Our ASD Diagnosis Story and How it Affected My Worklife
My son was diagnosed with ASD Level 3 when he was three years old. Even with the severity of that diagnosis, I was told that they believed that he could be rediagnosed to ASD Level 2 or ASD Level 1 in the future based on the progress they had seen in him in a few months of early intervention.
I was working at a local department store as a full-time, night-shift freight worker. I would wake up at 11:20 each evening, go to work at midnight, return home at 8:30 am, then watch my son until around 5 or 6 pm, when we would go to bed. I had been doing this for months, never had two days off in a row for any real recuperation, and was extremely tired. I knew I couldn’t continue on if I was to give my son the care he needed.
Fast forward to today, I currently work at home full time. I am able to set my own schedule and work around his needs. I don’t have to worry about sick days and I’m far less exhausted while taking care of my son on a general basis.
Working at Home with an ASD Son
While there are definitely several benefits to working at home, there are also many challenges. Outside of the “normal” challenges that many home-workers face, I have a few extra due to my son’s particular needs. I want to share with you how I have learned to both work and take care of my child at the same time with the hope that it could help someone else navigate these waters.
Every child, with special needs or no, is unique and will give the work-at-home parent some unique challenges. Even within autism, as every child will be located somewhere else on the spectrum, some of what I do may not work for your situation. The key is to find ways to work in your particular environment while meeting your child’s needs.
The following is what I do on a daily or weekly basis to keep myself productive while also being a mother:
1. Keep a Detailed Planner
While I have a far better-than-average memory, I know that I will forget some details of plans if I don’t write them down. I’ve also learned that the more I have planned in the week, the smoother the week goes, even if plans get altered or changed.
I find that using a planner is essential to keeping things on track and organized. If you don’t already keep one, I urge you to try it out for a month or two. It takes a while to create the habit, but it is well worth it in the end.
How I Plan My Workflow
While I plan out things for life in general, here is how I plan for work. My work partner and I use Trello to manage all of our projects. We know what our overall goals are and have broken them down into several steps on Trello.
At the end of each month, I look at the Trello board and determine what is most needed for the following month. I use the monthly calendar in my planner to write out the major details and due dates for individual projects.
At the end of each week, I plan for the following week based on the information I have on the monthly calendar. I always schedule myself with a “heavy” workload with the understanding that I may not finish everything I hope to achieve (I rarely don’t, though sometimes I surprise myself). I find that if I have things I need to do, I tend to be more productive with my time. If you are the type of person who would feel overwhelmed with this method, then schedule only the things you are sure you can accomplish.
I keep a planner in addition to Trello so that I can stay focused on the tasks for which I’m responsible. Both Chris and I use Trello as a way to compile our ideas and planning and things constantly being moved around. Having something outside of the board to keep me on track is essential for me personally. Additionally, I love being able to throw my planner into my backpack when I’m leaving the house and not be reliant on my mobile phone to see my work. Everyone is different and if you prefer electronic scheduling, play to your strengths.
The Planner I Use
Personally, I use the Plum Paper ME Planner. It is has a vertical layout with seven different categories. I generally use three of the categories for my work and four for life. While I love it, it doesn’t really hold everything I need, so I’m thinking about getting an additional planner with a daily layout where I can write down the tasks I need specifically for my work.
2. Wake Up Early
I set my alarm and wake up 3-4 hours before my son wakes up. Since I used to work the night shift, I don’t find this difficult and I still get more sleep than I did in the past, but I still adhere to a morning routine to keep myself going.
If you consider yourself a night-owl or enjoy sleeping in late, this may be a struggle for you. Studies have shown that doing things when you first wake up is the best way to stay productive all day and the first few hours you are awake is when your mind is at its peak. However, if you simply can’t wake up early, you can discipline yourself to work a few hours after you have put your child to bed in the evening.
My Early Morning Routine
The first thing I do every morning is wash my face to wake myself up, then I use my Soda Stream to carbonate water that I pour over sliced lemon (or limes or both). This helps me wake up and get hydrated right away and the fizziness of the water makes it feel like a little luxury.
I generally work out at least three days per week before I start my work to keep myself healthy. When I start work, I tackle the hardest task of the day first. Not only does this get it out of the way, but it ensures that I won’t have to do it later on when my child is awake.
Have Dedicated Quiet Times for Work and Self-Care
If you are starting your own business or working online, it is far easier when you have a few hours where you don’t have to split your focus between work and your child. Find what works for you. If they go to school or daycare, you can use that time to work. Just remember to stay focused.
My son goes to an early intervention pre-school part-time in the afternoon. On days where he is in school, I get a few more hours to focus on my tasks. I generally split this time between work, housework, and self-care. If the day has been especially rough, I use the entire time on self-care, even if I haven’t been very productive workwise. I have found that this is the best course of action long-term. When I neglect self-care, I tend to burn out very quickly, then I’m far less productive overall.
When school isn’t in session, things are a little harder to manage, and I have to plan ahead for those periods. While I’m still productive in the mornings, I’m less so due to fatigue and the need to take care of myself a little more in the mornings. On these weeks, I give myself a lighter work schedule with easier tasks as a way to force myself to “take it easy.”
3. Learn to Roll with the Punches
Things won’t always go according to plan. There are days where everything may seem like it is working against you. On those days, you have to roll with the punches and give in to the fact that you won’t get as much accomplished.
Managing Sick Days
There are days where my child is sick or the teachers at his pre-school are sick and school is canceled for the day (or week). When that happens, I have to look at my schedule, shrug, and acknowledge that I might not get much done.
If you work independently, this will be less of a problem than if you work at home for a company or as part of a team. Make sure to let others you work with know that you may need to take the occasional day off. Most will be understanding, especially if you prove yourself productive most of the time.
Fortunately, my work partner understands my situation and isn’t phased when I have to take the random day off. In fact, he often urges me to take breaks if he senses that I’m more stressed than usual.
Plan for Interruptions
There are tasks I can do while my son is awake. These are tasks that I can quickly return to after being interrupted without losing progress. Anyone with children understands that interruptions will happen, and there are days where my son seemingly needs my constant attention.
While working on tasks in 5-minute sprints throughout the day isn’t ideal, I find that I can accomplish quite a few things that would otherwise eat up a chunk of my quiet time.
Speaking of interruption, unless it is necessary for your work, uninstall social media from your phone and use it sparingly on your computer. Facebook is known for stealing hours that you could be using for other things.
4. Separate High-Maintenance Tasks From Simpler Ones
Learn what parts of your job you can do when your child is awake and do the others while they are asleep, at school, or with a caretaker.
Understand Your Limitations
My son is prone to meltdowns if anything goes “wrong” in his world. Even small sensory changes can cause him to panic for several minutes (and occasionally hours). He loves structure and schedules and it is hard to deviate from them while keeping him happy.
For this reason, I know I can’t do any sort of phone work from home. It would be difficult to work with a potential client over the phone when my son is awake. It would be far too loud and unprofessional.
If you are in a similar situation and work with a team, explain to them what may happen. Most people will understand. In fact, they may be willing to take the “phone calls” and have you focus on the tasks that work best for your situation.
That being said, if your child is quiet, you may be able to take jobs that require you to be on the phone without any issues, whereas some of the things I do could cause a problem. You need to determine what you can and cannot handle, then design your work around those limitations.
Stay Focused and Determined
Keep your overall goals in your mind and continually work toward them on a daily basis. Even if you have a day (or a week) where things just go rough, start again when things settle down. If it helps, create a vision board or write out your list of goals where you will notice them often.
5. SELF-CARE IS A NECESSITY, NOT A LUXURY
For most of my life, I haven’t prioritized self-care in any way. I would work myself until I burned out, then play video games to rejuvenate myself. I was raised in a way where the concept of “taking care of yourself” seemed selfish and that I needed to prioritize others instead. While I do need to prioritize my son, my failure to ignore my own needs makes it more likely that I’ll snap at him or burn out on a daily basis.
Studies have shown that mothers of autistic children have similar stress levels to combat soldiers. To cope with the added pressure, you will need to take care of yourself and build a support system around yourself. Make sure that you schedule times for self-care into your schedule.
Prioritize Your Health
By the end of September 2018, I found myself exhausted, stressed, and at a breaking point. While earlier in the year, I had made advances with my mental health, the stress of working a full-time night job and taking care of my son was taking a toll on me. My eating habits were terrible and I rarely worked out. I knew something had to change, so I decided to try out the Whole 30 diet in October. I made it through the month and it truly changed the way I thought about food.
I’m glad that I made that change when I did. In November, a friend suggested that my son may have autism, and two weeks after that, it was seconded by a teacher who worked at his school. I knew at that point that my life would have to change drastically. If the foundation for taking care of myself hadn’t been created, I think I wouldn’t have pursued it.
If you haven’t prioritized your health, I urge you to do so. It will help improve your mood and increase your energy over time, allowing you to better handle stress and being productive.
Take Time to Enjoy Yourself
Find things that you truly love to do that will rejuvenate you and try to do them once or twice a week. Personally, I love reading in a hot bath with muscle relaxing bath salts. While I can’t afford spa days, this is a good way to pamper myself.
I also love to be outside, so I frequently take my child to parks, lakes, or the beach. The fresh air is good for both of us and, occasionally, I can get some work done while he plays.
I take myself out for coffee twice a week. Even if I take my work with me, sitting in a clean environment that smells like coffee is a luxury by itself. I love artisan coffee and having it properly made is fantastic. As I don’t have it every day, it doesn’t lose its special quality.
The goal is to find things you can afford that will give you the maximum enjoyment for your time.
Sprinkle Small Luxury Throughout the Day
As I stated earlier, I drink fizzy lemon water every morning. It is something I enjoy and I feel like I get a small treat. Find little things that you can incorporate into your daily life that will give you a small pick-me-up. While they may not be able to fully boost your mood, they will help maintain you.