This Blogher 2008 session is part of the ‘Mommy Blogging’ break-out sessions, entitled ‘Blogging About Our Children with Special Needs‘ with panelists:
- Susan Etlinger
- Shannon Des Roches Rosa (aka Squid Rosenberg)
- Kristina Chew
- Jennifer Graf Groneberg
- Vicki Forman
Blogging mothers face challenges when discussing their children and their home lives online, but when your child has special needs a whole new set of challenges, fears and triumphs emerge. Other mothers and people are curious or just plain have questions. It’s tough to be brave and face these everyday, but to many moms and bloggers alike they feel that once they get to the point where they can share these things, they are really doing a service for their children and for the community.
Publisher wanted 3 stories to be removed NICU, poems about autism and essay by a mom who was ppdnos — all too scary for . 3 months later, she was delivering her twin boys prematurely in the NICU. Shortly after that, her son was diagnosed with Down Syndrome. The words she read from those women in her book had stayed with her, even though they didn’t get published.
Later on, she explored other books and sources for support and inspiration. Now she is online and active in the blogosphere. Our responses to each other’s writing and stories have gotten people to stand up and pay attention to mothers with special needs.
Hopefully one day, these stories won’t be called ‘scary’ anymore – they’ll just be called parenting.
Kristina has a son with autism He’s a lovely kid :) ‘My Son Has Autism’ was her first blog, a little bit of a political statement. After a variety of run-ins with people, she found herself saying over and over ‘my son has autism’ and made herself leave it just at that, not going into lengthy explanations on why he is behaving a certain way.
Blogging allowed Kristina to have a sustained conversation with people, even though she was at home alone with her son. The way that people responded and loved back, has made special needs parenting more livable and possible.
Shannon said that special needs parenting is often lumped into ‘uncomfortable’ topics like infertility. Experienced many great upswells of community support, like readers banding together to buy a ramp for her son’s OT room at school.
Public vs. Private
Kristina would get a lot of comments by adults identifying themselves as autistic adults on treatment options she was using with her son, like ABA. The family room atmosphere exploded, it’s like she felt like she walked into the middle of the street. Interesting to see the difference between autistic parent blogs and adults with autism blogs – the
Commentary made her think more critically on how she was representing – changed platforms to Typepad and now called her blog ‘AutismLand’ (her state has the highest rate of Autism in the country, so she and her husband use the term to describe how prevalent it really is). Made her realize that Autism is kind of all over the place, they saw behaviors made them feel more like a part of the community that wasn’t just online.
Then approached by researchers to help with autism blog (called Autism Vox — vox meaning ‘voice’), which would move her away from happy Charlie/son stories and expose her to political elements regarding medical treatments, vaccines. Autism Diva, Left Brain Right Brain – completely different kind of autism blog that terrified her, much more scientifically focused. Began looking at things more scientifically, which changed her blog. Studying the science of autism made her look back at their other treatments for Charlie and re-evaluate what they currently were doing for Charlie.
After writing about the vaccine issue, her traffic (and negative comments) soared – making it even more of an adventure. But these are things we have to talk about, as this is how we represent our children. What are you saying about your child and how are you describing what’s going on in your life?
Started to re-think the photos that she posted of Charlie, he is getting older and she just can’t know what’s really going on in his head. So she moved away form her personal blog and focused on the Autism Vox to focus on scientific issues. Amanda Bags, autistic blogger, would write rather harsh things to Christine commenting on how she was talking about her son saying she wouldn’t like it. It made her uncomfortable and so she moved on a bit.
The new blogging focus helped her evaluate Charlie’s future and helped her connect with parents of older children with autism. Very encouraging, especially as she connected with Asperger’s adults.
Ransom notes — autism ‘ads’ put out weren’t as positive
Question from the crowd: How do you deal with your spouse who is not as open? How do you deal with the difference in communication?
Each spouse has to deal with their grief in their own way. But it does mean that you have to focus only on your experience and reaction to things and be respectful of other family members’ experiences. It is challenging to get to that understanding.
Must always write from the point of view that you are an advocate for your child. Could try writing an anonymous blog or under a pseudonym, not always necessary to put a name and family behind a blog. Perhaps best way to begin in a quiet way without names or photos, give yourself a chance to find a way to communicate what you need to in the way that you need to. Very important part of the healing process.
Be tender and take care of yourself, if blogging doesn’t work then stop. There is no shame in seeking professional help – there is no stigma. Incredibly important to take care of yourself.
Advice to parents without kids with special needs
To other parents who blog that do not have children with special needs, it’s very important to reach out and learn what other parents are going through. Always remember our children’s humanity – they are kids. The human emotions that they feel are the ones that all children feel. The kids love back with all the intensity that any kind of child loves back, just through a different expression which is incredibly beautiful.
Important to suspend the ‘social thing’ of not noticing the wheel chair or whatever is ‘different’. Parents with questions should ask.
How to respond to negative comments and reactions
Don’t respond immediately, give it time. Always start with ‘thank you’ and that you are constantly learning and looking for different perspective. Keep the door of conversation open, don’t just shut people down. Try looking at negative commenters’ web sites and see their perspective and be respectful of that.
IEP – individualized education program
Each family feels like they need to re-invent themselves, but through blogging and social network you can learn a great deal on how to advocate for your child through school districts. Reach out to people in your community online and find out how they do things and what they can teach you. Silicon Valley Moms have a great post to use as a resource about IEP prep.
Using humor and language when discussing child’s disability
Language frames how we think about things – if you accept a language that puts disabilities first and foremost in the minds of people, that’s not positive for anyone. So many loaded words in our language, but important not to diminish our children when we speak about them. There are many repercussions when using certain language and types of humor, maybe more than what one person really can deal with.
Legally, blogging can be scary for parents – some blog posts have been held against parents like when working through IEP process, school read blog and b/c it said only positive things (not focusing on all the bad and negative stuff the family had been put through by the school district) they used it in their case that things ‘weren’t so bad’ and won.
Disability rights are one of the only kinds of visible discrimination left, it’s a final frontier we must conquer! Outing yourself as a parent of child with special needs changes the conversation. Knowing that everyone is out there online makes this change of tone and daily challenges so much easier.
‘We’re here, we’re quirky, get used to it’ :)