She does know it's Tuesday (Disability Dads series)
Four-and-a-half year old Amy Reyes has Rett Syndrome, a neurological disorder caused by a faulty gene. Almost three years on from her diagnosis, her dad Eduardo blogs about the way she challenged and changed what he needs to be as a loving parent.
I loved being a parent first time round. After a few months of sleep deprivation, being a Dad seemed to be easy and intuitive on the whole.
It helped that our first was a total daddy's girl. She was easy to spend time with and, back then, I felt that I was hardwired for a sort of parental greatness.
Amy arrived in 2007 and did a lot to demolish that confidence - though she's also been responsible for rebuilding it in some good and different ways.
Rett syndrome affects mostly girls. Heartbreakingly, girls with Rett regress, losing almost all the skills they've acquired in movement and speech.
Amy never progressed as far as walking and talking before the deterioration started. Just before she was two years old, over a period of a few days, I found she had lost the ability to sit for ten minutes in front of CBeebies without toppling. "What am I doing wrong?" I'd ask myself.
I had the same question when she lost the ability to hold and chew a torn piece of baguette at the farmers market and, on one occasion, I stopped just short of angrily accusing a baker that he must have changed the shape of his loaf. 'On edge' doesn't quite capture how I felt.
Then, and now, she'd scream with discomfort for a portion of any day. When she was younger it happened a lot during the night too. I recall one episode in the early hours where her yawl had attracted a local Tom-cat who just wouldn't stop prowling outside the back door while I struggled to cope. A particularly low point, that.
I have always felt an incredibly strong instinct to protect Amy, but other stuff around parenting, the intuitive stuff that was so simple first time round, didn't come as easily.
Unable to direct most of her movements or speak, Amy is 'locked in'. She can't show me for sure that she understands what I say so I found explaining to her what she was going to do, or where she was going to go next, didn't come naturally.
Likewise, without a conscious effort in the early days, I was bad at taking the time to try and give her choices - too impatient even to wait and see if she took more interest in the cover of one story book over another.
The fear that doing something public with her just couldn't work, made me reluctant to arrange it. Last year I almost vetoed Amy coming to a Chinese restaurant for her sister's birthday dinner.
I reasoned it was often her worst time of day, that one of us would have to leave if she wasn't happy, and even if it worked well we'd be pretty fraught with the worry that it wouldn't.
But her sister was adamant Amy should be there. She was right to insist - Amy had a ball.
The restaurant is a pretty sparkly place, the tables are widely spaced (she hates to feel hemmed in), she loved trying different dishes, and thought me feeding her using chopsticks was hilarious; her laugh, when it's there, is infectious.
Choices, being included, horsing around - they all matter. We have to keep on passing a lot of exit signs and fighting the urge to turn to the privacy of home, instead of taking the time, and a few 'risks', to line up those nice moments where everything comes naturally. And even then, it doesn't always work!
One final thought on learning to 'get' a four-ear-old who can't speak or do sign language ...
On those few occasions when I've told people that Amy would "never walk or talk", and they've responded by asking "what do you mean never?", I've closed down their annoying line of questioning by darkly joking: "And she'll never know it's Tuesday, either."
A few months ago, I suddenly twigged that her special school had different colours up in reception each day of the week. They actually make quite a big thing of it. So, you see, she absolutely does know it's Tuesday, and I need to remember that.
Does your child have communication difficulties? How do you gauge what they want and how they're feeling? And how do you respond to unwanted questions about your little one?
The Disability Dads series continues next Friday.