Sunday, November 9, 2014

The Luxury of Anger

You don't get the luxury of anger as a parent. Anger feeds chaos and disorganization and hate. I don't get to be angry because Kreed does this or that or doesn't do this or that. When I'm angry, it solves nothing. Or his brother who has Asperger's and picking up the pieces every time a grand scheme doesn't work out. I don't get the luxury of sitting here and being angry.

Angry wastes my time. It's unproductive. It doesn't make me happier. It takes joy. It takes happiness. It sucks the life out of everything. When I rage in anger at any of them, inevitably it makes the situation worse. Kreed doesn't know better or even if he does, he can't always comprehend his consequences and his brother is still unable to see long term consequences.

I want to be angry at so much. Most people don't ever hear me talk about this. I'm patient, I'm kind, I teach. I am able to be that way because I don't spend a lot of time in anger or wondering what if. As Kreed has taught me to live in the now, it lessens the anger- all I see is what it's front of us right now and I have to deal with it.

Sure, some people can be angry that then I don't have these super huge dreams or think about way in the future what things might be like. But why? I can't predict the future. I can't change the past. I have my present now that can affect both. I can improve my situation from the past and I can plan for the future by what I do now. So I figure it's win win.

I could rage against life on how unfair it is to Kreed. I could rage about how I wish our life could be different or he would be driving or dating or thinking about college. But why? It's not our present. It's not our life. My life is giving Kreed the happiest life possible and to always, always teach him so that he will continue to interact with his environment and people in the way that he wants and to find meaning within his own life. That's our life together. I can't separate my life from his to any meaningful degree because we are connected on levels most people would never understand.

Can I go out and have fun while he enjoys his respite time- absolutely. I can leave Kreed for various lengths of time to have a life outside of him. But life is always circular and after those brief moments of time, everything comes back to how it is daily. 

A lot of people fight in the autism world. Some fight against the diagnosis. Some fight about the language of autism. Some fight about the spectrum of autism. Some fight about blessings and curses and vaccines and therapy. At the end of the day you will not see me engage in any of this. Why? It has no bearing on my life with Kreed. It doesn't matter anymore what started Kreed down this path, only the progression. I don't care what celebrity has this or that because they do not live in our life or help in any way. I don't fight about therapy because Kreed is 17 and we know what works and what doesn't and I don't care if other people do the same or not- our kids aren't the same. I do not have the luxury of anger in our life for our actual life so I certainly don't have the luxury of anger for things that have zero bearing on our life. I'm too busy immersed in the life every day 24/7 to give a care about what anyone else is doing or how they feel about some celebrity that may or may not be on the spectrum and on a much further end than my own kid. 

I don't have the luxury of imagining a life that's different or better. The life is how it is. Whether it's helping Kreed succeed in communication or his brother to succeed in being independent- they are the children that were brought into this world with the promise that they would be loved unconditionally and be supported to fulfill their dreams and life. It doesn't matter if autism entered the picture or Asperger's or Kreed's thousands of medical issues. It just is. I can't change it, but I can make things better. 

Some nights I might cry. Some nights I might yell. I am only human. Some nights I feel numbed out. Caring for Kreed is a 24 hour a day, 7 days a week job. For life. Some days things go easy. Other days he rages without cause and I just keep him safe. I always try to figure it out. The more I figure out and teach him he better it is for us in the long run. So I don't get angry for long or much because time is too short and precious for that. 

Then I would miss moments like these:
Other nights I write blogs like this because I have to find meaning in our life and existence when it seems there is not much of an existence but rage and poop or pee or nakedness or days and days of sameness. But it's not about those moments that make me angry. It's about these moments that make me happy and him happy.
And I know in the end our life is enmeshed and for whatever reason we are working very hard to show the world Kreed's kind of autism and what we do to help him be successful that might work for other kids or adults. To do what people did not think was possible and for people to understand that our kids have #nolimits. The more I can help Kreed handle his emotions, learn to communicate and enjoy his time out in public, the better our life is over all- this is just fact. So I get up each day anew and strive to make it better than the day before. If I was angry, I try to find more joy in the new day. 

Or I write. I write and I keep it real. I write and I get my feelings out. I write our truth. No one else's. Just ours. Maybe other people can find commonalities. Or maybe you just love Kreed's dimples so your read about our journey. But at the end of the day it's our truth. Nothing more, nothing less. I will never be pulled into these endless stories that appear in my news feed because it's not part out our truth. At this point in our life, our truth is all I can handle. 
And for the boys affected and struggling, I don't have the luxury of anger because at the end of the day it solves nothing for us. And we need solutions and learning and teaching and happiness and joy. That is our truth. 

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.

Tuesday, September 23, 2014

Learning Never Stops

I wish I knew when it came about that only children need services, or only children need specialists such as behavior analysts or only children need the developmental specialist doctors. When did the focus become only about the first ten years of a child with autism's life, or if you are lucky, into early adolescence. Then BAM, once 16 hits, 17 and then the dreaded 18...POOF, it's gone. The resources your child could access as a younger version of themselves was plentiful. Individuals wanting to help your child were everywhere (well, depending on where you live). Behavior therapists were in and out of your home for years during those coveted years. They are rarely found once the teens hit.

Typical teenagers are in high school and then to further their learning, they go into college or specialty schools or even job training - the list is endless. Adults are always trying to teach themselves new things- whether you want to learn to cook better, ride a motorcycle, learn a foreign language for the first time. The possibilities are endless.

So tell me why...why when our children with autism reach adulthood that most services cease. Most learning programs are either hard to come by or don't exist at all. The number of behavior analysts that see adults with autism are VERY few and typically only in residential, group homes or crisis situations. I want to know why. Our children are in adulthood far longer than they are in childhood. Their learning doesn't cease because they reach a magically age, just like your learning never stops throughout your lifetime Just because Kreed didn't learn to brush his teeth or shower or put on his shoes as a young child, doesn't mean he can't learning it now. He makes weekly gains as we work on it. Kreed had zero communication for most of his life until he was 14 years old. Then he used a device for the first time and was able to ask for a few things. By the time he was 16 even more technology came out and he began to have small conversations with those closest to him. Who knows what he will be saying when he's in his 20's...30's or beyond. His learning doesn't stop.
The view nowadays seems to be to just hold and survive when our kids hit 18 years old. That we are stuck with whatever level our child is at right at that moment. I'm here to tell you it's not true and it's time for us to fight a new fight- that our children are lifelong learners and services shouldn't end just because they are becoming adults. We shouldn't have to hold and survive. We shouldn't have to scour the internet for service providers or doctors and only be told nope sorry, only for children. Why? Someone tell me why?

Why aren't there inclusive communities that don't cost thousands of dollars to attend? Why aren't there behavior analysts willing to work daily with our kids to continue their learning. I don't care if a child didn't learn to read during their childhood, keep trying. Their brains haven't stopped processing information. These children don't become brain dead overnight on their 18th birthday. Learning is lifelong. Period.
As Kreed nears his 18th birthday my only view is this: I can't wait to teach him even more things. While Kreed is incredibly affected by autism and his various medical disorders and will most likely live with us for the rest of his life, that doesn't mean its a life sentence for him or for us. It just means we will be the ones to continue to teach him and expect more for him and give him a life filled with love and happiness.

While some may say "but Kreed is an easy child, look at what he's learning, my child can't do that," I will promptly direct you to the rage videos we have posted on youtube. Kreed was never an easy child. Ever. He was hard. He caused chaos and destruction and everyone who encountered him labeled him as unteachable and that he would never communicate or learn anything of substance. We chose to reject that view and worked countless hours and stayed incredibly consistent with him and gave him a communication device where we then spent many more thousands of hours teaching it to him. He was HARD. He still can be if he's in the mood. But I always knew when he was about 12/13 that if we didn't work our butt's off to get some of those behaviors under control and give him communication, then we would be the family holding on and surviving. So we pushed and we gave up a lot to get him where he is today and continue to. Because it's OUR future. It's not just HIS future, but it's ours as caregivers as well. We are fully aware of the lack of services and that the responsibility for his care falls squarely on our shoulders. So we took it and we teach him. Some days more than others. Some days are complete failures. Others are complete successes. But on our failure days we always know there are new days to come and get back on our feet.
So as Kreed approaches adulthood and I look around and wonder where are the resources are...I realize there is a new fight and a new kind of awareness that needs to happen. Our adult children with autism are lifelong learners, just as you and I are. We need the resources that they had as a child- they can still learn communication, they can still learn self help skills, they can still learn to read, write, do math. They have probably MORE behavioral issues than the younger children, so we need the behavior services so it's not on us already exhausted parents. 
I have always told Kreed: I will never stop fighting for you. 
That includes into adulthood.

Sunday, September 7, 2014

I am not a perfect parent

I am not a perfect parent. 

Sometimes I'm tired. Sometimes I'm hurt. Sometimes I'm so mentally exhausted I can't think straight. Sometimes I'm stressed beyond belief. Sometimes I do not do things right for Kreed or I yell too much or don't take the time to understand. 
I am not a perfect parent. 

The trick is knowing that no one else is either. We try and we do our best for Kreed at each point in time- but sometimes our best is not super awesome- sometimes our best is sheer exhaustion. 

Kreed sometimes has days where he rages all day. Or pees in every part of the house. Or spills food everywhere. Or yells at me all day. Or hits me. He is not a perfect kid either. But we love him unconditionally and to the moon and back. Turns out Kreed also loves us unconditionally and forgives us when we have just as shitty days. These dimples sure help. 
We would like to think we can be there 100% for our kids every second of every day and be perfect therapists also. Sometimes we are just tired parents. Who wouldn't be after waking up every two hours at night to put them back to bed or clean up whatever mess they left us while we shut our eyes for JUST A SECOND. 

When those eyes are open some days are filled with that pee, or poop, or hitting or yelling. That's they way it goes. Like I said, our kids aren't perfect either. Some days the world is too much and it's so much easier to hit and yell and not use a toilet. I get it, I do. Some days Kreed just wants Five Guys for every meal and doesn't understand that's not okay. He's hungry and he wants their fries damn it. So we fight and yell and have it out. Then he apologies, I apologize and life goes on. 

Sometimes life feels like a repeat every single day- sometimes nothing changes and it's a struggle to get through. Other days are amazing. Some days are both. I'm not a perfect parent and he's not a perfect kid. So that how that goes. 
But as long as we keep in mind progress not perfection, I think we will be alright. Last year we were at the end of eight months of pure hell- he raged like crazy and hurt himself and me badly day after day to the point he could no longer ride in a car or be out in public. He was restrained constantly to keep him from destroying his body or the house or me. It was utter hell. I think I went to a part of myself and my brain that kept the full weight of those eight months far far from my consciousness. Now I can barely recall it and I guess don't want to. Now it's a year later and there is much to celebrate! Including knowing none of us is perfect and we do what we can with what we have!

To this...
This is not always an easy life. Some days will be better than others. Sometimes the bad days stack up and you don't even hardly remember what a good day looks like. But it will come- it will be a smile, a nod, a moment of wonderful...something...and the world will be okay for that time- 5 8seconds....5 minutes.....5 hours. That is what we hold on to. 

And remember it's ok. We are not perfect. We try our hardest at whatever point we are at and we love, love, love...and often that is what saves us all.

Tuesday, August 26, 2014

10 Simple Rules for Working with my Child

Dear Therapist, Teacher, Aid, etc,
You are starting treatment or teaching my child. There are just a few small things you need to know before you begin working together. 

1. My child has no limits. There is nothing he can't do or nothing we can't adapt for him to do. If he is not doing something, it is a result of your teaching methods, ability to motivate or lack of creativity. Teach to him, do not have him learn to you. If you take this approach, I guarantee you will be successful in some way. 
2. If I tell you he can do something, and even film it for you, but you say he can't or he cannot generalize to you- again- see #1. If I can get him to do it, then you either have a failure of motivation or he just doesn't like you. In the event of the latter, I wish you luck. 
3. Find what motivates my child. And listen to me if I tell you what he likes and what motivates him to do things at home. I am with my child 24/7, you are not. If what works for me doesn't work for you, then find something. Do this before you ever begin to work. It will go better for the both of you. 
4. Repeat after me: tell me and I forget, teach me and I remember, involve me and I learn. Pay attention to the last part. That is how my child will learn- involve him, show him why it matters. Otherwise, good luck to you.
5. My child will say no to you and that's okay. Then there is room to negotiate. And if you are negotiating that means he is using language! As his parent, the fact that he can argue with you is a wonderful thing. Keep working it. 
6. We believe on cooperation not compliance. If you decide to use compliance as your word choice- again, good luck to you and we won't miss you. My child knows how to cooperate with others and find common ground and learn from you. He is not taught to blindly do what you tell him without the ability to say no, or question why he has to learn it. 
7. My child has a voice and he uses it. Deal with it. We have worked our whole life for him to have a voice. You will not ever decide his opinion on something. Ask him. If you decide to talk for my child, I will invite (or force, whichever must be done) you to duct tape your mouth shut for an entire 24 hours and let other people speak for you and make all your decisions. Then let me know how that feels.
8. Do not talk about him in front of him. He may not always choose to speak, but he certainly has ears to hear and a brain to understand. If you decide to do this, I will have a conversation about you, in front of you and let you feel how it feels.
9. Respect my child and he will respect you. You do not need to talk to him like he is hard of hearing or far below his age. He's a human being and deserves to be treated with respect and dignity. If I hear you talk down to him, again, good luck to you (and by now I hope you've figured out what that means). 
10. You are with my child for an hour, maybe a couple hours or half a day. I am with my child 24 hours, 7 days a week. Do not talk down to me either or good luck to you. I have to hold strong even at 3am and he decides it's time to get up after 3 hours of sleep for me- while you sleep comfortable in your bed at him for your 6-8 hours of sleep a night. When we discuss goals- make them functional for his life at home with me- not just your hour or two hour session. I need to know what works even when we are all bone dead tired or stressed to the max or when we have some down time to cuddle. Until you know what it like to be with my child 24/7, don't ever assume your way is best or think I "should" have done something. Cooperation is the key word here. Or good luck to you. 
This is just a note to let you know the rules for working with my child, but with us as a family. I will never tolerate anyone treating him like he is less than or that he can't do something. If you do not have the #nolimits philosophy, then we won't be able to work well together. Challenge yourself to find what works for him. Teach to him instead of learning to you. Learning never stops. 

In the end I think you will find he is smart, funny, kind and a riot to be with. It's not hard to teach my child if you hear his voice, treat him with respect and involve him in learning. There can be so much fun in therapy when the focus is on cooperation and learning for life. I hope you enjoy working with him as much as we enjoy raising him. If you have any questions- ask him or ask us- we've been doing this a long time with him and we will continue to be doing this for a long time with him.