Sunday, June 14, 2015

Out of the Darkness

There have been several heartbreaking moments in Kreed's life and two noticeable regressions. The first at three years old when he lost all language, motor skills, social skills and behavior skills. The second, just these past three months where he lost communication skills again and completely lost any semblance of  appropriate behavior, preferring to destroy the house, destroy himself and destroy us.

Kreed went from this sweet teenager, learning to communicate for the first time since he lost language, on his communication device, and loved to shop, go out and do activities ... to a teenager who wanted nothing to do with communication, stopped having conversations and obsessed over places to go or over violence. Our lives have never seen such behavior and such violence from Kreed. It both scared us and broke our heart. Because let's be real, while he acted out toward us, it is Kreed who is suffering internally. 
We have been watching Kreed suffer daily and we bear the brunt of that anger and violence from him. We have kept Kreed in home and taken him to several doctors and tried new techniques every day. This isn't our first rodeo. Kreed is almost 18 years old- there is nothing we haven't tried, no stone left un-turned. Nothing is then worse when you know nothing is working and nothing is probably going to work. The helplessness you feel is out of this world. Every day a huge weight sat on our heart and lungs and the panic became unbearable. People watched as Kreed's daily updates on his FB page ( went from positive and fun videos of Kreed communicating, to posts talking about sitting in Hell and sadness and anger. We have given a view into our world and so many have followed our triumphs and now our tragedy as we struggle to get our son back.

If Kreed's story teaches anything, it would be that of hope. As the years passed and he remained silent, we kept hoping and searching until the day he began his first words on a communication device. Then we began to hear his words, his personality, his humor. He had found his voice and provided hope to so many others that not speaking from your mouth, doesn't mean you can't communicate and have a voice. Nonverbal doesn't mean anything other than having a different way to communicate. We filmed his beginning use of his device to having conversations. What we didn't know with Kreed's page and Kreed's story was that we would also capture another regression and then our desperation as his parents. We chose to continue to document Kreed's daily life, even his descent into behaviors and violence. The world needs all kinds of stories, even if it is the desperate and helpless side of autism; a side not often shown of families on the spectrum. 

When the descent starts, you can see nothing but the suffering and violence day after day. You sit stunned and helpless. We didn't know. I look at the blood spattered on the wall. Both his and mine. I see the tear stained face. Both his and mine. I wonder how it all came to this. Where did that sweet boy go that was a hope to so many? When did he become so angry and aggressive? Every day is more questions and no answers. You feel desperate, hopeless, helpless and defeated. Well meaning people constantly try to give you advice and to try this or that, but in reality at also 18 years old- we have done it all with Kreed and then some due to his medical fragility. And we did try everything. Nothing worked. Every day we sat in fear. Fear of our own child. Fear for our child. Fear for our life. When the kids become teens and adults they often grow bigger and stronger than you and somehow you have to keep up the facade that you as the parent are still bigger and stronger. Kreed buys into that for the most part but when he rages, nothing matters anymore. He wouldn't think twice about knocking me out or breaking a limb. And that is what we fear. His lack of social awareness during a rage- he wouldn't know to release or use less pressure. It is all out, full force period. So we fear. 
That fear sticks with us day after day. But with that fear comes resolve. Courage. Strength. To keep fighting. We don't want to live in fear. We have kept taking him to doctors. We have adjusted his medication required for his medical conditions. We've done it all. We have ruled out a lot of things and we have made some changes that have helped. 

Every time in our life when Kreed has regressed or become violent we think that's the end. That Kreed finally lost it all and wasn't coming back and the hopelessness is prevalent. It is so so so hard to think any other way. His violence was astounding and exhausted us and hurt us. The thought of this being our life year after year was too much for us to handle. 

But also every time he has proven us wrong. He is more resilient than I ever thought possible. He is more amazing than most people ever gave him credit for. So we hold on for dear life on this ride of his life and do everything and anything to make his life awesome. Why wouldn't we? He didn't ask to not be able to speak, to be diagnosed with autism, to have nine equally devastating medical conditions which make him medically fragile. He didn't ask for this kind of life. It's the hand he was dealt and I will say he's dealing with it in incredible ways and beating the odds. 
So make no mistake about it, while our life can be hard caring for him, HE is the one suffering, HE is the one in pain, HE is the one without a life. We are his parents and life long caregivers and will never stop fighting for him. We document how hard it is and sometimes it would be easier to give up, but we won't. We will keep moving, keep loving, and keeping him as safe as we can. And to other families out there- you are not alone! This is a side of autism that's tough and heart breaking and dark. But can also be full of hope. 

''Someone once asked me, 'why do you always insist on taking the hard road?'I replied, 'why do you assume I see two roads?'" That quote sums it up perfectly. I see no other path with Kreed but to keep going with him. Kreed can't choose to stop being medically fragile or not being able to communicate effectively. He can't help himself, he can't care for himself. It's not a choice of what we will do, what we will sacrifice and how we will fight for him. It just is. 
This has always been our reality, our truth, our road to walk. Everyone's is different. These are the choices we are making, and the choices we are sharing. People will always have suggestions or say we need a break or he needs to go somewhere but at the end of the day Kreed has beaten the odds with us right there next to him, as it will continue to be. Kreed's combination of autism and medical disorders is so rare, there is no one on the planet that they've found with his combinations of issues. So we fight and will never stop fighting for him to live an amazing life. 

Out of the darkness emerges a pure soul and innocence and Kreed always finds his way back to us. Always. We will never stop fighting for him and for his life. We will continue to tell his story so maybe somewhere out there another family doesn't have to feel alone. That it's okay to have the feelings your having and to realize others are going through the same thing. And to show the hope, when the storm ends, when you see your child come back to you. 

This is our life, our reality, our truth. Nothing more. Nothing less.