Sometimes great moments in life are huge and over the top like winning the lottery or finishing a marathon, etc. Other times, they are quiet and small, so you almost trip over them, or miss them all together. That’s what happened to me last week – I was so preoccupied with “stuff” that I almost missed something monumental. Now that I’ve had a few days to ponder the awesomeness of it all, I woke up today compelled to write it down just so that I can reference this story when we hit a more challenging fork in the road- and if you’ve ever visited the red couch before, you know it’s coming!
Here’s the deal – I don’t like assessments. As a parent of 3 – 2 with ASD, I have learned to dislike any type of testing and reviewing of “progress” as measured by any number of tests. No matter how jazzed I get about what we as parents know our kids are achieving and learning, those damn percentages and age equivalences just make me sad. And yes, I know that my kids, heck – all kids, are more than a test score, but sometimes, it still stings more than I’d like it to.
With Elliott finishing up his first year in public school, it was time for our first annual IEP review for him. I don’t know why – but even the letters IEP just make me uncomfortable. The year has had a great number of challenges for the E man, and while some of what he’s accomplished has been pretty amazing – going from nothing larger than a one-room educational setting to feeling comfortable navigating his own elementary school complete with a lunchroom and recess playground (no easy task when you have serious social challenges and are not thrilled about change), academically, his gains were fairly minimal. I suspected that would be the case – especially as his annual assessments at the Univ. of MN indicated as much just a few months ago. Still – not easy news to digest.
Not a day goes by that I’m not researching reading comprehension programs, reading a new book, trying a new technique, asking E’s tutors to try a new approach, going back and reviewing something we tried years earlier that maybe he just wasn’t ready for, etc. in an effort to finally find a way to tackle his reading comprehension road block that keeps him testing at the 1st grade level. Ugh. It can be exhausting and frankly, a little depressing.
Then there’s my sweet Ada. Last week was a big week for her as well. Not only did we have her 6-month review for therapy, where we learned that we are beginning a long, slow fade of her therapy services as she begins Kindergarten this fall, but she also had abdominal hernia surgery so that she can finally wear the tankini’s that she so adores.
Lots of assessments, lots of meetings & appointments, and Henry’s last spelling test of the year. Henry is amazing at many things (especially now that we have the iRobot Roomba to use as incentive/bribery to hold over him) but spelling is not one of them. Can’t lie – it will be nice to have a bit of a break from spelling practice.
In spite of our crazy week, we’ve been excited to participate in our medical clinic’s new “Family Exercise Night” on Tuesday evenings. Each week, we gather as a group to walk/run together as we gradually increase our mileage in hopes of eventually reaching the 3 mile mark. Gretchen (our fearless leader) has a hope of having us participate as a clinic team in the Twin Cities Marathon family event day 5K, in addition to promoting health and fitness for families (she even hands out fun healthy recipes each week!)
Every week, there are different people/families that participate, though there are a few core folks who are usually there. And believe me when I say that when this idea first surfaced, I thought for certain we would go one time, and never do it again. Certainly, one of the kids would have a challenge too great to prevent us from taking part. There are so many ways this could have gone wrong – different routes every week (always difficult for Elliott), obsessions with stoplights (Elliott), staying with the group (Ada), darting out in front of vehicles (Ada), only listening to his iPod and not interacting with the group (Henry), social interactions with new and different people each week (all of us in our own way). I’m happy to tell you that I was wrong – in fact, wrong in a big way.
I kind of get teary even thinking about how far we have come since this started in April – but it is the kind of monumental stuff that sort of sneaks up on you. No, not everyone is at their best every week, and yes, sometimes E gets a little funky about the talking stoplights on Hwy. 13, but guess what – we just work through the hard stuff as a large group, and guess what else – we’re not the only ones with challenges. Others have darted too quickly across a street, or had to learn to stay in the white lines on cross-walks, etc. Some people are slower and some are faster, and we need to wait for one another before crossing streets and be cool with it. We get to chat with different people every week, and practice being social as a family with other families who have their own issues (this is not a special needs group – but let’s just say the special needs community is well represented in a myriad of ways). We’re exercising – but really, it’s so much more than that. It’s a great big learning opportunity that happens to be fun and healthy – and when the heck does that ever happen?
Best of all – it’s now our kids favorite part of the week. They can’t wait until Tuesday, when they get to lace up their running shoes, and head to the clinic to see what route Gretchen has planned for us that week.
So last week, with my mind pre-occupied with the craziness of our world, we loaded up the van and headed down to the clinic on Tuesday night for exercise as usual. It was, as always, awesome and crazy and fun and filled with learning opportunities for our off-spring. Because the week was nuts, I had not made dinner, and during our walk, learned that most of the other families had not either. Somehow, we all collectively decided that we should all go to Wendy’s after our 2.75 mile walk, and while the idea of eating fries after all that exercise might seem counter-intuitive, it was one of the most awesome experiences our family has ever encountered.
Everyone ordered, and because it was not busy, we sort of had the big room to ourselves. Get this – we had an adult table and a kid table, and everyone was amazing! As I sat eating my spicy chicken sandwich, I just remember looking over, and watching all the kids talking together, playing together, getting to know one another, and having genuine fun. This might be the kind of experience lots of families are able to take for granted, but not ours! For us, it was earth shattering stuff. This amazing group of young people, with a variety of strengths and challenges, had a great time hanging out together after accomplishing 2.75 miles on the open road (well, ok, more accurately the sidewalks of Burnsville). Heck, we were even able to converse as adults – that’s crazy cool!
So much for that “minimal progress made” IEP. It might not be measurable according to standardized tests, but small miracles do happen – apparently for us at Wendy’s!