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.

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. 

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. 

The Parents We Have to Be

We are the first family who will tell you the joys of Kreed and the way he sees the world. We are also the family that will tell you how incredibly difficult it is and scary it is to have a child/adult with severe autism and the self injury and aggression that goes along with it. Kreed can communicate but he still can't communicate prior to a meltdown. 

Tonight...tonight my arms hurt so bad I can barely lift them. Kreed split his lip, bruised his head and cut up his hands. He wanted to damage himself to somehow help the pain elsewhere in his body (migraines and peripheral neuropathy). Not to mention his low blood sugars we are always battling. And it is a battle. We do battle every day. Every. Single. Day. We don't know what Kreed we will get. Sometimes it's terrifying watching your son self injure himself and you wonder if you are strong enough to protect him from himself and know that you could get seriously hurt in the process. And we have. Been bit, bruised, cut, sliced- everything. 

For some of us families we not only have to parent and teach but we also have to protect. Not protect ourselves but protect our child from himself. This is incredibly difficult knowing part of your job is to provide that protection. In those moments we aren't parents, we aren't the ones kissing the boo boo's or snuggling and finding joy. We are fierce and strong and sometimes have to do things we never thought we would do or knew we would have to do for their safety. No parent wants to think of that. But we have to. We have no choice. 

He's our son. And we have moments of joy and we focus on his quality of life and finding happiness. But some days his body is so racked with pain due to his medical issues that there is no joy to be found that day. Most people with Kreed's set of disorders would probably tell you they are in immense pain every day and just waking up and being present is enough. Kreed does so much more some days without a hint of pain. But other says he's in so much pain we do battle. 

So today is not a fuzzy loving story telling you the joy we found today or what an interesting way Kreed sees the world. Today was about a battle. About his pain. About his lack of communication. About what severe autism sometimes looks like and we families have to go through. 

Even un-screwing the lid to his peanut butter jar brought me pain and I didn't think I could do it. Getting Kreed ready for bed was painful and long and hard. Because even after he rages and destroys everything in his wake, we still have to pick up the pieces and move on. We have to be the shoulder for him to cry on, even after he's tried to harm us. The moment it's over, it's over. Then we can go back to being parents. Sometimes it's easy giving that shoulder immediately. Other days it's hard and you flinch fearing a bite instead. The fear can get you some days. Everything can get you some days. Some days are a battle and you don't even know if you've won. And some days are exhausting and you don't know how you will get up the next day and do it all over again. But you do. You always do. 

Tomorrow we will wake up and try again. We will try to manage his pain and find what makes him happy. We will tweak things and adjust things and hope he comes out with a smile instead of a punch. Because that's what we do. We are there to pick up the pieces, to love, to cuddle, to hug and be there but also incredibly strong, fierce and brave for your child. We don't know which kind of parent we have to be every day, but we always do it with love and show him as much love as possible. 

We were "that family"

Yes our son has what most people would call severe autism. 

And yes we continually expose him to new experiences no matter the outcome. Some people actually ask us why, when we know it might be incredibly difficult. Or people stare. Or it might upset other people. 

And then some people see Kreed now and can't imagine what it took for us to get here. I will tell you: blood, bruises, heartache, tears and sweat. It was not easy to teach Kreed to maneuver in the world around him. While I wish I could change the world for him I can't. I can only teach him how to navigate the world so he can cope within it and find his own peace and joy with the paths he chooses. 

Kreed five years ago in public: strapped in an oversize car seat, nothing in his reach, not even shoes. Why? Because he takes them off and chucks them at your head...or keys. Like the time it hit the keys and turned the car off, while driving on the freeway. It's that kind of crazy scary things. If he wasn't super buckled in, he would attack you and get out of his seat and pull your hair or hit you. 

Once out of the car he basically just took off running. Parking lot. Store. Didn't matter. See ya. 

Or if you didn't take him where he wanted to go, punching, kicking, a full meltdown would ensue. He was "one of those kids" in a shopping cart passed age just to get any kind go shopping done period because there was no other option. We were "that family" that other people judged because he screamed, hit or would take off running down the aisle and we would after him, often losing shoes in the chase. 

Some say then "Keep him at home where he belongs!" "All he really needs is a little discipline!"

Really people? Because guess what, now he's the cute dimpled smiling boy hopping down the isles and having conversations with me using his communication device. He doesn't run off. He can even go down isles himself to retrieve items. He drives the cart instead of sitting in it. He talks to us instead of hitting us. 

But you wanted him to be kept at home unable to learn the skills necessary to negotiate the world around him. If our son was left up to society, he would have learned nothing these passed 18 years. Lucky for us, he was raised by us and taught to act appropriately in public and actually become an active participant and loving going out. 

I have some other people that see Kreed now and say but he's no where near as bad as my kid and I just say no...you have no idea the blood, sweat and tears that went into the child before you. You cannot judge for yourself how bad or not our child was (who was routinely labeled the worst case at all autism centers and we were rarely given hope this would improve) by what you see now. You invalidate our journey to get here. You invalidate HIM and the work he put in to get here. 

So how did we do it? We took practice trips. We took him out of the car seat and put him in a seat. We set a favorite destination and gave him instructions. If he got out of his seat or was otherwise violent, the car stopped, thus stopping him from his destination. He was reminded. We used visuals. We used communication. We practiced and practiced until he understood the car stays moving to his favorite places if he stayed in his seat nicely. 

Then we worked on stores. Favorite stores at first. If he ran, we walked out of the store. Then we tried again. Sometimes it was in and out 50+ times until he understood he couldn't bolt. Some days he would hit me so hard I saw stars. Or there was blood. Or bruises. But we kept on because one day I knew he would be bigger. We worked on communication and how he could be a part of the shopping. This he loved. And a day of clarity came. We walked out of his favorite store, something was bugging him but he continued to the car. As I put the cart away, I heard faintly on his device (I need some ketchup). This boy who used to only run to get what he wanted or hit me...used his device for the first time to tell me we forgot something in the store. And he's done well ever since then, always improving his independence. 

But it took practice. Tears. Sweat. Blood. Bruises. It was not easy. The stares, the comments, the look in other people's eyes- all of it. None of it was fun. But it was worth it in every single way. And we continue to expose him to new activities. Our son will never learn how to experience every part of this world if we don't expose him to it. Like camping. While parts of it were not fun and there were tears and sweat and bruises- in the end that was worth it too. 

We are the other side of the spectrum. One not often show, but we do daily. Because people need hope. We were "that family." Aggression, smeared bodily functions, in a cart at a store in the double digits, unable to go in the car or store for fear. He was labeled unteachable and unhelpable. 

But we never accepted that. And then we became "that family" that beat the odds. We continue to never give up and prescribe to the notion that it is our job to help him succeed and experience joy and not hide him away or refuse to fight for his life. This is HIS life and I would say it's become a pretty joyful one.

 

Awakenings

6 weeks ago we thought our son was gone. He was here but not "here." He didn't smile. He needed oxygen 24/7. He could barely move his body. He rarely made a sound and didn't want to communicate. He looked at us as if he didn't recognize us.

Today, he smiles with his beautiful dimples, he is without oxygen during the day, he can walk again, communicate again and most all he finds joy daily. Now he's riding a horse, playing sports and enjoying his life again.  This is miraculous to us for so many reasons.

We had 6-8 months of rages. They started slowly where we thought it was low blood sugar when in reality his gall bladder was slowly failing him. Then slowly the rages somehow began to be a daily occurrence and his intensity ramped up. At the same time we were moving to a new state. His previous doctors wrote it off as hormones and autism and behavior as they often do. We knew it was more but didn't know what to do. So we moved. The drive was hard enough with multiple rages and craziness.

In our new state with a new house, new job, new everything and the rages became something we have never experienced before. The sheer violence we experienced daily could never ever be conveyed in words. For the first time in our lives with Kreed, we were afraid. Feeling that fear was one of the worst experiences of our life.

But it also caused us to fight harder and look harder.

We KNEW our boy was an amazing kid who was so loving and generous and joyful. Who loved hugs and snuggles. Who loved to talk every day on his device about food and showers. Yet here he was beating himself, the house and us daily. Something was wrong and we weren't going to stop until we found it.

We finally got a break when all of the sudden the rages stopped and suddenly he wouldn't get out of bed, wouldn't eat and wouldn't engage at all. It was a break because we finally felt like the doctors wouldn't see a kid with autism raging, but a kid who was in a health crisis. After four days of no eating and throwing up anything that was fed, we sped off to the E.R. The rest of our journey is chronicled in both Out of the Darkness and Here But Not Here.

The rest of this story is about his awakening. Our boy finally woke up from the pain, the medications, the fog that took him away from us. It feels incredibly miraculous that he has come back to us and it's a testament to his strength and our strength as a family. We have documented our entire experience from beginning to end with no filter. Our pain, our loss, our love, our return, our joy. We documented this journey to show others to never give up. If you know in your gut something is wrong, if you know it's more than "behavior" and you know your child- keep fighting. If we hadn't, Kreed may not be here today. If we hadn't moved and met the incredible doctors at Memorial Hospital in Colorado Springs, he may not be with us today.

This is also a testament to Kreed's strength.  Our son was in incredible pain, which we may never know or understand the depth of. He tried to tell us and kept asking for the hospital and doctors. We continued to listen and we took him to some doctors and were continually turned away that it was nothing. Listen to your kids even when they don't say much. I am so thankful we continued to take him to the doctor and continued to question him and never again will I doubt his communication attempts. He knows when something is wrong and I can't imagine how frustrating it must have been when he knew no one was listening and he was suffering in so much pain. I can't imagine how this must have felt for him. No wonder he lashed out so severely. Until his body finally gave up.

I'll never forget the day our son came back to us. When he smiled again. Laughed again. Hugged again. Kissed again. Communicated again. Those memories have slowly replaced the memories of him laying in that hospital bed not breathing or having a machine breathe for him. And we know for the rest of our life to fight, fight, fight for Kreed.

Fight for communication, fight for health, fight to be listened to, fight for life. I know our kids take so much of what we have, but I also can't imagine being Kreed, locked inside his mind, unable to fully communicate his thoughts and knowing he is not always listened to correctly. Knowing that his body doesn't always work, causes him pain and it's so hard to do things independently. I can't imagine THAT. And for THAT reason, I am more than happy to spend the hours and hours it takes to get him to communicate on his device, teaching him how to do things himself, listen to him, fight for him and try to find new ways to experience joy. We are exhausted more days than not, but I barely feel it because I always keep in mind that I can talk, I can communicate, I can be listened to easily, I can hop in my car and drive to the store, I can make my own food, and I can live a life without relying on other people to do everything for me. He can't do any of those things and needs 24 hour supervision and someone to help him every step of the way. So no, I don't feel like my life is over because we have to spend so much time helping him and no my exhaustion doesn't compare to what he goes through every day.

And to my dear sweet boy Kreed- I am so sorry. I'm so sorry for not figuring it out fast enough and letting you suffer for so long. I promise to fight even harder next time and listen to your words. I will keep teaching you and helping you and most of all, finding even more joy for you to experience. We love you with everything we have and more.

Here But Not Here

The sound of my son's oxygen flowing through the mask. 

The whirl of machines. 

The blinking lights of the monitors. 

The constant read out of numbers. 

The hum of the computers. 

My son laying there immobilized and unable to comprehend what's happening. 

This is our life and has been for 19 days and counting. This is the life of a medically fragile teenager. He came in for a gall bladder surgery and has never recovered. Our sweet dimple boy has been gone to us now for over two weeks. The pain of missing who he was grips my soul and won't let go. While I know so many others have gone through this, to experience that pain is excruciating. Devastating. Life altering. 

We sit and wonder- will this be our life? Is he gone forever? Will he be replaced with a boy we don't recognize who can no longer do the basic functioning of life? Who doesn't recognize us half the time? Where is he? Where is our sweet boy who got the greatest of joys just going to Five Guys for French fries and loved to hike and kayak and jump on his trampoline. Where is he? Will he come back? Can the doctors find the answers? 

We keep vigil and wonder and hope and try to keep faith. But every day that passes without seeing our boy, another day of lost hope. How do you get that back? How do you keep going in the face of so much uncertainty. I don't have those answers. We just do. every day. We sit and keep vigil and keep trying and keep hoping. 

How do you mourn for a child who is still here but not "here." His body is here. He "looks" the same except for the confused look in his eyes. Where once they danced with light, now they show me a child that's not mine. He is, but he isn't the child I've known. Everything we've known about him is different. I'm no longer his favorite person, he no longer wants to cuddle and make happy sounds, and he no longer smiles with those dimples that go on for miles. Instead he pushes me away, he pinches me, he hits and kicks. He yells in a deep voice and wants nothin to do with love. He looks at me most of the time as if he doesn't recognize me. Everything is different. The sweet boy that loved us, loved life and loved learning has been replaced with a virtual stranger I know nothing about. 

We lost him once before when he was young. Kreed talked and had wonderful motor control. He was typical. Then over the course of a year he lost everything and he was silenced forever with his own voice. His voice was taken the first time, but his life force was taken this time. The essence of Kreed is missing. The amazing, sweet, sarcastic, playful Kreed is gone. We don't know if he will come back or when. We don't know anything, much less why he was taken. Just that he was. 

So now my tears fall as I look back on his vast pictures and videos. And learn to mourn for a boy lost again. We helped him find his voice again after ten years of searching, but can we find the essence of him again? Where is he?

All I can do is weep. Weep for him, for us, for our life vastly changing again. I watch him day after day and know I'm watching a stranger. And wonder if this is the stranger I'm going to have to get to know and figure out and begin a relationship with. Or this this a temporary stranger, place-holding for the real Kreed while he heals deep inside his brain? Only time will tell. Until then I search for the lost boy and mourn the loss of a child who isn't here but is.