friends they needed.

I also blog to raise awareness about our kids. I want parents of so-called typical children to know that in many ways, kids with special needs are just like any other kids—not kids to be pitied, feared or shunned. I want them to understand that our kids are not their disabilities.

It's a two-way thing: Through this blog, I'm inspired and I learn in return. It's because of a reader here, Kate, that I learned Duke University was doing stem cell infusions—and Max had it done. I've gotten therapy ideas, I've gotten ideas that improve Max's quality of life, I've gotten reassurance and reality checks and comfort that have vastly improved my quality of life.

As for Max, who didn't have a say in my blogging about him and who doesn't yet understand what a blog is, I hope that when he does get it, he agrees that this has been A Good Thing. Along with his victories, I have laid out his history and his challenges for all the world to see, and I pray he does not condemn me for doing that. If he does get ticked off, I'll live with the consequences (and be grateful that he reached that level of awareness).

There are no easy answers here. But I have a blog. I think it makes a difference. And I stand by it. You should too, Ken.

OK, let the "yays" and "nays" begin.


  1. I think you covered it all. Thank you.

  2. Yes! My son has benefited immeasurably from blogging! All the best treatments, diagnoses, and therapies found their genesis online--they did NOT come from his doctors. And, we've been able to help the families of other kids with similar conditions find the correct treatments sooner! If my son could ever know what blogging even is, I think he'd agree that giving up some privacy in exchange for the huge increase in his quality AND quantity of life were worth it.

  3. I don't think blogging about your kids is wrong. Being a parent is a big part of your life when you are a parent, and unless you have a very segmented interest blog, stuff about the people you live with and spend tons of time with is going to come out.

    I figure when your children are old enough to read and find your blog and if they are recognizable, then perhaps you have a conversation with them about their comfort level about being mentioned.

    BTW: Have you made purple oatmeal yet? Its a great way to sneak in some blueberries and raspberries.

  4. I too agree that the ultimate good outweighs the bad. Sometimes I wonder what Wade will think when he's able to understand the words I wrote about him. If there comes a time that he doesn't want me to share, I will stop. But for now, I think the blogging world is full of information to help so many families as well as information to educate others about disabilities.

  5. The major reason I have my blog to connect with other parents to special needs kids. I helps me feel so much less alone.

    Is that wrong? I don't think so. I think the good does outweigh the bad for now. If that changes as my boys get older I will re-think having a blog.

  6. Hi, I have been reading your blog for about a month now and have been meaning to post. My son is adopted from Taiwan and has CP. When we adopted him we did not know he had CP and now that we know he has CP, we know that, without a doubt, we were truly meant to be his parents. He has been a gift. He has taught us more than we could ever have imagined in the 3 years he has been with us. He is our inspiration as Max is yours. I love your blog and I agree, you are giving great support and getting it through your blog. Thank you so much for sharing your life with me.
    (Mom to Kyan - almost 4 years old)

  7. I often wonder what will a 20 or 30 year old Sammie B think of what I write about her on my blog. Although I write about my (our) struggles through developmental delays, the worry and heartache that comes with this journey, etc., I hope she never reads it as her being a "burden." Because, she's so so obviously not. One of your posts from awhile ago (that you don't mourn Max) helped me with this a lot. I try to use my blog to work through my own fears, worries, etc., and to connect with others, and I do hope I do an adequate job of explaining the magic that is Sammie B, so that someday, if she does read it, she has a glimpse of my journey of motherhood, and that more than anything, she knows that along with the worry and wonder, there was so so so so much love and magic. I think balancing that -- the worry with the magic -- is just a part of my everyday struggle.

  8. A-freakin-men, Ellen! My blog helps me vent, share, normalize and connect, just as yours does and the countless other blogs I keep up with.

  9. When I left the hospital with a newborn I was told her would have cerebral palsy. There wasn't a scientific website on the planet that could relieve my fears the way Shannon and Darsie did with Cerebral Palsy Baby. I just wanted to know that I would be OK and glimpsing that life let me know that it would be.

    Like Cristina, I have found the best therapies online--ones that the doctors haven't even heard of yet, and these "discoveries" have, without a doubt, improved Charlie's quality of life.

    Life is a risk. I go to the grocery store and everyone there knows his name and known about his condition. I send him to school with strangers. We can only do the best we can and hope that the decisions we make are the right ones. I, for one, thinking sitting in the living room staring at the wall sounds boring : )

  10. If I couldn't blog, couldn't connect with other parents of kids with special needs, I don't know how I'd get through so many days. It is important.

    That said, if sometime in the future, my son asks me to stop, I will. For now, I respect the privacy of others, am kind to friends and family, and hope I am doing the right thing.

  11. yay
    eloquently put, Ellen.
    blogging's cathartic for the writer and invites conversation from those who an support and those who need help.
    I've blogged the whole of Ashley's life and never regretted it.
    I've learned enormously from my blog reading and have helped in small ways to support bloggers (some in despair)
    Again I say "YAY"

  12. I think some parents share things that ought not be shared with the entire world. The bloggers that do that seem to be in the minority, though.

    I also think it's important to remember, when writing about your kids, that one day they are likely to read and understand what you wrote, and you don't want to have to spend the rest of your life apologizing.

    Other than that I don't see the problem with it. I can understand why some choose to use pseudonyms and not show photos. I'm not sure where I'd stand on that if I had kids myself.

  13. Well, you know me, I question all my decisions ad infinitum, and all this she-bitch did was tug at one of my guilt strings on my Life Rug and I couldn't stop thinking about it for while.

    Hence the turd thing, which I gotta say, I'm honored that you quoted me directly...I mean I am genuinely touched.

    I'm also genuinely going to keel over. Adding to the stress of the weekend I got sick...very VERY sick. I think I have strep. Got those little white thingies on my tonsils. Time to call my doc.


    What a way to start the week.

    Anyway, thanks for addressing my issue with an entire post. :)

  14. Blogging clearly fills a void we cannot find in PT, OT, medical offices, social circles or even in social services. Our special needs circumstances of put us on the outskirts of society and limit our lives. Blogging is the perfect alternative to regain our lives, educate others and find the right circle for us. In our daily lives we are judged every day by those who have no idea what it means to be special needs. Perhaps those who condemn the blogs are ripe for being educated by us.

  15. I think you said it nicely for so many of us who do blog about our children. I find that I don't write a lot on my blog when things are incredibly difficult or Nik is goig through some significant health issues. I may write about them in slightly vague ways after the fact, but I am sensitive to NOT sharing things which are best left private for Nik's sake.

  16. Exactly!!! Thank you! Thank you very much.

    I recently had a very similar experience with an opinionated mom and blogged about it.
    It's only my second posting so be warned. :)

    BTW, your blog was one of the ones that inspired me to take on this endeavor, so thank you for that!


  17. Writing my blog and reading others has done a world of good for me as the parent of a special needs child. Frankly, I think the "real world" carries far more risks to my child than my blog does. I do filter what I say....always thinking of my kids before I write something. I will be over the moon with happiness if Sam is ever able to read or understand my blog. Everything I write is written out of love for her.

  18. Wow, I only recently found this blog and I can't stop reading it. Our son, Robbie, is 32 years old and when he was born in 1978 there were absolutely NO resources for us....very little information at all. Our pediatrician managed to find an article in an ancient medical book and made us a copy. I STILL have that dog-eared copy. Robbie's diagnosis is Linear Sebaceous Nevus Syndrome. At birth, all seemed fine....Apgar score of 10 and we were on cloud nine. One month later he began "twitching" and while I recognized this was out of the ordinary, I didn't allow myself to think "seizure". However, seizures became obvious when the infantile spasms/myoclonic seizures began. Our lives have never been the same.

    All of this long-windedness (I think I just made up a word!) to say that I feel blogging about our special needs children is a blessing and a comfort to so many...if only it had been available so many years ago! And identifying the child by name and using photos is, in my opinion, necessary to the readers in order to humanize what would otherwise be just words on a page. Thank you so much for giving yourself to others!

  19. Yay! Here's why. I started my blog as a way to inform my family (who ALL live in other states) of what we expereince and of Oia's progress, etc. I view my little slice of cyber space as a virtual scrap book that one day Oia will have to read for herself and without doubt, I know she will feel the unconditional love and fight that I/we have for her. In addition, all the encouraging comments from far and wide will be her source of inspiraction one day too but for now, those comments drive me and that's a huge deal on this crazy journey in a "special" world.

    Blog on, my friend. Love you and Ur-ul Max!

  20. This is pretty much exactly how I feel.

  21. I don't think it is wrong. We're not belittling our kids or mocking them. We are sharing aspects of our lives, struggles, achievements, concerns but all in love. Yes, even those days when we admit we are tired or drained or wish it was easier. And your words, and those of other bloggers, do help other parents. Even if it is just to know we are not alone.

    Keep writing, your love for Max shines in your writing.


  22. You should read the Free Range Kids blog, as free range parenting a special needs child is an art form. Please continue writing. As the parent of a child with Down Syndrome I love your blog.

  23. After Ethan's stroke in utero...I felt alone, even with tons of support from family and friends. I didn't know any other person who this had happen to. Then I read the article in a parenting magazine which provided your blog site. From reading your blog, I then looked around on facebook and read other people's blogs about babies having strokes. It was exactly what I needed. That eas a direct result from you blogging about your child!

  24. What Katy said.

    Children are not equal partners in what we decide for their lives - where to live, what to eat, which school to attend - for as long as they are dependent on us. There are ample other ways to protect them online making blogging a measured risk.

    Re: the emotional benefit that parents garner from blogging - that helps the child, too, I think. Put the oxygen mask on yourself first.


  25. I have a "typically developing" child.

    Your blog has taught me a lot about special needs children...that they are just like other children. They love to laugh and dance and sing just like my kid does. (I really loved when Max sang with his music therapist.)

    Honestly before I came across your blog I had no idea what life for a person with CP would be like. I don't know anyone with CP and if I did I wouldn't feel comfortable asking them what their life is like because with my own bumbling way of talking I'm sure I would offend them in my efforts to understand. Your blog has a way of lifting up the curtains and saying this is what our life is like...just like yours. It breaks the silence and kills the stigma.

    Growing up my parents were very sympathetic to those with special needs. The message I received was that we should feel "sorry" for them. As an adult, I've come to realize that special needs kids aren't a burden at all. They bring as much joy and laughter as my child does. And isn't that the real purpose of life anyway - uplifting others, improving ourselves and spreading joy while we do it? I think Max has got that down.

    When Max realizes that you've written about him, I think he'll be so proud to see how much change he's been able to effect by just being himself.

  26. P.S I hope I didn't offend anyone in my comment. I just really have learned so much from you and sometimes I can't express myself clearly!

  27. Well I am very careful with my blog, with pictures etc. I have C.P. and when I turned 18 (I live in Canada) it sort of felt like I fell off the edge of the planet. Alot of the services I had grown used to weren't funded anymore. I think that blogs such as yours are great because they help people feel less alone. I use a pen name so nobody knows my name but that's just a personal choice. My blog is

  28. Paula Kelley -- I don't know if you'll check back here and you didn't leave a link... but if you do come back, please get in touch! My 6-year-old daughter has linear nevus sebaceous syndrome as well, and I blog at Elvis Sightings.

    Obviously, I don't think it's wrong to blog! The connections are so valuable!

  29. What Barbara said:" out your oxygen mask on first".

    I struggle and waffle w this stuff all the time; having many kids & several w special/different needs. But again and again I come to the idea that while I never want to embarrass my children .... The concept of "hiding away " or not talking about the very issues which are the warp and weft of our family day & life is disingenuous at best and really, at worst, adds to the stigmas that are still attached due to ignorance. Its like not saying "black" about my African American children or doing gymnastics to not mention skin color. Its ridiculous, its part of them, our family. Are they DeFINED by their disability? No. But to refuse to address the very real issues for them and for us/me is to also make them less than in its own way.

    I'm tired if having to whisper " developmental delay" or " intellectual disability" or even "ADHD". Sheesh. So they have impulse issues,meds, cognition glitches,.... They also are caring and empathetic and funny and creative,And aggravating, and love hot dogs and cake, and are scared of spiders...or love purple to distraciton. Or pink.

    Amen to this post, your stance and this blog. It's a gift to me, so thank you!!! I vote yay.

  30. I mean nay its not wrong t blog about it, yay for you. Oops....

  31. Amen! I find blogging about my son helps both of us by building a community of individuals in similar situations. The exchange of information and ideas has benefits that are immeasurable and it is so important to raise awareness. And the therapeutic effect is definitely an added plus...

    Thank you for your blog and your ideas. You do make a difference.

  32. you are brave in ways i can not be. it scares me to tell the entire world about my kid. he has such a difficult road to hoe . it wold be easy to make him a poster boy for special-needs an advocate for the cause on all fronts. i just do not have the courage to take the risk. but i thank god every day there are those out there like you who can find the courage to give us such a personal voice. also so that we know we are not alone.

  33. Ellen, I got my ass chewed by some a-hole busybody who sent me an ANONYMOUS email because I LET MY KIDS PLAY IN THE BACK YARD "UNSUPERVISED." The yard has a fence and a gate, but NO, I have s#!t to do, so I don't sit out there like a helicoptering idiot while they played in the snow. The coward obviously knows me, but he or she (probably she--I have a good idea who it was, that jerk from my kids' horrible experiment with private school) went to the trouble of making a hotmail account to "scold" me about not being present with my children even though I can see them from the kitchen sink.

    People are always going to criticize, because that's one thing the internet does--makes it easy for some blowhard jerk who doesn't even know a damn thing about your life to wag their finger and look down their nose. Screw them. Do what you think is best. Thank YOU for sharing your life with us. You have helped more people than you will ever know. If I had any talent for writing and anything interesting to say and the time in the day, I'd blog too. It's a great way to communicate in these Never-Enough-Times!

  34. Love this post Ellen (and obviously agree, since starting my own blog, inspired by yours!)
    I also love Ms. Anonymous' comment. It brought tears to my eyes:
    "As an adult, I've come to realize that special needs kids aren't a burden at all. They bring as much joy and laughter as my child does. And isn't that the real purpose of life anyway - uplifting others, improving ourselves and spreading joy while we do it? I think Max has got that down."

  35. I think you & your commenters covered everything - I've found great comfort in my microscopic little corner of the internet. And I'll probably also ratchet back as the kids get older. Maybe I'll start writing about knitting or something (I jest).

    I do want to throw one more thing in the ring since I just wrote about it - the i-net can be a tremendous resource for the shy, introverted and/or busy mom. I can't do playgroups re work, plus I develop a charming stammer in crowds, but I found a community anyway. That's worth something.

  36. I completely agree...I think it's great and helps immensely.

  37. I agree, Ellen. I've been wondering about this myself, going back and forth about blogging about my two boys on the autism spectrum. The oldest one actually subscribes! The younger one doesn't comprehend what a blog is, but when he sees stories about himself and reads the stories, he smiles.
    I just keep in mind that my oldest is reading it, and if I wouldn't want him to read what I'm writing I don't write it.

  38. You are absolutely right Ellen, there is nothing wrong on blogging your child.!!Blogging the talents and activities of your child would really amaze your readers, its cute rather.

  39. I think its ok to blog about your loved ones. I don't see anything different from how people post pics and there status about there families on Facebook. I have a blog about parenting and being daddy.


Thanks for sharing!

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