New Diagnosis, New Beginning

A lot has been going on behind the scenes here at Mothers on the Frontline. We have been busy doing interviews, working with our amazing team of Grinnell College Student Workers to prepare our first Podcast Series “Just Ask Mom”, learning about the creation and accessibility of websites, and so many other things completely new to us. So while we have been quiet  during March and April, we have been here, busy preparing for May: Children’s Mental Health Awareness Month (more on that in a later post).

In some ways our journey to Mothers on the Frontline is very much like the process of becoming a special needs parent. There is a steep learning curve and many different moving pieces that somehow now you have to find time and energy to navigate, while still having to steer your ship through the pathways of running a home and family, being an employee, and all the other obligations we all must meet. It is overwhelming, but at the same time exciting. For years now a vague idea and sense of unmet need has been part of our conversations – those between Dionne and I. It is not completely unlike that strange pre-diagnosis experience, when symptoms and challenges are appearing in your child and you know you need to do something, but what is so unclear and there seems to be no source of reliable guidance or sure answers. But all of sudden (or so it seems, though it was years in the making) you get a diagnosis and things change. No, not the child. The child is the same, their needs are the same. But with a diagnosis comes a ray of hope that you will be able to figure out what to do now. That you will finally find your “people”- other care givers on the same journey that can recommend service providers, school accommodations, and most importantly, help you reimagine your role as care-giver. No child comes with directions, but when your child has special needs, particularly those that involve social, mental, or intellectual development, those that involve regulation of mood or extreme anxiety, hearing voices, or wanting to die, well, it is even more confusing how to best meet your child’s needs. Interestingly, as we talk to other parents and reflect on our own experiences, the most important thing is re-conceptualizing our role as parents.  Changing our attitudes and instincts. Learning to look at behaviors through new eyes, not as things to modify, but as indicators of what our child needs and the realization that when those needs are met things start to change for the better. What use to be tantrums became meltdowns. My previous unsuccessful attempts to double-down on consequences gave way to understanding that painful sensory stimuli (or lack of it) needed to be addressed before my son could stop screaming, hitting, etc. I learned that while a time-out or lecture only intensified and lengthened the “behavior”, he quickly became calm after wrapping him tightly in a soft blanket and applying pressure, giving him fidgets to squeeze, or simply allowing him to vent all of the bad thoughts he needed to get out without consequence. It not only involves creativity, but a raw honesty about what I am uniquely situated to provide my child, and what needs he has that I am unable to meet. This is key, because we realize that to help our child we have to become part of a team, a team of providers, educators, community members, etc.

I do not mean to minimize the  journey to diagnosis by comparing it to where we are at this point in our project. I only wish to bring you into our journey, to share that we are in the process of re-conceptualizing our roles as academic-mother-advocates. We finally feel able to articulate the problem with which we were struggling – the lack of public understanding and therefore lack of political will to address the children’s mental health crisis. And with that diagnosis, we are now ready to enter into a team effort with the community, with you, to re-conceptualize so many issues in our society, from youth substance abuse, incarceration, homelessness, and school violence. Our recommended treatment: stories. Wrap our community in stories that warmly and gently increases the pressure so as to help us as a society move beyond anger to understanding and effective action. What better storytellers to begin with than the Mothering?

So we thank you for your patience. Just as parents of a newly diagnosed child learn new vocabularies, skill sets, and how to bridge communities for the wellbeing of their child, we are learning new vocabularies, skill sets and hoping to bridge communities for the wellbeing of our shared society. We hope to be a bridge between caregivers, consumers, advocates, activists, and academics. We hope to build this community around stories. We begin with personal stories of mothering, because that is where we find ourselves.

No, wrapping my son tightly in a warm blanket did not make everything better. But it was a start. Stories in themselves will not be enough. But it is a beginning of re-conceptualizing problems so that we can become more helpful, more compassionate, and in the end, more effective in making things better for us all.

One Reply to “New Diagnosis, New Beginning”

Leave a Reply