There is No Timeline on Progress in Autismland

There is no timeline on progress.

There is no deadline on learning.

It never ends, it never stops; the door is always ajar, waiting to nudged open, slowly but surely, or even kicked wide open.

Lil D will be turning 14 this summer. And he has come so far in various aspects of his life while spinning his wheels in other areas. Sometimes we try to teach him something, some new skill, only to realize after a while that the backburner is where that skill needs to go. Maybe even off the stove, waiting to be brought back to simmer at a later date.

Other things we continue to work on, day after day, year after year, because it is that important, or because it is an inarguable and constant of life – bathing, washing hands, getting dressed and so on. Life skills that, whether he can do them for himself or not, are part of our daily scripture. But sometimes I despair that he will ever learn to do certain things for himself and will be forever reliant on someone to assist him.

My mother-in-law has a constant prayer. Ya Allah, usku kisee kai mothaj nay bano. Usku khudi appnay kam karna. Dear God, please let him never be dependent on anyone. Please let him do things for himself. It’s her prayer and mine, in every breath, in every salah, in everything we and his therapists and teachers help him to do.

It’s what I think when I help him wash his face and clean his teeth, when I mix his dinner and set it in front of him with a spoon to eat, when I help and/or supervise him in the bathroom.

Have you ever realized how extraordinary it is the way kids learn to do for themselves? The process from when they are very young and we as parents take care of their every tiny thing, to when they start to grow older and we teach them to feed themselves, dress themselves, make their bed, clean up after themselves in the bathroom and a million other things, to finally when they can (more or less) do these things independently.

This path of growth, as fraught as it can be with potholes and missed turns, still progresses forward for most kids. When you’re drowning in stinky diaper changes, you cheer yourself up with the idea that soon enough, your kid will be potty trained. Someday they will bathe themselves instead of you herding your kids through bath time. And maybe there’s a little sadness when they move to independence, knowing that they no longer need your help to wash their hair and dry their warm, clean bodies.

But for me, well I was thrilled when my daughter (my middle child) learned to bathe herself. It was an independent living skill I internally celebrated, knowing how important it was and how it continued to elude her big brother. Each step she (and my youngest son) has taken towards acquiring a new independent living skill has not for a second been taken for granted by me. Each is a God-given miracle of life’s progression.

We’re approaching Lil D’s 14th birthday, and his bath time is still done with a huge amount of supervision and help. At an age when teenage boys value their physical privacy immensely, most of Lil D’s bathroom activities require another person to be present and helping. It is what it is.

We have been teaching him to bathe independently for years. Years. It’s one of those skills that continue to simmer on the stove. I haven’t pushed it to the backburner nor removed it from the heat simply because one must bathe. And so each shower is an opportunity to help him learn to do things for himself.

Several years ago, I made the decision to ask his home therapists to help teach him independent showering skills. I knew that by doing so, I was further eradicating his privacy, as before only I or my husband assisted him in bathing. But I needed help. Ya Allah, protect his privacy. Let me make the right decisions. Help him to learn to do for himself, I prayed.

Last night, after a day filled with outdoor play, sweat and dirt-covered feet, I called Lil D in for the night and told him it was shower time. He eagerly bounded upstairs into the shower. I turned the water on and walked out to his room to grab his pajamas. When I returned and pushed back the shower curtain to help him, he already had the bottle of shampoo/soap in hand and was squeezing it onto his yellow bath sponge.

Whoa, whoa, wait, I called. Let me help! But he already was scrubbing his body with the sponge. I stood there, amazed at what I was seeing, and then quickly realized all he needed was some verbal and gesture prompting to get him to soap himself up entirely. Scrub there, I said while pointing. Scrub there too! Scrub, scrub scrub!  Soon he was covered in foamy soap from head to toe, even getting the bottom of his feet.

Ok, wash yourself off, I told him. And he stood under the water and rinsed off, only needing me to rinse off his hair. When he stepped out, I decided to push things a little further and handed him his deodorant (a new thing we’ve added to the bathing routine, because, you know — stinky teenage boys). He removed the lid and half-heartedly swiped it under one arm and then the other (after I silently gestured to it).

When all was said and done, I emerged from bathroom dumbstruck. This was a level of learned independence I had never witnessed before. We certainly weren’t at a place where I could say – hey Lil D, go take a shower, and expect it to be done from point A to point Z. But this was big, folks. Big, I tell you.

This was the possibility, the huge possibility of a future where he could, God-willing, gain back his privacy in the bathroom and maybe, just maybe, do for himself.

When you have real possibility, you have the world at your feet.

Say it with me folks – there is no timeline on progress.