Thursday, December 31, 2015

Not That Kind of Autism

My news feed is often flooded with news articles on autism. 90% of the articles talk about how this kid or adult can now speak and is graduating college, or working at xyz or has some miraculous recovery or speaks about their own autism or stands for the autistic movement and are proud of their neurodiversity (and has every right to be proud- I'm happy for them and the way they stand up for themselves and how they feel). I am proud of all these kids and adults. But it's not our son. It's not the kinds of things we get to celebrate. Don't get me wrong- we celebrate a HELL OF A LOT of things, but it's not those things. It's not that kind of autism that he has.

We work hard for every step Kreed takes. Sometimes he fights against new skills and we work harder. He fought against a communication device and raged and cried and hit and kicked and bit. Until the night he finally realized it helped him communicate. Now it's been a slow process to teach him language is more than requests. Some days he has clarity we've never seen and other days he refuses to communicate at all.

He's not a kid who magically learned to type and held it in all these years. I wish. And we have tried. But it isn't in the cards for Kreed. His combination of medical conditions make using his hands incredibly difficult and painful. His only method of communication is also painful for him due to his neuropathy. We will never have a speaking miracle because the nerves involved in speaking have been damaged for years. Every step Kreed takes is literally painful for him. And he's locked inside his head unable to fully communicate everything he is thinking and feeling and at times refuses too even when given the tools to do so.
So we fight and he rages and we continue to work to get him to communicate and be present with us. Some days his medical conditions make it too painful to even get out of bed. Those days we feel so disconnected from him. I miss the days of health he used to have even when he drove us crazy. Watching his body work against him is heart breaking and watching him in so much pain is even worse. But still, we work and help him gain skills. I hand him his clothes to put on, he throws them back. I hand them again and he puts them on. I tell him clothes go in the hamper and to learn to do the laundry. We work hard to give him his independence. He doesn't always want it, but in the end we know it's important and he always feels better when he learns to do things for himself.

We don't do what's easy for Kreed. We do what's necessary for Kreed.

The kind of autism Kreed has doesn't lend itself to celebrate his neurodiversity. In moments of clarity Kreed talks about his autism and is angry. It stripped him of his ability to speak and his ability to be independent. Which is why we work so hard to make him communicate and teach him independence. As much as he will hate it at times and not want to do anything, in the end, it is his goal, as well as ours.

And we celebrate. We celebrate every conversation we have with him. Every new step toward independence. Every moment he smiles with his amazing dimples. Every new phrase he learns or new communication attempt. Or if he learns to talk about his medical conditions. When he learns to play new games. We celebrate if he's happy. That's the end goal. That Kreed is happy in his life. That he finds his own path and is happy in his life. His body is riddled with pain and his mind gets clouded by all his medical conditions and he can't always find his way out. So we celebrate low pain days or no pain days. Or days he is truly with us. Those are the things we celebrate. It may not be super miraculous to other people or headline news worthy, but it's amazing to us. It's amazing to him. We are so proud of our boy for all he has accomplished despite 10 equally debilitating medical conditions. When we hear others with similar medical conditions but can speak about it, most say they don't even know how they get out of bed every day. And Kreed does. Every. Single. Day. And he fights againt the pain and fights for his life. Every. Single Day.

People want acceptance and awareness but so often there isn't much acceptance or awareness of those that remain nonverbal and can have extreme behaviors at times. Kreed stands for those kids and adults. We never stop helping Kreed find his way, no matter how many times he hits, kicks or destroys things due to frustration and pain. He deserves to have the best life possible and deserves for us to never stop trying to help him and help him find his way from the pain and the brain fog and to continue to teach him so he can better communicate and be independent. True acceptance and awareness means acknowledging that kids like Kreed exist who won't make the headlines  and live a very hard life full of uncertainty and lack of awareness, communication and independence. And realizing that we must fight to teach them those things.

At the end of the day though, we celebrate Kreed. All his uniqueness. His humor. His unconditional love. His friendship. His communication and drive toward independence. We celebrate Kreed. For exactly who he is and what he has accomplished. Kreed doesn't have that kind of autism most people read about, but what he does despite the odds against him is amazing and he does stand for hope for others with his kind of autism.

Tuesday, December 29, 2015

We don't sleep so Kreed stays alive

Wake up. Alarms going off. Is it oxygen? Blood sugar? Blood sugar. Ok, get the sugar in him. What time is it? 2am. Time for medication. Take his Bipap and oxygen off. Come on Kreed open, open for the pills. Ok. Swallow. Come on buddy swallow. Ok, here is your mask again. 
Alarm going off, what is it. The phone. It's 4:30, check the camera to see if his Bipap is still on. Ok. Back to sleep. Alarm going off. 6:30. Time for the next set of Meds. Bipap off, Meds in, Bipap back on. Ok
Alarm going off 8:00am. Meds again. Bipap on. 

We don't sleep at night. If we did, Kreed could easily go into crisis or even pass away in his sleep. Some nights I have an alarm set for every hour because some nights he never sleeps but I have to keep waking up to see if he's asleep or not. We are lucky because he typically doesn't roam the house once in bed but that's never for sure. His room is directly across from ours, so we see any movement or light or anything that could happen. We also have cameras set up in his room and the rest of the house with sound to hear what he's doing. 

Then there are the extra fun times that a migraine comes on in the middle of the night and he wakes into a full rage. Or first thing in the morning. Or anytime. His medical conditions are so severe and complicated, you never know what will come next. And although he can use a communication device, he isn't able to tell us prior to a medical episode. Only the aftermath. 

So when I'm walking into work and look like I haven't slept in days, it's because I haven't slept in years. His sleep apnea, Dysautonomia and hyperinsulinism diagnosis changed our lives forever. It changed him forever. His medical needs have grown tenfold. And his reliance on us to catch him before he falls has increased by a thousand. While the majority of people with these conditions, including adrenal insufficiency, can tell other people when they start to feel sick or need medication or are in pain- Kreed so far can't tell us any of this. We solely rely on his behavior or any other possible sign we see. Kreed has several severe and life threatening medical conditions and he relies on us 24/7 to make sure he doesn't head toward the life threatening part. Some days it seems incredible that his body has so much wrong and we are the ones keeping it going. Some days I don't know how we do it. We stay hyper-vigilant and track everything about him to make sure we keep him healthy and moving. Some days it all goes wrong and we don't know how we will ever get him back. Some days we just don't have a freakin clue. 

We don't sleep so Kreed stays alive. Sometimes I don't even comprehend the magnitude of that statement. I don't know how our life took this direction. And I can't imagine what Kreed feels daily as his body fails him. I just hope upon hope that we are giving him a happy life despite all the pain...and that we stay awake so he can stay with us. 

So if anyone is wondering what our life is like, just look at how we spend our nights and that about sums it up. 

12:00am, Kreed in bed, alarms set, Meds in place, sensors ready, Bipap ready. Our night begins. 

Sunday, December 27, 2015

This was not a Norman Rockwell Christmas...

Part of writing about Kreed's journey is of course writing about the inspiring things and what Kreed can accomplish. But it's also writing about the hard times and how we live our life with Kreed. I could be angry. I could be sad. I could blog about how hard this life is or how our life isn't about being shiny happy people. But it's not about us. It's about Kreed, who wasn't born with a choice of how his life would be. How he couldn't speak or be independent. How he won't be able to experience the same things as other 18 year olds and how he will live a life of pain and not be able to speak about it. 

Christmas this year was a hard one. Leading up to Christmas Kreed was happy and calm. Christmas Eve it all changed and Kreed raged and was in so much pain I don't even think he knew it was Christmas Eve. He woke up okay at first on Christmas and opened some presents. But for the most part he was uninterested and eventually more rages. 
And that's our Christmas some years. He left a lot of presents unopened and we opted to keep them under the tree and hope he comes back around. Which as you can tell in this picture he did! Took two days later, but he finally woke up pain free and happy. 

We would have wanted to do our Christmas Eve traditions and be excited and watch Christmas movies and get into the holiday spirit. Instead we had to protect our son from causing himself bodily harm. We could be angry about this. We could complain about our life, but why? He's the one in pain. He's the one suffering. Our job is to help him and try to figure out and lessen his pain. Our job is to be there for him and love him no matter what. Why force traditions or force him to open all his presents etc. That would be for US and not HIM. What would that add to his life? So who cares if it takes him a week to realize his presents. We just want him happy. And two days after Christmas he finally was happy and thrilled with his gifts. That's what's important. Not him conforming to our timeline or how we think things should be. He is making his own path in life and deciding what would make him happy and that's what we go with!

I'm sure I could wish for a better life for us or one where we can even go see a movie or dinner without him or sleep through the night without having to wake up constantly for meds and his Bipap and oxygen. But wishes won't make our life better. It won't change our life, it won't make him live without pain or have his own voice back. So I don't. We live our life day by day, moment by moment. We work daily to try and figure out how to calm his medical conditions so he can live a better life. We see no other choice. The better we can make his life, the better our life will be as well. 

So Christmas. It wasn't perfect, far from it. We aren't a Norman Rockwell kind of family. But we are a full of love kind of family that just want the best for our son. Even if it's two days past Christmas before we get to see his beautiful dimples as he opens his remaining presents.