Last month, in response an earlier post titled “Current Issues,” I received this comment from a reader:
Long due note:
I’m a regular here. We are sailing the same long road with my daughter who is three-and-a-half. Your overwhelm me and encourage at the same time. I feel like you are a super mom to be doing all that you do. I’m shattered most of the time and come back to you for hope and guidance. I’m very curious to know where you started. I have gone back and searched the blog and couldn’t find a journey type of blog. Can you write about this when you can? When did you get diagnosed, what were your earliest challenges? Where did he stand verbally when he was diagnosed? I know every kid with autism is different, but I see Martin as hope and would like to get some perspective on where he started to ensure I’m keeping my recovery stories aligned.
One another point of interest is how has going back to work been? I took a brief break immediately after diagnosis and came back. I absolutely love my job and the benefits that come with it to enable us in this journey but guilty nevertheless for not making the choice to stay back.
Once again, to me you are the perfect mom I wish my daughter had. Some day I will get there.
“You . . . encourage me at the same time.” Thank you so much for this note. I write this blog to encourage others, as well as to provide the truth about when recovery isn’t going the way I envisioned it should. If at any point I’ve come off as “the perfect mom,” I apologize. I am far from that. Like you, I’m struggling to find my way along this path. I have written from time to time about where Martin started, but for you I will put together a post about exactly where we were when he was diagnosed. Just last week, I happened to be cleaning my office and ended up reviewing his heart-wrenching initial neurodevelopmental report, so I will start from there.
This kind reader is getting two posts in response to her comment. The description of where Martin started requires more time, because in order to make sure I get it right, I want to review not only my contemporaneous notes of Martin’s behavior around diagnosis, but also those first neurodevelopmental evaluations. In this post, I will answer her easier question, “How has going back to work been?”
When Martin was born, I was not working in paid employment; I was on a break from my job with a large law firm in order to complete my MFA in fiction writing. I finished that degree and then returned to the large law firm, albeit part-time, in late summer 2009, when Martin was 14 months old. Primarily, I was able to work from home. (Despite the bad reputation of large, competitive law firms, mine was, and remained, accommodating to my scheduling needs and desire to work remotely. For that, I am grateful.)
By the following summer, when Martin turned two, Adrian and I realized that his behavior was “off” and trending farther from the norm. We received a tentative autism diagnosis in September 2010. The diagnosis was made official in April 2011, after two months of neuropsych evaluation. By that time, we had already started biomed. I continued working for the large law firm, frequently exhausted, until January 2012, when I finally quit in order to focus on Martin’s recovery.
I stayed away from paid employment until October 2014, when I switched direction entirely and took a part-time gig litigating for an upstart, boutique law firm. That’s still where I’m working today. The scrappy new venture suits me (current me) much better than the white-shoe firm where I spent 13 years defending large corporations. Our little collection of lawyers represents non-profit organizations and consumers, in the areas of food safety (including pesticide residue), protection of farmed animals, greenwashing, and keeping toxins out of household products. My hours are, generally, flexible, and most of my work can be done from home; I commute only once or twice per week to our offices in Brooklyn. On those days, a caregiver picks Martin up from school and handles after-school activities, dinner, supplements/antimicrobials/etc., and bedtime. Also, Adrian and I employ a housekeeper, who comes for a couple hours each weekday morning to take care of laundry, the kitchen, and cleaning.
Despite those facts, I regret to inform you—here, I neither request nor think I deserve sympathy—that I have reached the depressing conclusion that it is not possible to do complete biomed and also work full-time, or half-time, or any more than minimal part-time. At least it is not possible for me, at 45 years old and needing the sleep that I lacked for the first years of Martin’s recovery. Although I have household help and childcare assistance, the tasks that still fall upon me include sourcing (in some cases, growing) clean food, cooking, baking snacks and desserts, trial-and-error with Martin’s diet, ordering and tracking and administering supplements and antimicrobials, coordinating doctor appointments and recovery-focused activities, research, and (this I consider important) facilitating quality time for Adrian and Martin. Regarding Adrian and Martin, I like them to be able to go to the movies or go shopping or visit a restaurant together and feel as typical as possible. Preparation for these activities entails a lot of checking menus on-line and packing snacks and sending activities like books, etc. (No, Adrian does not help with these tasks. Read this post.)
On a school day, I get up at 5:40 to heat and package lunches, prepare breakfast, organize and administer pills and drops, and shepherd Martin’s snail-pace preparation for school. Martin’s after-school activities—which include taekwondo, chess club, music lessons, psychologist visits, social-skills play group, and neurofeedback—can feel all-consuming, even before adding homework, with which he needs guidance. I keep Martin busy, because he still doesn’t have enough friends for regular play dates, and when his hands are idle he’s mostly whining for his iPad. Martin’s schedule means that, unless someone else is handling after-school activities, I have time only for finishing up the last parts of dinner preparation. Any minutes remaining after Martin is in bed I dedicate to cleaning the kitchen and prepping for breakfast, baking snacks if we are running low, putting together Adrian’s lunch for the next day, and if I’m lucky, watching a show or the news with Adrian.
Given all that, unless someone else is on duty after school, I have exactly six hours “free” per day, the time between when I drop Martin off at school and when I pick him up. During that time I go to the gym (often, this is aspirational), shower, grocery/food/farm shop, get dinner mostly prepared, set appointments, research treatments and diet, blog, volunteer time for the special-education PTA and church, and—work. Many days, not much time gets left for work. Many weeks, I try to cram all the lawyering into the one or two days I’m able to go to the office. Furthermore, when work, by necessity (lawyers don’t always have control over their schedules), spills into “Martin” time—say, when I have to take a conference call from a playground, or an emergency project precludes me from completing reading exercises—the guilt becomes oppressive. Why, I ask myself, do I even bother working? Why, when I am within the very lucky minority of biomed parents whose spouses earn enough to cover expenses, do I sacrifice any of Martin’s due for my own selfish craving for a life apart from autism recovery?
Around Christmastime, I sat down with the chairman of our little law firm and told him I need to reduce my work even more and, to the extent possible, restrict my activities to writing projects that can be anticipated in advance, in order to keep my schedule regular. The conversation followed upon a difficult November and December, during which I oversaw document discovery, dealt with witnesses and clients, prepared our office for a contentious mediation, and traveled. I began the conversation, “I think you know I’m done for.” I’ve been mostly successful, since then, at reducing the workload and increasing predictability, but it remains a struggle. The chairman wants more from me; I enjoy the intellectual challenge and the opportunity to think about something other than, say, Lyme disease and vision therapy. Still, I have been given the tremendous opportunity to let Martin’s recovery take precedence. That gift must be honored.
So there you have my ugly truth. Despite a supportive husband, a housekeeper, competent assistance with childcare, and an employer that understands my need for flexibility, I have trouble working even part-time.
Dear reader, you think I am the perfect mom? I look at my church friend G—, who fully recovered the oldest of her five children while also working part-time, by necessity, to supplement the salary of her husband, a public servant. I look at G— and think, That’s the mother my son deserves, for I fall short in so many ways.
Martin following his cousin up the mountain (no path required), Triberg im Schwarzwald, Germany.