ASD Outside the Comfort Zone

"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 therapies, a sensory diet, and regular reassurance to cope with her chronic sensory overload. This added to all the regular expectations of life and 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 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. (Wondering what the heck a sensory diet is? Read this!)

The Routine:

• Wake & Potty

• Breakfast

• Bath/dress/hair/nails/teeth

• Gross motor play (walk)

• Sensory break

• Snack

• Fine motor play (table work)

• Independent play/Tablet

• Lunch

• Day Program

• Snack

• Sensory break (deep tissue message)

• 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 and this visual timer I found on Amazon. Visual cues have helped reduce repetitive schedule questions and anxiety about her day. Many Montessouri-based toys have great utility for ASD families as well.

Now that I have that hard-won stability...

I discovered an unexpected downside - daily life can become stale and stifle growth. It turns out I didn't need a strict routine; I needed balance. I needed things to become routine enough that I could manage the daily tasks but not so routine that the predictability numbed us and removed all challenges from our day.

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. So, now that I have an established routine, I feel mentally prepared for new experiences while adapting our usual routines to suit our new activities and adventures, and that feels amazing!

Taking my preparedness to extremes.

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.

The takeaway -

The early years were challenging, and I was seeking any foothold I could find to manage my home, children, and feelings. The idea that I could juggle it all if it was in the right order or if I just managed everything differently was naive. The reality is that parenting is a journey, and no matter how you handle it, there will be missteps and overwhelm. I don't regret working hard to establish our routine, but I do regret the years of guilt, frustration, and blame I experienced before I figured things out. I know now that it is vital to let things be a little messy in the beginning, and if the struggle is wearing you out, ask for help or do a little less. There's no shame in acknowledging that things need to move at a different pace in the early parenting years.

Are you ready to shake things up?

Where can you go? What can you play together, read together, eat together, or share 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

• Karaoke - sing terrible and loud

• 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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Disclaimer:

The information provided in this blog post is for general informational purposes only. It is not intended to be a substitute for professional advice, diagnosis, or treatment. Always seek the advice of your physician, therapist, or other qualified health providers with any questions you may have regarding a medical condition or the care of a child with Autism Spectrum Disorder (ASD). The views expressed in this post are based on personal experiences and research and do not necessarily reflect the opinions or policies of any medical or professional organization. Reliance on any information provided in this blog is solely at your own risk.