Hear My Cry

I devote the month of March to posts about Cerebral Palsy awareness, since March is Cerebral Palsy awareness month & I have Cerebral Palsy it makes sense.

There’s only one problem.

I have no idea what to write about.

No.

Idea.

At.

All.

Part of the problem is that I’ve written a fair amount about Cerebral Palsy already.

There isn’t an endless well of ideas to draw from, contrary to what many writing teaching and consultants will tell you.

It’s almost February, which means it’s almost March, so I need to get working.

I have a few options, like repost previously published material; but been there done that, will probably keep doing it on occasion.

I try updating material that I’ve already published on the off chance I’ve changed my thoughts and opinions, but that seems unlikely for a few reasons.

I troll the internet for ideas, but most blogs I’ve followed for ideas have long been abandoned for one reason or another, and I’ve probably drained them for ideas already.

I compile some guest posts, I’ve done it before so it’s not completely out of the question, but I’m not the biggest fan of a marathon of material not written by me on something that belongs to me. I would need to vet people and posts, something that takes time and energy, possibly more than if I just wrote for myself.

And the option I like most of all, I open up the floor, meaning I take suggestions.

So, I’m taking suggestions, answering questions, welcoming the idea of potential contributors, and anything else.

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International Day Of Acceptance

IDoA

When I started gaining attention for being an “adult with special needs” (seriously that’s what I’ve been called, more than one should), I spent time reading other blogs, mainly seeing if there were any common myths out there that needed to be debunked (not many worth debunking, for the record).

I noticed that a few people, mostly CP moms (as in moms who have kids who have CP), would mention something called 3E Love. Curiosity got the best of me so I checked out 3E Love for myself.

I bought my 1st wheelchair heart tee shirt (& sweatpants) at my first Abilities Expo. I LOVE the sweatpants. I wonder how I ever traveled without them.

I bought my dad his first shirt before his first Abilities Expo, and did the same for my cousin (it’s become a tradition I guess).

Several people in my life have 3E Love products; my dad even uses a 3E Love sicker to cover up a ding on his car.

I was able to hear Stevie (also known as Annie’s brother) share the story of 3E Love & speak to him personally a few times.

I never had the opportunity to meet Annie but I have a feeling I would’ve liked her based on what I know about her. Our shared skill of using kitchen tools as accessibility aids notwithstanding, I’m pretty sure she was an awesome person to know.

3E Love & the Wheelchair Heart were created by Annie (also known as Stevie’s sister).

wheelieheart

Stevie & his family started the International Day of Acceptance as a way of remembering Annie.

Join in the movement of acceptance.

*A similar version of this post first appeared on an old blog on January 20, 2014 & January 20, 2017

One Word: 2018

Build. Chance. Providence. Transition. Endurance.

Now?

Flux.

Why?

It just feels right.

It sounds better than “blank”, which is really how I feel right now.

I was going to class it up with “transition,” but been there, done that.

This time feels less formal than a transition, like taking a deck of cards and throwing it in the air kind of formal (as in there’s no order to it, at all).

I’m not completely lost, but things are more or less wide open in terms of my next steps.

It’s not like I wake up every morning wondering what to do with myself, at least not every morning.

It’s more of a discernment thing.

One of my most favorite things to do.

(Not really)

I’m not on the verge of existential crisis or anything, at least not yet, but it can easily go that way, based on past performances.

I’m not in any particular predicament either, but again, it could easily go that way.

I do have a tendency to misjudge situations, like staying in temporary jobs too long or not staying in a position long enough to make it a solid life decision.

Do you see why I chose “flux” instead of “transition” (again) this year?

Similar situation, but far less structured, less direction, more questions that will need answering, at some point.

(I’d like it to be sooner rather than later, but God tends to have other ideas)

One Word: 2017 Review

Endurance

There were a few obvious reasons:

-Attempting to become more of a distance swimmer, because although a 50m doesn’t seem like a lot of work it can be just as hard as swimming a mile. I need the endurance, literally.

*I’ve been focusing on 100s & 200s. It requires endurance but if I pace myself I don’t find them to be as difficult as 50s, mentally or physically.

-Although I’ve made it through the bulk of my degree program I’m really just getting to the hard stuff. I won’t be pushed out of my comfort zone I’ll be blasted out of it, no matter how much I prepare.

*I survived, give or take a mental breakdown. Enough said.

The not so obvious reasons were:

-Starting a search that would lead to an actual career.

*Can we talk about how unfun the searching and applying processes are? But I’m making some progress, it’s better than nothing.

-Basically become better at “adulating,” because I’m (hopefully) going to be an adult for a longer period of time than I was a kid.

*What does “acting like an adult” really mean anyway? How does one measure how “adult” they are?

-The older I get, even though I’m not that old, the more energy I need to get things done. I’m not just talking about physical energy but mental and emotional energy, probably even more so than the physical aspects.

*I love naps. The older I get the more I like them. Ironic considering, I was that kid that never napped in daycare or pre-school. I appreciate being able to go to bed (and fall asleep) early. I’m not envious of people who get to wind down their day at 9pm.

-Developing endurance will give me the opportunity to have more time to devote to one thing at a time, hopefully.

*I don’t have the slightest clue what I meant by that. I’m not sure I’m wired in such a manner than would make that achievable. It is a nice thought though, I’ll give myself that much.

Why I: Am Choosing The Back Burner

I’ve been joking for a while that anyone who’s actually following my blog is watching its slow demise.

Honestly, I feel like I’m stringing people along instead of just making a decision (NOTE: if my intuition is correct tell me, especially if you have any strong opinions either way).

Here’s the truth, I’m really enjoying school. Like, if I have any free time at all I want to spend time working on assignments, at least 90% of the time anyway. Why bother putting off “little” assignments that you can get done pretty easily, if you had the time.

The exception being major papers, midterms, and finals, I’m not that far gone. And does anyone really look forward to that stuff?

If it were up to me I’d go to school full time and continue to freelance, because that’s been awesome too. Plus, my advisor, professors, and formation director are fully aware of my goals and more than ready and willing to support my simultaneous pursuits.

It’s a great ideal but it’s just that, my ideal. I have to work in order to make the rest of this work.

It’s a lot to fit in in any given day, but I’ve been able to make it work. In fact, my time management skills have improved greatly (although there is still plenty of room left to grow). So it’s not that I don’t have the time. I could make the time for something if I made it more of a priority.

Here’s the thing, my blog and who I am as a blogger needs to shift or maybe transition would be a better word. I’ve shifted topics from here to there and back again, so that’s not new to me. But I’m not getting the feeling that “Keep Calm & Blog On” is the approach I should take here.

I don’t want to stop blogging. That doesn’t feel right either. I would just be leaving a bigger gap where I’ve tried to fill a void. Nor do I want to overfill the void by telling you everything that’s been filling up my life and how it relates to having CP. I’d rather share the soapbox, if I have to stand on one at all.

So, I need to figure out what I’m doing here and more importantly why, at least when it comes to blogging.

Ideally, and I think what I’m heading towards, is more of an integration of all of my projects. Just how to go about that, if that’s really what’s meant to happen, is the challenge here.

But there’s one thing I have to do first, step back and think.

I’m choosing the back burner, because it feels right.

*A similar version of this post was published on December 30, 2014

Here I Go Again, I Guess

Remember when I said my future as a podcaster was up in the air?

Well it still is, I think.

Dan and I recorded a podcast mainly discussing the future.

If you listen to it you know that we tackle the quality content vs the content for content sake discussion.

And the time it takes to put a podcast together.

Then there’s the matter of throwing something into the void and hoping someone hears you.

But if nothing comes back to you it becomes like screaming into a void, eventually you get tired.

The thing is I’m not just talking about podcasting either.

I have a blog (which you’re reading).

A career.

A ministry to devote time to.

I love creating content for people but I’ve come to realize that I’m not a content creating machine, at least not in the literal sense.

Like many podcasters who recently took hiatuses, like Sean & Greg & Jennifer, I realized I need to take time for myself and things I enjoy rather than focusing all my attention on what others may want to hear about without actually knowing for sure.

I am not a factory if my heart’s not in it people can tell so I need to focus on quality of content rather than quantity of content.

So, for now, or forever, podcasting will be lower on the priority list (for me anyway).

Things could change however.

Here’s how:
-Send feedback whether it be on the podcast or my blog.
-Send topics, again whether it be on the podcast or my blog. It’s a lot easier to create content if you have a topic you know someone(s) is interested in hearing about.

World CP Day

Cerebral palsy (CP) is an umbrella term encompassing a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement.

Cerebral palsy describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to nonprogressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behavior, by epilepsy, and by secondary musculoskeletal problems.

CP, formerly known as “Cerebral Paralysis,” was first identified by English surgeon William Little in 1860. Little raised the possibility of asphyxia during birth as a chief cause of the disorder. It was not until 1897 that Sigmund Freud, then a neurologist, suggested that a difficult birth was not the cause but rather only a symptom of other effects on fetal development. Research conducted during the 1980s by the National Institute of Neurological Disorders and Stroke (NINDS) suggested that only a small number of cases of CP are caused by lack of oxygen during birth.

Types Of CP:
Ataxic
Athetoid/dyskinetic
Hypotonic
Spastic

All types of cerebral palsy are characterized by abnormal muscle tone, reflexes, or motor development and coordination. There can be joint and bone deformities and contractures (permanently fixed, tight muscles and joints). The classical symptoms are spasticities, spasms, other involuntary movements (e.g. facial gestures), unsteady gait, problems with balance, and/or soft tissue findings consisting largely of decreased muscle mass. Scissor walking (where the knees come in and cross) and toe walking (which can contribute to a gait reminiscent of a marionette) are common among people with CP who are able to walk, but taken on the whole, CP symptomatology is very diverse. The effects of cerebral palsy fall on a continuum of motor dysfunction which may range from slight clumsiness at the mild end of the spectrum to impairments so severe that they render coordinated movement virtually impossible at the other end the spectrum.

CP is not a progressive disorder (meaning the brain damage neither improves nor worsens), but the symptoms can become more severe over time due to subdural damage. A person with the disorder may improve somewhat during childhood if he or she receives extensive care from specialists, but once bones and musculature become more established, orthopedic surgery may be required for fundamental improvement. People who have CP tend to develop arthritis at a younger age than normal because of the pressure placed on joints by excessively toned and stiff muscles.
(information taken from Wikipedia and reorganized/edited by me)

Why am I telling you all of this?

Because there is no cure for CP.

But I have to be honest that’s quite fine with me, most days anyway.

That doesn’t mean there can’t be a collective of sorts. Stats are one thing.

Personal stories are another, and even better.

Which is why I collected all the personal stories I could find and put them in one place.

If you have a CP blog, have one that you like, or just know one, leave a comment with the URL

“She’s A Really Good Swimmer”

Two cousins gave me my first swim lessons, basically by letting me fend for myself & pulling me up for air occasionally. Summers were spent in the pool so that’s where I wanted to be. It didn’t matter how I got in there. I’ve never been the biggest fan of lifejackets so I learned to swim early and often.

“Did you hear that Michael Phelps has wicked ADHD & the only way he could focus was under water because he couldn’t hear anything.”

Whether that’s true or not for Michael Phelps I can tell you it is true for some. Go jump in a pool, stay fully submerged, and then look around. What can you hear? Not much. Swimming is as simple as it is complicated, swim to the “X” at the other end. It’s pretty close to perfect as far as focal points go, especially if you’re looking for ways to block people out.

I don’t talk about it often but I was bullied in school, most notably grades 5-8. I was the new girl in the world’s smallest class, I’m also different from your average person, and girls can be relentless. I could hear people whispering and I knew it was about me so I did what I always did. I pretended I couldn’t hear them.

”She’s a really good swimmer”

I had met two of my classmates the summer before school started in the pool of the club our parents belonged to. I had hoped we’d become friends once school started, no such luck, but they acknowledged I was good at something.

I was around 11 by the time swim lessons involved swimming full laps. My first lesson was pretty exhausting but by the end of the swimming “term” I was able to keep up with the class. It was breaking through a glass ceiling for me. I was finally able to swim full laps, the catch is, in my mind that meant being “old enough.”

As soon as I could swim full laps I had a friend teach me how to do a flip turn and practiced it endlessly. We’d turn on the flood lights & go swimming at midnight in my aunt’s pool when we couldn’t sleep. I wore one piece racing suits & swim caps. I was ecstatic when my aunt agreed to buy me my 1st pair of mirrored goggles. I was just as heartbroken when I lost them over the winter.

I hated the words “adult swim” because the adults were allowed to swim laps only, and that’s all I wanted it do. I watched the swim team from afar every year wishing I could wear the same blue racing suit.

I read Andi’s love/hate relationship with her daughter being on the swim team.

It stirred up some feeling, mixed ones at that.

One summer I asked my mom to ask “Coach” if I could try out for the swim team (I was too intimidated by him to do it on my own), maybe practice with them a few times if he thought I wasn’t ready. I knew I probably wasn’t as ready as he would’ve liked but I knew he could work with me.

He had said “No.”

He knew he wasn’t going to let me join the team no matter how well the tryout went so he didn’t see the point in my trying.

I was crushed. If he didn’t even want me to try out I guessed I wasn’t a swimmer at all.

“Coach is a jerk. You wouldn’t have had a good time on the swim team anyway.”

It took a wise all-knowing high school aged babysitter to help me get past it, because when you’re in middle school high schoolers know more than your parents. She had also known “Coach” longer than I had and had friends survive life on the swim team. She was also the one who helped me survive the girl-piranhas. Her opinions were more than valued in my house.

I get where Andi’s coming from.

It’s hard to watch someone come in last. I often watch World Championships & even Olympics where someone comes in not just last, but painfully so. I use to wonder why someone would allow such an embarrassment for their country. One day while watching a race it hit me, like a ton of bricks.

This is the biggest stage anyone can compete on, ever. No matter what happens they made it this far. That in itself is an honor & deserves to be respected. Sometimes “just showing up” does make a difference. And just like someone has to come in first someone has to come in last. It’s one of the not so fun aspects of life.

I understand Sarah Kate all too well.

She’s having fun with her friends, and probably making a few new ones. She’s not she-who-has-cerebral-palsy is having fun with her able-bodied friends. She’s having fun with her friends.

That’s enough. In fact, that’s plenty.

Coming from a girl who wasn’t even allowed a tryout

Just knowing Sarah Kate is allowed to compete makes my loss not feel like one any longer, it’s a sign of progress.

Although it would be nice to find that coach after all these years and show him what I’m made of.

*A similar version of this post was written on August 9, 2012

Speechless For Now, Or For Good

I recently wrapped my 1st stint as a podcaster. It was an interesting experience to say the least. It wasn’t something I ever envisioned doing but I didn’t want to turn down the opportunity.  It was a new challenge. And in all honesty, it was one I wasn’t always up for.

Now that the season is over I’m taking time to evaluate whether I want to do another season. If you listen to the season finale episode you’ll hear me joke about whether you’ll hear me on Special Chronicles in the future.

Honestly, I haven’t made any decision either way at this point.

There’s a lot to consider, now that I know what podcasting really involves.

-I have other projects I’d like to work on.
-Do I have the time for everything?
-Do I have the energy for everything?
-Can I produce enough quality content?
-Do I want to produce more content than I’m already producing?
-Do I have anything left to say that someone hasn’t said or can’t say?
-I went into this venture thinking it would be a temporary gig, although it lasted longer than I thought, that doesn’t mean it wasn’t still meant to be temporary.

And that’s just the short list of thoughts.

speechless-abc-tv-series-key-art-logo-740x416

When does one truly know when to step back, move on, or carry on?

I guess we’ll all find out the answer in the fall, at least in this case.

BADD ’17: In Defense Of The Able-Bodied

I’ve wanted to write this post for a long time, but it’s one of those “tread lightly” things, and that’s not my best skill, so I’ve put it off, but I think today is the day.

I’ve written before on whether or not it’s possible for those with disabilities to be ableist towards others with disabilities. While it’s a divisive topic I think it’s an important one to acknowledge and discuss in certain situations.

As excited as I was to join a swim team I knew I wanted to continue when the season was over, which ended up not being in the cards for a few reasons. I also knew the season was really just a start and I needed to find the next step.

I asked people for advice, people who have been around and faced some of the same challenges, but I didn’t exactly go how I thought.

Before I even made a viable connection, people tried to talk me out of what I had in mind.

It didn’t make sense to me, if the end goal was to create a more inclusive environment what was so bad about my plan?

I showed up to my 1st masters swim practice with extreme caution. I wasn’t sure it was going to work, especially after watching the junior team practice, but I needed to give it a try. I had 1 private session with a coach a few months before and I was still reaping the benefits. If I backed out of a chance at team practices I would regret it.

It was a hard practice but everyone seemed welcoming. I’ve kept a list of goals since I started swimming again. I had been steadily chipped away at them but things stalled, until this practice. I ended up crossing off almost everything else on the list.

Then nearly everyone who encouraged me to seek out other opportunities tried to talk me out of it, even when I didn’t ask for their opinion.

It wasn’t good for me to leave people “who are like me” or “could understand someone like me,” at least according to them.

I understand their concern, at least usually, but what confused me was these comments were coming from people actively working towards more inclusive sports. So, why shouldn’t I join an able-bodied team? Especially if it’s a better fit, in almost every way.

I know there are those out there who feel that I’m betraying “my people” but if the ultimate goal is for people with disabilities to be seen as equals to the able-bodied community so we need to become part of the able-bodied community whenever an ideal situation presents itself.

At least that’s what I think.

I’m not going to say that the change has been seamless. It’s been full of adjustments, not so great practices, and at times downright culture shock.

But I can say without a doubt that I wouldn’t be where I am today if I hadn’t made the change.

And that’s made me think a lot more about inclusion.

When we see a chance for inclusion we should take it, we need to take it. It doesn’t always come with the betrayal of the disability community, and if we keep seeing it that way then we probably should change our approach.

Inclusion isn’t a one-sided issue, we can’t just stand around and wait for people to include us. We can’t just yell, and bitch, and moan about it either, there has to be some meaningful effort on our part, and it doesn’t have to be some grand gesture either.

Sometimes “just” showing up and seeing what could happen is enough.

Blogging Against Disablism Day, May 1st 2017