D&C 35:17 ". . . and in weakness have I blessed him."

Friday, April 4, 2014

Accused of Hating My Son

        “. . . Open your eyes! Not everyone is a bigot like you. I now just feel sorry for your son. I suggest you find another group with other mothers who are as hateful towards autism and their own children as you are. There are plenty of people like you, the world is full of hateful people.
        . . . It is blogs like yours that encourage negativity towards autism and autistics.
        . . . If you stopped hating your child that would change your reality.
        . . . You simply do not accept your son for who he is. I think it hurts because you feel sorry for yourself. . . I feel sorry for him, and I feel sorry that he has a mother with your attitude. If you don’t like being called a bigot and someone who hates their son, stop being that person.
        . . . Try caring a little more about your son, and a little less about your own feelings.
        . . . I can't stop you hating autism and your son. It is like trying to convince a member of the KKK to love black people."

        These comments were made in response to my blog post, I Hurt for Him. In this post I expressed the grief I feel for my son's losses. 
        Quickly this became my most popular blog post yet. I received many heart-warming expressions of love and empathy. Yet amidst all of this support I also received the hurtful comments above. 
        They were made by a mental health counselor and father of an autistic child who is the founder of a closed online support group for parents of autistic children. A site that promises to provide a safe environment for its members and aims to make the world of autism more positive by helping its members "sail" towards acceptance.
        The reason for this man's attack was that my expression of grief (I Hurt for Him) is perpetuating negativity towards autism.
        To be concerned about negativity is one thing, but to accuse a grieving mother of hating her child?
        That's too extreme. 
        Not just extreme, it's cruel and unfair. And does not make the world more positive.
        It's also NOT TRUE.
        Grief and hatred are not the same emotion. 
        I grieve for my son's losses because I LOVE him and want the best possible life for him. I'm still trying to figure out how that became an expression of hatred.
        Yes, grief may be a negative emotion, but the truth is we are all going to have negative feelings. Raising a disabled child is not a one-dimensional emotional experience. My relationship with my son spans the full emotional spectrum from my greatest joy to my deepest sorrow. There are times when I feel both joy and sadness at the same time.   
        Sometimes we have to go through the negative feelings in order to get to the more positive ones. Acceptance is achieved by first grieving for that which was losta journey we all take at different speeds.
        But even when we've arrived at acceptance I'm not convinced the pain of loss is ever fully resolved. Because there are still unexpected triggers that can take us back to feeling sad. Somewhere deep within our hearts we carry the memory of our loss. 
        You don't help grieving parents move towards increased positivity and acceptance by condemning their grief or calling it hateful.
        There is a better way.
        I know this because I’ve experienced it.
        Kindness and empathy have always been the hallmark of my interactions with fellow parents of the autistic community. I’ve received unexpected gestures of love and support from total strangers who’ve embraced me as one of the family.
        Kindness is what makes us strong as a community. And it is through kindness that we help lift each other towards increased positivity.
        When we choose to be vulnerable and share our pain with others we open ourselves up to receive the gifts of love, empathy and support as we connect with others.
        But we also take a risk when we share. Because not everyone will be respectful of our pain or even have the capacity to understand it.
        All the same I still believe it's a risk worth taking.
        Because I believe in the goodness and kindness of others.

"Why do we hesitate to share our pain? Do we build walls to protect our images rather than building bridges to reach out to one another?" 


  1. I just learned of your blog, went over to check out "I Hurt for Him" and now I'm back here again. I know all too well the pain you feel for him. My son is 10, and I feel like every so often I learn something new about my son, new things spring forth and I can't think of a single thing on earth that can be better. A few weeks ago they did activities in school where each child picked their favorite color and animal. I never knew his favorite color was yellow- I always assumed it was blue because he loved finding Nemo and would get near the screen when it was mostly blue. I always thought yellow was "his" color because he was my sunshine, after all. I never knew he liked dolphins- but evidence supported that this was his favorite animal. In time, we can learn more about them on the inside- but it seems there is no rhyme or reason as to when...its always when I least expect it. To me, my guy is the greatest- as I'm sure you feel about your son. I do very my mourn the fact he wont have a wife or a child, and I pray that his life goals don't include those things. They were important for me growing up, so I immediately assume everyone wants those things- but I hope he doesn't. I hope he wants a life where he can help in the home- whether its in my home or a group home (fingers crossed that that's even an option one day), I pray that he can dream of adventures he CAN accomplish. Looking at what he likes I try to shape that. He loves to watch me slice veggies so I ordered some kid friendly plastic knives and I'm going to teach him to do it properly so that its something he might be able to do one day. While I try to find all the good and search and study him for his likes and interests I still find myself thinking, "he'll never be able to...(fill in the blank.)" One day I passed a football field on the way to swim lessons and looked at my husband and said "he'll never play football." and my husband gave me that all-too-familiar knowing look. Its ok that we feel sad, its ok to mourn. We are the parents of the brilliantly wonderful children and we feel everything for them. I don't know who said that to you, but I have a hard time believing its anyone who truly understands this life. To think we should only see the good all the time is unrealistic. You grew that little human, you raised him, all while dreaming up the hopes and dreams that mothers do. You are an exceptional mother to love your child so deeply and no one should say otherwise.

  2. Yup to everything. and I loved re-reading the ensign article... sure has different meaning than it did before my kids were born. Sending hugs.

  3. My daughter was diagnosed with autism and we grieved. We had a child that spoke in sentences, was dancing and singing and riding her trike on May 4th - she went to bed on May 5th and woke up and was non verbal, she couldn't ride her trike, no more dancing or singing, she forgot she was potty trained, she stopped sleeping through the night and was severe ADHD. We had a child that walked at 10 months, at 16 months she was carrying on conversations with us. And then she was hitting, biting, screaming. Autism the doctors said. And we GRIEVED - oh we struggled to get her better, therapies and special school - we were not going to let autism win - but we still grieved the lose of the child we had. It'd take time and tests and repeated regressions before we'd find the genetic cause - Battens disease. Autism is just a label - there are many things that cause autism that are not good - a partial duplication/deletion of chromosome 16p11.2 - children with Rett syndrome often have autism as a diagnosis - Downs children - certainly Batten - Sanfilippo - Niemann Pick type C - chromosome duplication/deletion partial 15q - duplication/deletion 22q - Angelman children - Pitt Hopkins Children - the list goes on and on and on and on of disease states that cause autism. I bet every parent with a child with one of these hates the disease - I know we hate Battens - so why can't parents express hatred and grief over a disease that has robbed them of their child? To be accused of hating your child when it's the disease you hate is cruel. I'm sorry that happened to you.

  4. Thank you for your openness and honesty. Your transparency is what makes your blogs so helpful. We have lived with autism for 17 years and also experience the range of emotions. Please continue to share your story. You are making a difference.

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  6. I typed a response but it is gone now. Anyway, what I was saying is that it is hard to know who we can trust with our sensitive feelings sometimes. It is okay that someone else doesn't understand but it isn't okay for them to be mean about it. I know that I for one have even left a support group before because I felt like when I shared something I was sad about that my feelings were then made into a debate. Sometimes it means we have to stand off the tracks and other times it means we can fix it but I am much more careful anymore who I share with. You need to be able to share though because if you don't you will just bottle up so many feelings that someday you will explode. I haven't read all about it yet, but I know there are times I have had moments when I have also felt sad about what my son has to go through and even sad for me sometimes but that is a healthy thing called grieving. We move through those motions and hopefully get to acceptance and coping skills. Hang in there! I know this is not always easy. In fact, it is often something that can challenge a parent to their breaking point multiple times a day. The important thing is how you handle it and that you are do your personal best.

  7. Sometimes when people speculate, they don't have any clue as to what your path has been like, what your heart has and is feeling, or what your perspective is. I have had many moments where I have hurt with and for my son. I have also had moments of gratitude for what he has been able to teach me. I don't think there is anything inhumane about that. Sometimes when people don't understand, you just have to shrug them off and fix the pain you feel. Sometimes that means I have to stand off the tracks and in one case, I even removed myself from an autism support group because of the personal pain I felt at one time when a person there I felt was making my tender feelings over something very real to me into a debate. It is hard to know who is safe to share with sometimes. Sometimes we also give and give and give and don't take much because we want to also be a support to others. It's okay that they don't understand but it was not okay to be mean to you. Our therapist puts it this way....it's okay to be mad but not okay to be mean. I hope your heart will heal. :) I haven't read all about it but just reading the first part, I feel like I can say come here and let me give you a hug and a little support. Virtually I guess, since I can't do that any other way.

  8. Genie, anyone who has ever been with you and David would know that your love for him is boundless.. And not "to hurt" for him would be incredibly insensitive. Would a parent not hurt at times for a child with total loss of vision or hearing? A child confined to a wheel chair for life? And compared to our little David, they have it easy. David is so blessed to have you as his mother, Bob as his dad, and two precious sisters. We love and appreciate you so very much!