Tuesday, February 2, 2016

The Night Before

The night before. 

It's the night before we possibly admit Kreed to the hospital. So many thoughts run through our hearts and mind. And fear. So much fear. Fear the doctors won't listen to us. Fear that he will get worse. Fear for what his true diagnosis is. Fear of the unknown. We have no idea what caused Kreed to cease walking a day and a half ago. Or what started his hand tremors a month ago. Or why he cries or why he holds his legs out to us to tell us they hurt. We fear.

So tonight is the night before. Tomorrow we have our checklist: medication, Bipap, clothes, food, medical records etc. We will gather and get ready. We will look at each other and ask if we're really doing this. Going into the unknown, for an unknown diagnosis and an unknown length of hospital stay. Are we doing this? We know we are- he lays in pain day after day and shows us his pain. We look at each other and we know we are doing this. 

The night before I'm in the living room sleeping while his Bipap and oxygen machine are providing the night sounds because the only place he could sleep was his comfy green chair. So I sit out here worried and googling what could have possibly taken our son's ability to walk. His ability to be even remotely independent. His ability to communicate. 

Today was so hard. He is completely wheelchair bound and he is now a full grown man almost. Transferring him from his wheelchair takes two people and even then it's difficult. So we fear. The unknown. Is this our life? Did our life just drastically change? Has he lost the ability to walk? What's happened? We don't know. So this night before is a mind trip. Of so many thoughts and feelings that get so jumbled. The anxiety is through the roof. The only peace is knowing he has finally slept after two days. 

It's the night before and I don't know if I can sleep. So much unknown. So much unclear. So much could happen. All we know is Kreed is in pain and deteriorating before our very eyes and there is nothing we can do to stop it. Can the doctors? Can they see past his lack of ability to communicate? Can they see him, a boy of 18 who is probably more scared than we are because he doesn't understand why he suddenly can't walk? Can you even imagine losing the ability to function and not being able to tell a single soul? This is what keeps me up at night. Always. 

It's the night before and all I can do is worry and think and research. And hope- always hope- that there will be a brighter day. But right now, in this very moment I fear. For his life, his ability to walk and if the doctors will be able to help. 

This is the night before. 

Sunday, January 24, 2016

Letter to the judgmental...

To the asshole who posted the nasty comment on the last video. You saw twenty seconds of our life. Imagine dealing with someone who is bigger than you are, stronger than you are and who only wants to destroy when they are in pain. Kreed can bite so hard he can almost sever his toes and fingers. He beat his head so bad when we didn't get to him fast enough that he left two large blood filled sacks on both sides of his head. You let me know how you would do trying to protect your child 24 hours a day, 7 days a week, sometimes even through the night. While simultaneously trying to figure out the medical cause that is causing the severe self injury. You have to be a doctor too. Also Thinking about how to situate your home so he doesn't have hard surfaces to hit or put holes in. Or better yet, if you want to make a comment about the way I am desperately trying to control Kreed and prevent him destroying his body even further, come over to my house and take over for just 12 hours, and we'll go take a break and recharge ourselves. Let me know how you deal with his ferocious self-injury from the chronic and severe pain he is in daily and make sure to not sleep the night before or several nights before so you can have the same level of tiredness. Except you can't- you also need to protect yourself and someone else all night for several nights in a row and then do it during the day too. 

We do the best we can every day of our life and it's a miracle that we have gotten Kreed this far. We also eventually find the medical cause, often before the doctors. Or we know what it is but it takes the doctor several months extra to do all the right tests to come to the same conclusion. 

In the ER last night, as four security guards and two nurses are helping to hold him down, they look at me and ask me how we do this at home. Because we're his parents and we don't have a choice but to figure out how to protect him the best we can. Sometimes we fail him and he still hurts himself or us. Sometimes it looks bad form outsiders points of view because...YOU DON'T LIVE IT. Every day. Every week. Every month. Every year. You don't know the heart ache of watching your happy, hoppy boy turn into a boy who hates his body and wants to destroy it and can no longer stand up. You don't know the heart ache of laying on a couch in his room next to his bed, listening for his Bipap breaths so you know he's still breathing or staring at his respiratory numbers all night making sure he is okay. You don't the horror we feel when we can't get to him fast enough and he bites another chunk of skin off or bashed his head in so hard he has two blood filled sacs on both sides of his head. 

Or realizing your once mobile, happy, hoppy child is now wheelchair bound because standing causes him extreme pain. And now figuring out how to modify your home so he can access the whole house without having to stand. 

But please, tell me your judgements. They matter so much to me- notice my sarcasm. Normally I say nothing. I delete, ban or whatever and move on. But every so often, I just feel like I need to let it out. Because I have a right to tell people what our life is like and to show others they aren't alone. Kids like Kreed often aren't talked about or shown because it looks so bad to outsiders. Who have no comprehension of what our daily life is like. You do now, because we are brave enough to show it even though we know we will get our fair share of insensitive comments. But we also know our life can provide hope by documenting what happens to Kreed and what he has to overcome and how we help him on his life's journey- no matter what comes our way. We are honest and true and we open our lives up. 

We are lucky Kreed is still here with us and it's been only because of our sheer determination to give Kreed the best life possible. We don't have the kind of life where we can go out and leave Kreed with someone, or have a fun weekend away or trips or even dinner at a restaurant right now. Our life is keeping our son alive to see another day and we desperately work to get him back to himself when he's lost his way. He didn't choose to have this broken body of his, but we will be damned if we will let him suffer. We will work until he is figured out and giving us his incredible dimpled grin again and hopping high.

The world is full of judgmental people and you sir, are just another drop in the bucket. We will still go on with our lives protecting our son and working tirelessly to get him the help he needs and you will go on in your life continuing to be an asshole and judging people's lives you know nothing about. 

To everyone else, thank you for your continued support and love for Kreed. It's heart warming to see so many people care about Kreed and our family when we're just another family out there with a boy who is trying to find his way in this world. We just happen to film and write about it. I am truly humbled by the support. Thank you from the bottom of my heart.

Thursday, January 14, 2016

Frequently Asked Questions

FAQ's about Kreed's World

1. Name: Kreed Joshua

2. Age 18

3. Birthday: September 9th

4. Medical conditions: Epilepsy, Adrenal insufficiency, Hyperinsulinism, Immune deficiency (CVID), Metabolic Disorder (SCAD), Sleep Apnea, Hypothyroidism, POTS (postural orthostatic tachycardia syndrome), and Peripheral Neuropathy, Migraines 

5. Communication Device he uses: Dynavox T10 with Compass or the Dynavox Compass app on the iPad

6. Favorite colors: Orange, Green, Blue

7. Siblings: Kreed has two older brothers

8. Pets: 3 Labs (Cinna (his service dogs), Kindle (black lab) and Finley (yellow)

9. School: Kreed is currently home schooled due to his vast medical needs. In the past he has attended school and had home-bound services. 

10. How did he get the T10? Through his state and insurance

11. When did he start a device: Kreed had a device as young as five years old (much older technology than now) but no one knew how to work one! So we started again on our own to teach him full on every day at about 12/13 years old before there were even iPads. And we had a fantastic speech that we closely worked with at about 13/14 who really gave us good direction. 

12. How did we do it? It took a lot of work and taking his device everywhere we went and expecting him to use it and not giving him what he wanted unless he did- to get him to use it like he does.

13. Is Kreed aggressive? Kreed is only aggressive when his medical problems flare up and cause him pain

14. Why did you move to Colorado? We moved to Colorado because the high elevation and colder weather help his pain and leg swelling significantly.  His combination of POTS and peripheral neuropathy made his legs super swell and become very painful in heat and elevation below 5,000 feet. When Kreed is in 7-8000 feet he feels so much better. When Kreed lives for too long in lower elevation and heat, he becomes wheelchair bound.

15. Did Kreed ever speak? Kreed spoke and developed normally until he was 3 and then regressed over a period of a year and lost everything- speech, motor skills, self help skills- everything by 4 years old. 

16. The Adolescent Years! Puberty has been rough and testosterone spikes cause all his medical issues to get out of control and he will rage more. At the same time he has developed a lot of skills during these years. But it has been scary as he developed strength and weight and he is much more violent with his rages and when he is angry. It is harder for him manage his emotions. And his sleep! So overall we are surviving but puberty gave us a whole different child and complicated his medical issues tenfold!

17. Greatest Strength: His innocence and pure love for others, as well as his willingness to learn new skills and especially to communicate. 

18. Greatest weakness: Social awareness is one of Kreed's greatest weaknesses. He will watch other children but will not intimate contact or speak to them with his device. He has no self awareness for himself either or knowledge of danger. 

19. Likes - anything Doctor, he loves going to the Doctor and he loves Doctor equipment and Doctor shows, Snoopy, Bowling, riding his bike, music, car trips, hiking, showers, swimming, Star Wars, watching movies like Avengers, Monster's Inc, Toy Story & Tarzan, Horses, and loves Christmas

20. Cool Facts: Kreed is very aware of his surroundings and if asked on his device he can tell you his name and spell it and his age and his brothers names and aunts and uncles and grandparents, and surprisingly to us told us he has autism and how hard it makes things for him to communicate and to move his body. He will say what all his favorite things are and what he dislikes and what he wants and let us know what hurts on him, understands a pain scale and sometimes if we don't know what he wants he will spell it out. We will have a conversation and not realized Kreed was listening and he will suddenly start talking on his device about it or ask us a question! 

Saturday, January 9, 2016

I write...because I have something to say

For those that need context, in some groups there have been a great divide between parents of special needs kids and adults with disabilities- autistic or otherwise. The divide has caused a lot of controversy. I stayed out of it until recently as my son raged out of pain and I reflected on it. What follows are my thoughts on the matter. 

I never weighed in on the whole why I write stuff or the back and forth on all the disability language stuff. Why? Because I honestly don't care. My son isn't part of the stupid inspiration porn (that's what they are calling positive stories of the disabled) because that's not our life. And my son, at least for the foreseeable future, doesn't have a clue what Facebook or YouTube are except to watch his own videos that are posted. 

And Kreed has talked about his own autism and he's not a fan. Because it prevents him from leading a normal life. He won't drive. He won't graduate from any school. He won't be giving speeches. He won't be inspiring to the masses. He has life limiting diseases in addition to autism. And right now he's screaming bloody murder after raging all night, and attacking me for the tenth time today. My body looks like it has been in a war zone. His looks worse from the own self injury he has caused himself. 

We blog. We film. We write. Our life is out there. Why? Because there are thousands of families like ours that feel 100% alone and deal with violence on a daily basis and have no idea what to do or if anyone else lives like them. We do. We have that kind of autism. We don't have the happy neuro-diverse one. Sorry but not all autism is happy go lucky, look how awesome I have become and can write about my life and use correct language. We have the raw, I hope my son stays alive kind of shit. And no one will ever tell me what I can and cannot write about or how. Because my life is too hard to give a shit honestly. When you can come live our life for 24 hours or better yet a week and learn to live with no sleep, cleaning up unmentionables everywhere and some days, just praying I can keep my son alive and safe for another day no matter what happens to my body. 

So as I sit here and my son is yelling because he's not cognitively there after a night of low oxygen, pain and low blood sugars...to me these are arguments are pointless. 

We write because we write and have something to say. It could be about our kids that we love and strive to keep alive, keep safe and teach them about the world and protect them against the world. None of us write for the hell of it, or to embarrass our kids or ourselves or anyone. Everyone has a story to tell. Not one person has the right to tell another what they can write about when it's their own life until you live it. Actually Kreed's page has often been complimented by many autistics for how we do write about our son and I thank them for that. But when this exploded all I could do was shake my head and think overall how pointless the divide is. Everyone has a story and The Mighty lets us write about it so maybe somewhere someone will feel less alone. 

Now excuse me while I go help my son and hope he doesn't destroy us or him and to teach him to not hurt himself but use his device instead. 

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.