There's a battle going on

There’s a battle going on in the special needs community. 

I first became aware of it when I followed a link a mother had posted on facebook to Lauren Swick’s article in the Washington Post. In the article, entitled Writing for the Mighty, for my son and with my son, she talks about the debate happening in this particular part of the community.

The Mighty is a sight whose motto is “Real People. Real Stories. We face disability, disease and mental illness together.” It’s a fairly new site and its articles range from contributions from parents of special needs kids, to people suffering from mental illness, to anyone with a story to tell that might shed light on what it’s like to live this life.

I myself have contributed a number of stories to The Mighty. 

An article was published by a mother who had autism about her child who also had autism called “Meltdown Bingo”. I personally never read the piece as there was a strong backlash to it and The Mighty took it down. 

Since that article there has been a divide within The Mighty community between “Mommy bloggers” – those people who are blogging about their experience as the parent to a special needs child, and those who have said as parents we don’t necessarily have the right to be telling these stories. Phrases like “inspiration porn”, “mommy martyrs” and “pity party writing” were thrown around within the community. 

This group within the special needs community were angry, and referred back to a common idea within the community of “nothing about us without us”. They wanted their stories to be theirs, not the ownership of their parents, or whoever else deems it appropriate to talk about.

I have very very mixed feelings on this. On the one hand. YES! Of course. The special needs community, disabled community, mental health community, should have its own voice, it’s own speakers who speak from within it. Those stories should be theirs to share or keep private as they please. 

I think it’s incredibly important to ensure that. Within that I don’t think all the voices will agree, but that’s ok. It’s important to have debate and discussion from within a community. 

But, I also come from this as the mother to Eva, a baby who never got a chance to tell her story. A girl who may never have been able to, even if she had lived. 

Just because she couldn’t tell her story, does it mean she didn’t have a story worth telling? I feel as if I tell that story for her . I have tried to tell it as honestly as I can, and sometimes that reflects badly on me, because I’ve shown my own progress in acknowledging who she was and coming to terms with the life we would live. If Eva were to have been able to read my writing when she grew up, she would have seen her mother struggled, a huge amount, but that love won out. It didn’t reflect badly on Eva, if anything it showed her that her mother was flawed, and lived in a society that made it hard to be the parent of a special kid, but I think I would have been happy with her reading what I felt and did in those times. I’ve not tried to keep it a secret. 

I also come at this debate from a place where I couldn’t find the kind of story I’m writing as a parent of a special kid. I felt alone and isolated and I didn’t think I could do it. While of course, Eva’s story is her own, I also have a story here. Being a parent to a special needs kid is no joke. In those days, weeks and months of diagnosis, you have to come to terms with your life being completely different from how you expected or planned. And while I came very much to terms with Eva and loved her for all I was worth, I still knew her disabilities were going to provide challenges for both her and me. 

That side of our lives is what daunted me when she was first diagnosed. We can emphasise the need for voices within the special needs community. And I agree that those voices should be the loudest. But if we silence the parents, we are making a difficult journey even more difficult. Some of these parents will be their child’s care giver for the rest of their lives. For every special kid who excels and can live independently and tell their story, there are many others who rely on their parents as an infant would, for their whole lives. Who tells that story if the parents don’t?

It’s one thing for an adult with special needs who can write and read and take part in the world in a way we think of as typical to be able to tell their story, but what about those kids who grow up but are not able to tell that story? Is there story not worth telling because they don’t have the means or the ability? As a parent to that child, adolescent, adult, shouldn’t we feel able to share their life with the world?

This community, like any community, is diverse. There are parents who are facing extreme challenges every day. Are we saying that because they themselves are not the one with special needs that they cannot have a voice in this? Are we saying that we all have to fit under one voice? 

Are we telling those mothers that they must fight every day to be their child’s advocate in hospitals and education, but they aren’t allowed to share how that struggle feels to the wider world?

These stories we tell aren’t just “pity porn”, they help to let people with no experience in this world see what a day in our life looks like. As a parent of a special kid, we want our children to be accepted and loved as we love them. We want the world to be able to see them for who they are instead of their disability. Keeping quiet about our challenges doesn’t aid that cause. It hurts it. If we force special needs parents to stop talking about their experience we isolate them further by making their experience so unknown and alien to a typical family. 

I agree that as parents we need to be aware of our children as people. They are not just an extension of us. This extends far beyond the special needs parenting world and into the simple mommy blog world. We are sharing our children’s lives. We need to be aware of what we say. We need to think this through. These are people with futures to live independent of us. We need to think of that life and what they would want shared. 

But by the same respect, these parents are people too. Their story matters. Their experiences matter. And while they might not be the one dealing with the disability first hand, you can bet they have the scars to prove they have battled for that person. Those stories are worth sharing. 

Until we live in a world where special needs parenting is not something that most typical parents see and say, “I couldn’t do what you are doing,” then we need to tell these stories. Because these parents are doing everyday what others think of as a nightmare toil, and those stories need to be told. To deny it’s hard does no one any good. It stops being hard, when society backs up these parents with the support they need. Until that day, there will be stories of challenges and success that need to be shared. 

29 thoughts on “There's a battle going on

  1. Gwen

    Thank you so much for writing this post.

    About a month ago I came across a blog written by someone who labels herself as a nonverbal adult with autism…who was very much against parents of children with special needs sharing anything about their lives.

    I can understand parents of kids with extra needs who do not want to share, the same way I can understand friends of mine who parents of neuro-typical children who do not post their images to social media. That is their call as a parent.

    The blog post really made me stop and think if I was oversharing my daughter’s life on my blog. Made me second guess myself as a mother. I posted to my Facebook wall linking to the post and saying I blog to share Vivian’s story with other parents who have children just diagnosed with the same diagnosis as my daughter. I wish I had found similar stories when we first got her diagnosis because that first week in NICU, I honestly didn’t think I could be the mom that she needed. I was so afraid, and felt so small. And not at all where I thought my motherhood journey was going to start. I wondered if it was a mistake that she had been ressucitated – would it have been better for her not to have made it? Her life would be so hard. These are thoughts no parent ever wants to admit they had. I was naive, and ignorant. I am so glad I realized that none of her difficulties would ever stand in the way of loving her.

    I also said in my post I believe my daughter would understand when she is older (if she could) – that I share her story, my story as her mom, and our story as a family to help others going down a similar path. I don’t think she’d actually mind at all, if she understands when she is older. I think she’d be proud to have helped others.

    The overwhelming response I got from friends and family is that they appreciate us sharing our story because otherwise they would honestly not understand the day to day goings on in our world, or the fears we face as Vivian’s parents. They also wouldn’t understand why something so small that our daughter has achieved means so much.

    For you to come to the same conclusion makes me feel validated. I was afraid to post my thoughts to my blog Facebook page for fear of backlash. But you saying this makes me think I should as well. Thank you.

    1. Oneinamillion Post author

      It’s really hard. I agree.
      I understand that woman who has autism and who wrote that blog. I get it. But she does not speak for all of the special needs community. Just as I don’t. She can express herself, even if not verbally. So many people cannot.
      Eva didn’t have a voice. She may have later, but she may not have. I don’t want her story to just disappear because she had no way to share it.
      And like you say, it gives people who are in a similar situation some kind of familiarity in a world that is so unfamiliar.
      And for our family and friends it lets them know something about our challenges and our successes.

  2. Gwen

    Thank you so much for writing this post.

    About a month ago I came across a blog written by someone who labels herself as a nonverbal adult with autism…who was very much against parents of children with special needs sharing anything about their lives.

    I can understand parents of kids with extra needs who do not want to share, the same way I can understand friends of mine who parents of neuro-typical children who do not post their images to social media. That is their call as a parent.

    The blog post really made me stop and think if I was oversharing my daughter’s life on my blog. Made me second guess myself as a mother. I posted to my Facebook wall linking to the post and saying I blog to share Vivian’s story with other parents who have children just diagnosed with the same diagnosis as my daughter. I wish I had found similar stories when we first got her diagnosis because that first week in NICU, I honestly didn’t think I could be the mom that she needed. I was so afraid, and felt so small. And not at all where I thought my motherhood journey was going to start. I wondered if it was a mistake that she had been ressucitated – would it have been better for her not to have made it? Her life would be so hard. These are thoughts no parent ever wants to admit they had. I was naive, and ignorant. I am so glad I realized that none of her difficulties would ever stand in the way of loving her.

    I also said in my post I believe my daughter would understand when she is older (if she could) – that I share her story, my story as her mom, and our story as a family to help others going down a similar path. I don’t think she’d actually mind at all, if she understands when she is older. I think she’d be proud to have helped others.

    The overwhelming response I got from friends and family is that they appreciate us sharing our story because otherwise they would honestly not understand the day to day goings on in our world, or the fears we face as Vivian’s parents. They also wouldn’t understand why something so small that our daughter has achieved means so much.

    For you to come to the same conclusion makes me feel validated. I was afraid to post my thoughts to my blog Facebook page for fear of backlash. But you saying this makes me think I should as well. Thank you.

    1. Oneinamillion Post author

      It’s really hard. I agree.
      I understand that woman who has autism and who wrote that blog. I get it. But she does not speak for all of the special needs community. Just as I don’t. She can express herself, even if not verbally. So many people cannot.
      Eva didn’t have a voice. She may have later, but she may not have. I don’t want her story to just disappear because she had no way to share it.
      And like you say, it gives people who are in a similar situation some kind of familiarity in a world that is so unfamiliar.
      And for our family and friends it lets them know something about our challenges and our successes.

  3. Deborah the Closet Monster

    Hear, hear.

    I have a million things I want to say to this, but I can’t quite find the words for any. I’ll simply say instead that forcing others to alone endure hardships–no matter how lovingly they do so–alienates and isolates them. That makes a hard journey even harder. It also deprives them of the opportunity to connect with others who need to know they’re not alone in the kinds of experiences they’re having.

    Earlier this week I thought how amazing it is that we can google just about any practical thing (“how to change your car’s front light,” “how to make nine-layer vegan lasagna,” etc.). I was so overwhelmed with gratitude for the people who write those articles and post those videos. I wished I had some practical thing I could write articles about in this beautiful realm of knowledge sharing and mutually increased wisdom. I decided that my blog is how I do my part; it’s not a collection of specific, bulleted how-tos, but I think some pieces might occasionally help point someone the right direction. I have certainly been pointed the right direction by others.

    I believe we benefit collectively by honestly sharing our experiences, when we feel it’s appropriate, even when those experiences center on someone else. There’s no telling who will be helped by the plain fact of their there-ness, which is way better, IMO, than withholding the story and denying someone desperately in need of community the strength derived from such community.

    1. Oneinamillion Post author

      Thank-you, yes I totally agree. Forcing people to endure hardships, and lets face it, most of us consider finding out our child has life changing disabilities, a hardship, alone, is making a hard situation harder.

  4. Deborah the Closet Monster

    Hear, hear.

    I have a million things I want to say to this, but I can’t quite find the words for any. I’ll simply say instead that forcing others to alone endure hardships–no matter how lovingly they do so–alienates and isolates them. That makes a hard journey even harder. It also deprives them of the opportunity to connect with others who need to know they’re not alone in the kinds of experiences they’re having.

    Earlier this week I thought how amazing it is that we can google just about any practical thing (“how to change your car’s front light,” “how to make nine-layer vegan lasagna,” etc.). I was so overwhelmed with gratitude for the people who write those articles and post those videos. I wished I had some practical thing I could write articles about in this beautiful realm of knowledge sharing and mutually increased wisdom. I decided that my blog is how I do my part; it’s not a collection of specific, bulleted how-tos, but I think some pieces might occasionally help point someone the right direction. I have certainly been pointed the right direction by others.

    I believe we benefit collectively by honestly sharing our experiences, when we feel it’s appropriate, even when those experiences center on someone else. There’s no telling who will be helped by the plain fact of their there-ness, which is way better, IMO, than withholding the story and denying someone desperately in need of community the strength derived from such community.

  5. mrsstaceydodd

    Reblogged this on Minding Thomas and commented:
    So glad that someone found the right words for this topic. I have always felt unsure about how and what I share about my son. Every journey is indeed unique and different. On that note, our journeys share similarities too and to be able to find just one parent going through something similar is finding the light amongst the dark.

  6. mrsstaceydodd

    Reblogged this on Minding Thomas and commented:
    So glad that someone found the right words for this topic. I have always felt unsure about how and what I share about my son. Every journey is indeed unique and different. On that note, our journeys share similarities too and to be able to find just one parent going through something similar is finding the light amongst the dark.

  7. Kera

    Sharing this on my chest page, the special reds. With 3 very unique children I can say I didn’t feel alone once I opened up about my story-i was free and found support from people I never would have otherwise. I’m also a mighty contributor. Thanks for writing this.

  8. amandajkelly

    I haven’t read too many of these articles and opinions, but it has made me stop and think just hearing about the topic ancillarily. I think you made the points I had been looking for:

    “It’s one thing for an adult with special needs who can write and read and take part in the world in a way we think of as typical to be able to tell their story, but what about those kids who grow up but are not able to tell that story?”

    “Are we telling those mothers that they must fight every day to be their child’s advocate in hospitals and education, but they aren’t allowed to share how that struggle feels to the wider world?”

    “Are we saying that because they themselves are not the one with special needs that they cannot have a voice in this?”

    I write first and foremost for myself. Probably to my writing’s disservice, I don’t think much about audience as I write; I know it’s much more livejournal than modern blogging. But I think this fact in itself speaks volumes: I am writing *my* story which happens to involve my daughter, who is someone who most likely will not grow up to be able to communicate our story herself. So I don’t feel like I’m speaking for her and I *do* feel like I’m sharing bits and pieces that may be relevant to another parent or another family, even another child who can themself access my writing. I’m grateful that these opinions have surfaced to give me pause and to help me reflect, but in the end I do think parent-as-writer is a valid medium, with those cautions honestly acknowledged.

  9. amandajkelly

    I haven’t read too many of these articles and opinions, but it has made me stop and think just hearing about the topic ancillarily. I think you made the points I had been looking for:

    “It’s one thing for an adult with special needs who can write and read and take part in the world in a way we think of as typical to be able to tell their story, but what about those kids who grow up but are not able to tell that story?”

    “Are we telling those mothers that they must fight every day to be their child’s advocate in hospitals and education, but they aren’t allowed to share how that struggle feels to the wider world?”

    “Are we saying that because they themselves are not the one with special needs that they cannot have a voice in this?”

    I write first and foremost for myself. Probably to my writing’s disservice, I don’t think much about audience as I write; I know it’s much more livejournal than modern blogging. But I think this fact in itself speaks volumes: I am writing *my* story which happens to involve my daughter, who is someone who most likely will not grow up to be able to communicate our story herself. So I don’t feel like I’m speaking for her and I *do* feel like I’m sharing bits and pieces that may be relevant to another parent or another family, even another child who can themself access my writing. I’m grateful that these opinions have surfaced to give me pause and to help me reflect, but in the end I do think parent-as-writer is a valid medium, with those cautions honestly acknowledged.

  10. Alix Bowman

    Bravo, mama, bravo. Everything you said, and this, too — as women we are forever being trained to sacrifice ourselves for others, especially for our children. We are humans with lives of our own, and being a human responsible for another human who happens to have special needs, happens to be really hard. Everyone has a story, and no one’s story stands alone. As long as you tell your own side from a place of honesty and love, you can’t be in the wrong for telling it.

  11. Alix Bowman

    Bravo, mama, bravo. Everything you said, and this, too — as women we are forever being trained to sacrifice ourselves for others, especially for our children. We are humans with lives of our own, and being a human responsible for another human who happens to have special needs, happens to be really hard. Everyone has a story, and no one’s story stands alone. As long as you tell your own side from a place of honesty and love, you can’t be in the wrong for telling it.

  12. Maria

    I blog and I have had many people write to me saying that they are grateful that I have shared my story – reading mine has helped them cope with theirs. I also read other people’s blogs and I have many times written to those authors thanking them for sharing because reading about their stories has helped me cope with mine.

    It’s about balance, and in each case it’s different. Yes, a child has a right to their story, but so does a parent. It’s all interlinked anyway.

  13. Maria

    I blog and I have had many people write to me saying that they are grateful that I have shared my story – reading mine has helped them cope with theirs. I also read other people’s blogs and I have many times written to those authors thanking them for sharing because reading about their stories has helped me cope with mine.

    It’s about balance, and in each case it’s different. Yes, a child has a right to their story, but so does a parent. It’s all interlinked anyway.

  14. kandylandmom

    You took the words right out of my mouth. Will my son or daughter some day be able to tell their own story? Maybe. Maybe not. My kids live with such a rare disease that the numbers themselves lead to isolation in our small community of families. That is why I tell my story. Because nobody else IS telling it. One family put out a documentary about the miracle of the drug they now take that has changed the treatment of this rare disease. But they don’t tell the whole story about the rest of what we have to deal with every day. Yes. The drug is a miracle treatment. But it is not a cure. It does not fix everything in their brains. And as long as I have to deal with that on a daily basis, I will continue to tell that story so that other families don’t have to go into this blindsided by the unknown.

  15. WriterInAWheelchair

    I’m an adult with a disability and I blog. I’m really in two minds about blogging by parents of disabled children. I’ve read quite a few, some by parents of kids with the same condition, some not. And for the most part I think they get it right – sometimes there’s overshare and occasionally it makes me very uncomfortable. Personally I think if you’re going to blog about your disabled kid you should make sure they aren’t identifiable, no names, no names of hospitals or schools or medics caring from them.

    The biggest issue for me about parents speaking up about their child’s disability is what I guess you could call ownership – it’s sadly too common for parents to ask for suggestions or advice or whatever and then when a disabled adult says “well when I was that age I did X” or “Y worked well for that symptom” or “What about trying Z?” they get told they’re wrong and that’s not what they experienced. Or I’ll post a piece about something which to me was very positive (maybe I’m excitied about my shiny new wheelchair or something) and parents link to it or comment that they hope their child’s life doesn’t come to a point where they’re excited about a wheelchair. Of course parents have a place in blogging but so do the adults living it (and the kids who will one day become those adults)

    1. Oneinamillion Post author

      Thanks so much for your comment. I see so much truth in what you said. And I can understand the thought process around not identifying your child. Initially I didn’t identify Eva on my blog. I called her The Peanut to protect her name. But then I was accused of dehumanising her by not calling her by her real name. So I felt fairly conflicted on that one!
      I am so sorry you’ve had that reaction about things like posting about a new wheelchair. I know every parent is different, but I totally shared your enthusiasm when we got a new piece of equipment for Eva. Particularly the new chair we got just before Eva died. I was thrilled about it because it gave her the ability to experience the world in a new way, instead of lying down all the time.
      Thank you again for your comment and your perspective. I completely agree that we need more voices of the people in those situations too.

  16. WriterInAWheelchair

    I’m an adult with a disability and I blog. I’m really in two minds about blogging by parents of disabled children. I’ve read quite a few, some by parents of kids with the same condition, some not. And for the most part I think they get it right – sometimes there’s overshare and occasionally it makes me very uncomfortable. Personally I think if you’re going to blog about your disabled kid you should make sure they aren’t identifiable, no names, no names of hospitals or schools or medics caring from them.

    The biggest issue for me about parents speaking up about their child’s disability is what I guess you could call ownership – it’s sadly too common for parents to ask for suggestions or advice or whatever and then when a disabled adult says “well when I was that age I did X” or “Y worked well for that symptom” or “What about trying Z?” they get told they’re wrong and that’s not what they experienced. Or I’ll post a piece about something which to me was very positive (maybe I’m excitied about my shiny new wheelchair or something) and parents link to it or comment that they hope their child’s life doesn’t come to a point where they’re excited about a wheelchair. Of course parents have a place in blogging but so do the adults living it (and the kids who will one day become those adults)

    1. Oneinamillion Post author

      Thanks so much for your comment. I see so much truth in what you said. And I can understand the thought process around not identifying your child. Initially I didn’t identify Eva on my blog. I called her The Peanut to protect her name. But then I was accused of dehumanising her by not calling her by her real name. So I felt fairly conflicted on that one!
      I am so sorry you’ve had that reaction about things like posting about a new wheelchair. I know every parent is different, but I totally shared your enthusiasm when we got a new piece of equipment for Eva. Particularly the new chair we got just before Eva died. I was thrilled about it because it gave her the ability to experience the world in a new way, instead of lying down all the time.
      Thank you again for your comment and your perspective. I completely agree that we need more voices of the people in those situations too.

  17. Nikki

    It is only through sharing details that I have found other parents who have children with the same condition. Their support and input is invaluable in getting through the day. Being in contact with others in the same position also give the opportunity to be made aware of treatments, clinical trials, aids and adaptations that are needed etc. No one understands like another special needs parent.

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