advocacy

My Bona Fides. 

Yes, I am the Eric Olson in the article, and yes I am the 2014 non-clinical recipient of the Richard P. Welch Award for Continued Excellence in Patient and Family Centered Care, and yes the reason I’ve started writing for, and posting to, the blog again was because last week when I was told this was printed in my hometown newspaper the East Providence Post, I wanted to make sure that I didn’t make a liar out of whoever wrote “He regularly updates his blog,” since they were right about everything else in the announcement.

Yes, I won an award. I’ve never won an award before, and I am really proud of this one. Even now, a month and a half after being presented the award (and that was a month after I was told I had been selected the winner), I am still kind of amazed and speechless that I was even considered for this honor, and there are a bunch of different reasons why.

1. Reason the first (not in ranking of importance, just a listing). This award, as the article mentions and as Mrs. Welch noted in her speech during the presentation in January, was not about my work, at my “work”. Yes I work IN the Women & Infants Hospital but I work FOR (meaning who signs my checks) a large management subcontractor managing the kitchen. I am decent at my position but in my day job I have little exposure to the care of our patients other than providing safe and tasty meals while they stay with us (although, as I tell my staff, whether or not you have direct patient contact, ALL hospital employees impact patient and family centered care). Instead this award was for my work on the hospital wide advisory council for patient and family centered care, where the perspective I bring is more often as the father and husband to former patients, rather than a department manager. It was for my presentations and speeches to Pediatric Grand Rounds, and the Follow-up Clinic conference on NICU dads.  It was about the work I did attending the Institute for Patient and Family Centered Care National Seminar last year. It was about the work I do sharing Liam’s story with you. Right here. Because without this blog and all of your responses to it, I don’t think I would have had any idea that Karin and Liam and I had a story worth sharing, a point of view that had any value, or that our experiences could help people and systems of care for anyone else out there with a family member with complex medical needs.

2. The second reason that this award is so cool and I’m so proud of it is because it isn’t just about me. I of course would have no story to share, No motivation to help, and no confidence to stand and speak were it not for my amazing wife and this incredible little boy that we are lucky enough to have in our lives. I often say at my speeches that I had never been able to speak in front of groups before Liam was born but get me bragging about that kid and I could speak to hundreds, Thousands! And I would do it for hours. I’m not the award winner, we’re an award winning family.

3. Third, the award came with a little money, and as soon as Karin heard that she insisted that I use it to get something just for me. Not to use it all for heating oil and car maintenance but to splurge on something that I’ve been talking about getting for the past 6 years but could never justify the expense. Even though most of it did go to those bills, I was able to save enough for my own award and it means so much to me.

Finally I was able to get my next tattoo. And every time I look at it or show it off I remember where the money for it came from.

If you need a tat in Rhode Island go see Greg Arpin at Unicorn Ink, he does incredible work. This came out better than I could have imagined. Works out pretty well when your kid has a badass nickname.

 

4. But I suppose the biggest reward of receiving this award is that I’m beginning to actually believe that I am an advocate. That I’m legit. Ive got my bona fides.

The award is knowing now that I can do this. Not only because it’s what I am so passionate about, but someday, if I can figure out my way in, because someday it will be the way I make my living. This award is recognition that I am on the right path for that.

Recognition that I have a story, the skills, and now the confidence to tell it, only it isn’t my story,

it’s Liam’s story.

I’m just the guy who he awarded the opportunity to tell it.

The First of Many

I’ve got frustrations with school posts left to post, and I’ve yet to recap our trip to the zoo to meet Anton, and over the next few days Liam will be transitioning from his trusty LTV-900 ventilator to a newer, lighter, quieter and more computer driven TRILOGY vent ( you may be surprised to learn that the quieter part of that is what is giving me anxiety as we have been living our lives to the rhythm of Liam’s breath for five years, I’m afraid of not hearing that, especially at night). In other words, I’ve got so much more to post but if you’ll endulge me, this one will be one last post about my trip to Philadelphia last week to speak at the Bayada Pediatrics 2014 directors forum.

This morning, they were kind enough to send a video of my speech that one of the forum participants took on his cell phone (Thanks Will!). After mentioning any of my past presentations here or on Twitter, many of you are kind enough to say that you wish you could have been there to see it, nd since this is exactly the type of thing I’ve been lucky enough to be asked to do that never would have happened without this blog I made sure to ask permission to post it here when I heard that someone had filmed it.

A few notes..

1. I doubt that I’ll ever post in such detail about any of my future speeches, but this one is different. My past events have been at the hospital where I work, and while they have all been well recieved, I was asked to do each of them by people who knew me before Liam was even born. This event was born solely from someone seeing me speak and wanting me to be a part of their own program. No one has ever flown my anywhere before. This was the event where I decided to stop waiting for people to call me a writer, a speaker, or an advocate but to start introducing myself as one. A big distinction, and I’m not looking back.

2. Sadly, the screens I was presenting in front of were just too big and awesome. Karin often jokes with me when I get stressed about writing these things that I could read probably the phone book while standing in front of huge pictures of Liam and the audience wouldn’t care since he’s so adorable, and she’s right. It’s a format I’ve used in all of my presentations. This 20 minute presentation includes almost 50 slides. My slides are not your typical powerpoint bullet points but are stand alone pictures of Liam projected as large as possible to help tell his story. Due to the size of the room and screens, the video catches a few of these images but is mostly just me talking. Hardly the exciting part of seeing me present.

3. I thought about trying to edit this video to a split screen to add the images alongside, or to lay the audio over the slideshow but ultimately I decided against it. First of all, the job is done. I spent my time writing, and travelling and giving the thing. To spend more time working on it now would take me away from the next thing. Second of all, if you want to see the whole show, you’ll just have to have your local children’s hospital or nursing company, or other group, ask me to come speak. While sharing, writing, speaking and advocating are all things I have done /would do/ and will do for free in some cases, I’m learning that what I can provide by way of our story does have value and if more of the support of my family comes from consulting and speaking than it does from being a foodservice manager I would be a fool not to pursue those avenues.

4. I really would like to take this time to thank Bayada Pediatrics (the pediatric arm of Bayada Home Health Care) for asking me to present to your first ever Directors Forum for office directors from all over the country. They thought of everything by way of accommodations and logistics so that the only part of the whole trip that I was responsible for was the content of my speech. Everyone that I met was supportive and helpful, and seemed genuinely excited for me to be there speaking to them. Everyone was so nice in fact, that the night before I worried that maybe having the middle ten minutes of my speech being a list of my complaints about home nursing, might be too negative for this crowd. Thankfully, it was exactly what the program organizers were hoping for, as they had explained at breakfast before the meeting, setting my mind at ease.

I was surprised to learn that many of the office directors have not previously been home nurses, (not sure why I assumed that though, I manage a team of supervisors responsible for nutrition and special diets but am by no means, a dietitian or nutritionist.)  These are the directors and managers from the office, and although I had to leave for the airport quickly after presenting, the participants I did talk with seemed to appreciate our story.

All in all I was impressed with the excitement and positivity I saw from the company charged with keeping my kid safe.

( It won’t get them off the hook the next time I have to call the office in anger though. )

4.It’s about twenty minutes long, but if you’ve got that to spare and you feel like listening to me complain about home nursing but then sing the praises of three nurses, here you go…

 

 

 

 

 

Events

They’re not even Current Events at this point. The most recent of which happened over a week ago now, I can’t exactly call them news.  Instead we’ll go with events. Events that have all happened within the past 3 weeks, but are the results of the past five years.

If you follow my twitter feed you already know what I’m about to say. Throwing 140 characters together on my phone is much more convenient to shout something into the ether. A blog post takes a bit of time. Time that could be spent sleeping, or reading, or watching Futurama episodes that I’ve only seen three times already.

But these are significant events, and do deserve their own blog post. They are accomplishments that I never would have achieved without this blog, in both direct and indirect ways. They are accomplishments that (hopefully) have already changed the path my career and ultimately my life will follow moving forward. But enough chatter….

Event the First: Three weeks ago, after a month of emails and two separate interviews, I was asked to serve a two-year term on the Board of Directors for the Rhode Island Parent Information Network. (RIPIN.org). It’s a pretty big deal. My term will start in September. I can’t even begin to express how proud and honored I am to be a part of this wonderful organization as they continue to help all Rhode Islanders by supporting and training parents to be their own best advocates in health care and education.

Two days after hearing the news I was lucky enough to be able to attend the RIPIN annual staff meeting of 115 employees (70% of which are the parents of children with special needs, or are people with special needs).  Humbled and awestruck by the level of excitement, dedication, and positivity in the room I gave myself permission to accept the legitimacy of my story, of our story, and realized that I could add my voice to this group. That along with the nervousness of trying something new, I belonged in that room with those people.

I realized that it was time to get to work.

Event the second: Only a few days after having my mind blown by the enormity of the opportunities that I now find myself given, it happened again.  The very next Monday I gave a speech at a conference on fatherhood during and after a child’s NICU stay. I gave a version of a presentation that I have given before, adding some points on the aspects specific to fathers. It was well received and I’m happy with how it went even if I’ve spent the week and a half since remembering things that I should have written into the presentation. There was a significant number of questions from the audience and while I didn’t check my watch I’m fairly certain that I more than filled the hour I was allotted to speak on the day’s agenda.

But it was during the second half of the conference that I was asked to be a part of a panel discussing the resources available to fathers post-NICU. A panel that the conference organizers wanted me to discuss and focus on this space right here. My blog. PressureSupport.com. To be approached solely because of the writing I do here has made me incredibly proud, (Hrm, So proud, I guess, that I waited 10 days before posting about it here. I’ll be better.) and I think I had some valid points to bring to the discussion but it was the other men on the panel that humbled me and inspired me. Men from state organizations, and non-profits across Rhode Island. Men dedicated to advocating for fathers, their rights, their needs, and their emotional supports.

I truly felt like I had no business even being introduced to sit at the same table. These men all have dedicated their careers and in essence lives to advocate for others. For parents. For fathers and ultimately for their children. For anyone who needs a voice.

For me.

These men, that speech, and being asked to sit on such a prestigious board. Inside of a month all the little small decisions I’ve made in the past 4 and half years since starting this blog, like a timely email to the right person, or a blog post that someone I work with shared on facebook, and deciding that I did have something to contribute to the Women & Infants Hospital Wide Advisory Committee for Patient and Family Centered Care and throwing my hat into the ring for membership. All decisions that had something to do with this blog and all that have led me to this point in my life have all come to pass in these last three weeks.

Not only do I finally know what I want to do with my life, but I’m at a place in my ability, knowledge, and confidence that I just might have also found a way to get there.

Every day since that conference (save for the fourth of July holiday and the Saturday and Sunday after) I have had some form of contact, emails, phone calls with someone who was either there or heard about the speech I gave. I’ve been asked to do more speeches. Tomorrow I have a breakfast meeting with one of the men that I sat on the panel with. Next week on my day off I have another scheduled with a different organization.

It’s all happening now.

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Sometime last year I spoke on the phone for a few hours with another blogger who I respect and admire, and who has worked in this advocacy realm since her daughter was born with special needs, about how to increase my role of advocating not only for my own family but for other families of children with special needs. To turn this passion into a career. To support my family by doing the thing I am most passionate about. To support my family by doing something that I would be (and already am) doing for free. Ultimately the main takeaway wasn’t any specific steps, or classes to take, but only to allow myself permission to accept that our story and my perspective have value. That Liam’s story can change the way a medical professional sees their role, or their own patient’s perspective. That the experiences that Karin, Liam and I have endured can in any way help a family out there going through something similar.

Karin and I have always said that there must be a reason that we were the parents picked to raise a child as special as Liam.

I think I may finally be starting to accept that.

Coming from someone who has never really had the confidence to take risks or stick my neck out there, that is a pretty big deal.

Now it’s time to get to work.

 

 

A Big Day for the Olson’s.

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It was a month ago now,(I know, I know, I’m sorry) but there we are, only a few minutes before taking the “stage”. The Schwartz Center Rounds at Women & Infants Hospital. After my 20 minute speech, Karin, Liam and I would move to the big comfy chairs for a half hour of the Oprah treatment with a moderator and then open the floor to more questions and some discussion from the audience.

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The event was marketed in flyers and emails around the hospital as

Liam the Lion: Quality and Innovation in Nursing Care, One Hospital Family’s Story and even went on to promise actual “Learning Objectives” such as

  1. Discuss the challenges faced by caregivers when colleagues become patients.
  2. Identify strategies to protect and preserve the confidentiality of a hospital employee or family member who is a patient.
  3. Identify the aspects of care that are most effective in helping families cope with a difficult diagnosis and lengthy hospitalization.

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And if you think that isn’t intimidating enough, imagine how I felt when we arrived and I found that there was an evaluation sheet for each attendee to fill out in order to receive their continuing education credit.

“Better bring your A game Bubba.” I turned and said to Liam when we saw them. “Looks like we’re being graded.”

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As it turned out, I had nothing to worry about. Once I got started and was a slide or two into my presentation I started feeling very comfortable despite a packed room that even included a few people standing since we had run out of chairs (which I know the room started with 75). I don’t have much public speaking experience but on that Tuesday afternoon I felt like it may just be something I could get pretty good at with a little more practice. I think it was the first laugh from the audience, at a time where I had hoped they would laugh, and the nervousness of inexperience started fading away.

The only fear left to overcome was my own feelings of illegitimacy. What business did I have to be speaking in front of such a large crowd of Doctors, Nurses, and Hospital Administrators with any kind of authority? All I had to do to get over that silliness was take a quick look to my right at the real star of the show.

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Liam was incredible. He stayed awake and alert throughout the presentation and seated between his mother and I he really did steal the show which I’m sure will surprise none of you. Karin was equally impressive and gave thoughtful and insightful answers to difficult questions about so many of the layers of complexity to our family’s relationship to that hospital.

Liam’s story has value. Our family’s story has value. I’ve learned this through the outpouring of support and friendship from people, literally, all over the world that have reached out to me because of this blog. This blog and all of your support is what gave me the crazy idea that I could even do that speech. It’s what gave me the confidence to throw my name into the ring when the hospital Patient and Family Centered Care Advisory Council put out a call for  new applicants. It’s what has opened my eyes to the possibility of using our experiences in the health care industry, in the special needs community, and our new journey into special education to share, to advocate, and to speak out for the countless other families like ours who don’t have a voice, or the energy, or the confidence, or the time to do it.

It may sound like I’ve gotten a little full of myself here, and I suppose I have. I have to, because if I really am going to make things like patient advocacy a bigger part of my life (and someday hopefully turn this passion for the subject into a future career) than I need to go into it knowing and believing that I can. To give myself legitimacy in my own head before I can expect it from others. Until the reaction I got from that presentation (including more than one request for a repeat performance) I wasn’t sure in my own head that it would be possible.

But, now? Well, a few weeks after the presentation the Schwartz Center emailed me the results of those evaluation cards. Turns out Karin, Liam & I got all A’s!