"One's destination is never a place, but a new way of seeing things" – Henry Miller
Routine is nice. A steady pace gives us space to manage so much of life without losing a handle on our relationships, health, sleep, etc. I have worked diligently to create a routine that counters the tearful frustration I feel when my ASD home becomes dysregulated.
I spent my children's youngest years struggling with routine because everything always felt chaotic. I thought if I could keep meals, exercise, laundry, and everything at a specified time, all the small struggles would disappear. This was reinforced by all the ASD literature too. However, the ups and downs of parenting aren't predictable even with the best routines, and special needs parenting can feel even more unpredictable.
My daughter's needs are special. She doesn't develop at the pace other children do, she doesn't do much that other children do in fact. This leaves my family on an island without the village. Even her doctors and therapists are generally making suggestions about her care rather than providing a concrete playbook. Between the challenges of ASD, lack of benchmarks, and a chronic sense that things were out of control, I would describe the first eight years of parenting my ASD daughter as a whirlwind.
My daughter has always needed deep pressure, a sensory diet, and regular reassurance to cope with her chronic sensory overload. This added to all the regular expectations of life was part of the exhaustion I felt working out our daily grind. After eight long years, many therapists, medications, and built-up stamina, I now have a routine we can breathe within. Some of the credit must also be given to the passage of time and her own development.
Now we have overcome the fear of water that made hygiene a headache, food aversions that made meal times lengthy, therapists are well established, and we've incorporated enough sensory breaks and diet items to keep the overstimulation to a minimum. Now we have a routine in our lives. (Wondering what the heck a sensory diet is? Read this!)
Wake & Potty
Breakfast
Fine motor work
Walk the dog
Bath/hair/nails/teeth
Sensory break
Snack
Craft
Independent play
Lunch
Day Programming
Sensory break
Dinner
Walk
Family time
Meds.
Potty
Teeth
Read
Bedtime
This is our general guide. Each day is a little different, but we build from here. To keep my daughter on track and confident we use this PECS board I found on Amazon. Visual cues have helped reduce repetitive schedule questions and anxiety about her day.
An unexpected downside of routine? Things can become stale and stifled. Our daughter's negative or troublesome behaviors peak when things are chaotic. She needs us to help regulate her, we are her barometer. This doesn't mean she can't handle new places and activities, in fact, she loves a good adventure, but it means that we must be capable of maintaining a level head and good spirits on our adventures.
We were recently able to take a vacation, way outside of our routine, shaking out the stagnant. This was so mind-opening for me that I have three more trips planned.
My daughter showed me her skills and insights that aren't exposed in our hard-won routine. I'm not flawless in execution, but I've been reminded to take extra time to cue her in or seek her insights. Getting outside our routine showed me that I may undervalue the benefits of experiencing some uncertainty and struggle. Rather than tugging her along to 'catch up' or mitigate with routine, I'm now trying to leave room for spontaneity. I should say that I'm confident the main reason we've arrived at this place where routine and spontaneity can mingle is the years of effort that came first.
There is grief that accompanies having a child with special needs. There's also confusion, overwhelm, and a myriad of other emotions. But now that I've moved through that to acceptance, I'm working on moving from acceptance to engagement. Engagement with her state of being, not just as a caregiver, but human being to human being. There are so many things to navigate as a parent. We get caught up in all the things, but as vital as it is to establish a routine, finding space for growth is just as important.
Where can you go? What can you play together, read together, eat together, or share together that removes the usual and uncaps something new? I am telling you from experience that seeing your child's untapped awareness and insights can heal and excite the grieving or overwhelmed parent within us while expanding their world. With whatever energy and means you have, I encourage you to explore life outside your comfort zone, from time to time. Maybe bring a special snack in case of meltdowns, for everybody.
Need some ideas?
Try a local attraction's sensory-friendly day
Host an extended family sleepover
Take that family vacation
Cooking classes
Read non-picture books
Create a daily together hour - minimize stimulation and connect
Explore a pet shop or animal shelter
Create home movies
Camp - in the backyard or far from home
Explore a craft store and create whatever together
Explore board games/apps.
Exercise classes
Music Classes
All Abilities Community choir
Start a band
Wishing you luck with your usual and unusual efforts!
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