Blogging About Your Special Needs Child

Liveblog

Eileen Boone, VP of CVS, CVS Caremark

All kids can program (video) goal is three steps:
1. learn. 2. plan. 3. succeed.
CVS created separate Facebook page for parents of caregivers and to highlight what bloggers are doing to raise awareness of other organizations.

Ellen Seidman, mom of 2, mag editor by day, blogger by night
Marisa Karp, child with ADHD and a def child, blogs at www.sheseatingme.com
Kate Canterbury, mom of 2 children with special needs

Ellen: Who here has a child with special needs? (all hands in room raise) Who has struggled with writing about your children with special needs? (all hands go up again). Blogging about special needs children is difficult, but rewarding. Do we have a right to share our kids' stories? I started blogging in 2008 to inspire other people and to raise awareness. Wanted to show how much special needs kids kicked butt!

Marisa: I don't specifically write about special needs, I incorporate it with my other writing. I bring perspective of being normal with special needs.

Kate: Started blog in '05, as a way to let family and friends know about adoption process. I write about adoption. Wanted to connect with people through blogging -- even before having kids. When oldest was diagnosed with special needs, blog was way to get support. I write about everything, not just special needs blog.

Ellen: When you started writing, how did you decide what you would and wouldn't say on your blog?

Kate: I didn't want kids to be known at first, I share pictures now, but don't identify them by name. I'm very dry and honest sense of humor. I share a lot about parenting. My children know how much I love them. I write about parenting, not just my kids.

Marisa: I write about my experiences, not just about my kids. Some things are secret, some things are private. What are the things others would be okay with knowing about them? I ask this before publishing post. We've all met the person who already knows everything about you before actually meeting you. Are those things okay for your kids?

Ellen: When you have a child with cognitive needs, it's more difficult. I hope my kids grow up and it's okay to write about my kids. When I started, I wanted to be transparent. I'm pretty open on blog except for things that could invade his privacy. I blogged about potty training him a few month ago, he's 9, it's time, but it's hard for him, he has CP. I hesitated to write about it, but what happened was I get more in return with help from other people. In the end, I was inspired and it inspired others.

Have you ever blog about something you regretted?

Kate: I hate my kids sometimes, sometimes they're assholes. I'm an asshole sometimes too. I want others to know how I feel. Potty training was the hardest summer of my life. I read child abuse goes up during potty training of special needs. I cloth diapered. I was tired of wiping poop. It's worth it if one person reads.

Marisa: I haven't regretted what I've written about my kids; I regretted other things I've written. I'm ambivalent about parent thing. Them. Those how going through postpartum and things that you think, "oh, I can't believe I did that."

Kate: We have a duty as parents about special needs, to write about it. That's the biggest thing we can do.

Ellen: And helping to spread awareness and understanding. Special needs kids are very much like other kids.

To audience, have any of you establish boundaries for writing about needs?

Audience Member: 6-year-old daughter has decided that we write and have family support. We want others to believe in her has much as we do. We post on facebook and twitter many things. We want this to be about forever.

Audience Member: Julia Roberts: My kids are 13 and 10. We have learning disabilities, son has severe mental disorders: I don't regret talking about it. Our story has been public for so long that we felt if we didn't talk about certain things, our kids would think there was motive behind us 'leaving something out." When I talk, I say, "everyone in the world will see this" -- my son has veto power. Involving kids at beginning is important. Their idea of private is different than mine. My son has a facebook page, he tweets. I try to look from their perspective. They grow up with different sense of private than us.

Audience Member: www.kidneyblog.com, some say don't use kids names for getting job later. I use my name but not my kids.

Ellen: Everyone has thought about it. It's about what you and family are comfortable with. Tes, he's google-able, but it's not secret. They'll know my son has CP when they meet him!

Kate: It's important to keep a level on that. It does develop an identity for your kids. I live in small town, everyone knows my kids through me. People in community already have perception-based on my writing. What will happen with your son grows up and already has persona online?

Audience Member: michelle www.autismdetective.com my son is 5.Bblog was started out of anger when flying and mistreatment. I tweeted JetBlue and was outspoken and since become first and private board for disability board. What do you not blog about? The fact that JetBlue is working to fix things, but haven't implemented things yet. Our blog is very vocal about why we won't fly on that airline. We know what our kids need. All we want is for companies to get out of way and let us focus on our kids. I won't write well on a company about their intentions, I will only write about how they have actually fixed things. If my son is treated well, it's not enough, it's only blog worthy if ALL kids are taken care of.

Ellen: Boundaries when blogging about other companies and brands? Our synagogue had nothing for special needs other than daycare filled with little kids. I blogged about it intentionally. I heard from many others about wanting to start programs

Kate: I don't believe in calls to action on my blog like that. I don't like the term special needs because it means so many different things. What's right for one kid may not be right for another. I believe calls to action can be dangerous and I don't believe calling out small businesses. What's important is making people aware of problems and ideas to fix it, steps people can take to fix the problem.

Ellen: Whether you call to action or not, there's room for many blogs.

Marisa: There's not a name attached to my blog, personal experience about my daughter at place of worship. She's deaf but there was no way for her to advance. Once i blogged about it, it clarified things for myself. I was able to say to the synagogue, here's ideas we need to get for our place of worship. We ended up getting a grant for an interpreter.

Audience Member: My daughter www.autismedges.com if autism is your master, everything else is secondary. Blog world is extremely difficult to not post pictures of my daughter. I envy those who can post pics of your kids. Privacy is a big issue, especially when your kids has diagnosis that may go away in future.

Audience Member: mom-blog.com, daughter had terrible time in kindergarten, we changed schools, daughter with autism. I wanted to blog about it. I don't want to blog about schools or bad things, but I blogged about it after they fixed things, wanted to be positive. I don't say anything negative.

Ellen: There's value in being able to go back in years from now and still use your posts. One more thing about calls to action, you have to pick and chose what your priorities are. I blog partly to get things out of me. Sometimes you have to throw things out there and see what you get in return.

Kate: When we speak, we speak for a community. Problems are there. People can benefit from that. When I talk, I represent all kids with special needs.

Ellen: I try not to think about representing a community, I may not ever be able to write if I did. On days when you're struggling about having kid with special needs? I don't always let it all hang out. I don't want Max to grow up and see too much.

Kate: I share everything. I don't feel lucky to have special needs kids. It's extremely hard on our marriage. I think it's valid to share. But I don't want my kids to think they didn't love them. I don't want readers to think I don't like my kids.

Ellen: I've yet to publish my blog "20 things that suck about having special needs kids."

Marisa: I would hear in magazines, I love being special needs parent. I think "you're lying!" I feel responsible to write about having terrible day. Was ashamed of it. But want to be authentic. My one checkpoint, remember Debbie Downer in SNL? I try to apply that. If it meets the Debbie Downer criteria, then I try not to post.

Ellen: There's a blog with down syndrome that seems to be too positive. She's shown the beauty of her child, but she gets flack for not being authentic, but she does well to create awareness for needs.

Audience Member: Ms vicki, I vent on twitter, but few times I've posted something on blog, I've gotten flack with long comments; it's been a learning experience for me to ask how my son feels when I write about him?

Ellen: I get a lot of flack, but I say, "you can't know what it's completely like as parent of child with a disability"

Audience Member: Autistic child, my special needs kids aren't he ones giving me fits, I have other kids without special needs -- special needs doesn't mean they are more difficult. I'm open on blog difficulty of being parent. Let people know it's not roses in my house. www.momtoscreamingmasses.com

Audience Member: I'm an autistic adult, I'm in both pairs of shoes, you have to be a parent to know what parent is going through. Parents deserve respect just as kids do.

Ellen: What changes to do feel you made in world with blog?

Kate: Guy moved to town, he goolged us, he called and said, can we get together and talk resources. I've moved 3 times. So I had a beer with him. We talked agencies and best people to connect with him. I made a difference for him. That's why I do what I do.

Marisa: As parents of a deaf child, our decisions about healthcare and education have been in line with deaf parents decisions and not hearing-parents decisions. I talk about how my child is deaf, not hearing impaired. I hope people can walk away from my blog with greater sense of understanding about deaf kids. In general, keeping secrets is exhausting. Being a parent is exhausting, we don't need anything else to tire us. I hope it's an inspiration for other to read. I want to show, "this is what family looks like" that we are just like everyone else. Tell who we are as people.

Ellen: I get what Kate was saying about helping people one person at time. every time I get an email and I can help, I feel so good. Talmud says, "he who saves one, saves world". I've spoken out against using word retard. I spread awareness about things offensive to families with kids and disabilities. I feel great when I do that.

What ways you do you feel you have changed world with your blog?

Audience Member: Son with special needs. I couldn't find any resources. Only resources I found were blogs. I don't know where to start. I live in big city and there are few resources for high-funcitoning kids. tThank you all who blog.

Kate: www.specialneedtech.com is being worked on as we speak to provide resources for special needs kids


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