“Patience: A minor form of despair disguised as a virtue.” ~Ambrose Bierce
I’m a fairly patient person. I’m not one to speed. I can frequently be heard telling my husband, who has severe ADHD, to remain calm and that we will find whatever lost thing he is looking for. I don’t get all that upset waiting in line. And you’ll never hear me getting angry with a server because our food is taking too long. I’m capable of being cool as a cucumber and have had more than one person proclaim me the best person to teach others how to drive a standard transmission.
So, I would have thought that I would be a good candidate for tolerating the wait-and-see of my son’s developmental delays. For some things, I have been. My husband gets all bent out of shape worrying about Callum’s self-limited diet of chicken nuggets and, well, basically anything dry and crunchy. He was terribly worried about our son’s slight delay in walking. And he asks on almost a daily basis, “When should we start potty training him?” I know that it annoys him how calm I remain about these topics. I was convinced that he would walk — and he did at 16 months. I keep telling him that eventually Callum will eat other things and that we need to worry about more important things. ( I don’t really know this to be true, but it seems to pacify him — so I keep saying it. ) And potty training? With autism already in my family, I am well aware that we could be in for the long haul. At the very least, Callum will probably be behind everyone else with regard to toilet training. So, I choose not to sweat those things and keep up my annoyingly calm facade.
And it is a facade. Because underneath all of my protestations that all will be okay, I am terrified about one thing. When is he going to talk? I know I am supposed to adopt an attitude of keeping-up-therapy-and-hoping-for-the-best, but I confess I suck at it. I know that talking is not the measure of success for autistic people. I’ve read stories and blogs about lots of ASD folks who use assistive communication and writing. But I’m selfish. I want him to talk.
Since I was a little girl, I have always been a lover of language. I was a bookworm who read my first pictureless novel in the first grade and was reading almost a book a day by middle school. When I came across a word I didn’t know, I ran to a dictionary and practiced using the word until I knew it. Idioms have always fascinated me, and I have always sought out their origins. When my mother was going through her antique shopping phase, I would find myself in the back of the store, looking through the old books, scrapbooks, and antique diaries. Finding just the right word when writing, for me, is akin to a painter finding just the right color or brush stroke. I happen to think Wikipedia is one of the great wonders of the modern world. And I happen to believe that being illiterate is just about the worst thing that could happen to a person. I’m the aunt who gives books to children for holidays, and I am the moderator of not one, but two online reading groups. In my teaching career, I have been both an English teacher and a school librarian. Suffice it to say, language defines me as a person.
But language might not be part of Callum’s life. I don’t need my son to be captain of the football team, popular, or a genius. But, oh, how desperately I want him to be able to communicate more than just his immediate needs. I want him to have the power to seek information and to learn about his interests. I want him to be able to seek out minds like his and make connections to the world. I don’t want him to be trapped inside his own mind.
On one hand, I am trying very hard to accept that he may never talk. After all, there are a whole lotta folks who have been in my shoes who prayed just as hard and didn’t get this very same thing. And they have a lot of wisdom to share about changing one’s dreams and expectations. I have no doubt that all of that is true. The problem is that I’m just not there yet. I’m still in that bargaining with God phase. And I worry I’m never going to get past it.
I have said before that autism is a fascinating thing. And it is. But it is also a cruel tease — giving us small glimpses of the minds contained within before slamming the door shut again behind a series of elaborate and confounding locks. It isn’t that I want him to leave the room altogether. It’s just that I would like a really good window out of which we can see each other.
Right now, Callum is giving us a lot of good signs. He has a few words that he uses when he feels like it. Clearly, he has some receptive language. Ask him if he is ready to take a nap, and he will dart to the other end of the house in an escape attempt. He will sit at the table when asked and put his sippy cup down rather than throw it when we insist. Say “bath”, and he enthusiastically makes a run for the tub. He takes our hand and leads us to what he wants. He’ll open the refrigerator and reach for or hand us the milk, saying “Pees?”. And he’ll occasionally say, “Joo” when asked if wants milk or juice. He gestures for help to get on the bed to jump. If you tickle him and roughhouse, he will pull your hand back to do it again and say or sign “more”. And he babbles with inflection all day long. He has pretty good eye contact, is curious to see what we are doing, and “checks in” with us repeatedly when running around the house doing his thing. There is no doubt he has the “communicative intent” all of the resources I have obsessively researched on the web have said are good predictors of speech development. And he is still three months shy of being three.
Yet, I drive myself crazy because I know that, when it comes to autism, there are no certain predictors of anything. And the broken record in my head starts again. I often feel stuck in a state of worry, and I can’t seem to get unstuck.
I’m trying to cut myself some slack here. I know that I am new to this. And I know that, at some point, I will move beyond the bargaining with God phase and into acceptance of whatever may be. But I find it’s not happening fast enough to suit me – which brings me full circle back to the subject of patience once again.
How do so many of you reach that place of patience, peace and acceptance? And how long will it take me to get there?