A Blog Begins
Adjacent No. 1 - Atypical Adventures in Living Well
Dear Reader,
The blog that follows includes my mindful musings on caring for my young son with autism, while trying to carve out a meaningful life of my own. I will talk about my funny, beautiful, quirky, and joyful son Teddy, but this blog is going to focus centrally on my own life and struggles. Some may quickly point out that this could be viewed as selfish; however, I contest that if I can play my adjacent role more strongly, that I will be able to support, love, and provide for Teddy more fully and deeply.
When I did a simple internet search for the word “adjacent,” the AI definition that arose is: “next to or adjoining something else; angles having a common vertex or side.”1 This term seemed just right to me. My life will forever be adjoined to Teddy’s, and both of our lives have been transformed by his autism. I believe that my role, and the role of all significant loved ones living with and caring for someone with autism, deserves its own title, which I have decided to call adjacent.
One of the things I noticed right after Teddy was initially diagnosed, is that there is an overwhelming amount of information about how to raise a child with autism. I want to emphasize that this is a gift in many ways. We have much more evidence-based information about how to help kids with autism than a generation ago, and consequently more hope for autistic children to grow into healthy and happy adults. Yet, none of the books in the thunderous stack that I was first given, included anything about how to keep my own mental health, health, work, life, marriage, friendships, and community intact while raising Teddy. I have since thankfully discovered a few books that have some basic information on these topics, the most helpful one to date being Autism in the Family by Robert Naseef 2, but there are not enough resources like this.
Given my professional background, people usually think that living well, and having quality mental health, comes easily to me. However, this is far from the truth. My years of training and practice as a clinical social worker, mental health therapist, and yoga and breathwork nerd have only allowed me, at best, to function optimally about five days out of every seven. I would like to note that this optimal functioning ratio shifts from week to week, and sometimes hour to hour; it is a moving target in which I am unceasingly working to increase the proportion of living good days to bad ones.
After my son was born six years ago, I would have said I was doing well less than one out of every seven days. I hesitate to think how many weeks went by when I was doing well zero days out of the week. This happened more often than I would like to admit. My own mental health was much worse after Teddy was born. Previously underlying and unprocessed issues resurfaced in those long sleepless nights. I have a highly sensitive nervous system, a chronic but managed anxiety disorder, overlayed with one episode of PTSD after I thought I was going to die during the c-section in which Teddy was born. I admittedly was not close to actually dying during surgery, but I felt the nervous hustle of a medical team calling rapid codes to stop my hemorrhaging blood, in a hospital where I had been on staff and had witnessed the actual deaths of more people than I can remember. Having the tables turned on me, and wondering if I too would meet the same fate, terrified me to my core. I wondered whether I would ever sleep and function normally again, let alone be able to parent from a place of strength.
If that was not enough, I found myself re-evaluating old family of origin issues, which many people do when they have children, only to realize that my relationships with my own parents and siblings were in worse shape than I had thought. As I figured out how I wanted to create a positive family culture to raise Teddy in, I grieved that the family system I was raised in, was not a template from which I could work. As I tried to become a present and engaged parent, while waging a battle on my own mental health, I was confronted with the many ways that I had not experienced those same qualities in my own childhood. It was hard for me to give to Teddy that which I had not received.
After the ravages of early sleepless parenting, conflicts with my family of origin, and a sudden loss of childcare overnight in the lockdown of the 2020 COVID pandemic, my husband Marcus and I started to come up for air. We thought we were out of crisis mode when schools re-opened, and we were finally able to send Teddy to full-time preschool. But he was not learning the way that other kids were, and his speech was delayed. One day at pickup, his preschool teacher was tearing his hair out, and let slip: “I have no idea what to do for your son.”
I already knew Teddy was not like most kids. Instead of playing with dinosaurs or Legos, one of his first fascinations in life was the flowing of water, and its miraculous disappearance into the ground. On rainy days, we would follow the water through our town, noting where ponds drained into creeks, where creeks went under bridges, and where they joined a river or lake. There were magical spots where water runoffs from the road would meet a sewer drain or pipe, and go underground, only to re-emerge like a fountain spring on the other side. I found my son’s preoccupation with water odd but endearing.
Looking back, I think Teddy may have been more interested in sewer drains, than in me some days. Instead of just simply becoming aware of the strategic placement of drains in my neighborhood, something to which I had been previously unaware, I wished I had noticed sooner that we were not bonding typically. Maybe I could have gotten him interventions even earlier. Like many parents of children with autism, I was in denial for a period, before the piercing moment in which the last of my doubts and misunderstandings about autism cracked. In that instant, life ended as I knew it, and I was suddenly in a tunnel of deep feeling. There was a tornado-like gush of the changes we had to make and quickly: new therapies, changing schools, medical appointments, services, home modifications, and on and on.
Water re-emerging from a tunnel, is a good metaphor for my experience learning that my beloved son is also autistic. Part of me feels like I have gone underground in these last two years since his diagnosis, my feelings like the soil and rock, and the water of experience and time flowing and carving out the new landscape of my inner self. Like dirt, some of my feelings have shifted more easily in the flow of life; my initial grief of learning about Teddy’s challenges was reshaped by an understanding of his unusual gifts. Like an immovable boulder, I am realizing some of my big emotions are here to stay, and I will meet them again and again at different phases of my life. I will forever live with my enduring sense of urgency, that I will not have enough time and energy to fully prepare Teddy for the adult world. I fear he needs more skills and resources than I will be able to supply during my own lifespan, not because I anticipate an early death anymore, but because I am not sure he will ever grasp the realities of the adult social terrain. There are so many parts of the world which are not designed for, and will likely be unkind, to Teddy. I pray that he also enjoys at least five good days out of every seven when I am long gone.
I coach people every day on building lifestyles that work for them and their mental health in my private practice Mental Health Lifestyle LLC. This is my own area of expertise, and I realized after the initial crisis of Teddy’s diagnosis, that I might be my own most important client. I needed to start rebuilding my own life too, as we simultaneously crafted a quality life for Teddy. This blog is my effort to share my trials and tribulations designing a lifestyle that supports my own mental health and well-being as an adjacent. While I have come a long way, I will freely admit I am a work in progress. Furthermore, I do not think I will ever have this all figured out. There will be no tying these stories up with a bow at the end. Life, and Teddy, and I are constantly changing. Yet, I have decided it is time to write, because five days out of seven is pretty good, when you consider the challenges my family and I have faced.
While I anticipate that my writing will have far-reaching applicability for many people living with mental and emotional challenges, particularly those living with anxiety and sensitivity like myself, I especially dedicate my writing to fellow adjacents. I am especially thankful to other special needs parents that came before me, who helped pass legislation that allowed children with autism to stay in school over a generation ago, and who advocated for medical, therapeutic, and community services and public funding, without which my family would have been significantly worse off. I am grateful to fellow adjacents in my community, who have answered endless questions, and helped me through an informal support network. I will write about many of these helpers and others in this blog, all whose identities I have concealed, unless I have specifically obtained permission to print their names.
I hope that this blog serves as a space for sharing of stories, information, and ideas with fellow adjacents, who like me are still finding their way. My intention is to write two posts each month during the school year, and to take time off in the summers to re-charge with my beloved family. Please forgive my belated start this academic year, as we just began kindergarten at a new school, and I am still catching my breath! It is an Olympic task to care for someone with special needs and abilities, while trying to craft a life for yourself that is also rich with meaning and purpose. In the blog posts coming in the following weeks, I hope you find comfort in these tales – my atypical adventures in living well.
Courage in the struggle,
Alissa
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References
1. https://search.yahoo.com/search?fr=mcafee&type=E211US1067G91652&p=adjacent+definition
2. Naseef, R. A. (2013). Autism in the Family: Caring and Coping Together. Paul H. Brookes Publishing Co., Inc.