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. 

Tuesday, November 24, 2015

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. 

Monday, September 28, 2015

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 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.

Thursday, August 27, 2015


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.

Tuesday, July 7, 2015

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. 

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. 

Monday, April 20, 2015


Sometimes I feel so broken. For Kreed. For what he goes through and faces. It's more than any one person should ever have to face. Living it every day with him, it's literally a fight for his life. His body is literally trying to kill him. Think about this: if we didn't intervene, he would fall unconscious, suffer a seizure and eventually his brain would shut down followed by his heart. We have found him semi conscious on a number of occasions when he's had a large drop and didn't know. We just had a feeling.
If we didn't feed him through the night or keep close eye on him during the day he is at high risk for coma. A normal waking blood sugar is between 80-110. Most people's bodies compensate and shut down for the night or the liver will convert and release the glucose necessary. Kreed's body does neither- insulin is continually released and his body cannot make more glucose. His body is literally killing him from the inside. 

Before waking every hour at night, we found him with blood sugars from 18-22. On average he would wake in the 40's still considered severe hypoglycemia. When it hits the 20's he is at risk for coma and for sure seizures. We now keep an emergency glucagon shot to give him if we ever find him unconscious. While most people find rest at night, we fight for Kreed's life every single night. 
As it is he was suffering from lows at night without us knowing and he had such severe rages he broke bones. Sometimes he begins to rage and we have no idea why- now we assume low blood sugar. But without sticking his finger every couple minutes we don't know! That's why the monitor is so important to us. Kreed is also going through puberty and is going through a surge of testosterone- this is also affecting his medical issues. All of this is happening inside his body and he doesn't have near enough communication to tell us. Except in behaviors. Rages. Yelling and screaming. All this for hours and hours in the day. And into the night. 

We live our life for kreed- we don't take vacations, we don't even really ever go out- he is so medically and behaviorally complicated.  A nurse could come for his medical but can't deal with his behaviors. A therapist can come for his behaviors but won't know his medical. It's so difficult. So we do the best we can. Some days we feel so broken and worn out. We just want to give Kreed the best possible life. The happiest life. So when he is so unhappy, I feel like we have done something so wrong and failed him. I always tell people I am not angry for this or our life and it's true- Kreed didn't ask for this life. He didn't do this on purpose. He is an innocent child who has been given a horrible hand in life and as his parents it's our responsibility to try and get him through it and to try and find his joy and happiness and find meaning in his own life. I am not angry for what we don't get to do- I'm angry at the life Kreed doesn't get to have but I know he wishes he could have. 
But most of all I just see his health taking a nose dive and I hold my breath, wondering what might come next, what part of his body will fail next. I don't know how much more he can take. I can't imagine living in his body and feeling what he feels and having no way to talk about it. Or having scan after scan and doctor after doctor and no answers. Just more meds which he is often allergic too. I can't believe how much he goes through and yet he can still give me such amazing smiles. And still loves me even when I have to restrain him to protect him. 

So right now we're exhausted and broken. But we don't show Kreed that. We try to remain strong. I feel horrible when I'm mad at Kreed or when he rages and lashes out at us and hurts us. Deep down inside I know he doesn't mean it. Most of the time I doubt he realizes it. 
do know one thing is for sure: we will not stop fighting for him ever. And when they ask how far love goes, when our job is done he will be the one who knows.

Saturday, March 28, 2015

Never stop fighting

There are so many stories contained in one child's journey. Most of the time we talk about how far Kreed's communication has come. From the days of constant rages and behaviors to now constant talking on his device. That journey has been miraculous. But Kreed is also on another journey, that of a medically fragile child. A medically fragile child that cannot tell us in detail how he feels inside. 
Recently he's been having daily rages. Sometimes they lasted all day. It was a level of violence we have never seen. Our sweet boy was replaced with an agitated teen who wanted to destroy everything in his path.  We watched foods. We watched his sleep, his meds, everything. We asked him on his device. We tried everything. We took him back to his doctors. Nothing came up. 
Then today. There it was. Suddenly so clear in front of me. He went from taking a medication for his hyperinsulinism (his body makes too much insulin) a few times a week to then times a day because his blood sugar level destabilized. We traced his rages back to the beginning of that change. He also began to have a rash we also couldn't figure out. We stopped the medication and for the most part he had a calm afternoon.  

He went from a rageful boy who kicked in the front windshield of our car to a calm boy watching his iPad and giggling. 

I will never get over the guilt I feel when I realize it was something we were doing to cause his rages and discomfort. At the same time, it was supposed to be a medication that saved his life and kept his blood sugars in an okay range rather than the panicked range. 

So now we are back to square one. His blood sugars are dropping and he can't have that medication. These are the things that keep me up at night. The worry. The checking his levels the whole night. Not an hour goes by that our life doesn't revolve around Kreed and his health. This is the life caring for a medically fragile child. 

I don't know what to even say. Sometimes we feel so lost. Sometimes we feel so inadequate. We don't have answers. Only more questions. I can't help him. I can't cure him. I can't tell him it will all be okay and have it be okay. His whole life is a struggle and that breaks my heart into a million little pieces. I just want to make his life better. Happy. 

Most of all, I just want him to be happy. That is all. He didn't choose any of this. He didn't know he was born like this with a body that's failed him his whole life. But I will make his life matter. I will give him a good life. A happy life, for as long as he is with us. I will never stop fighting for him. 

Sunday, March 22, 2015

Friendship Needs No Words

There was a video posted online recently that broke my heart. It made me realize why there are so many stories of kids being bullied or being made fun of, or even dying- because they had parents like the woman who said to parents of disabled kids "kill it, give it away or leave it at home." I had a few choice words for this woman. Then I thought about it. With all the stories about bullying and all the stories about the horrifying things the human race can do to each other, let me bring you another side. Where friendship needs no words. This is what should be shared 6,000+ times.

Meet Kreed, who is medically fragile, has autism and uses a device to communicate. And, meet Skyler, who has Usher's Syndrome (leading cause of deaf/blindness), is deaf, losing peripheral vision, has autism and currently does not have a means to effectively communicate.
Both boys have been underestimated their whole lives. People think surely they will never be able to have any kind of friendship. They said they won't understand. They don't have compassion. They don't understand how to love. People have also never understood them- why Kreed is so loud and makes the movements he does. And Skyler has faced challenges most people couldn’t dream about and they wonder why he makes the sounds he does and doesn’t listen and seems to go from one thing to the next. They have their reasons and now finally it seems they have found commonality in each other. Just because we don’t understand, doesn’t make their connection any less. Friendship doesn’t always need words. 

Here is the photo that proves them all wrong.
Skyler was a little unsure of the hotel surroundings. So I asked Kreed if he would help. Kreed walked over, grabbed Skyler's hand and they walked in together. Skyler trusted Kreed and Kreed knew Skyler needed his help. It was amazing to watch. Two boys the world has told would never accomplish things such as friendship and love and meaningful relationships. Or that they shouldn’t go in public because they don’t act the  way everyone else does. 

While the world watches kids hurt other kids with disabilities, or where adults make fun of those that are different or use hate are two boys who are profoundly affected but have found a way to interact without needing words. They FEEL. They CARE. They LOVE.

As a special needs parent, we only hope and pray that one day our child will find their "tribe." Someone they can be themselves with. Someone who doesn't mind their quirks. Someone who is just fine with exactly who they are. Kreed doesn't care when Skyler gets as close as possible to him, or when he reaches out to touch him. Skyler has no idea how loud Kreed is and so never gives off that annoyed feeling and he has realized Kreed is different and similar to himself. So he watches Kreed, follows Kreed and in general they want to be around each other. They don't need words to convey the comfort it is to find your tribe. They just know. And it is beautiful. I've never seen anything more beautiful in my life.

So when we say these kids have #nolimits, we mean it in every possible way. From communication, to cognitive ability to friendship and love. I don't care that's its taken 17 years for Kreed to find a friend, because this friendship was worth the wait. I can't wait to see what the future holds for these two.

And I thank them both for restoring hope and love back into the human race.

Tuesday, March 10, 2015

I'm fine.

I'm fine. The words spoken by most special needs parents. 

I'm fine. 

What we really mean is we are tired, sometimes broken, sometimes sad, sometimes tired, hurt, aching, or numb. Or we might be excited, shocked, cautiously optimistic. But we say fine because so much of the time it's the safest thing to say. 

Some days with Kreed are amazing and wonderful and hearing his voice is the greatest joy of our life. Other days my muscles ache from his rages and I'm numb to my feelings but deep down inside so incredibly sad for the suffering he must feel. Like I said- I'm fine. 

Some days I wish someone would finally look at me and say you are most definitely not fine. But then I know I will still lie through my teeth. Sometimes I ask myself why? Why do we say we're fine? I think it's because the alternative is too great, the emotions are too raw and powerful, and we feel as if we would drown in those emotions if we actually felt them. 

Not everyone talks about this side. When you've spent nights and days awake for weeks or months on end and can no longer even tell the difference between day and night or even if it's a week day or a week end. When you lay next to your child at night listening to them breathe and thankful for each breath they do take because you fear when you hear them struggling for breath. Or when you watch your child pound their head into the ground because it hurts so bad, and somehow in their body, hurting their head makes it better. Or when you're holding your son and the tears roll down his face into your hand while you are holding him and keeping him safe, knowing you would do anything in the world to alleviate their suffering. 

But I'm fine. 

I have to be fine. When people ask me how do you do it, the answer is simple. Because I do. Because what other choice do I have? He's my son. He is my heart. He is my soul. When your soul is suffering, you would do anything to make it better. So I search for answers, I research, I connect with doctors and I never stop until I know he feels better. Because he's not fine. He is suffering and he is telling me. His emotions are raw, his feelings are more real than I've ever seen and his voice rings true- he can't say he's fine when he's not. I have to be there for him. I have to help him. I have to be fine for him. If I break down, it means nothing will be solved for him. I can't do that to him. 

So I'm fine. 

We do what we can, when we can for ourselves. Five minutes here. Five minutes there. Or on calm nights we get snuggy and catch up on our DVR. We rejoice in those quiet moments and save up our strength for the storms we know will come. 

The thing about the storms though- they come, they rage, they blow us around and knock us against walls...and then the calm comes. We can breathe. We take time. We heal. We love. We strengthen ourselves for the next storm. 

Not everyone's experience is like ours, but I can tell you without a doubt, every special needs parent you meet has weathered storms you'll never know about, and lived to tell you another day that they are fine. 

Behind every fine is a story, a past, a strong heart and soul who has seen more and experienced more than most people will ever realize. 

Because we are fine. 

Sunday, February 15, 2015

You'll Be the One Who Knows

What's it like having a medically fragile child who at the same time is unable to tell you his symptoms or what it feels like in his body?

You hold your breath. You check him over every day for any sign of illness, injury and you hope you find nothing. When there is an injury or illness, you hold you breath. You treat it and hope it doesn't spread. You keep the dark thoughts in the back of your mind from entering your conscious mind. You pray the doctors are right in their diagnosis and are doing the right thing. 

You spend a lot of time researching. And hoping. Hoping something will add up. Hoping the symptoms will come together and make sense. 

I spend time teaching. Teaching the language of pain. Hoping he will understand and be able to start telling me. And knowing how hard it is to teach your child the different types of pain. And silently crying on the inside when he does tell you the pain he's in. Knowing every day he's having pounding headaches or it feels like a sharp knife as he tells you. 

Then you call doctors. You research. You try to put the pieces together. Treatment begins and you hold your breath. You hope it's the right thing. But you prepare for if it's not. 

Sometimes you have to protect your child instead of being able to hug and kiss them. This may be one of the hardest things. When my job just becomes protecting and keeping him from hurting himself because the pain inside himself is too great, I often weep at night for the choices we must make. And I just want to hug him and tell him it will be okay and I will make it better. Nothing breaks your heart more than watching them suffer and know you are helpless, other than to try to calm and keep searching for answers. 

It's one thing to be medically fragile, it's another thing to then not be able to tell you the symptoms. Everything is locked up inside their body and you have to play a behavior detective to figure out what the symptoms are and what the cause of those symptoms are. It's a vicious circle. Through it all, you hold your breath. More than anything you love. You love harder than most people can imagine because you never know what the next moment will bring. Will I have the dimple smile and tears of happiness or will I have the cries of pain? Nothing in this world prepares you for the agony inside your heart and the hope that your child will be free of pain and back to health. But to also realize this cycle will not end anytime soon. 
So you are often holding your breath. And loving. Loving harder than you ever thought imaginable. And when you hug, you hug deeper, stronger and longer than you knew was possible. And you live, live a fuller life than you ever imagined and cherish each moment your child is well and happy and smiling. 

And you say I love you. Always. As much as possible. So he will always know your love is there and never wavering. 

"When they ask how far love goes, when my job is done, you'll be the one who knows. " Dar Williams. 

Wednesday, February 11, 2015

I do not speak for Kreed

There are some months with Kreed that you don't even know what hit you. We write about his progress and the direction of our life and then out of no where the rug can be pulled from you. That's not to say Kreed isn't progressing, because he is, but every day he is also suffering from debilitating headaches or migraines, low blood sugars, losing the ability to feel his legs and hands and even his bladder. He wakes up confused and obsessive and unsure even where he is or what he's doing. And we are left to figure out what is what because he is so complicated medically. Is it the sleep apnea causing the low blood sugar and headaches? Or is low blood sugar making his breathing worse? Or are the migraines causing both? Or is it an underlying mitochondrial disease causing all of it? What is the raised bump on his head that caused a bald spot and is that  causing the headaches? One specialist says one thing, another says another thing and most of the time they just send you to the next one.
Meanwhile every day we watch our sweet boy suffer. The only positive that has come out of some of this is his communication. Kreed is finding his voice more than ever. He is learning the language of pain. He is understanding the questions being asked and answering them to the best of his ability. It's why we know he's having migraines. It's why we know what hurts and what doesn't. That means the world to us. To know Kreed is finally communicating his symptoms. He is finding his voice. He is understanding. All of our modeling from the past few years is finally sinking in for him as he is going through this. And this is why I tell families never to give up and never stop trying to teach. Just because it isn't working now, doesn't mean they aren't listening. It will come.
Communicate EVERY WHERE. We use Kreed's device in every single situation of his life. Just as if he could use his natural voice. Even if a child doesn't use their device in every given situation right now, the opportunity to model the language appropriate for that situation is always there. If your child isn't speaking at that moment, then model in that moment instead. We have done this for Kreed and now we are seeing him finally choosing to use that language in those moments. This would not have been possible if we hadn't been modeling his language this whole time.
I wish more people would understand these devices are their voice, just as if they spoke from their mouth. A typical child who is acquiring language will have a model for that language from birth. People are speaking to them from birth and continue to throughout their life. This means they get thousands of hours of language modeled for them. AAC users are learning a different language which they do not get thousands of hours of modeling because the way they talk isn't the way they are being spoken to. This is why it is important to model either on a users AAC device or on another AAC device. When I speak to Kreed, I am often modeling on his device or our companion app on the ipad. He has to learn how to use HIS language from HIS device in every single given situation. I can't expect him to acquire language just from my spoken language- because that is not his language. When people ask me how Kreed is acquiring the language he is, I tell them it is because when he's not speaking, we are modeling.
In the beginning I did not realize this. There was very little information on devices on the internet and even fewer videos. So I didn't realize to model so much in the beginning, it was more teaching Kreed to request and answer questions. He got maybe a couple hours of modeling in a week if we were lucky. Maybe a month. As time went on I realized he wasn't being spoken too or shown language how other kids acquired language and that he needed to be shown in HIS language. The more we did this, the more Kreed learned. It's made me realize that both, having a language system that works for your child AND modeling make the biggest differences.

Throughout our day, just picture this: If I was going to ask Kreed a question or we are engaged in activities that require language, I expect him to answer as if he used his natural voice. If he doesn't know the language, he is shown the language. Multiple times, multiple ways. He is given choices. He is included in conversations and asked to participate. He has a VOICE and we expect him to use it. If he chooses not to, I then model the language. As a result, Kreed now gets hundreds of hours of modeling easily and practice in speaking in HIS language.
Now as a result, we are finally getting to hear his thoughts on what's wrong with his own body. It might not be how I experience it, it is how HE experiences. I can't speak for him. I have had to be his voice for years because he didn't have his own and we relied solely on behaviors. Now we rely on both his behaviors and HIS voice. While we ADVOCATE for him, I do not SPEAK for him. There is a difference. When we went into the doctor last for his broken foot, we are given a questionnaire to fill out on him and symptoms he is experiencing. Rather than fill it out on my own, I turned to Kreed and asked him every single symptom and if he was experiencing it. I can't say if he is having those symptoms for sure or not, but Kreed knows, so I asked him and expected him to answer and he did.

And that brings us full circle. Kreed has been acquiring language on his device at a much faster rate for several reasons: the device he uses is perfect for him, we model, model, model 24/7, we give him choices and we expect him to use his voice in every single situation just as if he was a teen who could speak from his mouth naturally. Now with his current medical crisis, he can actually assist in how he is feeling and giving us a road map. We rely on our medical tools at home (heart rate, blood pressure, blood sugar monitor), his behavior and his VOICE. We will continue to advocate for Kreed and for his health and well being and we will let his voice speak for himself.
While we are exhausted from keeping him safe while he rages and fights his way out of confusion, I always try to hold on to something. Something that gets us through the long days and nights and some kind of light that will lead us anywhere but here...and right now, for the first time, it's Kreed's own voice. We will find him answers and we will never stop fighting for him.