Daily Living With Autism #16 — Poor Balanced Scorecard

I promise not to cry. Or so I tell myself on a fairly regular basis.

Yet what’s wrong with crying? It reminds me of my frail humanity, doesn’t it? Of how real the challenge of raising a kid, especially one with autism and special needs, is.

Over the years, I’ve cried privately and openly enough. And channeled much of all that emotional energy into this ongoing series on daily living with autism.

Now, I’m a bit more measured. Now, I don’t go all ballistic. I simply take a moment every so often to just breathe and tell myself to soldier on.

Like I did last Sunday evening when I had to sit down with my wife to complete a survey the school gave us. It was called the ITP, or Individual Transition Plan.

The Individual Transition Plan for Autism

The survey provides my son’s school with insights into his preferences, interests, strengths, and needs, as well as our plans and aspirations for him. It was also designed to help the school understand our needs and concerns regarding his post-school life.

As with most forms these days, it was parked fully online with boxes to check on a scale from great to not-so-great.

With the survey completed and turned in, his school will then work with us to develop individualized post-school goals for him and determine the action steps needed for our son to achieve these goals.

So what were some of the items we had to check off in the survey? Let me break it down below, and then tell you why I nearly cried after finishing the survey.

Category 1 — Strengths & Interests

The first category was all about my son’s overall strengths and interests. In particular, how well he displays them in four settings: home, school, community, and leisure time.

My wife and I listed his interests relatively easily — Lego. Transportation (especially buses and the Street Directory). Song recognition (he usually remembers a song after hearing it just once or twice).

Not so when it came to strengths. We could think of just two — Observational power and recollection (he can often recall little everyday moments, though mostly about a classmate being reprimanded by the teacher, or an adult saying something offhand that he/she would rather my son didn’t repeat to others).

Of the four settings, the one that gave us some pause was community. We realized that our son has very little by way of “community” since he’s dependent on his parents to arrange play dates. He’s also very much a homebody, especially post-COVID, so opportunities to interact outside of home were few and far between.

Categories 2 to 4- Living / Learning / Work Outcomes

The next three categories were all about his living/learning/work outcomes.

The questions in this section of the survey include what my son prefers to do during his leisure/free time, what he prefers more when participating in activities, and whether he has any preference for enlisting in NS or national service. (This is mandatory for up to two years, for all able-bodied men in my country when they turn 18. They may complete NS with the military or the civil defense forces, depending on various tests and assessments before enlistment)

Other questions include what activities in the community my kid currently participates in (none, other than attending Sunday School, albeit very reluctantly!), what interventional services he currently assesses (right now, occasional and infrequent speech therapy for his drooling, as well as weekly math enrichment), as well as his social support network (which currently are us his immediate family, as well as my in-laws)

Also, what were his self-management, self-care, future living, financial (will/trust fund), and work arrangements?

Not that I believe in such a thing, but if there was a spirit animal to embody my identity right now, I think it would have to be an ostrich!

Daily Living with Autism. Daily Living in Denial.

In these past few years, so many of my blog posts have discussed what the daily care of my son with autism looks like. I’ve even dissected at some length the enabling masterplan my country had come up with to support those with special needs. I wrote them all just to feel like I knew what to do for him in the years ahead.

But the truth is, knowing in theory is one thing. Getting down to the brass tacks is something else.

The enormity of the task isn’t lost on me. And even if it was, this school survey would have woken me up from my slumber and denial. Or wrenched my ostrich head out of the sand!

My son turned 13 last month. That fact alone should galvanize me and my wife to look at how we are doing as parents. How we are prepping him for teendom and beyond. Yet, to borrow a term from the commercial world of work, how does our “balanced scorecard” for him look like right now?

Going by our feeble answers in the survey? Not too great.

I came away from that survey feeling I’ve shortchanged my boy all these years in terms of his care and development. That feeling stung. Didn’t I leave full-time work to be a stay-at-home dad just so I wouldn’t have such a feeling? To know that I’ve done my level best to help him level up?

Then why is it that with so many of the scaling questions in the survey, the answers my wife and I gave looked like we weren’t doing great in nearly every category?

I’ve no answer right now. Just despondence. For my son’s sake, let’s hope that this is a temporary state, and in time soon I’ll have a more balanced scorecard to show for it.