PressureSupport

Liam the Ninja and his new Belt. 

Editors note: Look I didn’t mean to take nearly 6 months off of regular blogging. It just kind of happened. But I’m back now. I mean it, but before I get to any of the cool new stuff I want to blog about I have to tell you this story first. Because it is an awesome story, and also because I should have posted it last October right when it happened. So let’s just move past the fact that I haven’t yet posted in 2015 mmmkay? thanks.

 

 

We almost didn’t make it to see Walter at all. (You’ve heard me talk about Walter in my speech here) The President was visiting Rhode Island for the first time in a generation that night, and with most of the exits off the highway between providence and the airport in Warwick manned by state troopers, and traffic at a near stand still for the evening, we were 25 minutes into the drive and still less than 5 miles away from our house, and close to 10 miles away from our destination. Karin floated the idea out there.

“I’ll just text Walter that we aren’t going to make it. This is nuts, it’s going to be over before we even make it there.” She said.

“No, Walter has been talking about this for months. We have to make it.” I said through gritted teeth and clenched jaw as my frustration at the interstate becoming a parking lot grew. “It obviously means so much to him, we have to make sure Liam makes it there.”

After ten years of teaching karate, Walter, Liam’s nurse for the past 4 years, had asked if we would bring Liam to the final class of his closing dojo. We were happy to be a part of it for Walter. Happy that it meant so much to Walter that Liam attend, but we had no idea why Walter wanted him to be there, and why he was so excited that we promised to be there. It wasn’t much of a choice really, after Walter had attended so many of our own family events, birthday parties, thanksgiving dinners, and milestones like first days of school, it was now Liam’s turn to be at something that meant so much to his big buddy Walter. Our full-time nurse, and part-time ninja.

“You made it!” Walter couldn’t have been more excited when he saw us wheel Liam into the room. About 25 students of all ages, in their Gis, kicking and punching in an impressive display for their family and friends around the room, while we tried to sneak in along the wall and take a place in the back so as not to distract from Walter’s night.

Walter wouldn’t have it though, and only a few minutes after we got settled the sensei addressed his students for the last time. A few minutes in to an already emotional speech Walter started telling the whole room about his patient and buddy Mr. Liam.

 

I don’t remember where Walter was going with the start of “it’s unfortunate … ” before the video cuts out but just know that it was incredibly sweet and inspiring words about Liam’s strength and determination. And then, in what was a total surprise to Karin and I, Walter presented Liam with his honorary Black Belt.  Embroidered with Liam The Lion Olson and a certificate in Japanese and everything.

Yes that’s right, ‘In recognition of his perserverance and indomitable spirit fighting the odds, and proving that nothing is impossible with hard work and the support of others’ (according to the translation side of the certificate) Karin and I are now the proud parents of a black belt, and we were blown away by the kidness. It was just Liam’s nurse Walter deciding to do something nice. Something he didn’t have to do at all. Something that still means the world to us.

For the remainder of the evening all of the students from children to adults in the class would make their way up to Liam to meet him. Every one of them bowing and calling him ‘sir’ as he was a black belt now, a title worthy of respect, while Karin and I, blown away by such a generous gesture and the incredible speech that Walter gave about Liam’s strength and determination, tried to figure out how we would ever be able to thank Walter and his entire family for such an evening.

An evening we almost didn’t even make it to.

I’m so glad that we did.

Thank you again Walter, Amy and the all the kids. You guys rock and Liam is a lucky kid to have you all in his life

 

 

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.

 

 

Mr. Popular

I never really thought that Liam would have any friends.

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Aside from the impact that Liam has on all of our own friends and relatives how does a kid who can’t walk or talk and is not only confined to a wheelchair but also attached to a machine that breathes for him going to really make any friendships with the kids his own age without one of his parents there to help communicate for him?

Shame on me. Once again I foolishly underestimated my own son.

I still have no idea what the answer is but what I do know now is that he can. I know this because of the pictures. Oh, the wonderful pictures that Liam comes home from school with. Pictures from his teacher and from his nurse. Pictures that I wish I could show you but won’t since they contain other children in Liam’s class. Not just his classmates.

They’re Liam’s friends.

I can only tell you the tales we hear. Tales of his buddy “A” who wanted so badly to “ride Horses” with Liam that he stuffed Liam’s wheelchair with the toy horses from the classroom’s dress-up section, saving one for himself and then making Liam’s nurse push him around the class while they held hands.

Tales of friends who high-five Liam every morning then breathe on their own hands before holding them to Liam’s peep valve showing their understanding of where Liam’s own breaths come from. Tales told through pictures now hanging on my fridge of the three-way telephone game with two friends wearing novelty sunglasses because Liam gets to wear glasses all day and they want to wear some too.

If you read this blog a year ago you may remember my anxiety about Liam heading off to school. I had a hard time trying to see how Liam would fit into an environment of kids of all abilities. My biggest fear was that Liam would be left uninvolved in group activities off in a corner somewhere. It makes me so happy to report how incredibly wrong I was.

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I underestimated the level of competence and kindness of the therapists and teachers that we have grown to admire so much. I underestimated the sense of fearlessness, curiosity, and compassion of children who are too young to be scared of Liam because of his special needs. But worst of all of my needless worry was that I underestimated the personality, energy, and love that Liam communicates without words.

I was wrong. Wrong on all counts. Liam has learned so much at school this past year. He’s taken his first steps, learned to make choices between different toys and even how to ride a bike. All of that is more than I ever thought would be possible. But those are things that Karin and I have been bracing ourselves to accept since we were told he wouldn’t do any of them when he was only three weeks old. While focusing on improvement in or acceptance of Liam’s developmental milestones I didn’t expect to worry about Liam’s social skills until we started leaving Liam at school three months ago.

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I read enough special needs blogs to know that we are very lucky and school won’t always be this easy. That the stress of writing quantifiable goals and I.E.P.s will continue to increase and get more complicated. That the ever-changing budgetary needs of school districts will affect the availability of services that Liam will need. When those things do happen I hope that I can look back at these days and remember the true value of sending Liam to school. That kids need to be around other kids and Liam is no different in that. I didn’t think that I would ever see Liam put one foot in front of the other and walk forward until he did it.

Liam has friends now.

I’ve never been so proud to be so wrong.

Master of my domain.

Just a quick programming note . . .

I finally got around to getting the right domain name and you can now find us at plain old, simple PressureSupport.com.

Sometime last summer I had just started getting serious about the blog here I looked into getting the domain to make the link simpler but my initial searches said that the domain was taken by some service that makes their money buying these domains to then sell them off. Since the name itself is taken from medical terminology it was catalogued as such and I was welcome to bid for its purchase. Well that’s just not gonna happen folks.

So I waited and thought about other options but I’ve grown up with the name pressure support so decided not to change anything. I kept it with the .wordpress address, and it’s worked out for me so far, but a few days ago my wordpress service let me know that the name was now available through their own domain service and so I jumped at the chance. 17 bucks a year. no bidding, no technical hosting crap to figure out, how could I refuse?

How is all of this going to effect you? Well that’s the best part — It’s not. You already get here just fine and there’s no need to change any bookmarks or links but also, think of all the time you’re going to save! You know how you’re always being hounded by people saying “hey what’s that awesome blog you are always going on and on about? The one all about that awesome kid and his family?”

Well now instead of having to go through with all of this “pressure support dot wordpress dot com.” you can quickly mention “pressure support dot com.” that’s like three extra syllables taken out. Easily like half a second. Compound that by how many times a day?

Anyway,

Pressuresupport.com Boom! No muss, no fuss, and now instead of going to an informative medical resource about the need for, and application of, pressure support ventilation; they can come here – and read me, blathering on about the “pressure” of parenting an awesome special needs child and the “support” that the three of us give to each other to make it through so well. Ugh.

Maybe the name should be put to more responsible use.

Whatever.

Pressuresupport.com. Feel free to tell your friends.

Just a Wave Hello

Yes I’ve got ideas for upcoming blog posts and blog projects.  I’ve even got drafts written of some of the stuff.

But I’ve also got housework, and yard work, and work work. Not to mention quiet time spent with my family.

Fear not though fans of the Olson family adventures. I’ve got a new way to get a sense of what’s going on around here. I take a lot of pictures with my phone and now I even edit my photos on my phone. For the past couple of days I’ve been uploading a few pictures every day to a Posterous site also called PressureSupport.

I’m calling it the cell phone photography arm of the Pressure Support Empire.  Please stop by from time to time to see what I’ve been seeing. I’m sure it will be updated more often than this space.