Of forms and failures and why they fail my son

It’s that time of the year again when I begin filling forms, lots of them, for my autistic son – forms from school, therapist, county, for scholarships, grants, waivers, you name it. As I sifted through the paperwork and data, referencing the past ones, scribbling over the new ones, a familiar sense of disquiet engulfed me. There it was again. The same pattern. We were still shooting for the same goals, still struggling with the same challenges, and still asking for the same services. How did that happen?? Did nothing change in the past 8 or so years ??? 

Although I know for a fact that my son has made progress, in the portrait that emerged from the forms, he was still the same child he was when he was 5. They seemed to scream failure loud and clear!!!

In fact, the only difference between the old forms and the new ones was the fact that we were now dropping more skills because time is running out and we needed to pick and choose what he absolutely needed and what he could do without. Learn to tie his shoes and button up his shirt – slip-on shoes and t-shirts will do. Improve basic mathematics – a calculator can help. Learn how to write – let’s focus on using a keyboard and a touch screen instead. We were dropping goals in every iteration!!!

Was my son really not making any progress, were we losing hope, running out of time, or just being more practical? I’m not sure. But nothing made sense to me because I could see my son move forward, bit by bit, but definitely forward. I have been seeing small changes in him. Encouraging changes. Things that I might not be able to put on a paper or a form, growth that does not correspond to a chart or a graph but progress for sure- real progress. So why don’t all those documents say so? Are they designed wrong or do I interpret those incorrectly?

Have these forms been designed to see how my son fits into the socially accepted standards or are they designed to measure his real progress – the ones that will define him, not with respect to the society, but with respect to him?

It’s interesting how all parents strive for the same goals for their kids- special needs or otherwise : Independence, happiness, success. How you decompose these goals depends upon what your child is but this is where it all leads to. As special needs parents, ours is a long winding path, full of challenges that are unique, extraordinary, and often exhausting but we all strive to reach the same goal in a broader sense. So, how we evaluate and quantify our journey also needs to be different even if our goals look the same.

What our kids might have achieved, what they are capable of, and what is the definition of success for them might not always be reflected on a report card, a form, or an IEP document, though it should be. The definition of their success might look very different and something that does not come with a report card or can be translated into a grading system for data analysis.

My son now comes and gives me sloppy kisses when I am upset with him. He can empathize and respond appropriately. The last time I was talking to him, he did not drift off into his own world, he stayed with me, his eyes curious, trying to make sense of what I was saying. The other day, I think we shared a joke- for the first time in 12 yrs! Where do I put that in a form? I have not come across a form that accurately measures these. However, all this is him taking yet another big leap forward.

Unfortunately, the system that we are in is designed to see progress from the perspective of a neurotypical person, test scores achieved, accolades collected, competitions won. These are tangible, measurable, and relatable. The human score is what the system misses to measure. The ability to face challenges, learn against odds, make progress and measure that progress not against social standards but against personal milestones. 

My son is gaining his human scores, but as I find myself swamped with all the paperwork that claims to help chart my son’s future, I stand confused. They don’t see my son – the person that he is; the individual that he is turning into. How will they help me plan where he should go?

I’m proud of all the progress he is making, and of the road that he is etching for himself. I delight in the fact that he is constantly moving forward, even if it’s slow like a snail,  because like a snail, he is leaving behind a silver trail wherever he goes. We have our own little success that we rejoice about, no matter if they show up on his forms or not. It’s these forms that fail my son, not my son who is failing on these forms.