Saturday, October 25, 2014

Living in the Now

Living in the present. Such a simple phrase. Yet most in this world cannot do this- whether it's worries about the past or anxiety over the future, regret, guilt, and shame over so much. Kreed experiences few of these type of emotions, and if he does, it's fleeting. Because he lives in the now. He lives moment to moment experiencing this world in very different ways than you and I, but equally as powerful and important.

Kreed has a capacity for love I've never seen or experienced before. He knows who loves him unconditionally and without limits and he knows who does not and acts accordingly. He experiences the world in a very sensory way and will often stand outside and just feel the wind. When was the last time you just stood outside to feel the wind whip around your body and the sun beam down on your face? Sometimes I feel like if more of us took those moments we would be a lot better off. Kreed adores hiking and I feel it is because he loves to experience nature, calmness and beauty. (I read this to him and asked him and he said "yes" this is correct).
Kreed also lives in a world filled with chaos. It's a struggle to get his thoughts out, he obsesses at times over things he cannot have right at that very moment and he struggles to move his own body (from his own words too). So many times I feel like he gets through such chaos by the way he experiences this world and has no shame or social inhibitions about how he tries to right his world and restore calmness- even if it's rocking in his seat, jumping up and down or letting the wind over take him. Again, I find myself thinking, what if we all found a way to center ourselves frequently?

One of the many, many lessons Kreed has taught me is to live in the now. I remember the past, but I do not let it consume me. I move on fairly quickly from things because the present is so much more important. I think about the future and I have an outline of plans and I know I will get there- because I will set up my present to get there. I have found myself experiencing a lot less anxiety in this world because I live in the present with Kreed. I live in the moment with him. There is almost no choice. I teach him moment by moment what he needs to know. I think about how things would be easier for him and I outline a way to get him there. I let him jump, I let him rock, I let him make sounds- I let him do what he needs to do, because who am I to stop him from centering himself?
Now that Kreed has a device I am able to understand so much more of this. Yet more wisdom HE has given me. To understand why he does what he does. The rocking, jumping, sounds and sensory experiences- they do serve a purpose. For him it makes him "feel better." Who can argue with that? The world we live in is so filled with chaos even when you are not faced with the challenges Kreed and many others are faced with and I find we go about things in a much more backwards way, while Kreed does it in a much more logical way. And by living in the now, he is able to manage his chaos so much better.

Of course there are times where chaos over takes Kreed or he can't understand why something can't happen NOW and those are the not fun times. Or when Kreed is unable to do so many self helps skills or when he floods a bathroom etc etc. Those moments are not the fun moments, but they are still moments to learn (even if he forgets the next day). The fact is, even if he gets in trouble for whatever it is he can't do...he holds no grudge toward me for saying no or yelling if he does something he's not supposed. It's right back to instant kisses and hugs and laughing and smiles. Because he lives in the now. He is an incredibly forgiving boy, lucky for me! He has taught me to do the same when you love someone. There  can be anger and sadness and things done or said, but at the end of the day, it's always about love.
I commented to someone recently that I consider Kreed's life is so much more important than my own. Why? Because I think he has far, far more to teach others than I do. From his capacity of love and kindness, to how to experience and live this life. Sure, our life can be HARD. No doubt about it. Kreed is home for life- he doesn't get to drive, go out with friends, live on his own or go to college or work independently. That makes life harder for us than most. Some people hate the lack of freedom they have to live their own life away from their adult child. It is a different life and can be incredibly stressful and hard. I get it, I do. But for some reason instead of focusing on all of that, most of the time I try to focus on what we can do for Kreed and for others like Kreed. How do I make his life easier? Better? Happier? Because it is all about happiness. I just feel like he didn't have a choice in this life either- he didn't choose to be this way. He didn't choose to not be able to talk. He didn't choose to have a thousand medical things wrong. The least I can do is make life more enjoyable for all of us. That's why I work so hard on his device. That's why I work so hard at his skills. No one ever said it would be easy, but it is absolutely worth it. Kreed is only 17 and has made a lot of progress in the last year. So I know by the time he is 25 we will be jamming! All this from a boy they said was unteachable, unREACHable and should be placed somewhere due to his horrible behavior. No thanks. Kreed was just trying to shout out from his head and be heard and the only way to do that prior to a device was to have behaviors. Kreed now learns every day and has reached deep into my own soul and touched it in a way that changed me forever. I don't regret that one single bit.

There is another page we follow called Conversations with Casey (click HERE). She often speaks about Choosing Joy. And she is exactly right. That is what Kreed does. That's what Casey does. They choose joy. They choose joy over thinking of the thousand things that are hard for them and instead focus on what they are good at. They seek out joy every single day of their life. And when the chaos over takes, they do what they can to right the world again.
That my living in the now. Living in the present. And focusing on what is more important. To me, Kreed has become a symbol for many- that there is hope, there is a light- but you have to be willing to change your thoughts, your life, what you focus on. Some say no they won't. They shouldn't have to change anything, but the child must change completely. Alone, neither way can work. I can't change the world for Kreed- the difficulties, the chaos, how his body works. But I can change my reactions to it, I can teach him, I can find ways to make it easier for him. I can change some of our life around so that it is easier and less chaotic. We teach him to manage this life better, but we also change our environment to make it conducive to do so. I choose joy too. I choose to find those moments that are awesome, that are happy, that just are. I choose to live in the now as we navigate this world together. I am not perfect and I make plenty of mistakes with Kreed and I do let anger over take me from time to time and Kreed experiences that side of me. Then we wake up the next day and he will cuddle and kiss me and move on that nothing ever happened. He forgives me, I forgive him and our life is richer as a result. None of this is about being perfect. Progress not perfection.
I never started Kreed's World with the intention of anything other than filming his progress with a device because it had never been done to this level before. Yet, for me and for Kreed, it has become so much more. A diary of our life and a testament to living in the now and choosing joy. Living in the now has helped us be able to forgive those hard moments and move on without regret, without wishing things would be different and honestly, to be able to not sink into deep depressions because of the state of our life. We just keep going with each new day bringing us new opportunities.

I challenge all of us to live in the now. To rock. To jump. To feel the wind. To find our center. And see the difference it  can make in all of our lives.

Kreed, I hope one day you can read all of this and realize the profound impact you have made on this world. I know you and I can't wait until we get to those moments. Until then, I love you and thank you for teaching me far more than I will ever teach you.

Sunday, October 19, 2014

The Kindness of Five Guys Burger and Fries

If you live in our community and catch a sight of us in public, you will see a young man hopping through the store, a cool looking device sitting in the shopping cart and a woman telling "hoppy" to come along. Some people stare. Some people smile. Some people are pretending not to stare.

It's okay, really. He's happy and I'm happy and that's all the matters. We generally go through the stores without conversation with anyone else and that's just fine with me. We do tend to live in just the space between us, where I understand him and he understands me.

Except there is one place in the community where Kreed's hopping, dimple grin and sounds are a welcome sight and they greet him with cheers and shout his name and immediately start his order- often times before I even open the door. Reminds me a little of Kreed's very own Cheers place.
Five Guys is Kreed's favorite burger place on Earth. Literally. Ask Kreed where and what he wants to eat and it will be Five Guys every time. While their fries are delicious and burgers large and yummy, I know it has just as much to do with the people as the food. Kreed is accepted there without question. They aren't staring at him but celebrating his uniqueness and love him for it. It's a place where they actually talk to him and wait for him to respond on his device. They will give him all the time in the world to let him order even if it takes a few tries. They are careful to speak directly to Kreed and not look to me to translate. If Kreed gives them money- they give HIM back the change.

They are some of the most wonderful group of people and they don't even know it. To have Kreed go somewhere  and not be treated different- except maybe with more kindness and grace than he has ever experienced before.
Kreed is different and despite being an incredibly handsome (I'm not bias I swear) young man of 17, it's apparent he is different within seconds from his hopping, to using his communication device. Most people expect me to answer for him or repeat their question to him and most just stare even if they try not to. On some level I know Kreed is aware of this by how he treats people. He knows when he is not cared about or treated as the same- so in turn, he will pretty much ignore you completely. In public we are in or own space and he talks to me as if I am the only one that exists. When he walks into Five Guys, it's like the greatest experience of his life.

For that, I will be forever grateful to:
Joe (who was trying to act like a tough guy instead of the teddy bear that he is :))
and Sara.
They have enriched Kreed's life more than they will ever realize. For respecting him and liking him and making sure each time he walks into Five Guys, that it's an experience full of love for him.

People don't often realize the impact they can make on someone's life. For Kreed, they have made him into a Five Guys fan for life and we frequent the restaurant at least 4-5 times a week and helped him learn skills he had been unwilling to do before. And they have given him something he gets nowhere else- for this boy to feel such love from virtual strangers merely by being himself.

To those that love Kreed and live with him every day, that kind of impact is immeasurable. They have opened up his world in a social way that had not been possible before. He became interested in money so that he could go to five guys more, which in turn led to him learning to do chores around the house to earn such money. He learned to use a huge part of his AAC device by going to Five Guys- he learned to ask for the food he wanted, to ask for "more water or fries or peanuts" when he ran out, and to tell me his feelings while he was there (happy and excited). I can't begin to tell you the amount of language Kreed has learned because of Five Guys. But more than that, the people at Five Guys.
We have visited numerous Five Guys over the years now, but none like the crew that is currently at the Dana Park location. I owe them a lifetime of gratitude for how kind they have been to Kreed. Kreed has also been going to the Flagstaff location as we transition to move there and many of the staff has gotten to know Kreed as well and are equally as kind.

But the staff at Dana Park truly love seeing Kreed and look forward to his visits. For Kreed to feel that kind of love from a place is amazing and I will never ever forget the way they have touched Kreed's life in this moment of time.

In a world where we hear about bully's and violence...there are still corners of this world where kindness rules. To the staff at the Dana Park Five Guys, you all have my love and respect and thanks for being such a bright light in Kreed's World.