Eating out with Timothy is like a game of speed chess. He makes his move, we respond, our response opens up a new opportunity for him, he counter strikes and we quickly try to put an end to his offensive. All the while, we’re willing to let him take a few small victories, but minimize any big losses.
Recently, we were eating brunch at the Cheeky Monkey Deli in St Paul and Timothy was trying to adopt the behavior of the café’s namesake. Our own little cheeky monkey finished his meal, and quickly stood up in his high chair, which prompted Laura to pick him up with her right arm. But as she tried to return to eating her meal, TRBL leaned and stabbed both hands into the yolks of her sunny side up eggs. While Laura quickly countered by pulling the yolk covered fingers and their owner away from the table, Timo stretched forward again and narrowly missed grabbing the butter knife. With the game over and the immediate threat averted, I smothered the perpetrator in a blanket of wet napkins, we quickly finished the rest of our meal standing up, picked up around the table and were gone in a flash.
(Note: As we always do with Timothy, we requested the bill to arrive with or before our food in case we needed a quick get away. Check.)
Staying at the food trough, Timothy has been playing with his hair. It’s adorable and in fact when he lifts his bangs in the air, he looks like the baby Pebbles from the ‘Flintstones’. The only wrinkle is that he mostly only plays with his hair when he’s eating, which means his hair is absorbing more nutrients than just those contained in his no tears Vidal Sassoon baby shampoo.
Timothy has had a bad cold for several days, with a deep cough. At bingo at the Basilica last night (where Timothy was up front helping us call out numbers), he let out a few louds barks that sounded a whole lot more like a grizzled old longshoreman than a pint sized red head.
On Tuesday, we visited a doctor who is a something of an expert with kids with Down syndrome. It was another chance to delve into THE QUESTION – ‘How much should we expect?’
I mean, ‘How high should we set the bar and how is he doing?’
Yes, it’s a question that every parent faces, but it feels very different for us with Timothy than it did with our two teenage daughters, who have faced few real challenges.
I’ll try to explain our perspective without confusing myself.
Since this Down syndrome thing is just two years old, it still feels fresh and scary and so it still takes on more weight that it should (or will in 5 or 10 years) when we think of Timothy. In other words, part of the reason it feels so different is because we are telling ourselves that Down syndrome is so different from typical kids and so it’s a self fulfilling prophecy.
But on the other hand, there are some true tough realities, delays and limitations here with Down syndrome that we can’t fix or deny.
And yet we want him to have an awesome and full life and as productive (meaning he pays for our delayed retirement) as he can, and we know that a positive attitude and high expectations can have a hugely positive impact on his development and his future.
It’s a messy balance – wanting to help him grow as far as possible and not knowing how serious his limitations are, and yet realizing that we’re still getting used to this rodeo.
Add to that the fact that there is a wide spectrum of ‘normal development’ for a typical kid (ie, typical kids walk at between 9 and 15 months), but we are told that the ‘normal spectrum’ for kids with Down syndrome (and maybe other disabilities) is far wider, which means that (unless your child is very clearly struggling in an area) the baseline for understanding whether your kid is really ‘on track’ in different areas of development is fuzzy at best.
We know that Timothy is doing well and progressing, but we’ve been a little concerned that while he’s making many noises (just ask people at church last night) and is using sign language, he’s not really saying words, which might mean that he’s having some trouble communicating verbally.
We’ve talked with many people who know Timo and know well the development of kids with Downs, and they say he’s doing great and tell us stories of kids who said little to nothing for a long time but who learned to speak very well. And while a piece of us is relieved to hear those assurances, a bigger piece of us is afraid that we could have an issue that we’re not addressing. We know that overall he’s doing awesome, but we just want to know what the deal is with his speech. But in fairness to the experts, as we note above, there isn’t a simple answer for our question. And we understand that, but those lack of concrete answers cause you a lot of anxiety as a parent worrying about your kid.
So we decided that it couldn’t hurt to get Timothy some speech therapy, which he is now getting 2 days a week at pre-school, and to be more deliberate in working with him on his verbal communication.
Now, all of us have situations where we’re lacking the simple, clear answers we want — whether it’s a health diagnosis or an investment or a relationship or Notre Dame football. And that’s just the way it is. Hopefully, over time, those answers show up, but sometimes it’s not as quickly as we’d like. And then it’s back on us, and hopefully we learn to be patient, not over worry about things we can’t control, and to focus our energy on making progress on the things that we can do something about.
Like trying to keep our own little cheeky monkey from getting us kicked out of every restaurant in town. That’s a good start.