Wednesday, April 2, 2014

Sometimes it's about happiness

Sometimes the autism life is about happiness. Probably a weird thing to say given the challenges that all of us families face and the challenges Kreed faces in particular.

Last Monday he went in for a sleep study and it was found that he stops breathing at different times during the night. Yet one more thing this child has to battle. I about cried on the way home from the sleep study envisioning this new journey he is yet again embarking on. And all the other journey's he has been taking already that were difficult enough.
And then I was watching him watch Toy Story for the 34,976th time. And how much joy he was still getting out of Woody and Buzz and how happy he is to watch them. Let's face it, Kreed will be with us for the rest of his life, we aren't worried about independence outside of the home- with his medical issues and communication issues, his life is here at home. The independence hope ship sailed long ago. And that's okay- who wouldn't want those dimples around for life? He is my right hand man and my forever wing man. This took surprisingly a lot of pressure off of things- I know I have many, many, many years to teach this child the things he needs to know. But right now...the only thing I want for him is to be happy. Period.
He is in pain every day. He tells me. You can see it in his face. Or take one look at his legs with the blood pooling and toe curling and it's miserable. He doesn't understand what's happening to him always or why he can barely walk or why he is utterly exhausted. Yet he still gives us those amazing dimples when he smiles. Because sometimes it just about being happy.
So our focus right now is on this kids happiness, what activities can we do throughout the day that will ease his pain and make him happy. Am I going to spend hours working on whatever skill or make him sit through a few hours of home school? Nope. Off to the park we go so I can watch his eyes light up when he's swinging high. In the grand scheme of things, in Kreed's life right now he does not need to be therapied to death, or taught things ad nauseum. Right now, he just needs to experience happiness. We have time to teach him math or reading or writing. Years in fact we have. I have no time table. Kreed learns things as he needs to learn them. Before he began to lose motor function he was learning to read measurements off boxes of sugar cookies and learning some basic meal prep. But then disaster struck and his health took a turn for the worst. So would I rather him labor over learning measurements or just experience his happy smile when he sees I am making him cookies? Pretty sure I want the smile. Because it hurts for him to stand for long periods of time, it hurts for him to walk. So right now, it's about being happy.
We aren't in an emergency stage anymore. Kreed is 16 years old. I have a pretty good idea about how I want the rest of his life to go. Everyone talks about acceptance and awareness etc etc. etc. I don't get into much because I don't want to. We live with Kreed every day and try to make his life better. Period. There is nothing we wouldn't do to help him. So there is plenty of acceptance and awareness to go around. We accept how this life will go. If I could take his pain away, I would in an instance. If I could make it so he could communicate more effectively, I would do it in an instant. But we don't live in that world- we live in his world which right now consists of pain. So yes, right now we are all about making him happy.
We still work on his communication. That is a skill that does not need hours of therapy to accomplish or specific therapies or massive amounts of ABA. Why? Because his device is built into his life- it's his voice and he uses it everywhere, even when hes angry. And ABA is built into his life. Everything we do has a basis in the principles of ABA. I don't talk about it because it's just a way of life. It's not the strict shit you see on videos or when people go off talking about it. It's real, it's applied behavior analysis for real life. It's not hard to do if you understand the foundations and understand why it works and don't listen to people who give it a bad name. Kreed still has to follow certain rules that have been set up for him over his whole life to help him regulate his behaviors. But hey, if he had a great day and hes tired and in pain, I might allow him to eat bacon in his room...naked. Because- seriously, it's about being happy.
Most of all we are consistent with Kreed. When I tell him an answer, that's my answer. Period. And he knows it. I don't ask Kreed to do anything that: 1. I'm not willing to help him with or 2. I'm not willing to follow through on. So if I'm not going to make him clean up all his video, I don't ask him. I just do it. So that way he knows when I actually ask him to do it, I mean business. Okay I'm getting off topic here.

Back to his life and happiness and communication. We are always teaching Kreed- but sometimes the lessons he learns is about compassion, understanding, trust guessed it...happiness. So when this boy tells me his legs hurt, I will then do everything in my power to make him feel better no matter what. If he's struggling to communicate, I will help him through it. If he is having a melt down because his body hurts, I do not get angry, but I help him through it with compassion and understanding. There is a time and a place for me to be a hard ass on him and there is a time and a place where he needs love more than anything. That time is now and that is what we shower him with. Sometimes I may lose my cool, but for the most part he deserves for me to remain calm no matter what he is doing. Because hey, right now it's about being happy.
I talk to some families and have over the years, especially when times get tough and anger flows more freely. They ask me why I stay so calm so much of the time. I tell them it's because I don't feel bad for me, I feel bad for HIM. He has to spend his life being underestimated, treated like his dumb because he doesn't communicate well and is trapped inside his head often. His body doesn't move how it should and even simple motor movements can take a long time to do. He relies on other people 100% of the time for his food, shelter, clothing etc. He can't just hop in the car and go to the store and get his food. He has to ask permission for EVERYTHING even at 16 years old. So no, I don't feel the least bit bad about myself or what I have to go through, I feel bad for the shit he has to deal with every day on a very basic human level. So when I'm up for hours at night while he's giggling or unable to fall asleep, I'm up to trying to help him settle in or make him more comfortable or I'm on google beefing up my google medical degree and figuring out what's wrong with him. When I have to wipe his floor for the 2,459th time, I feel bad for him because it's out of his control. When he is angry because he wants a food but it's 11pm at night and everywhere is closed, I feel bad for him that he has to even ask for permission or wait for somebody to do it for him. I don't get to feel bad because this kid has so much more to deal with than anyone else could possibly imagine. So, our life is about being happy.
I find the moments to revel in. Like our new puppy Finley and how much she adores him and wants to be with him. We don't know why, but even Kreed seems like her- she didn't give him a choice. I adore his face when we make foods he loves. I adore his face when he gets to go out to his favorite restaurant and all the people there that love and adore him for just being "Kreed." I love to take him places or even to the park. I love to put on his favorite movies and watch him hop with glee. I love watching him figure out new things like a remote for his TV. When Kreed asks for things I try to honor it because I know how much it sucks to have to ask for everything. Yet I do still have rules and he can't eat out every single day of his life. So instead I make sure he has fabulous food to eat at home when I have to tell him no so he doesn't get obsessed. We set up a therapy and play room just for him, and we are constantly modifying his room and that room to however it would best suit him. Life can be all about Kreed, but why not? He sees and experiences this world on such a different level and he finds joy in such simple things like Woody and Buzz for the 67895th time or even if we tell him we are making muffins today. Seriously! I think Kreed has more to teach us about life than we can ever try to teach him. My hope is that I teach him to communicate well enough to reduce his frustrations and so that he can tell the world how he feels and how damn funny and smart he is. So that he can be happy.
Autism is probably the least worrisome thing about Kreed's life. He has to fight hypothyroidism, seizures, an immune deficiency, a metabolic disorder, Addison's Disease, and now...sleep apnea. And he does it while still being able to smile like this:
And so to us, teaching Kreed boils down to life. Moment to moment. What does he need to learn in the moment. Before his sleep study Kreed learned about electrodes and what they do and what he has to wear and why. Then his sleep study went great and he didn't fight the wires or anything. He learns to read things as he needs to. He learns math as he needs to. Most of all he learns to communicate, all day, every day, in every moment- he has a voice. I truly believe because Kreed feels like he has a voice he is happier. And now, he can tell me the things that make him happy which is even better. It breaks my heart to see him in pain. It breaks my heart to know basically every day he is in pain. It breaks my heart to watch him even try to walk- and I want to scream at every doctor and beg them to just fix him so he is back to the motor function he had six months ago. Because I want this kid happy. He has to face so much in his life it's ridiculous. So I don't get to be angry at him- I get to be angry at the hand life dealt him and make sure I am a calm presence to him and understanding and compassionate. Sure, I still yell at him when needed- mostly if he's biting his hand- nothing hurts my heart more than when he tries to hurt himself. And then I take him to a safe place and play his favorite music to calm him down, bring out his device and talk it through with him and come to a resolution. That's what this is about now. Understanding, trust, compassion and communication. And having Kreed experience true happiness at every turn and how every much he wants. I owe him that. This world owes him that. So sometimes autism, medical issues or whatever...sometimes it's just about happiness.