Elisabeth got home from India last Friday and walked in her Edina High School graduation on Monday. We’re very proud of her for graduating and getting ready to go to Mount Holyoke College in the Fall. And we’re amazed at the courage and perseverance she showed to study in India for 10 months. It’s still hard to believe that she was gone for so long, and we’re enjoying hearing more about her Indian experience as she settles back into life in the United States.
Speaking of our revolving door of family members, we’re at the end of the 10 week stay of our Italian exchange student, Giuliano, who also graduated. It’s been fun to host and get to know him and he’s been a good big brother to Timothy. We’ll miss Giuliano but we look forward to visiting him soon. He also wants to come back to the States for college — just not someplace as cold as Minnesota.
As we work with Timothy on speech development, one element of focus is helping him learn to control his breathing. To express certain letters and sounds, we expel air from the back of our throat (try saying the word ‘hurry’). And so last Fall Timothy’s speech therapist at Fraser suggested that we work with him on expelling or exhaling air. We tried blowing bubbles but he just wanted to pop them. We tried blowing at cotton balls but he put them in his mouth. Finally, Laura bought Timothy a little boat whistle last Christmas and we’ve been working with him on blowing into the whistle. And in the past few months, our wee pied piper has perfected blowing a good sound out of the whistle.
His routine goes something like this:
1) Blow into boat whistle for a few seconds
2) Throw whistle to the floor
3) Thrust arms into the air in celebration and exult loudly
4) Look down on the ground for the discarded whistle
5) Pick up boat whistle, rinse and repeat
While it would be nice to see more exhale practice, we love to see the progress and his creative celebrations.
As a footnote, we’ve also started noticing him spitting up his milk more often and we couldn’t figured out why. Then we realized that Timothy has discovered a new application. These exhaling skills that allow him to blow air out of his mouth will also make it possible to blow milk and other liquids out that same front door. Pretty fun…. as long as that wet phase passes quickly.
And whistling and milk spitting are not the only new sports in our house. Car seat wrestling has returned as a regularly scheduled activity (not that it ever totally disappeared). If Timothy has been in his car seat a few times in a day, or is in a crabby mood, he has a myriad of tricks to make it difficult to get him secured in his car seat. From using his leg to grab onto the outside of the car to doing some kind of fraternity gator dance flopping motion, the boy has talent.
And this is real wrestling — not the fake wrestling stuff where you know beforehand who’s going to win. The one constant is that any neighbors or supermarket parking lot patrons within earshot must shake their heads and chuckle and think ‘oh those poor new parents’.
It’s been tricky to put into perspective our experience with Timothy and articulate how our time with him compares with our early years with our now teenage daughters.
And as I often note, I don’t claim to speak for families with disabilities. I just want to share our own experiences with our little scrapper with Down syndrome; hoping to maximize the number of people who are left educated and/ or laughing while minimizing the number of people that I offend. Let’s see how well that works…
In a funny twist, I have sometimes run into families with kids with disabilities who seem intent on explaining that we’re all just dealing with exactly the same things as ‘typical kids’. And I also run into ‘typical families’ who express admiration at how brave we are for dealing with the very tough challenges of a kid with Down syndrome. It’s important to note that both of these comments are made with the best intentions and to be supportive — just coming from two different angles. And the truth for us is somewhere in between those two angles (which, if I remember my geometry correctly, means we’re sitting on a line).
The reality is that most of the things of day to day life for Timothy — eating, exploring, climbing up furniture — are just like our girls. But when it comes to working to meet development milestones (walking, talking), school and his future, it’s pretty darn different from our prior experience (in fact if you ask Timothy, he’d probably say that it would’ve been nice to find parents with a little more on the job experience, since I think that he can sometimes sense that we’re reading the rules on the back of the box while we’re playing the game).
Truly, the biggest challenge with Timothy is the Bermuda Triangle of an active nearly 3 year old (who can smell fatigue) who is paired up with two quickly tiring 49 year old parents. And that has nothing to do with Down syndrome.
(Timothy at the Edina Art Fair with artist Guilloume)
But if I’m honest, I have to admit that working toward the development milestones, school and future all consume much more time, energy and worry for us than I expected.
Setting aside school and worries about Timothy’s future, I’ll touch a little on development milestones.
We spend a bunch of time meeting with and working with Timothy’s therapists and doctors and teachers (and are lucky to work with great people). We’re putting together goals and plans for his different areas of development, working with Timothy at home to make progress toward those goals and then meeting with the specialists to talk about how we’re doing and our next set of goals and plans. It can all be really tiring, especially when progress is hard to forecast and you worry if you’re not seeing tangible progress.
(And this is not a ‘boo hoo’ for us. This is the deal for most families we know who have kids with disabilities, and we know many many families dealing with way tougher things than we are).
Anyway, in addition to the reality of time and attention needed for Timothy’s development, and that we’re getting old, there’s the fact that we just didn’t have to go through these steps with our two girls — who seemed to just start walking and talking on their own. And so expectations from our past can make the Timothy experience feel even more different and a little scarier and sometimes overwhelming than it probably could be.
This reminds me of a recent conversation I had with a friend, where we talked about the challenges of raising young Timothy, but also discussed the touchy and possibly crass question, ‘so what are the benefits of this situation with Timothy?’
And my simple answer would be growth and love.
Now, for any of us, it’s not the easy times that help us grow. It’s the stuff that make us struggle a little and stretches us, which is not always fun or pretty. And that’s why it ain’t always gummy bears and unicorns back at the Lee ranch. We’re all just doing our best and trying not to get on each other’s nerves.
But like many challenging situations that any of us might face, like a job loss or a serious illness in the family, our three years with Timothy have ultimately allowed us to build a greater sense of gratitude, empathy, resiliency and faith, and a bunch of wisdom and perspective. And although it would be wise to confirm this with my wife, I believe that I’m a better father, spouse, leader, citizen, etc than I was a few years ago thanks to the TRBL rodeo.
And we’ve also grown closer as a family (though note the aforementioned gummy bears) and we’ve learned to ask for help — and in the process have been supported by a great group of family and friends. But the best part of the deal is that as we go through this crazy experience, we get to hang out with this funny little red headed boy who lights up our hearts.
(Guillaume still acting as T’s wingman)
And that’s why, on the one hand, we can whine about the day to day fatigue and worries and the extra time that we (thank you, Laura) put in, and on the other hand we can say proudly that we wouldn’t change a thing and would do it all over again….
…though it wouldn’t be the end of the world if the car seat wrestling pied piper would cut down on that milk spitting thing. Even just a little bit.
Whistling with gratitude,