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 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.