When raising awareness for health conditions, as a Health Activist parent, it’s always a good idea to familiarize yourself with what other parents in the advocacy word are doing. In this post, you’ll learn about a common eating disorder among children with special needs and see how parents can confront this issue to help their children. The condition Pica is akin to other manifestations of anxiety disorders but can be addressed with the right care and therapy.
Read all about Pica here in an a guest post by Ryan Rivera: “Pica: A Common Eating Disorder in Those with Special Needs”
Thanks to Marla of Special and Determined for bringing this issue to the attention of the community!
As part of our WEGO Health Press Corps, we sent special needs advocate Marla Murasko to the 2012 Bloggy Conference. In this guest post she shares what she learned at the conference and how it will inform her Health Activism. –Amanda
Own Your Dream! Build Your Brand @ #BloggingCon
by Marla Murasko, Special and Determined
What an amazing experience I had at Bloggy Conference, thanks to my sponsor WEGO Health. What was Bloggy Conference? A fabulous opportunity to learn how to build your brand and enhance your blog through social media, meet some amazing woman and make meaningful connections.
This was my first social media/blogging conference and it was so rewarding on so many levels. I was able to gain valuable tools and resources to help me enhance my blog and make it a better overall experience for those that read it. Understand how to target my audience and create meaningful relationships with brands that I want to partner with. Most importantly spread my message of special needs and advocacy, all while staying true to myself and share the joys of motherhood as a special needs mom.
Blogging has become such a meaningful outlet for me as a health advocate and spread my message of “awareness, understanding and compassion for children with special needs“, but it has also helped me to realize that there are other causes that I hold near to my heart, and some of them came through loud and clear at Bloggy Con. I met an amazing young lady from North Carolina, Jessica from Headbands of Hope.org, who made me realize that besides Down syndrome there are other causes that I want to advocate for…. pediatric cancer, congenital heart diseases, healthy children, literacy, music and arts for children.
Let me share with you Jessica’s story:
I also want to share with you such an amazing mom I met and am honored to say that we will be partnering together to work on some advocacy projects. Katrina, from Kat’s Cafe has a heart of gold and is such an incredibly passionate person.
So to sum it up I came back energized, focused and blessed to have attended such an amazing conference and look forward to building my network and reach by attending more blogging conferences in the future.
What blogging conferences are you looking forward to attend to build your blogging network and why?
Continuing with A4A month, Monday’s HA Roundtable focused on parenting and caregiving for a special needs child. The role that a parent or caregiver has with a special needs child is a very complex one. During Monday’s roundtable, Michele Julis-Gianetti, Adrienne Bashista (@easytolovebut and @adriennegail) and Caroline McGraw (@awishcomeclear) shared their life, experiences and helpful tips in regards to caring for their loved ones with special needs. Below are some highlights that I would like to share. The discussion was definitely a compelling and interesting chat!
Michele – http://www.michelegianetti.com/
The challenges that a caregiver faces while caring for special needs child is widespread. Making sure that you are planning ahead is important to every caregiver and to focus on the positives and the growth. Lastly, it is important to take care of yourself!
Michele– To be two steps ahead in my thinking and of [my] planning… to keep the growing going.
Adrienne– To divorce ourselves from what we know are manifestations of his disabilities versus taking it personally… and maintaining that balance and also taking care of yourself.
Caroline– The biggest challenge is being able to separate the behavior from the person.
Going online and finding others to relate to can help a caregiver get a better sense of their situation and can be a useful tool for caregivers to use in their personal caregiving lives. It is important for a caregiver to create a community instead of feeling alone.
How does advocating online help you as a caregiver?
Michele– A chance to share and to be apart of something that I know I would have loved to have had.
Adrienne– When you have a child with special needs, it is really hard to find people who you think will understand… social media has allowed me to tap into other people who have kids who are going through the same things and I am really happy to be connected to people who value that and help each other in that way.
Caroline– sitting down and writing about to other people, forces us to view the bigger picture and see that this is a real struggle. And to see, that maybe what I am going through here is something I have to give to someone else and something I can offer.
Challenges unique to special needs
Michele– To wake up and know you need to be ready for the day, and know that if you plan a day, you have to make adjustments…it is the constant mental thought.
Adrienne– From thinking that he was doing it on purpose, or that he would grow out of it, or if we can just find the right book, find the right sticker charts, do the right thing, we can get him to behave the way we wanted him to behave. To shift our minds to believe that it is nothing we can really do, his brain doesn’t work the way we want it to work.
Something that you wish people knew about parenting kids with special needs
Michele– We would give everything we have, own, and desire in life, to have our child have a typical life that others might simply take for granted.
Adrienne– There is a public perception of special needs parents of that we are saintly wonderful people. Number one, we are people.
A care-team is an important an important part of treating a child with special needs.
Adrienne– We had a family doctor, psychiatrist, neuropyhscologist, school personnel, speech therapist, regular therapist, things like that. But, since his diagnoses which happened a little under a year ago, we have actually shrunk the core group of people a great deal and this is to recognize the permanent nature of his brain damage.
Talking to your child about their special needs can be tricky but rewarding.
Michele– We’ve explained it to her and I think we are better for the explanation.
Adrienne– We have definitely talked to him about his special needs… he is a lot more accepting about the limitations we placed on him based on his own self knowledge…Overtime he has become self aware; knowing what he can and can not do.
Caroline– [We] try to take things that he can relate to, and that he cares about, and sort of transfer those… to try to control is behavior even more.
Transitioning care for when their child is reaching adulthood
Michele– Right now our beginning of transitioning is to cultivate her interest and to see what we can do with those and then look into the future. As opposed to whatever path might be the easy path.
Adrienne– Moving from the idea from him growing up to be an independent adult to growing up to be an interdependent adult.
Caroline– When Willy was born 25 years ago, none of this stuff existed [in regards to services for special needs children] so, there is reasons to be optimistic. But it can be daunting to look into that unknown future.
Tips and Advice for other parents with children with special needs.
Michele– Listen to your heart.
Adrienne– For people to know that they are not alone. It is very common to feel isolated and alone but in fact there are million, billions of people experiencing similar emotions… so it is very very helpful to make a connection with other people.
Caroline– I find it really important to spend time with other families and other kids with special needs and just to do that depersonalizing that we were talking about earlier… Second thing is to think about the story you are writing as a family. And to think that yes, we are going to have really tough days and we are going to face these challenges, but overall what do we want our home too look like and how do we want our home to feel.
I would like to thank Michele, Adrienne, and Caroline so much for participating in Monday’s roundtable discussion on parenting a child with special needs. It was really interesting and eye-opening to listen to them each open up about their personal lives, and offer some great tips and advice to other advocates. Even though each had distinct stories, they all shared the common role as advocates for their loved one, and each appreciated the distinct online community that they are a part of.
There’s nothing quite like hearing others share stories of empowerment, overcoming challenges, and making a real difference to make you feel inspired. On Monday evening, we hosted our Advocating for Others webinar with Health Activists Janeen and Marla – and I learned so much from these powerful parents. In our community, we often focus on patient Health Activists, but there is a group of dedicated, passionate leaders who have followed a similar path – through caring for someone else experiencing a health condition. This month we focused in on this particular group of advocates and our webinar was a wonderful way to tie up the month on a positive note.
Though Marla and Janeen each bring different skills for overcoming challenges in the world of caregiving Health Activism – there was a lot of common ground and advice that could apply to anyone in a caregiving position whether you’re caring for your child, your spouse, or someone else you love. Here are my top take-aways from the webinar:
- Educate yourself first. When facing the diagnosis of a loved one, learning as much as you can is the first step. By investigating on your own, you’ll become more confident about your new role as caregiver and be able to be the best advocate.
- Your story can inspire greater awareness. Marla said that, along the way as she learned and highlighted her son’s potential and achieved milestones, this was an excellent way to open up the conversation and educate others about special needs.
- You know your child or loved one – be ready to step up and speak for them when you face the world outside. You may be uncomfortable at first – but you will grow into this naturally.
- One of the biggest challenges is having others understand and making sure they are respectful of you and your choices as a caregiver. Don’t give up. Find people who will support you. Whether that’s family or friends – find people who understand, can give you what you need, and will be able to help you get things you need to in life.
- Put on your oxygen mask first. Remember, you need to keep yourself in mind. It can be easy to fully immerse yourself in caregiving and neglect your own needs – be aware of when this may happen. Find time for yourself when you can. Pursue your passions. Use your creativity when you can. Connect with others and be social. This will ground you and keep you from becoming overwhelmed. Find stress-relievers that work for you. Schedule it in and pursue what makes you happy. Date nights! Outings with friends! Take time for yourself when you can.
- Connect with others online – share anecdotes, facts, and what works for you – this could really help other people and, by talking to them, you could learn from them. The online community is the best way to connect. No matter where you live – you can find others who have stories and experiences that you will relate to. Use this and take comfort in everything you can learn there.
- Anyone can be an advocate. No one is really prepared at the beginning but anyone has the ability to get there and be involved. You don’t even need to have a loved one in the community for you to be an advocate for that community. You will grow into your advocacy. You will find a way, no matter your personality, to be an advocate. Especially if you’re speaking for someone you love or doing something you love.
- Don’t stop. If people aren’t able to support you and give you what you need – gravitate to those who will. Don’t get discouraged when it gets tough. Look for opportunities to educate, even when it is tough. You can sometimes turn ignorant off-hand comments into the chance to educate and start a conversation.
And, in summation, we asked our panelists: if you could only give one piece of advice to a new caregiver or parent, what would that be? Here’s what they said:
Marla: Take it one day at a time.
Janeen: Trust yourself. Know your child or loved one. You know what’s best. Go with your instincts.
Such great advice. Stay tuned for the archived webinar so you can watch the presentation! And I will be posting a more in-depth recap as well.
And here are the slides from the webinar for you to check out. Feel free to use any of the topics to start a conversation in your own community or blog. And check out the resources on the last few slides that Marla and Janeen recommend to new parents or caregivers for the Special Needs, Down Syndrome, Food Allergy, or Asthma communities:
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!