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We created this blog so that everyone near and dear to our hearts will be able to connect with us from around the globe, hear all about Quentin and the journey that we like to call "parenthood"!

Wednesday, October 12, 2011

Trying new things (part két)

"Part Két?" You ask.

Két translated in Hungarian means two.

You might be thinking I've gone off of the deep end now, but I haven't. But, still your wondering...Hungarian? Great question, and one which I intend on answering! I'm going to do this in a in a roundabout way, but we'll get there, trust me.

I spoke a post ago about trying new things. Well, this is all apart of trying new things. Yippee! So, first we started off by making new friends. Then we decided to step outside of our comfort zone and try some things that we normally would not have (ie. running a 5K). Now we are adding something new to our list. By this point your probably thinking that this doesn't really seem like it has anything to do with Hungarian. You would be wrong. But I'm not quite there. Not yet. So just hold on to your knickers (did I just say that? Really? I think that I just aged about 50 years).

In our world (the world of parents of children with special needs, that is), there are a lot of different therapies that a family might choose to explore for their children. Some people might take the traditional route (Physical Therapy, Occupational Therapy, Speech Therapy...blah, blah, blah), some people might try a few different things along with the traditional therapies and then, there are those that try everything. And when I say everything, I mean EVERYTHING. There are some people that just don't stop. That is not us. We are much more of the traditionalist type. Playing it safe, doing what the doctor's tell us. I have to admit that although I will fight tooth and nail for my child, we pretty much stay the course when it comes to therapy and medications and such. We're not really into branching out and trying new things. We kind of go with the flow and don't stray too far outside of the lines. We're the kids that color neatly. Very neatly.

I feel like playing it safe makes me feel like less of an outcast. Dealing with Quentin's diagnosis was very difficult and it took me, what felt like, forever to start feeling "okay" again. I mean, I'm in it and I'm not going to break down anymore, but I do have times where I feel like we are on an island. Me, Segis and Quentin. And, without sounding judgmental about others choices, I chose to stay away from all of the multitudes of different treatments and therapies and so forth because I tend to feel like it's more about hoping for things to change or "get better" instead of dealing with our reality. And for me I need to be realistic and not spend my time hoping because otherwise I'm going to get lost in la la land and that's not good for anyone. Especially Quentin. I know that he needs therapy to keep his joints and muscles and everything from giving him arthritis and he needs his brain to be stimulated, but how much is too much? What treatments are really going to help HIM, and which treatments are going to make ME feel better and hopeful. You know, or maybe you don't, what I mean? Like, what treatment is going to pull him out of that dark hole he's in and have him walking, talking and feeding himself? Again. Reality. There isn't one. So I stopped worrying about all of that stuff and just focused on the basics. What is our reality? What do the doctor's think will benefit our son the most? My reality is that my son has Cerebral Palsy and at this time there is nothing that can change that. It is not a disease that they are going to find a medication for and because of the controversy over stem cell therapy and stem cell research we may never know whether or not it will actually be a viable option or "cure", so to speak, for people with brain injuries, at least maybe not in our lifetime. So, I've been trying not to hope and I trying not to wish. That's the honest truth (which I want this blog to be). Sad. But true. I've seen other children that were less "affected" than our son being able to thrive with different sorts of therapies and I had long given up on those options being beneficial for our son, but I think that maybe we were just selling him short. I learned awhile ago that doctor's don't know everything and they don't REALLY know our son, not like we do, and now I'm starting to think that maybe going by the book isn't exactly what's right for our son. Maybe, just maybe, we should try stepping out of our comfort zone just a little and allowing him the chance to show us what he CAN do instead of us deciding that he can't do it without even trying. I live in reality, but I'm feeling like maybe hope should be a part of that reality. Maybe hoping for small things, just the tiniest of things to happen isn't going to wreck my world after all.

And so here we are. We have come to the point of the post and all of the Hungarian mumbo jumbo. FINALLY! WOO HOO! Now let's talk about the "new thing" that we are trying. This isn't some radical therapy, it isn't so far outside of the box that you are going to think that I've lost my mind. It's simple. It's actually not too different than traditional therapy. Maybe that's why we like it so much. We're coloring outside of the lines, but just slightly. Baby steps, people. Baby steps. So, In Tucson and around the world actually, there is a program called Conductive Education. I don't just want to call it therapy, but it is therapy with a touch of something better. It was founded by a Hungarian man named Andras Pëto in 1984 in Budapest, Hungary. Did you make the connection yet? I know, now your thinking, all that build up about speaking Hungarian and that was it? Yup. That was it. But it's pretty cool. The therapy, that is. Again, It's not so outside of the box that it differs greatly from traditional therapy, but the program really focuses on Quentin "helping" in his therapy sessions versus therapy just "happening" to him. The idea is that the patient or participant is actually involved in the therapy and that they are a part of the process (there is a little more to it than that, so if you are interested check out http://www.swgaitway.org for more information). That's what we really like about it. I will be posting about Quentin's first session next, but I have to say quickly that it was cool to see him being asked to participate during his therapy. It just felt like he was being treated like any other kiddo out there and that was special, and not in the "special needs" kind of way. Needless to say, I'm so glad that we are stepping out. I really think that Quentin will be able to benefit from this therapy and even though it's not about producing a miracle but it is something that will help him in the long run and will strengthen the abilities that he has and who knows maybe bring out something all-together unexpected. See? There I go...wishin' and a hopin'!

I guess you could say that we are really starting to learn how to focus our attention on what Quentin CAN do right now and also pushing the boundaries of what he can do, now and in the future, to encompass those things that may have been outside of those lines that we had confined him to previously. It feels liberating and exciting and scary all at once. What if this doesn't really change anything? Our biggest fear. The thing that sometimes holds us back from taking a step off the beaten path. Really, only time will tell. It's a leap of faith. And, it can't hurt, right? Well, it can't hurt him. But me? I'm fragile. You might think that it would be the other way around, but our kiddo is tough. Probably tougher than his dad and I put together. It's not easy, but I no longer want our family to be defined by what we CANNOT do, but what we CAN do. It's important. It's life altering. In the simplest way possible it's making us better. Our journey is an ever winding road that, on more than one occasion, will cause us to take pause and chose a new path. We aren't perfect and it's okay (or at least I try to tell myself that) but trying new things is thrilling. Thanks to everyone who has been supporting our decision to explore new territory, it means more than you will ever know.

This post took me forever to write, so if it seems a little disjointed, I apologize.


  1. Yay! So glad you are playing outside the lines. It's all a big, fat, giant leap of faith. Sometimes you fly and sometimes you fall. When you fly (ie the decision you made works out for the best) it's awesome. But when you fall, you get right back up again thankful that at least you took the leap and don't have to spend your life wondering what if.

    Looking forward to seeing where Quentin flies!

  2. Glad you guys are trying conductive ed for Quentin! Maybe we will see you there!

  3. Thanks Shauna! Our wings are growing slowly, but they are growing which is the most important thing. You guys are a great inspiration to us. We needed to see more people playing outside of the lines, it definitely helps!

    Kevin...we hope to have Quentin in the weekend program on the next session, we're just getting his feet wet first! Hopefully we will get to see you guys there when we do and maybe then we'll get to go to breakfast too!!! :)