Thank you for your patience last week during my absence – sometimes bronchitis happens and sometimes (usually, at our house) it’s Mom who gets it. Sigh.
All the feels today, my friends. All the feels.
I suspect there’s an outdated stereotype about families with special needs – that we keep to ourselves, staying home most of the time, not able to participate fully in the community and whatnot. For those of you who’ve been reading here for awhile, I hope we’ve shown you that’s not true. Case in point: the past couple of weeks.
We started out with Sarah Kate’s show choir finale the first Friday of May. Although she didn’t have any solos in the group numbers like last year, she did perform a solo special – “Lost Boy” by Ruth B. She was a wee bit nervous and shaky in the beginning, but warmed up pretty quickly, hitting just the right tone, pensive and honest, to fit the song.
Choreography is always a challenge, but she does what she can and improvises when she can’t. I didn’t take a lot of photos of the choreography, but I did grab this one of her leading the “rollercoaster” during Footloose.
Show choir this year has been a mixed bag, for reasons I won’t go into here, and she doesn’t plan to return to it this fall. However, I’m proud of the effort she put forth and the young lady she is becoming through participation in activities that seem like they would be far outside her wheelhouse.
The next morning, Nathan had t-ball.
It went the way it always goes – he relishes batting, running to first base, and running home, and obliges us with a variety of levels of commitment when it comes to running from second to third.
Following one of his at-bats, he was such a reluctant second-to-third runner that despite multiple errors he still didn’t make it to third base safely. The umpire called him safe, anyway, because with any semblance of a semi-reasonable effort he would have been, but I’d had enough of his shenanigans and promptly yanked him off the field. A lot of things can be allowed to slide (see what I did there?), but not everything.
There may have also been a talking-to about paying something resembling attention in the outfield…
Nathan’s year end IEP meeting was on Thursday morning, which I’d love to say more about but probably won’t – at least not right now. Overall, it was positive and I am cautiously optimistic for the new school year.
The middle school band spring concert was on Thursday evening.
Sarah Kate proudly sat in the second chair (which she had successfully defended from a challenge just the day before), which is an accomplishment in itself. I don’t talk about it a lot here, as it’s a small issue in the grand scheme of things, but because she actually has spastic triplegia (not diplegia) her dexterity in her right hand is not great – fingering a clarinet at all is a challenge, much less doing it well!
It’s hard to imagine now, but she contemplated not returning to band this year. A lot of kids who start out in sixth grade band decide they hate it early on but are forced by their parents to stick it out through the end of the school year. I’m not against that philosophy of parenting, but the unfortunate side effect is that the kids who don’t want to be there take a lot of fun out of it for the kids who do. BUT…she stayed in and now she loves it. In fact, she said this weekend that of her current three musical pursuits, band is her favorite.
I’m trying not to look ahead to a little over a year from now when there’s marching involved. We’ll cross that bridge when we come to it.
Friday was when things started to head off the rails (at least for this mom who was not quite well yet and in need of rest). Nathan’s school had Field Day, then he had a t-ball game and Sarah Kate was to be in a showcase with other students of her voice coach.
This is the point in the story where you should suggest that it’s okay for him to miss a game, but it was The Last Game and I just couldn’t do that – especially since both of our coaches (the same ones he had in the fall) will be moving up next season.
For much of it, The Last Game went the way his games usually go…
…he did his odd balancing thing as he reached home plate…
…and he got the most joy out of batting, stretching it out as long as possible with fake strikes and fouls..
…but unlike every other game he’s ever played in, he ACTUALLY FIELDED A BALL. And not only did he field a ball, his effort in fielding the ball ACTUALLY PRODUCED AN OUT. I don’t have any photos (and honestly, I’m sort of glad because enjoying the moment was better).
Here’s how it went down: Nathan was sitting, as per usual, in the outfield. Batter hit the ball and it got through the infield, rolled literally right into his lap, then popped over onto the grass to his right. He picked it up, looked at the second baseman who put his hand out, and tossed it to him. The second baseman then ran and touched the bag before the runner made it there.
It was glorious and hilarious at the same time.
We went directly from the ballpark to the vocal showcase. Sarah Kate was nervous – very nervous. Many of the other voice students have been in training for years and have performed in dozens of musical theater productions. Some of them have even been tapped for prestigious music and theater programs in major cities, and the voice coach’s own son was a contestant on The Voice.
She sang American Honey by Lady Antebellum, the only country song on a program dominated by musical theater with a few pop songs and original works thrown in. Fortunately, it wasn’t a competition, the crowd was friendly to new talent, and she held her own. I wasn’t sure going in if the setting would encourage her or discourage her, but she came away with a renewed passion for voice and wants to continue with it in the fall.
We’ve discussed what she might do next vocally, and for the summer the plan is to relax and hit the Friday night karaoke at the bowling alley as often as possible. I’d like for her to try a musical again (or at least a camp), but she’s resistant at the moment, for good reason, so we’ll have to wait and see.
As for Nathan, he will still be young enough for t-ball through the fall, and the league commissioner has made it clear that he won’t have to move up even when he turns seven if we want him to stay in t-ball.
In the individual moments of ballgames and performances it’s sometimes hard to see past the challenges – Sarah Kate has to work harder for the same result as others, and while t-ball is more about having fun than about competition and skill, Nathan’s differences are impossible to ignore. But there were times when I wouldn’t have expected either of them to be a part of mainstream activities.
Inclusion is not defined as opening the doors to let disabled individuals enter, but welcoming them and having them participate fully. It is not easy to take the extra steps toward true inclusion, but it is important for the child struggling to get a foot in the door, and it’s a good lesson for typical kids to witness, as well.
Not everyone would encourage or Sarah Kate or Nathan’s participation, of course, but we’ve been fortunate through years to have had people placed in our path who understood what it would take and were willing to go that extra mile.
Andi,
I’ve debated whether to post the following link so many times, but today’s post seemed to lend itself to it. The following is an article about a local boy that I thought you might be interested in reading about. He has cerebral palsy runs on the local track & field team. http://espn.go.com/sports/endurance/story/_/id/14104285/endurance-sports-justin-gallegos-overcoming-cerebral-palsy-inspire-fellow-high-school-runners
And in case you’re worried that it’s a spam link you can also google Justin Gallegos track and will probably come up with the same article, a youtube video, and a GoFundMe site where he’s trying to get people to help him raise money to help him attend the University of Oregon.
Just a thought: If Sarah Kate wants to continue singing and you’re thinking about voice lessons, it might be a good idea to hold off for a few more years. I took voice lessons starting my freshman year of high school, which was a good idea, because my voice changed radically from 8th to 9th grade! Classical voice technique will serve you well, no matter what kind of singing you want to do (It’s actually the reason I can’t watch The Voice or American Idol, when it was on–because of the lack of technique. GRR FACE!) And a “regular” choir might also be a good idea–you can do so much more, vocally, than in a show choir. I never did show choir because the director was worried about how I’d do, so I’m thrilled that this director even gave Sarah Kate the chance–that’s something my choir director never did (with me and with a few other kids who had physical issues). Anyway, this was really random, I know, but I just wanted to throw out my experience with honor choirs/voice lessons/etc. 🙂
Those are great thoughts, Emily, thank you! She doesn’t have a lot of options right now in our area – most of the opportunities are musicals and then of course this particular show choir (which is not really what I think of when I hear that term, but I digress…). I’m hoping there will be other choral-only opportunities coming up, but right now her only other option is the school choir, and she can’t do both that and band. She already does take voice lessons, but unlike a lot of the students she is singing things like American Honey and Lost Boy, not more complex pieces like you would find in theater, etc.
Ugh, I HATE it when school put band and choir opposite each other! We didn’t have that issue in my high school–in fact, my best friend was in both choir and band. Sigh. Is she anti-musical? This is a thing I do not know. 🙂 (Right now, for example, I have three Broadway show cards over my head……I live for musicals.)
I was also a clarinetist, so maybe Sarah Kate and I are twinsies! I decided to do choir because I didn’t want to march in the rain and snow, and band here is LIFE. The band has gone to the Rose Bowl, Macy’s, etc. Both my siblings did it, and it just consumes everything in its wake. So I chose choir and it was a much better decision for me.
I hate it, too! Especially since PE is basically a waste of time for her Every. Single. Day. She is not anti-musical (she really likes to watch them!) but she did one play and didn’t love it. I just sent off the registration for a two-week theater camp production of Godspell, Jr., this summer so we’ll see what she thinks about it and go from there.
Ahhhh OK. Yeah a bad first experience can sour you!
That’s crazy that she has to go to gym every day. I mean, whaaaaaa.
Love this post. These Sligh children are wonderful. As a former marching band clarinetist — one thing to think about. . . . If the “marching” part of a marching band is too much (although I have no doubt Sarah Kate could find a way if she wanted to), I recall that many of the wind players from our concert band moved to the “pit band” during marching season. For example, a marching band typically does not include oboes, so the oboe players moved to the percussion section during marching season and played a variety of percussion instruments up front. The percussion section itself is typically divided into the drum line (that marches) and the pit band.
We are lucky in that we have friends with a son in “the pit” so I’ve had that in the back of mind for quite awhile. I imagine when the time comes that’s probably what she will end up doing, whether she actually plays percussion or is just placed among them to play her clarinet. We’ll cross that bridge when we come to it!
I am a flutist and self-taught vocalist (range is B2-C5). When I first started, I could barely hold up my flute for more than ten seconds. Now, I can hold it up in marching posture for about ten minutes. (No known physical problem, just weak and not used to the flute) I’m taking handbells next year (conservatory requirements :p); piano lesson will aid in that. I wish Sarah Kate luck with her musical endeavors.
Is Sarah Kate into vocaloid? I recommend Lost One’s Weeping, World Domination-How To, Terminating the World, A Boy and a Girl Chameleon Symptom, Drowning in a Wave of Sadness, A Realistic Logical Ideologist, Classroom Bystander, World’s End Dancehall, and Reboot.
I’ve never heard of Vocaloid, so I’m guessing not!
Please tell her about these songs.
Hello Andi!
Thought I would leave some links from Teen Cerebral Palsy from band marchers over the past few years [2008-2012]. Teen Cerebral Palsy was run by Katy Fetters. Regular contributors include Jessica P.
http://teencerebralpalsy.com/marching-band-with-cp-or-why-walking-in-a-straight-line-is-harder-than-it-looks/
http://teencerebralpalsy.com/its-okay-to-be-different/
http://teencerebralpalsy.com/team-teencp-update-and-guest-blogger-natalie/
http://teencerebralpalsy.com/the-importance-of-relating/ [from Zachary Fennell]
FlutistPride: I saw that bit about the handbell requirements.
These are great! I read through them myself and will also forward on to Sarah Kate!
As you might have noticed, Natalie was the writer of the two links.
One link which introduced her to Katy Fetters/TCP readers and one about her experience.
Between 2012 and 2015 there were lots of guests who might enjoy talking to and with Sarah Kate.
Kasha’s writing is really great.
There was someone in theatre called Annie. And she was in the musical Annie.
It’s hard when you’re trying to get information through to trusted ones – or getting things past the gatekeeper. [was wondering what SK did with Twitter and Facebook and what her friends were doing or if the musical groups organises through].
And there is a difference between understanding and encouraging.
AMERICAN HONEY is wonderful. Have known several Lady Antebellum fans in my time.
In our local paper we had a Tourettic man sing for THE VOICE and a stuttering man who is going through the McGuire programme. [Lysterfield is a hot bed of talent].
Thinking of Marcus Sikora and his musical ways. I don’t know whether he and his brother Quinn did a sport…