I am often amazed at how people scrutinize me because of my compelling need to control my schedule and calendar. It’s like I have to have my finger on the day, the month, and the hour at all times, and here is why. 

As a special needs mother I have to plan everything. My planning is the little bit of control I have on this wild and wonderful journey I’m on with my family. My planning is my tiny morsel of peace and my small iota of authority. It helps me make sense of the therapies, the appointments, and the nonstop barrage of providers. It helps me decipher all the stuff in my head and find a way forward. It helps me plan fun and social time for all of us, which is desperately needed. Recently I even started planning rest. I write in big letters with my favorite colored Sharpie: REST. 

My little black book of days and hours is my life. It helps me survive a demanding schedule with a smile. I look at it and have things to look forward to. I can cross off all I’ve accomplished for my people. This also helps me feel like I’m moving forward, and at times, it feels like we’re in the same place all the time just like Groundhog Day.

When people spring at me with spontaneous visits or expectations, I am unhappy. It’s because I’m already juggling an impossible schedule and pressing matters. I can’t always roll with adding one more thing. Everything must be planned because, in my world, this is the way I survive and manage it all with some dignity. Most days, I just collapse from exhaustion anyway.

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I’m doing a lot, and most special needs parents are doing a lot. We have to keep our composure throughout some very challenging moments. All of this juggling and controlled behavior takes tremendous mental energy.

When I became a mother, I was not ready for the madness. I’m not even sure you can be ready for parenting anymore. Even though I was a very well-organized woman and educator, I could not find balance in special needs parenting. I often felt depressed because I was so overwhelmed with appointments and places I needed to be. I was in constant motion and had I not had the support of my mother during those first few years, I would not have made it. Her presence, watching my daughter while I took my son to early assessments and appointments, was a gigantic help. At that time, she lived only seven miles away, so using her was not just useful but an absolute necessity. I am so thankful she was with me and could be the person I needed at that hour.

Planning became essential once I moved away and didn’t have her. Every waking hour of every day needed to be planned from that moment on. Truthfully, I had always enjoyed utilizing a planner. I used one as a student, I used one as a teacher, and I used one as a single working woman. Planning is my jam, and I absolutely love to plan. It feeds my OCD in a very lovely way and keeps me feeling balanced and in control. Many women are like me and I meet them often. I love when they say, “Let me look at my planner and get back to you.” These are my people.

I often joke that my kids came into this world to teach me to grow up, and they joyfully turned my life into total chaos. Every moment as their mom has been a learning opportunity. But I haven’t always handled my learning opportunities well. I struggled with many things for a long while, and it took a lot of time for me to get into a healthy rhythm.  

Planning activities is my secret way to manage this little bit of this chaos, and it keeps my anxiety at bay. This helps me make things happen for my family. So I plan and I plan and I plan. And when I accomplish something I’ve planned and facilitated, I feel quite fulfilled because I know that I made that happen.

If I don’t plan, we stay home and end up on devices. This is reasonable sometimes, but I enjoy being out in the world, and I want to teach my children also to be out in the world experiencing life and all it has to offer. I want them to learn to make time for others, to get organized, set goals, and to dump stuff out of their brains onto paper. 

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Sometimes people are deeply annoyed by my constant need to plan and my need to control the calendar. Sometimes I’ll ask about something six months in advance, and they stare at me like I’m absurd. I would love for them to understand that we special needs families need to dump all the stuff in our brains into a calendar. We can’t always be spontaneous, and we don’t enjoy being surprised because the day you plan to surprise us is most likely the day that says REST or SPA DAY.  

Lastly, remember that we are carrying so many responsibilities with our families. We have to find a way to make sense of the goals we have for our kids, or a place to write down all their therapists’ names and days of services, or where we’re supposed to be that moment when all we want is sleep and a blanket. Some days it’s hard to wake up and get motivated because we’ve been knocked down by some really tough news, or are helping a child who didn’t sleep all night, or we’re coping with something very heavy which is really tough to describe to neurotypical families. 

Looking at our planners helps us figure out where to go, who to call, and what to do that day for ourselves or our precious loved ones. This is a critical part of our own survival through challenges that you may not fully comprehend. If you want to support a special needs family like my own, schedule a time to see us and respect the planner and the one who plans.