Over the years, I’ve spent many posts expounding on what life is like as a parent of a child with autism. I’ve even created a few “mini-series” (like this one) to unpack various facets of this disability, though always more descriptive than prescriptive. After all, no one-size-fits-all approach exists when caring for children with special needs. And this blog wasn’t created just so I can dish out words of wisdom on how best to care for children with special needs either.
In truth, I have no words of wisdom.
Of course, the far greater truth of special needs caregiving is that the journey isn’t unique to me. There are many dads out there who are caregivers to children (some households have more than one) who have far more severe disabilities. The sort that would turn any Hercules of a hands-on dad into a hermit of an absentee dad! And many of these dads have tales to share that make mine, in contrast, almost pedestrian.
The other truth of this caregiving journey is the undeniable reality that the whole day-by-day experience of parenting is downright hard! So hard on some days, it can even be the single factor that builds up or breaks down a family.
While I’m thankful I’m still a long way (I hope) from seeing my family break down, closer to the present, I have more pressing concerns that are less about breaking my household and more about breaking my sanity!
Concerns that can be summed up in one word: Transitions.
How much “fair” warning do we give kids for transitions?
Three years ago, I wrote a post to express my frustrations when it came to getting my then-nine-and-a-half-year-old son C to transition from one activity to another. From one routine to another. Even from one place to another.
In that post, I talked about how every day is like a new day for him. And me.
To understand my frustrations, here’s a sample of instructions I articulate to my kid on a daily basis:
Son, brush your teeth now. Change into your school uniform now. We’re leaving for school in five minutes so get ready. Son, we’re back home now and you need to bring your shoes into the house, wash your hands and feet, finish your lunch, and get ready for a bath after that. Let’s finish up today’s schoolwork first before you play your computer games. Son, you have ten more….five more….one more minute to stop your game. [Rinse and repeat the next day!]
Are you feeling it yet? My daily grind? Well, guess what? Three years later, the grind remains!
But this grind isn’t just mine. It’s my wife’s, my helper’s, C’s grandparents, and his older brother’s too. In short, anyone who’s had to be his main caregiver at any moment of the day.
And it doesn’t just happen in my household.
Which is why routines are so important.
Experts will tell you that a fixed daily routine is sacrosanct for those with special needs (or Persons With Disabilities or PWDs). According to these experts, fair warning must be given to PWDs well ahead of time if you are going to change their routine.
What these experts don’t, won’t, or (most likely) can’t tell you, is how “fair” is “fair”? In other words, how much lead time and warning to give PWDs? In what form is the warning to take? Verbal? Visual? Tactile? A mixture of all three? And in what manner do we deliver the warning? Gently? Urgently? Flexibly? Firmly? Threateningly?
The truth is, transitions are mind-slammingly hard. Both for my son and, increasingly (to my burgeoning sense of self-awareness), for me.
Whose transition am I truly able to manage — his or mine?
At this point in such a post, readers might be forgiven for thinking I’m about to share some pearls of wisdom. Some tried-and-tested methods to overcome this madness.
The truth is, even after three years, I still don’t have any of these pearls to share here. I wish with all my exhausted mind, body, and heart that I do. But sadly, I do not.
However, one thing I am increasingly aware of three years on since that post, is that perhaps I’ve been managing these transitions all wrong! I keep thinking I have to keep preparing my son C in advance, and as long as I give him enough time and reminders, the transitions will happen smoothly, like the fluid movement of the second hand on the cuckoo clock in my kitchen.
Experience though says “Ah-ah, it ain’t that easy mate!”
C’s resistance to transitions is almost like a routine for him too! The minute we commence a transition, his push-back is like some autopilot system in an airplane that comes on instantaneously. He would whine, protest aloud, move away from us, and just rattle off one complaint after another. It doesn’t matter if it’s a transition that is part of a normal daily routine like going to school or taking a bath. It’s one thing if he’s fretting over these familiar routines at nine-and-a-half years of age. Quite another now at 12-and-a-half!
Yet, that’s the lot I was “signed up for” since the day C was born. I increasingly suspect C’s a gift from God to me in more ways than I’ve been able to fully understand, and unpack in all my autism blog posts so far. Most likely, he’s placed in my life to build my patience and perseverance. Or maybe my need to let go of conventional notions about the timeline for the growth and maturation of individuals, PWDs and non-PWDs alike. To learn to let go and accept. To be less hurried and harried.
And to manage my own transitions, frustrations, and (yes) sanity, better than I manage his.
But the question remains, three years down the road.