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. 

35 comments:

  1. May God grant you strength and grant Kreed Peace.

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  2. I am praying for Kreed and for all of you. <3

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  3. Please,please keep writing! I applaud and appreciate your raw, unending honesty and your devotion to Kreed!

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  4. I think about your son and even more often I think about you. I am a mother of two boys whom experience autism - they do in fact experience it differently from one another, and they absolutely experience it differently from Kreed.

    But I am also a mother to a daughter. One whom died just a few months ago due to her complex disabilities she was not a poster child for disabled porn- as you mentioned, she was not going to tap out words indicating she harbored deep spiritual philosophies that someone would be able to manipulate into the latest, 'Tuesday's with Morrie' novella for the masses.

    She was profoundly disabled, never a day in her 13 & 1/2 years went by that someone didn't have to change her, clean her, tube feed her, medicate her, rescue her, feel exhausted/resentful/guilty and overwhelmed by her.

    And I was alone in that experience- no matter who watched us, who stood near us, who may even pick us up off the floor- she and I were alone in her world. Until she left me- and now- despite the timid relief that sheer circumstances affords.... I would give so much to have her back with me.

    You and I have different stories- but they are important ones because no one tells these stories. No one hears about our children in a way that is not a headline or a brief moment left to float away.

    I wish I had shared our story differently. I was so determined to fix everything that I had to keep it hidden - and they stayed inside me, even now- the darkest parts of what we lived....

    So speak loudly, and with absolute indifference to the negative response in the world. Because, trust me- I know- they that speak with criticism of you or me..... That haven't a fucking clue what life is like for these children or for those that love them so much their hearts ache with it.

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    Replies
    1. AngiMay - I hope you write a book one day about your life and experiences - I would buy it in a heart beat. I am so sorry for the loss of your daughter. Wishing you all the best. Hugs.

      Erin - you and Kreed have inspired me (not in an inspiration porn way but in a practical, fought hard to get my 3 1/2 year old son an AAC device, an SLP to teach him and us to use it, and fight every day to make sure all the other professionals learn about it and accept it - seems like a no brainer but everyone wants to do PECS - nothing wrong with PECS but an AAC device is the next step, let's keep moving forward, people, I want to hear my kids and help them communicate better). Seeing Kreed communicate has helped me make my three ASD kids lives better (they are all nonverbal and will learn the AAC device as they get old enough). It is a huge relief to read about the good, the bad and the ugly and know that it doesn't change a bit how much you love your kid and the only one who gets that is someone else living it. I am sending good thoughts and vibes to you both. I truly hope Kreed's pain is reduced very soon. Hugs to you both.

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    2. Wow AngiMay,I hope that you too will share your story with others. Although you have been through so much pain your story can help others at least with the hope that they are not alone nor condemned for the struggle they are going through.

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    3. Thank you for sharing your important story, AngiMay and I am sorry for your loss.

      Rachael

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    4. So true
      Im sorry that your moved on. And you will always miss her.
      Try not to get too angry when everyone tells you it was for the best. She happy now..They dont get that your daughter is not with you where she belongs. So sad

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  5. It's real and appreciate your honesty.My son functions at a higher level,and it is hard.You are doing your best and thats all you can do. I sometimes wonder at the diagnosis of so many kids with Autism and wonder if it's correct.Then, I realize that I can't judge what a child is going through of whether they really have Autism or not.You are amazing and I will continue to pray for answers in regards to Kreeds pain.I love that guy.

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  6. Please keep writing, my heart and thoughts go out to you and kreed, and your family.

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  7. This was well written and hits on some great points. I wish you the best and pray for you often.

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  8. Your words are often a life line to others experiencing similar circumstances who feel they are isolated and alone. I have a son with autism and insulin resistance. While we are fortunate that he's verbal, he still is clueless about the happenings in his body and will rage without warning if his blood sugars drop. I don't pretend to be able to fully comprehend your journey, but I sure as hell understand wanting to help your kid stay alive and free of harm. Please don't let boneheaded people and their snarky optimism silence you. You and Kreed are a beacon of light for us on similar paths.

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  9. This was well written and hits on some great points. I wish you the best and pray for you often.

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  10. Following your page on Facebook and reading this blog. As a person with special needs and wanting to change how people perceive a person with special needs. It hit home when I read how kreed hates his Autism. I always tell people I'm a person first I need to fight but I have no choice. I don't get to decide rather to be brave. Thank you for sharing the real side of Autism and showing how much a struggle it can be for a person.

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  11. Yes yes and YES!!! 👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻

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  12. God, please keep writing. While my son doesn't have the physical issues that Kreed suffers from, he is non-verbal, can be violent (lord help me as he grows) and I clean feces and urine multiple times a day from many surfaces. So, with that said, I am sick of the comments on forums 'I LOVE my son's autism and wouldn't change it for anything!!!!' Well, I am glad for you that your son's quirky train obsession is so sweet and he can function with some help in a main stream class. Sorry, I don't mean to sound jealous or angry, it's just, I hate watching my boy bang his head and poke out his eyes for 35 minutes in the car at therapy because he hates putting his shoes on. Or if he is mad about something and cant tell me he will bite huge chunks of hair out of my head and I yell out crying not because it hurts (it does) but because he is THAT frustrated .It's not cute, it's not inspiring and I hate that I have to cry all the time hoping I am doing whats right by him and keeping him safe when I should be driving him to sports, or robotics club. So please keep writing. Its real, and it is inspiring. Because you keep going. I keep going and we don't want to feel alone. I hope you guys get some sleep soon.

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  13. Thank you for sharing you life. I read every post and I always learn something. I keep you and kreed in my prayers daily.

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  14. As a parent with a disability and a child who also has special needs I urge you to really learn about what inspiration porn is and isn't. Inspiration porn is about the exploitation of disabled people. Your understanding is shallow and it is not about not wanting to hear positive stories. I think understanding this concept is really enriching for those of us in the trenches. Your blog is wonderful. Definitely not inspiration porn.

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  15. People are just dumb and ignorant. They haven't a fucking clue what you and Kreed go through, nor do I. For then to have ANY negative comment what-so-ever is mind boggling to me! How dare they even try to pretend like they know something better than you! I absolutely love your story, although it is heartbreaking at times, and I commend you with every fiber of my being. I believe you are doing EVERYTHING you can and know to do while trying to keep everyone safe and alive sometimes even hour by hour. You are amazing!! Don't even bother with the naysayers or begin to compare your story with this so called "inspirational porn." Everyone's story is different and, to me, YOU are the inspirational one!!!

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  16. I love this. I'm living quite a similar life. "Inspiration porn" is one of my favorite phrases ever---thanks for introducing me to it!

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  17. Your blog is amazing. It gives me hope when I'm crying on the floor with my 4 year old non verbal ASD boy. Gives me the strength to do what ever I can in order to be there for my son. Autism is hard and can be messing and for me its knowing that I can't control everything BUT at least I am there for him and that all that matters. Lucien isn't violent nor has he took his frustrations out on anyone but he does know he is different and gets frustrated when he can't communicate. Thank god for ABA and PECS and also for the moments he hugs me close and says Mom (he can only say Mom, Dad and Go) He doesn't say Mom a lot but when he does it makes everything bad at the moment go away. Thank you for your honesty, your blog, Facebook page, instagram and just for your time. Love you Kreed and family!

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  18. Thank you so much for sharing this. You may not think you are inspiring or that Kreed is and by no means is he in the way that people typically think about people with special needs being inspiring. Let me tell you that it has made me think about my own autism and other medical issues in a different light. He has inspired me to keep fighting. To keep going. You can't change the cards you where dealt, but you can keep going and hoping that it will get better. Thank you for sharing your life. I would love to live your life for that week. I would aspect the challenge.

    Thank you so much for sharing your life. I love you guys and Kreed. You are on my mind and in my prayers all the time.

    Thank you!

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  19. Just want to say keep on keeping on. I admire your strength and courage, but mostly your dedication to your son. Not every parent would stick with it, and I hope your family finds some peace. Lord knows you deserve it. Wishing you well!

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  20. Thank you so much for this. I posted something similar to my fb page, then instantly deleted it in shame.

    Your article made me realize this shame is mine, not Chris's . I am ashamed to admit that I can't always "think positive". I am ashamed of myself for sometimes admitting autism isn't always unicorns farting rainbows.

    I am NEVER ashamed of my son. Only my own humanity. That's a lonely kind of shame.

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  21. I have two children with autism, one of them is violent. I feel your pain. I'm exhausted.. with no help in sight. Every day is the same. We hardly sleep, we never leave because it's just easier to stay here. We never get a break and I'm tired. VERY very tired.

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  22. Let's accept each other,let's be thankful for the fact that today we have communities out there and we don't need to be alone with our stories, whatever they are. I was so alone, all those years ago when no internet existed and no virtual autism communities. I've been at the place where it looked as if the future was non verbal, I've been at the place where the child was on the verge of malnutrition due to extreme dietary restriction, we're in a different place now but I didn't know we ever would be. We love all our children,unconditionally. Let's not use these derogatory demeaning words like inspirational porn. Let's listen to each other, whatever the story. Love and prayers.

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  23. Your posts about Kreed are moving and yes, inspiring. I am so sorry to know that he is in pain and I so hope that there will be palliative solutions in time. What a handsome young man he is.

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  24. Your words comfort me as a parent. We each have our own unique battle and when we get to our lowest we manage to pull it together and be stronger than we could ever imagine. Strong enough for one day at a time. Hang in there! We don't have the option to give up do we? I use writing as therapy for my own journey. It's food for your soul.

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  25. Just keep on doing your thing Erin. It takes exceptional parents to take care of exceptional kids.

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  26. Just keep on doing your thing Erin. It takes exceptional parents to take care of exceptional kids.

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  27. Ima 20 y/o female with sleep apnea,mitochondrial disorder and other respiratory problems. I,too wanted to hurt myself such as thinking of atempting suicide in 9th grade cuz i hate my life. My disorders started out at age 3. Until recently i asked my physician at CHLA if i can have my tracheostomy removed and he agreed by scheduling me for a BiPap study. So yh. I can understanding from Kreed's perspective about hurting himself. You're doing a great job of parenting. Keep up the great work! (: And may i say, im sorry about what happened to him.

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