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.



34 comments:

  1. Erin i couldnt agree more with you. You all are very strong. People need to stop judging. I hope and pray you can get answers for kreed fast.

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  2. Erin i couldnt agree more with you. You all are very strong. People need to stop judging. I hope and pray you can get answers for kreed fast.

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  3. Erin, you guys are very strong! I hope and pray Kreed will feel better soon. People will never understand what you're going though. Until they all walk in your shoes. Always praying for your family! God bless and much love!!

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  4. I know my comments are like a breeze touching your face. They do not have substance or the ability to change anything. But I want you to know that people do care; that every child is worth all the love and protection you give your son. I hope that the smiling, happy boy pictured above will return soon. I pray that God will bless you and help you all. Robin

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    1. Robin you are a beautiful human being.

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  5. Erin,
    You are doing a great job. I cannot imagine what you all are going through. I am praying always. Can't wait to see those happy dimples again! Michelle

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  6. omg erin i hate that on top of all this you have to deal with idiots you guys are so brave to show us your life but honestly i for one am greatful, thank you i hope kreed is on the mend soon

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  8. There will always be a few douches. There will always be someone who thinks they know it all. There will always be people who think because they have come into contact with Autism , they understand your life with it. I live with severe Autism everyday as well and I have to say that I truly admire you. Your dedication to your son touches me. I feel guilty because while my sons severe behavior scares me you look for answers. When my son is particularly destructive or self injurious I pray for a day I no longer have to deal with it and you get up every day trying to figure out how to muddle through. Your child is beautiful. You are beautiful. Your struggle is not. Id like to say it will get easier but as you so poignantly pointed out people don't understand severe Autism. Nor do they want to. They push us under the rug while they highlight their success stories of those with lighter challenges. They pretend we don't exist. Thank you for bringing severe autism to light. Keep plugging on, it will be because of people like you that someday, somewhere someone will finally listen

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  9. Funny you erase my stuff too honest for you??You judged us for medicating !!!Guess what it's our lifesaver it calms our little guy so he doesn't hurt himself or others .oh but we are one of them***ssshmm keep seeking attention not solutions our grandson will continue being medicated and not hurting himself or others

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    1. This post is not about you. Funny your so defensive when this post is completely not about you.
      I never meant anything by my comment earlier- you can't imagine how sleep deprived I am and people constantly telling me what to do, and Kreed is not a kid who needs behavior Meds as people have tried to shove that down our throats for years when Kreed is a medical case not a behavioral case. But when people tell me to screw myself, I don't have time for that so I move one.
      If you can't understand where I'm coming from then don't follow Kreed. I'm tired and exhausted and don't have time to deal with people who take comments wrong.
      Again though- this post has zero to do with you and everything to do with some asshole who said far worse things than screw you.

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    2. It is a hard decision not to medicate your child.Erin we support you, even if we didn't agree. None of us are living what you deal with and clearly you love your son. Some people would just institutionalize they child not to deal with it. We love Kreed and are praying for you.

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    3. @Barbara Shlep, what may work for one Autism child may not work for another! As an Autism parent, why not offer support instead of judgement since Erin is already going through so much with Kreed already incredibly medically fragile state! God bless you Erin, my prayers and hopes for Kreed's quick healing and smiley, hopping self to return very fast!!!!!

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    4. @Barbara Shlep, what may work for one Autism child may not work for another! As an Autism parent, why not offer support instead of judgement since Erin is already going through so much with Kreed already incredibly medically fragile state! God bless you Erin, my prayers and hopes for Kreed's quick healing and smiley, hopping self to return very fast!!!!!

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    1. Wow you are some kind of nasty lady. This woman is exhausted, her heart is hurting, and your solution is to comment this way? Learn some manners and some compassion. If you have a kid with autism you should know better than to judge and spit on the other mom who's trying to figure it out. In case you don't know, 'cause of your judgemental self, autism hits everyone differently. Are you a doctor treating her son? Do you know his full medical history? If not then kindly stop trying to take this moms attention from her son. Let the doctors, who know what they are doing, treat this precious boy. Stop diagnosing, because unless this kid is being treated by you, you don't know anything.

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  11. You do such a great job. Some people are just so ignorant that understanding your situation is beyond them. Please don't waste precious energy on people like that. Your energy and determination are admirable, and to see that you are dedicated in heart and soul to this little guy is just amazing. I'm sorry an idiot got to you. Its hard to deal with autism, and when it's severe it's nearly impossible, but you do it and inspire many of us to hang in there. For that I thank you. I hope Monday you get those much needed answers so that your sweet boy can come back to you. I am a stranger in this vast facebook world, but my heart aches when I see Kreed suffer. Looking forward to see those cute dimples again, Xiomy- love from Austin, TX

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  12. Huggz to you, Kreed and your Faimly:)

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  13. I must say, it is amazing that you're able to ignore any negative comments at all. That is admirable of you. Parenting is so very personal, and criticisms about how you parent your son have to be so painful. No one's heart is bullet-proof. Your armor must be strong. I imagine it's all bound to back up on you eventually, and you have to let it out. I do hope your brutally honest words give you some of the relief you need. As you already know, you have many supporters. Total strangers like me, who watch your life and wish they could help, wish there were more answers for you, wish you even one peaceful night of sleep. We can only hope our long-distance support and good wishes can nourish your soul even a tiny bit.

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  14. I cannot even begin to imagine what you go through every minute of every day. God bless you and your family! To me it is very clear how much you love Kreed. He is so lucky to have you.

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  15. I cannot even begin to imagine what you go through every minute of every day. God bless you and your family! To me it is very clear how much you love Kreed. He is so lucky to have you.

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  16. Every child is different AND every Autism child is different. Right now this is about a young man that is hurting. Hurting and not able to understand why his body is fighting against him. Erin, you're an amazing person and Mom and you'd do anything to protect Kreed and your family. Unless someone will walk a mile in your shoes they have no right to judge you. I'm so thankful that you have shared Kreed's world with us. People also need to know that its just not about Autism. Its about Kreed and his will to just live life the way that is best for him. For people to judge Erin or to think that meds just make everything fine and rainbows.... Get a reality check. This is the truth, every day isn't rainbows or sunshine.

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  17. Bravo Erin! What people always forget is autism is a SPECTRUM, what works for one may not for another. Each of us has to find the path that works best for OUR child in OUR unique situation. True Warrior Parents never judge, we realize that each of us is on an individual journey. Whether your journey is therapy, behavior modification, pharmacotherapy, natural remedies or one of the 1000's of other roads you are traveling, we all have chosen based on our individual situations with countless hours of professional consultation. No choice for our children is ever taken lightly! Unfortunately, although we have good days, some days are dark, black dark. None the less, we are all putting 150% of ourselves into this every single day! Erin, you do what you do for Kreed & I'll do what I've got to for Drew. I've got your back girl as I'm sure a lot of other moms! ❤️ ❤️

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    1. Yes yes yes! So agree with all of this and I feel the same way about my son Lucien.

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  18. Please know that your family is amazing. Kreed has made me laugh and cry. I hate to see him suffer and can't imagine how you do it. But I can tell you devote your very existence to your son, and that includes defending him. So tell as many people off as you feel necessary, because only you know. You have my love and support always.

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  19. Erin you are an amazing parent. Kreed is so lucky to have you. I applaud you for all that you do for him. Kreed is an amazing kid and I'm sorry he isn't feeling well. Prayers for your family to get better and back to what your normal is. Smiling happy Kreed.

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  20. Praying you get a doctor tomorrow who is knowledgeable and compassionate and truly makes a difference for Kreed which will make a difference for you all. My daughter has PDD, bipolar, liver metabolism issues which prevent using many medications and epilepsy. When we were questioning what we suspected to be seizure activity we kept being told it was behavioral due to get PDD even though she had no history of those Behaviors ( this word makes me cringe now) well she was diagnosed with epilepsy and every time she did one of those supposed PDD behaviors she was having a seizure. Moms never give up and we know our children best with or without medical degrees. Thinking of you always. Perhaps the doctors can give you resources for some in home help also even if for only a few hours a week. Our neurologist was able to tell us about some care services available only through the epilepsy foundation no one else ever mentioned.

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  21. I never respond to posts but I am having a difficult time walking away from this one. Why would you say this? Why would you take the time out of your day to be the one who is a shitty human being? It is mind blowing that you would say that to a mom that is doing her absolute very best to love her child and to be what a parent is supposed to be. I sure hope you don't have kids and if you do, I sure hope they don't have any disabilities because I can't imagine you doing ANYTHING like this woman is doing for her son. Bless you and I hope you're heart softens to have some COMPASSION for others. To Kreed's parents, PLEASE delete this person's comments and don't allow this poison into your head.

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  22. I will not even bother to waste my breath on the disgusting comment above! Exploiting a child seriously WOW, do you even comprehend the words you spew onto the page. You either have very little knowledge regarding child exploitation or are just a troll! Even that is was many more words than you deserved! To Kreed. I am so sorry you are going through all of this, every morning and evening I log in to get an update. Some news, I live so far away, a world away from you and your family. Although as a mother myself and having spent sometime working with special needs children I can only imagine, and feel compassion, and empathy, I will never truly understand what your daily life is like, or what 24 hours in your life would be like. We see 10-15 minutes of you day, a tiny window into Kreed and your world. Although I suspect that even if I could get to you, or lived near your home Erin, and get to know Kreed, and offered to stay up through the night with him so you could sleep. Or offered to stay with Kreed so you could go out for the night or away for a weekend you would decline. As a Mother you know what he needs better than anyone else on the planet! You wouldn't sleep because only you know what to look for, and worry is not something that quiets. You are not alone. I love the words above 'I know my comments are like a breeze touching your face.' it is so true! Please know that there are those of us who see a small part of your day, who share your sorrows and you joys. Not to the extent you do but we love to see that happy hoppy boy with the beautiful dimples. But there are days when he is hurting too much and we love him all the same. Sending you love, strength and support. And as a parent to another parent, you should never have to explain your reasons to anyone else as they don't get to make that judgment!

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  23. Hugs and lots of love to you all. I think you two are absolutely amazing and Kreed is so blessed and loved, all of you are. I wish I could help, all I can offer is my support. :)

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  24. So you medicate your Grandson. Good for you, if that's the way you want to cope with his behaviours. Have you tried to find out why he has negative behaviours or self abuse? Could it be that he is also in pain, or has an unknown illness? Imagine if you were sick and in pain and the only way you know how to let people know you are in pain is by your negative behaviours, self abuse, screaming and shouting or lashing out. Now rather than trying to find the cause of the negative behaviours, you medicate the child to treat the behaviours. The child is still sick but now is less able to communicate their pain or hurt.

    I have a 15 year old son who is learning disabled, non verbal and autistic. He has negative and self injurious behaviours, but we try and get to the root of his behaviours before sedating or medicating him. I am not anti medicate - but medicate for the right reasons.

    I also have two adult brothers who are severely learning disabled, autistic and non verbal. My oldest brother was medicated from the age of 10. The dose was increased continuously to control his behaviours. He was swapped on to different anti psychotics, and sometimes several anti psychotics at the same time. He was institutionalised for 17 years and during that time he was on double the recommended maximum dose of Thorazine, Thioridazine, Neulactil, Haloperidol, lithium, sodium valproate, you name it he was on it. He became so self injurious he was in restraints most of the time. The institution was closing as community care was the new thing. He moved out in to his own house with 2 carers looking after him 24/7. After 6 months he was medication free and living a happy fulfilling life. 15 years later, he still lives in his own house with 1 to 1 staffing. He is happier than he has ever been and still medication free. Treat the disorder, not the behaviour.

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