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Why do you post conversations?

I don’t prioritize full length blogs the way that I would love to, but I do post snippets and conversations of our life over at Facebook at all the time.

Why?

Because the internet is still filled with stories about how disability = unable, how “non-verbal” = nothing to say… One such story posted on HONY today, a story I tried to give the benefit of the doubt when a friend messaged me about it. Except that she was right, and I was wrong. We cannot give those stories the benefit of the doubt. We don’t have the privilege, not when the mainstream story is still that reading books and learning is a pipe dream for the majority of our kids.

I share these conversations because I want to show the world — and many parents — how much their child can do, right now, as their child is. We didn’t “uncover” Diva. She wasn’t “hidden inside”. She is just herself. She has multiple disabilities. She learns differently. She is impacted both by her disability and by the way society treats her. One of those things can be changed.

Diva has conversations with us using single words and telegraphic speech. She uses signs, body language, AAC, and vocalizations. Sometimes she goes all day only talking about Diego & The Wolf Pup Rescue. Sometimes we go a long time with her ignoring us and hanging out in her room. All of those conversations can — and should — be respected and valued just as much as any conversation with past tense and contractions. Her conversations are shared because you need to know that your child can do this too.

Little Man sees the world through a completely different lens than the neurotypical child. He struggles with the gray areas of thinking and problem-solving, but he also is creative. He struggles with abstraction and social norms, but he also has a big heart for friendship and kindness. He struggles to understand jokes, but he also loves to be silly as he recently told his aunt. None of these things are not mutually exclusive. His conversations are shared because you need to know your child can do this too.

I don’t want their lives to be inspiration porn. I don’t want people to read a conversation and think that Diva has “overcome”. Overcoming is crap. The only thing she has to overcome is this world’ stupid projections on her, and I don’t think that’s fair. I’d rather tear those projections down than force her to fight against them. My biggest hope for each of my children’s lives is simply that they will be seen and loved without feeling a need for pretense or hiding. Isn’t that what we want for every child?

The true story is that there is value in their way of thinking, being, and interacting in the world, without a need to become more neurotypical. In fact, I don’t want them to be more neurotypical. Their value is being who they are as they are, just as my value or yours is made. And so I write. I share the everyday moments of our lives. And I hope that every child with a disability will know the same things — that their voice is heard and that they are seen.

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On being real.

I follow a variety of blogs on Facebook, and my favorite – hands down – is Diary of a Mom. I don’t know a lot of family blogs that have that same combination of love, respect, and word-magic. Hers and Emma’s Hope Book are pretty much all I’ve got on my list right now. They keep me tuned into my center, my foundation for writing, which is always about respect.

Today, someone asked why she doesn’t post pictures or more detailed descriptions of Brooke’s hard times. They said that the world needs to know. There were lots of beautiful responses, including her own. They were all variations of how we can raise compassion and advocacy by showing humanity, but without disrespecting our kids so. Who among us would choose to have a picture of our worst day shining from a Facebook page? Who among us would choose to write about the times we screamed, the times we broke something, the times we just totally, completely blew it? We could. We don’t. We don’t share those moments on our Facebook statuses or even in most of our conversations with friends. We don’t even share our own, so why should we share these moments on behalf of our kids — often without their consent?

Obviously, I agree. I use pseudonyms and don’t post pictures of faces on the rare occasion that I even post one. While many close friends & family know this blog is “me”, I don’t want the wider world to know who or what we are talking about. If I wrote a book, I wouldn’t use my name there, either, for the same reason.

Yet, on the other hand, I struggle with how real my writings should be. I don’t know that it’s real to talk about all the celebratory moments only. I mean, I focus most of my attention and heart on all those moments of love & connection, so they do make up a huge amount of my Facebook posts. They are the moments that I want to capture, a love letter to my kids for them to later read and see the ways they shine. But they aren’t everything. So then what?

I don’t want to post videos of my darling Little Man mid-hallucination or while destroying property. First of all, who the frick has time to do that? The few times that I have had to for medical reasons, it only added to stress and mayhem of the moment. I have taken photos of the damage afterwards to show my mom, my best friend, or my support group, because I need to say, “Am I alone? Has this happened to you? What do you think? What do I do?” They don’t make it to my Facebook wall, my picture album, or the blog. It feels skeevy on every level, like taking a picture of my daughter on the toilet and posting it for wide consumption.

My writing, though — that’s where I struggle. It’s a struggle that I’ve had since I started this blog. How do I share the hard stuff without disrespecting LM or violating his privacy? How much do I share? The point of this blog, after all, is to humanize all of mental illness & disability, not just be another part of the inspiration-porn that often surrounds our kids. Reading real stories, stories from Far From the Tree, from January First, from other memoirs & families — they gave me hope in a way that no textbook or doctor had. They made me feel that I was not alone. They showed me that LM is not alone. They showed me that we can do this together, including keeping him at home. He will make friends, like him and not like him, just like we all do. He will have a life that is all his own, with his own unique celebrations and stumbling blocks. We will keep putting one foot in front of the other. I write because I didn’t want other families or people to feel so alone through the journey. I didn’t want to hide my child’s difficulties or have shame surround his hard times. It is what it is.

Still, I respect that this is his story (and her story!), not only mine or ours. I am a partner in this journey. I am an advocate. I am not him, though. I am not him. So I don’t know that I have an answer to this question. I think it’s a struggle that I face each and every time I write. I know I will make mistakes. I am sure there will be times when I haven’t shared enough, and there will be times when I share too much. I will change my thoughts on this, depending on what we are going through and where LM is in his life. I know I will anger people, both families and self-advocates. I will probably anger different people within the same blog post. More than anything, I seek to write in a way that is filled with love. If he can feel that love, then that’s what matters more than anything.

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Why do I write?

I have started and abandoned more blogs than I can possibly remember — on teaching, on yoga, on fat acceptance and life. Many of these had fewer entries than I have fingers before being abandoned and forgotten. I have had ideas for stories and books and essays that all seemed so clear at the time, but the words never even formed into sentence one.

Here I am, though, with a blog and a Facebook page. I started the first page of a memoir. I sometimes wonder if I write too much, or if there is meaning behind my words. I come back again and again, anyways, regardless of page insights or Google Analytics.

I have to.

It isn’t that I am important. It’s that they are. Not just Diva and Little Man, the loves of my life, but every child and person who is “different”. The world has pathologized difference, stigmatized mental illness, labeled kids as “unadoptable”, and attributed little skill or personality to disability.

I write because my children show me, all the time, how silly these stereotypes are. They shine with “can” and “will” and “you are wrong”.

I write so that other people can know the humanity, individuality, and sparkle of those we often forget.

I write because my children’s disabilities are part of who they are, something that can be erased no more than their humor or brown eyes. I write because “despite the autism” is not in my language.

I write for all the children who have been lost to the system and for families who don’t think they will make it through. I write because there is a possibility of light.

I write because days can be hard and overwhelming and painful and even scary — but that doesn’t mean that my children deserve less respect, less love, less understanding.

I write because we have forgotten what unconditional looks like, but my kids are teaching me everyday.

I write to go against the grain. I write to fight back against the stories of our day — disruptions, institutions, shame, hate, abuse. I write because I am disgusted when I hear these stories repeated, stories where children are blamed for family destruction and the world sympathizes with murder by parents. I write because it is not okay with me to stand idly by while the public continues to relegate those like my kids to the shadows.

I write for change. I write for hope. I write for humanity, equality, and love. I write because my children have the right to be seen.

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From denial to sadness to acceptance.

I read January First this week. It was so familiar, like a pair of clothes that I have been wearing for a year. The parts that horrify others are part of our normal, every day life. The holds, the screaming, the stares from strangers. Medication management, mood tracking, and frequent psychiatrist appointments. We have crisis lines to the local psychiatric hospitals posted on our refrigerator, and have the personal cell phone to our psychiatrist — just in case. It’s all part of our life.

Something about reading the book kicked me into acceptance. Until now, I had been alternating between denial and sadness. I hoped that this was “just” the trauma speaking, because Little Man has been through a lot of trauma. I hoped things would get better. Medications would be discontinued eventually. We would have happy holiday memories of decorating the house and trees. We would have touches of normality amidst the craze.

On other days, I felt very sad. I felt sad for Little Man, and sad for our family. I felt sad for the future that would not be. Little Man struggles significantly with mental illness. He is six years old, and has already spent 10 days for in-patient treatment at the local children’s psychiatric facility. He was released not because of stability or substantial improvements, but because his reactive attachment disorder and that he was starting to see his nurses as his family, undoing all the work of the past year. He now attends private school. He is the youngest child who has received private day school in our county, which is one of the 100 largest districts in the nation. He’s the youngest child in all four of the private day schools that we toured (likely covering 4-5 counties). He will never have “normal”. We will never have “normal”. We will lose friends and possibly family members. I already feel sad that I cannot really speak about Little Man’s challenges with the heartfelt honesty that would heal our hearts. Some people become scared. Some people tell us that if we tried this alternate therapy, if we tried this behavioral strategy, if we tried this diet, then everything would be okay. Some people minimize (because no one wants to think of a six year old having hallucinations or making death threats). Some people begin to see him as “other” and “less than”, which is my biggest fear and the largest reason that I don’t talk about much. We plan everything carefully, with escape routes. We learn to ignore the stares of strangers who likely believe that we are the cause of these meltdowns, that we should be “stricter”. We run into doctors who think the same. Stigma exists everywhere, and our lives are entwined with it.

Reading January First, I am starting to find acceptance, an acceptance still tinged with the blue edges of sadness. I don’t know that the sadness will ever go away. But — There are other children like Little Man. There are other families who face the same challenges, who spend much of their time working to create low-stress environments for their children. There are others who know the ache of loneliness and the fierce anger you feel at the unaccepting world. This helps ease the ache. Little Man will likely need medications forever. Little Man will never be “normal”, whatever the hell that means. I have no idea what Little Man’s future holds — high school graduation? College? Job? Relationships? I don’t know. I don’t know. I know that I love him, and will always love him. I can’t think about “what if” because the stories of adults with mental illness in this country can be so sad. (And it’s so not the adults’ fault. Our country sucks.) I live here, now, with him. I live in the moments of freeze tag, brushing back the hair from his forehead, or seeing his face light up when we hang our first twinkling lights in his room. And I live in the moments of screaming, of damage control, of crisis management and de-escalation strategies. I accept that we will always have to seek the moments of joy. We will never take them for granted.

In that way, there are gifts. There are gifts to seeing the fragility of happiness and life itself. There is a tiredness, but there is also a presence. We are here, with him, now. If we leave this moment, he will find ways to bring us back, rapidly. There is the gift of knowing him, which I would not take back, even if it meant that my life was calmer or quieter. There is the gift of connection and hope in finding other families who fight. I never realized how awful the stigma towards mental illness is in our country. I never realized how it affects every inch of someone’s life. We don’t talk about mental illness. We don’t talk about living with mental illness. At best, we watch it on reality TV and feel grateful that it doesn’t affect our lives. We judge, we shake our heads, and we go back to the comfort of our quiet lives and laughter. I don’t have that anymore. I don’t have the “blessing” of ignorance, and that is the biggest gift that I’ve been given.

January First also reminded me why I blog. It’s not to share tips and strategies. You can pick up any book with those. It’s to share life. It’s to share our life. I write to bring humanity back to mental illness. I write to lift the veils on others’ eyes. I write because this world will only be healed when we accept all shades of the rainbow, the stormy and the calm, the wild and the withdrawn. I will keep writing; I will keep fighting.

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Why am I blogging?

Things are going to be real on this blog. I’m going to talk about my real kids with real stories — the joys, the challenges — and I’m going to talk about my life. I’m putting a lot of stuff out there, standing in the field of vulnerability. I’m linking this blog to my Facebook, and people will know this is me. Why do it? Why have the commitment to writing several times per week? Why share the intimate details of our lives?

Because this world sucks for my kids.

I wish I could write in a more poetic way, in a way that didn’t sound so crass, but it’s simply true. We live in a world that does not accept either of my children, much less celebrate them. We live in a world where people don’t ask about mental illness, where people become afraid of someone with mental illness, where people ignore mental illness. We live in a world where my daughter is seen as incompetent and incapable, not even worth thorough evaluations. We live in a world where the parents of children like mine feel lonely. They feel isolated and abandoned, by friends and family members alike.

This is not okay.

We have to talk about it. We have to talk about the reality of these children, these families, these lives — the beautiful reality, with the rough edges and cracks that come with every life. I write so that other children will have their beauty recognized. I write so other families will not feel so desperately alone. I write because there’s not enough out there to help us figure out what’s going on and what to do; we have to create the resources ourselves. I write because every family deserves to have those family moments. I write because every kid deserves to be seen. I write because the world needs to change.