Building a space for the hard

creating another community within a community

Photo by Brett Jordan on Unsplash

As I sit here staring at this Dollar Store journal with “Big Ideas” printed on the front I think, “I need sleep to have big ideas, right.” I am operating on 2 hours of non-consecutive sleep. This last year has been a sleepless one. For myself, and my family. And I am not sure that I can share the extent of the issue because it could fracture the trust and do irreparable harm to the community I built online. But I am struggling.

The Autism community is fractured because its members don’t give the concept of community the respect it deserves. They do not recognize the beauty of our differences, the power in our unity, nor the fact that this diagnosis exists on a spectrum resulting in a variety of experiences. All of which are valid. All of which should be treated with care.

I am doing the best I can to honor not only my story but that of my family’s. I believe I do a superb job in this area, but what I don’t share of our struggles, I suffer for in my silence. This isn’t about actively cutting open our wounds to show that we bleed. Putting our scars on display for the world. It’s about not providing the most accurate picture of who we are in this diagnosis because of the fear of how we would be perceived if we dared to admit that…

this shit can be hard.

In choosing to craft a space that is welcoming, accepting, and loving of all that we are and knowing that we are all capable, competent beings I am afraid that in the process I set myself up to not share the times in which our family struggles in ways that often feel too big for us to handle. Most of my social media “breaks” aren’t because I need the space from overwhelming pressures of the internet, it’s because someone or a few someones in my family is not doing well and our energy is off because of it. I am sitting in these online spaces, almost envious of the accounts that allow themselves to put everything out there about all that their families face. And the only reason I don’t launch into jealousy is because they reveal far more than I am willing to do. That keeps me from doing what they do. But I am afraid while the decision is the appropriate one for our family, it has done a number on my mental and emotional state because I am alone in our struggles and have no community to share these hard and uncomfortable truths with.

I sit at the intersection of mother and Autistic. A peculiar place to be. It isn’t often that I find myself firm in what side I should lean more into. And I am not just a parent to an Autistic child. I am the parent to a child that many would consider “severe,” or “profound.” I don’t find myself in the circles that toss around labels of function that much, but I would be lying if I said I didn’t understand their frustration with the sizable portion of the online space being largely unaware or dismissive of the difficulties families like ours face. They respond to it in a way that I don’t think I ever will. And I do not agree with a lot of what they say and do. But I am aware of what their lives look like and aware of why they respond the way they do.

It is hard.

And during this last little social media break, I found myself thinking that I built a space that boxed me in. One that suffocates me. One that won’t allow me to breathe. Because I am scared to share how hard life is for us right now. And one shouldn’t feel that way in community. What’s wild is I don’t think it’s the fault of my audience. I feel as though they would understand where I am coming from. I feel they would get it.

I am exhausted thinking about the mental gymnastics I would have to perform to talk about what we are facing in a way that doesn’t put myself, or my family on front street. This delicate telling of a story that I share with those I love the most. I don’t have the spoons for it. There’s no energy left. And the space I created won’t allow me to.

Therefore, I sit in silence. Only revealing to a select few of the issues that we face. Largely, I feel alone. I want to cry but feel that if I do so will trigger some medical event. Or doing so will mean that I am crying over who we are and I just can’t bring myself to do that. I am struggling with the feeling that I have not done enough for myself or my family. That I have gotten so wrapped up in helping others that I have neglected us these last few years. I don’t even know where to begin to repair us.

But I am going to try. This newsletter is the beginning of our healing. The start of a new journey. I needed to purge this from my mind. And in doing so made me realize that I lack the support system needed to get me through this. I have to first build one of those. I have a few friends that know of the challenges we face. But I don’t let them in all the way. I am making a commitment to do that from now on.

But I am also on a mission to create a safe space for those of us who are struggling but want a way to commune with one another for support, guidance, and help that doesn’t involve making our children or our Autism (for those of us who are Autistic) the source of our pain and suffering. We have to have a way to talk with each other, help each other, that doesn’t look like martyrdom, or anything you would get from organizations such as the National Council of Severe Autism.

I don’t know what that support space would look like exactly but I want it to be a space that will address something. I don’t want it to be a place where we just vent with no guidance. I want to focus on specific things, like communication. Much of the challenges that our family faces is with communication. I want a space that will help each other accomplish this goal for our loved ones. A space where we offer advice and support. We can talk about the hard stuff, but we have solutions for each other. Or at the very least a supportive shoulder.

And then I would have other safe spaces for other challenges that our families have.

I don’t know what platform it would be on.

I think that those like NCSA have the right idea in having a space that will address the specific needs of a unique population within a population, but I don’t believe that they talk about Autism in a way that centers around the humanity of an individual. I don’t know that they believe in the competence of those they would label “profound.” And I don’t want to surround myself with people who feel as though their children are a burden, lost causes, and a drain of our energy and resources. I want to surround myself with people who recognize that our families live lives that are unique from others that require unique and specialized approaches that value the individual, that sees them in their personhood, and provides the safety, protection, love, compassion, and care of a community that will work like hell to provide solutions that help the individual and the family.

Right now, I’m just…sharing.

Right now, I’m just…planning.

And right now, I am going to try to get a little bit of sleep.