Back at the end of July and beginning of Aug, Kayla and I headed to Nashville, TN for the National Miss Amazing Summit.
South Carolina didn't have a state event; instead it was just video submissions. Kayla and another teen represented SC in the Teen category.
This was Kayla's first time going to a Miss Amazing event and she had a blast. She enjoyed meeting so many other representatives from all over the U.S.
There is also a pretty cool story about the dress she is wearing. The dress has come to be called "The Sisterhood of the Traveling Dress" and it has been passed around between girls in the Down syndrome community with the goal of being worn in every state.
Kayla and Micky bonded over their love of Hamilton (as you can see in their pose below!)
Kayla's "Passion Performance" was dancing to "My Shot" from... yep, Hamilton! I just love her confidence on stage! This video was from her rehearsal:
Kayla recently joined the Special Olympics Track team. She also recently got a fitness watch. The watch can track walking, running, biking, and sleeping. She likes to press the "bike" icon before we head out on our usual morning bike ride (PE time!) even once coming to a sudden stop in front of me and yelling "I forgot to start my watch! (on bike mode)"
Oh this child of mine cracks me up. At this most recent track training session she was lined up to run ... and she got distracted making sure she was putting her watch to the "run" setting. She completely ignores the "GO" and instead stands at the line making sure she is getting her watch set correctly. It's not that she didn't hear the "GO", it's not that she couldn't hear the "Kayla, go!" ... it's that she wouldn't go until her watch was ready for "RUN". She is definitely on her own time, haha! Good thing this wasn't an actual competition!
As much as that first video makes me laugh, this next video warms my heart. As she is concentrating on her own run she makes sure to encourage and cheer on the runners coming the opposite way.
This is her first year on the track team (she has previously been on the Running Clubs at her elementary and middle schools) but she generally doesn't seem to have a lot of stamina to keep running ... she's more like a short sprinter and then a walker. So I was surprised when I saw her go the distance during this training run and not stop to walk at all (twice). I was also surprised when I asked her if she wanted to join the track team and she enthusiastically responded with, "Yeah, I love to run!" Cue to me giving her the side-eye look.
I'm excited to see how far she'll progress during training and what she'll do at Spring Games!
It goes without saying that I'm a Red Sox fan. Unfortunately for me, the local minor league team here in Charleston (the RiverDogs) are a Yankee affiliate. We have gone to several games though and the kids enjoy it. A few of those games the RiverDogs have played the Greenville Drive. The Drive happen to be a minor league affiliate of the Red Sox. So it's cool to go to a Boston/New York rivalry game - minor league style.
Greenville is only 3 hrs away so this summer we went to see a game in their stadium - which is built after Fenway Park - Pesky's Pole and the Green Monster to boot!
A tradition at Fenway Park is the singing of the (unofficially official) anthem of the Red Sox: Sweet Caroline by Neil Diamond. It's played at every game. They do the same at the Greenville Drive games, too. It's not quite like being at Fenway Park, but for living in SC it's as close as I'll get.
Kayla got into the song - and as you can see by the video - she makes a friend wherever she goes!
Kayla recently had the opportunity to be in a fashion show - and this is something she wouldn't ever pass up. Have I mentioned that she loves being on stage?! She does not get that from me. I don't think she knows the feeling of being self-conscious!
Here is a video montage of the event from Ashley's photographer.
Kayla had some fun other than being on the runway - she watched some firefighter's work the runway, too! Kayla and I walked around to see some of the other vendors at the show and circled back around to Ashley by Design. Kayla was told that Ashley was back at the stage getting ready to watch the firefighters do a fashion show and she made her way over to sit by Ashley to watch this show with her.
They actually did model some casual and formal wear before donning their uniforms! This show was part of a charity event - the firemen were raising money for the Ronald McDonald House. I had to get a few pictures of Kayla with them; mostly for my sister who is also a fireman!
Kayla's tried archery the past few years at a couple of the summer camps she attends and has generally seemed to enjoy it.
Last year she signed up to be on the archery team at school. I knew nothing about what this would entail. I've never been to an archery tournament before - I didn't know anything about the tournaments, how they work, how they are run; and I didn't know how Kayla would handle all of that. Shooting at a tournament is different than shooting for fun at camp.
The coach for her school team is a phenomenal coach. Truly, he's awesome. I don't know if he's ever coached a student with an intellectual disability (and pairing that with ADHD), but he treated Kayla as if she was capable; because she is capable and she can learn. He expected the same of her as he did everyone else, while also recognizing her limitations ("when she slows down and concentrates she's right on target!"). He is patient and encouraging and he just gets each of the archers individually. He learns their strengths and weaknesses. I'm so glad he sees the potential in all archers. And I do mean all. I have seen him give tips to archers on other teams after being at the line and watching them shoot.
Her school is part of the SC Archery in the Schools Program (which falls under NASP). This first year of participating in archery was a great experience - we found it to be inclusive and she was welcomed and accepted. Her lane mates (which were sometimes from other schools) were friendly and encouraging; and Joe and I both had someone come up to us and tell us how great it was to see her participating (one was a coach from another team who is also a Special Education teacher). There were high-fives from teammates, archers from other schools, and from DOR officials.
We also found archery, and SCNASP, to be accommodating to her needs.
When I say they've been accommodating I don't mean in the way of giving her extra arrows, or allowing her to shoot at only 10 meters instead of both 10 and 15 meters. No one felt sorry for her or gave her allowances because she has Down syndrome.
The accommodations were simple things like requesting she be on the left side of the lane so she can draw her arrows in front of her instead of having to reach behind her.
Her coach also went to the target with her to assist on the scorecard. This is an area where her convergence insufficiency comes into play. Here is what the scorecard looks like (like those standardized tests where you bubble in the answer.) Her eyes still have trouble teeming together and following across a line of text - especially if it's small and virtually no space between the lines. When we practiced filling out the scorecard I had my finger on the fourth line down and told her to bubble in a score of "6" - she circled the 6 on the third line. So I knew that keeping score (and you score the card of your lane mate, not your own) would be difficult for her to do.
Other than that she follows all the rules of a tournament just like everyone else and she learned all the rules and routines. She waits on the line for the whistle, once the whistle blows she nocks her arrow and shoots 5 arrows, she hangs her bow up. She stands back and waits for everyone to finish and listens for the 3 whistles to go retrieve the arrows from the target and put them back in her container. She gets her bow off the rack and stands at the line waiting for the whistle to begin the next round. I'm so proud of her for learning all of this to be able to participate in tournaments.
On her first tournament she scored a 36. As I mentioned, I knew nothing about archery or what a score means. To put that score in perspective a perfect score is 300. Ha! When I looked at what the rest of her teammates' scores were the next closest one to her was a 98 and everything else was in the 100s and 200s.
Her next tournament she finished with a score of 76! I couldn't believe how much she improved on her score from her first tournament and I was hoping that by the end of the season she would break into that 100 mark.
This happened at her 3rd tournament. She cracked 100 with a score of exactly 100. I was so, so excited and proud of her for reaching (what I considered) a milestone moment (score).
She had her highest score at Regional in Myrtle Beach with a 113.
The middle school team didn't qualify for State (or National) so it was just 2 more local tournaments to finish the season. Or so I thought.
At the beginning of summer her school team was asked if they would like to participate in the World tournament with another local school. The other school's team qualified for World, but didn't have enough archers to make a team to take to Orlando. So a handful of archers from Kayla's school, including Kayla, participated with this other school at the World tournament.
And Kayla? She knocked this tournament out of the ballpark! I'm talking about her own personal best. She didn't place even top 50 percent...but that's not what matters. What matters is doing her best and trying to improve on her score, and maybe her ranking, each time.
So remember Regional? Her high score of 113? She blew by that score.
She scored a 151!! 151 people! This is from someone who scored 36 on her first tournament and 6 tournaments later she had a 151! To say I was shocked at 151 is an understatement - I was hoping for maybe in the 120s, but not expecting 151. She also wasn't dead last in the ranking categories either. 21 girls finished below her for over all girls, 3 below her for all 7th grade girls, and 5 below her for middle school girls.
She received her first sports letter and pin for archery :)
This was taken last week while she was at Camp Victory Junction - I love this shot of her!
A quick shot while practicing at home:
I'm glad this has been such a positive experience and I'm so glad she had this opportunity to participate; I can't wait for the upcoming season!
Last Memorial Day, not the one that just passed, but the one in 2016, Kayla had a dance recital. That's how behind this post is - a whole year!
She did great with her recital the previous year - Coppeli - and I couldn't wait to see her shine again, and she didn't disappoint.
I didn't take any pictures of her dancing like I did before (it's easier to enjoy and actually watch her dance without concentrating on getting pictures). I did take a few before/after photos though - and her costume was so beautiful on her last year!
After her recital I posted this on Facebook:
"Proud mom tonight! Kayla may not be the most graceful dancer, she may be a step behind, or a beat ahead ... but she gives her all and she dances with joy. She dances with so much joy it radiates off her face.
At intermission someone came up to us to tell Kayla how well she did and that she told her husband that she just loves watching her dance because she smiles no matter what. The final dance production was a father-daughter dance and she had the best time. After the dance a lady came over to me and said that Kayla was her favorite of all the dancers during the father-daughter dance and it was such a joy to watch her dance.
Another lady came up to Kayla and asked if she could shake her hand - and said how great it was to watch her dance with such a big smile on her face the whole time.
On the way out a couple other people topped to say how precious she was dancing with her dad and how much they enjoyed watcher her dance because of how much fun she was having."
I had to keep my emotions (tears) in check because I know Kayla wasn't the best dancer - with her form or mechanics - but that's not what they noticed. They noticed her effort, her joy, and how much fun she was having just being up on stage dancing.
My mother-in-law took a couple of videos, but I don't know how to post them directly on my blog. She uploaded them directly to FB so I don't have a youtube link or anything to imbed on my blog and don't know how to get a video off FB. They videos are public, but I imagine you'd still need a FB account to view them.
We took a break from dance classes this year, but yesterday we were reading one of the American Girl stories and the character takes ballet and Kayla said, "I like ballet best." I asked her if she missed going to ballet and wanted to take classes again. She said yes, but made it clear it was to happen AFTER camp - nothing stands in the way of her summer sleep-away camp!
Guess we will get back in to the dance routine after summer!
Being Seen is a short film that is being screened in film festivals and has won several awards including one for Best Documentary.
This documentary aims to change the way people with developmental disabilities are viewed. The interviews with the people who have disabilities are funny, heart-wrenching, candid, and show the self-awareness they have regarding their disabilities.
From the opening scene I needed a tissue following this quote: "They don't understand what we're going through. Because they don't have a disability and they look at us and say we're not normal."
I am a parent raising a child with a disability, but Sallie is right, I will never understand what my child is going through as the person who has the disability. I will never be able to tell her "I understand." or "I know what it's like." as it relates to having Down syndrome or a disability and that makes me sad that I won't be able to identify with her in that way.
Kayla knows she has Down syndrome and she knows that means she has an extra chromosome. She doesn't seem to yet have an understanding of the broader sense of disability or how that relates to herself, or to society. She doesn't seem to have a self-awareness, yet, of how Down syndrome affects her. She has never talked in terms of Down syndrome or expressed any frustration with having Down syndrome ... and sometimes I wonder if she ever will ... will she ever have that kind of self-awareness of what it means to have a disability? Will she ever be able to express how Down syndrome impacts her life?
She has mentioned a few times lately "when I'm an adult like you I'll drive my car" and we'll cross that bridge when we come to it; but I wonder when we do will the realization hit her then?
It was certainly eye-opening for me to listen to these adults talk about their disabilities, but also their hopes and dreams.
I also needed a tissue warning when one of the guys was talking about losing his father; that obviously hit close to home for me.
The hope is for the film to be shown in smaller, more intimate screenings in communities everywhere as a way to foster meaningful conversation and tackle the challenges that face society's largest minority.
Kayla and I can be complete opposites in some ways.
Where she is outgoing and social, I am reserved and quiet.
Where she is self-confident, I am self-conscious.
Where she likes to be on stage and perform, I like to be in the back row, unnoticed.
So when her school's talent show was advertised I knew she would want to participate. I knew what song she would want to perform. I knew that she wouldn't care whether or not she could actually sing. I knew all she would care about was being up on that stage.
And I was right on all accounts: she did want to participate and she she did want to sing to "Let it Go." Yes, that song is still big at our house. Karaoke, CD, iPad, YouTube.
When Kayla sings Let It Go she doesn't just sing it, she acts out the whole scene from the movie when Elsa is singing: the hand movements as she's creating her ice castle, the removal of her gloves, her cape, the toss of her crown - Kayla mimics all of that and she's pretty on-cue with when to do those things during the specific parts of the song.
Right before the show the students rehearsed their act one time. During Kayla's rehearsal she used a hand-held mic and then afterwords I suggested she try the clip on mic since she uses both hands while singing the song (although she had no problem in rehearsal switching the mic back and forth I thought it might be easier if she didn't have to worry about the hand mic). She didn't get a chance to practice with the clip-on mic though before it was her turn.
So during her performance when she went to remove the cape she pulled on the string which tightened it up just enough that it didn't slip easily over her head - she's very routine-oriented and knew she was supposed to remove her cape, so in the video you can see her look at me with her palm up as if to say, "Now what am I supposed to do?" She eventually got it off and then it got tangled with her mic and that distraction threw her off. I should have left well enough alone and not said anything about switching mics!
She got back on track though and finished her routine (although I really wanted to ask if she could just start over!)
The audience gave her a standing ovation for getting through her little wardrobe malfunction!
I'm so in awe (and proud!) of her and her self-confidence to perform in front of others!
(At the very beginning she uses ASL to tell me to 'sit!')
In Social Studies Kayla's class is studying Ancient Greece. One of their assignments was to be assigned a Greek god or goddess and do a research report and a presentation as that god/goddess as part of a "Greek Museum" day.
Kayla's goddess was Eris: The Goddess of Chaos.
Her research paper was only a few paragraphs long, which was fine. It included the required elements of a cover page and the information of what they were the god/dess of, their symbol, parents, something important about them and a story or two. Some of the god/dess have enough stories to fill a book, and others only have a mere mention here or there. Kayla's goddess was one of those.
We got the gist of the report done by gathering information, but now came typing it up. I wanted Kayla to do as much of the project as she could - I didn't want to be the one typing for her. She doesn't have a lot of experience typing ... and she is definitely still in that one-finger-hunt-and-peck mode of typing. I knew this would take a while for her to type up a report.
I tried doing speech to text on my computer; however it failed to correctly type what she said about 99% of the time. It wasn't worth it if I had to correct just about everything it came up with. I'm sure there are better accessible ways for Kayla to successfully produce a typed report, but it wasn't happening on this one. (Any suggestions out there?)
It took us several days but she did type it out by herself, so even if I helped with the sentence structure, she did the actual work of typing the report.
Now for the Greek Museum presentation. It was basically the same as the report. They had to be dressed as their god/dess and when someone stepped on their 'button' they would come 'alive' and say who they were, what they were known for, and an interesting/important story.
Kayla knew the info about her goddess: Eris' parents, her symbol of a Golden Apple, and her story about the Golden Apple.
I went to school to watch her do her part in the museum. When I first walked in the room Kayla was giving her story, as were most of the other students, to small groups of Kindergartners. I listened to Kayla telling about Eris, the Goddess of Chaos and when she was done I was a little saddened because while I knew the story about Eris and the apple (having researched it with her) and what she was saying, I realized that none of those kids probably understood much of what she said or could tell you anything other than she had an apple.
She was participating and doing her part and knew her material ... but I didn't think it was getting across to the audience. I wished she could speak clearer. I wished she had better sentence structure. I wished the kids would know what she was talking about.
Then I walked around to listen to the rest of the 6th graders tell their stories. After hearing them tell their stories I had a revelation.
I only understood about 10% of what I heard regarding the Greek god/dess.
I realized that I couldn't understand most of what the other students were saying either. It was loud in the room with several presentations going on at once, they talked too quietly, they talked too quickly, they mumbled, they had full beards that covered their mouths which impeded their voice, they looked down to read off their index cards and their voices got lost.
I'm sure that the group of young students I first observed around Kayla probably didn't understand most of what any of the other students were telling them either. I mentally kicked myself for being overly critical of Kayla's performance ... for worrying too much.
Sometimes I need the reminder that she fits right in with the rest of her peers.
I took a video, but right before this I mentioned to her that one of her classmates was Ares, the God of War - and her brother. That little tidbit distracted her from what she had been saying so I tried to bring her back on track. I also missed the very beginning where she says that Zeus is her father and Hera is her mother.
The story she tells is that she was mad and jealous because she wasn't invited to a wedding so she threw the Golden Apple into the wedding and the apple had "For the fairest" on it.
Karen Gaffney is an open-water endurance swimmer (swam across Lake Tahoe, and as part of a 6-person team across the English Channel), President of a non-profit organization, and a self-advocate who has Down syndrome and speaks to a wide range of audiences across the country.
Who best to hear a talk about Down syndrome than someone who has Down syndrome?
This past May, Karen gave a TEDx Talk in Portland. Her talk "...explored the history, current state, and progress of Down syndrome."
Although what is there to say about Kayla that I haven't already said in 9 years of blogging?!
Kayla loves live theater. She seems to be interested in the whole aspect of it - her own role as well as the roles of the other actors. She enjoys watching live theater productions as much as she does being on stage and part of a play. We take the kids to a couple shows a year produced by the Charleston Stage and they always have a great time.
The past few years (3 for Kayla, 2 for Lucas) they've also participated in Missoula Children's Theater; the traveling company goes to military bases and in one week's time the kids perform their play.
This past summer they were in a production of The Little Mermaid.
These plays are half-musicals with lots of group songs throughout the play as well. Kayla's speech is such that she can't quite keep up with the fast-paced lyrics of a song, but she generally gets the chorus down pretty well. She can't hold a tune - just like her mother - but unlike her mother she doesn't care and won't lip sync. I love that she doesn't have any insecurities about this and isn't self-conscious when she is on the stage.
In this video clip she did say her first line too quickly - she said it at the same time Lucas was supposed to say his line (and she did so well during all the rehearsals and when we practiced at home - she knew her line was right after his, but got too excited.), but she nailed her next line right on cue.
I'm glad that she has found something she has so much fun doing.
After my dad passed away I went through his computer to find photos for the slideshow at his service. I found two videos he took while visiting us in SC. I didn't know he had taken videos while Kayla was in the jump castle, but I'm glad I found them because in the videos he is calling out for Kayla, again and again. It's not much, but it's his voice and I only have a handful of videos of my dad.
Kayla was born in NM and my dad lived in FL. A few hours after she was born I called to tell him the news.
I didn't know how, or when, to tell him about the Down syndrome diagnosis. He already had a plane ticket bought for shortly after my due date so he would be visiting us within a couple of weeks. I didn't want to wait though, I felt like I needed to get it over with.
After the exclamations of a new granddaughter, and the details surrounding her birth, her name and stats and congratulations, I told him. I don't remember exactly how; I think I just said she had Down syndrome, or they thought she had Down syndrome.
It wasn't confirmed yet because they still had to do a blood test, but I knew; I knew by just looking at her.
His response wasn't what I expected. I remember him asking what that meant. In my head I was saying, "What do you mean what does that mean? She has Down syndrome! I don't know what that means, but it's Down syndrome!" Of course I didn't say that to him. I think I managed to say, "I don't know, it's Down syndrome, you know, like Corky from that show we used to watch Life Goes On."
His response was, "Ok, so?"
After giving birth your emotions are all over the place, like a roller coaster. Again, in my mind I felt frustrated with his lack of reaction to this news, with his nonchalance. Why wasn't he upset, or shocked, or I don't know, mourning? This was sad news wasn't it? Getting a diagnosis of Down syndrome is bad news isn't it? Shouldn't he be saying something else?
What he asked me was, "She's ok isn't she? She's healthy?"
Me, "Well yeah, I guess so." Me, inside my head, "But I'm taking home a daughter with Down syndrome! It wasn't supposed to work this way."
He didn't linger on this fact, he brought the conversation back around to his visit. He was so excited and couldn't wait to see her, and hold her. I could hear the smile in his voice as he talked about Kayla. As he talked about his firstborn just giving birth to her firstborn. I could tell his smile was from ear to ear. He was already a proud grandfather.
He teared up the first time he held her.
As far as I knew he was never upset over Kayla's diagnosis (unless he hid it from me and didn't want me to know.). He never got upset or cried over the grandchild he thought he was going to have, he never had to 'come to grips' with this news ... because he just accepted it. He accepted it as readily and easily as he just accepted when I told him I had just given birth to a daughter (we didn't know the gender until her birth).
He just accepted that Kayla had Down syndrome without question.
Down syndrome was what she had, but what he had was a new granddaughter - and that was all that mattered to him.
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