Today we’re excited to share with you an interview with a Health Activist caregiver, parent, author, blogger, and hard-working advocate for another. Adrienne Bashista is active online in numerous different places, co-authored the book Easy to Love but Hard to Raise, writes at a blog of the same name, active in the online ADHD, FASD, and developmental disorder communities. Her mission online, which is reflected wonderfully in this interview, is to be real about the challenges and struggles that come with caring for a child with “invisible” disabilities. I think you’ll enjoy what Adrienne had to say as much as I did, and hopefully learned a thing or two. –Amanda
WEGO Health: What inspired you to become a Health Activist Caregiver? What inspired you to take the next step toward advocating for your child? What inspired you to start your site/book?
Adrienne: Like many (if not all) parents of kids who have special needs, I started my journey simply in search of someone to talk to. Someone like me; someone with a kid like mine. The parents who I met while raising my older, neuro-typical son, have become my best friends. They are great supporters and we share much in common, but when it came to the specialized parenting that my younger son required it eventually became clear to me that they couldn’t relate. The early days of parenting my son – before we really found the medical and therapeutic help we needed – were extremely difficult and stressful and I’m sure it often sounded like I was blowing things out of proportion or that I was complaining too much. Certainly decisions we made about doctors and assessments and therapies were greeted with skepticism. Before the experience of raising a child with a developmental disorder, ADHD, and FASD I would have probably been skeptical, too. My whole world view has changed. Because of this world view change I became desperate to find other people like me; thus my journey to create our book and accompanying blog: Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories.
Kay Marner (the other co-editor) and I came up with the idea for the book because we knew that although it seemed like we were the only people struggling with these parenting issues, that indeed, we were not alone. There were plenty of parents just like us – but where to find them? We felt there needed to be a collection of essay about people who were parenting children who had emotional and neurological difficulties that resulted in behavioral problems. Kids who couldn’t be managed using instinctual parenting methods, or sticker charts, or magical countdowns, or whatever methods worked for kids whose behavior issues weren’t as great as our children’s. The response to our original call for contributions was wonderful: we now have 30 parent-contributors and almost 20 “experts” who helped us with the book, but what’s been even more wonderful is the community we’ve formed through our blog and our Facebook page. Finally I have people around me – even though their proximity is virtual – who have been in my shoes. It’s such a comfort.
WEGO Health: What do you wish others knew about being a Caregiver?
Adrienne: How conflicted we feel on a daily basis. I think it’s easy to portray parents of special needs kids as ‘saints’ or ‘wonderful’ or as doing something that other people can’t do, but in reality we are simply doing what we have to do, like all parents. It’s really easy to feel resentful about all of it, but at the same time it’s completely taboo to be angry about parenting a child with special needs. I love my son with all my heart but he is very, very difficult to parent. That’s the truth of the matter. Being told “I could never do what you do,” makes me angry – both because I think most people rise to the occasion when it comes to their children, but also because it puts me on a pedestal, and that’s an uncomfortable place to be. It’s a lot further to fall.
On the Easy to Love blog as well as the Mom’s View of ADHD blog, where I’m a contributor, I try to be as honest as possible about my experiences. If that makes me sound like an angry, resentful person, then so be it, but hopefully I’m coming across as a human being who’s been put into a difficult situation. And hopefully people can relate.
WEGO Health: How do you maintain balance between being a Caregiver and managing your own health, work, etc.?
Adrienne: Ha ha ha! Balance? What’s that?
Just kidding. Actually, these days my life feels very balanced, although from an outsider’s perspective it may look somewhat skewed because of the choices I’ve made to keep my family life sane. First choice: I quit my job. This was a career in which I’d had 15 years invested and a Master’s Degree…but I couldn’t do it and take care of my family’s needs at the same time. Next choice: we pulled our youngest son (our ‘easy to love’ child) out of school so we could homeschool him. In school he was crashing and burning. It was a real square-peg-round-hole situation and it created all kinds of stress in his life and in ours. The school was not very responsive to his needs so we made the choice not to stay and fight for services – which probably would have been at least 2 more years of his failure and my mental health sacrificed – but to quit.
Both of these decisions made me MORE of a caregiver for our family, but both were the right decisions for us and have resulted in a more harmonious life. As for the rest of it – it gets fit in whenever and wherever it can. Although I quit that full-time out-of-the-house job I still do other paid work, but it’s work that can be done while kids are at playdates or at night or on the fly. And it turns out that doing this work – writing and editing books and blogs and doing PR and marketing for our family business – is rewarding and important in a way that my previous career wasn’t. With increased quality of life comes less stress, with less stress comes better health. So it all works out.
WEGO Health: How has the internet and social media changed the role of a Caregiver?
Adrienne: I’ve only ever cared for my child during the age of social media, so I can only imagine how difficult and isolated parents caring for kids like my son felt without online support. I live in a pretty small town and although I know of support groups for parents like me, they meet an hour away from where we live and only once a month. With our blog and our Facebook page, as well as a couple of other great on-line support groups I belong to, I can post a question and have a range of answers within minutes. I also don’t think I’d know as much as I do about my son’s various diagnoses had it not been for the Internet. FASD, in particular, is something that there’s not much written about, nor is there much support for – online or offline. It’s getting better, but without the internet I’d probably know next to nothing. I predict that social networking will be where advocacy for kids and families impacted by FASD will really take off. I’m excited to be a part of it.
WEGO Health: Anything else you’d like to share?
Adrienne: Just that I’d like to invite anyone reading this who is taking care of a child whose behavior pushes your parenting to the limits on a daily basis to join the conversation at the Easy to Love but Hard to Raise blog and Facebook page. We are looking for guest contributors. The more the merrier!
Thanks so much for sharing with us, Adrienne. Your candid approach to these tough topics is inspiring and no doubt really influences your community in a positive way.
Check out more of Adrienne’s work!