Included In Archery

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!

Accommodation for One Benefits Others

An example of when an accommodation for one benefits others.

Kayla was in a drama camp this summer. On the first day she came home with her script. I immediately realized this wouldn't work very well for Kayla. Although her part was highlighted, I knew it was going to be difficult for her to follow along.

The next day I asked if it was possible to enlarge the script. Because of Kayla's convergence insufficiency she has trouble reading such small print and small spacing; her eyes don't track as well and she tends to skip lines if not big enough.

The instructor said she noticed her doing that (skipping lines) the day before. Then she said this was a great idea for not only Kayla, but for other younger kids in the camp who are just learning to read. By the end of that day she had their parts enlarged, and by the next day the whole script was enlarged for the whole cast.

As you can see by the picture on the right that script was so much easier to read and follow along with the play.



 

Vision Therapy, Part III

Following up from my posts about a New Diagnosis and Convergence Insufficiency...

Our initial consultation with the vision therapist was interesting and eye-opening. It convinced me that CI really has been affecting Kayla.

She did several types of tests with Kayla. In one of them she had a peg-type board with small pegs. The therapist had 7 pegs and gave Kayla 7 pegs. The therapist made a simple design on her board and Kayla was supposed to copy it. She just couldn't. No matter how much instruction she gave Kayla, Kayla just didn't seem able to copy the pattern. The therapist did another design with only 3 pegs and Kayla had trouble with that one, too.

Although I suspect that maybe Kayla was frustrated with not being able to complete the task the first time with the 7 pegs since she didn't seem to really be making an effort with the 3 pegs. She did a lot of avoidance tactics or using more pegs than she was supposed to. She seemed to be purposefully not doing what I think she could have done.

The therapist explained to me how CI can make it harder to copy simple patterns (but of course I don't remember how she explained it, so I can't explain it myself!)

Another test she did was have Kayla stand in front of her and she held up a bell attached to a string. One of Kayla's eyes was patched. She told Kayla to follow the bell. Kayla did. With her whole head. When she moved the bell to the side or up or down, Kayla's whole head moved along to follow it. When she finished she switched the patch to the other eye and I asked, "Is she supposed to be moving her head like that?" The therapist told me, "Shhh." Ha! I guess she wasn't supposed to give Kayla the instruction to keep her head still and only follow with her eyes; it was to see what she would naturally do. (Although given the instruction I think Kayla would have kept her head still, at least more so than what she did without being told.)

While standing there Kayla reached her hand out to rest it on the table to her right side. The therapist took her hand off and told Kayla she didn't need to hold up the table. Then a few seconds later Kayla reached out with her left hand to put it on the desk on her left side. Again the therapist didn't want her leaning, or resting, her hand on something. She just wanted Kayla to stand up straight with hands at her side. I didn't realize this might mean something until later.

The therapist gave Kayla a pair of prism glasses to wear while she threw a tennis ball to her. Well, she sort of threw the ball to her. This ball is attached to a string that hangs from the ceiling. She threw the ball to Kayla from the front and then swung it around so it would come to Kayla from the left and right sides.

Kayla caught the ball, I think about 99% of the time. And she probably did this about 10x. She caught the ball with intent and accuracy, her timing was spot-on, she caught it between her hands away from her body instead of cradling the ball and bringing it in to her chest.

I cried. I sat there and watched my daughter catch this ball over and over and over again ... and I cried. I have never seen Kayla catch a ball like that before. Not to say that she can't catch a ball. She can. Just not like she was doing in the office. She doesn't usually catch with much finesse, her timing is a beat off, and it seems more like luck when she does catch the ball. She fumbles it with her hands all over the ball and brings it in to her body to maintain the catch.

I can not describe the fluidity and accuracy of how she was catching this ball. Maybe it was the way this ball was attached with a string instead of a typical free-flowing ball, I don't know. All I know is I've never seen her catch like that before.

The therapist explained that sometimes kids with CI are either centrally-focused or peripherally-focused. If you're centrally-focused then you don't see things peripherally and the peripheral prism glasses can open up the world to you. She said centrally-focused kids don't know where their body is in space and so they are very touchy ... needing to touch everything to ground themselves in space (flash back to when Kayla was in the smaller office and automatically reached out to touch the table when she was just standing there following the bell.) Centrally-focused kids also are easily distracted. Because they don't have that peripheral vision they have to look up and move their head around with any little thing that comes in their field of vision, or hear something, because they can't see it peripherally (that sounds like Kayla too.)

If only it were that easy to say Kayla was centrally-focused and needed this type of prism lenses. But no, that doesn't appear to be the answer to any of her issues! I thought for sure it would be after seeing the way Kayla caught the ball with the glasses on.

There is no specific test to determine if a child is centrally- or peripherally-focused. It's based on the therapists' observation of each child as they are wearing each type of prism lenses. Most kids, if they are one or the other, will 'calm down' significantly while wearing these glasses. They will be better able to focus. After Kayla had several therapy visits trying each of these glasses they didn't notice that either kind made much of a difference for her. She still might be one or the other (and I'm venturing to guess central seems to fit her) but having peripheral lenses didn't make it any easier for her to focus. I was so hoping that would be the magical answer to calming her down so she wasn't so easily distracted and could focus better. (Last year she was diagnosed with ADHD but we've been very hesitant to try any medications for now.)

The therapists have seen some improvement in what she's been able to do in therapy that she wasn't able to do when she first started in regards to eye tracking; so here's to hoping that this is all working ... and that reading and other skills will start to be easier for her.

Now to order her some glasses for the far-sightedness! Then comes the fun of getting her to wear them all the time and not lose them!

 

Convergence Insufficiency (Part II)

I was looking for answers to what was causing some of Kayla's issues, but when the optometrist said that glasses would make things clearer for her, but would not help her eyes work together and that the recommendation for vision therapy was two times a week in their office with home exercises, I admit I balked.

I immediately felt a bit stressed about the thought of going back and forth to this office, 30 minutes away, 2 times a week. I wanted the answer to be simple -that all she needed was glasses and that her other issues could be attributed to Down syndrome and the accompanying Intellectual Disability (ID).

I was slightly leery. How could they accurately test her for Convergence Insufficiency if she has an ID? What if she simply didn't understand what was being asked of her during those tests they were doing? I mentioned that to the doctor, but he said they did several eye tracking and teeming tests and her eyes were just not doing what they should be doing. One example was taking a pen and telling Kayla to keep her eyes on the pen and follow it all the way to her nose. Most people can force their eyes to stay on the object until it touches their nose. When the pen reached a certain space from Kayla's nose her eyes drifted away; several times. (I did this at home with my finger to both Lucas and Kayla and saw a noticeable difference. Lucas could keep his eyes on my finger all the way until it touched his nose; Kayla could not.)

We made an appointment to follow up with the vision therapist and I went home and did some research. I was still leery about the recommended 2x a week in-office vision therapy. And I wanted to read more success stories than was posted on their own website. I was also balking because this type of therapy is considered alternative and of course not covered by most insurances (including our own). It's recommended to start out at 12 weeks and then re-evaluate, but predictions are that Kayla will probably need this for at least a year. Knowing that insurance wouldn't cover this made me wonder how effective this treatment was and if it was 'worth it.'

But when I read the symptoms and the issues of CI it was like a light bulb going off.  A lot of what I read described Kayla.

She can read, but she doesn't read with fluency. She pauses a lot when she is reading. She stops to look around the page before even finishing a full sentence. I'm constantly tapping the page and telling her to continue on with reading the next word. It has been painful reading with her because of how absolutely long it takes to get through what should be a simple book. She skips easy words; she mixes up words like "a" and "the" and other small words that I know she knows. So she struggles with reading comprehension because by the time she finishes reading something, because of how long it takes, she doesn't remember or retain what she's even just read. She squints her eye. She tilts her head.

Her handwriting hasn't improved much over the last couple of years. When she writes a word she doesn't keep the letters all the same size and spacing together to make it a word. If there is no defined space the letters are spaced widely apart.

Here are some symptoms of CI: The bold ones are what we notice with Kayla, she might have the other issues such as blurred, double vision, headaches, but we don't know because she doesn't tell us ... or know any different to tell us what she is seeing.

• eyestrain (especially with or after reading) (She probably has this and that is why she pauses so much during her reading; to give her eyes a break)
• headaches
• blurred vision
• double vision
• inability to concentrate
• short attention span
• frequent loss of place
• squinting, rubbing, closing or covering an eye
• sleepiness during the activity
• trouble remembering what was read
• words appear to move, jump, swim or float
• problems with motion sickness and/or vertigo

"It is not unusual for a person with convergence insufficiency to cover or close one eye while reading to relieve the blurring or double vision. Many people who would test as having convergence insufficiency may not complain of double vision or the other symptoms listed above because vision in one eye has shut down. In other words, even though both eyes are open and are healthy and capable of sight, the person's brain ignores one eye to avoid double vision. This is a neurologically active process called suppression."

I read about treatment for CI here and here. "Pencil push-ups" used to be the most common treatment, but scientific research doesn't support this and studies have not shown it to be effective.

Mayo Clinic researchers were part of a nine-site study involving 221 children to try and determine the best treatment method. There were 4 controlled groups:
- Office-based therapy w/a trained vision therapist and in-home reinforcement
- Home-based pencil push-up therapy
- Home-based computer vision therapy with pencil push-ups
- Office-based placebo therapy

After 12 weeks the study showed that approximately 75% of the children in the office-based therapy with in-home reinforcement experienced either full correction of their vision or saw marked improvements compared to about 40% for the 2 home-based therapy groups.

That was enough for me to at least give this a try and see if there are improvements with Kayla's vision.

Next I went looking for parent testimonials. While it was helpful to read all the success stories of struggling in school and these kids now making As and Bs, and being at the top, or near top, of their class etc ... I knew that kind of success wouldn't apply to Kayla because she has an ID.

I knew that helping her with the CI will not all of a sudden give her average intelligence, or make school work easier for her ... it won't be a magical fix that will have her working on grade-level with her same age peers.

I wondered if there were any success stories about kids who had a prior diagnosed intellectual disability. I did find Success With Learning Disabilities: Special Education Programs and Vision Therapy. A quick stroll through the stories seem like a lot of those students were in Sped Programs due to reading problems; I haven't read enough yet to see if any of the stories contain students who also have an ID.

I know Kayla will still have hurdles in school to overcome because of having an ID, but I'm hoping this new diagnosis and treatment will hopefully help things not be as difficult for her.

Part III - Starting vision therapy, prism lenses, and learning about centrally- or peripherally-focused vision.

 

New Diagnosis; New Therapy (Part 1)

Kayla has found herself with a couple new diagnoses. The main one is Convergence Insufficiency. She was also diagnosed with far-sightedness and Amblyopia. Getting these diagnoses have been a few years in the making.

In 2010 we were noticing that Kayla was squinting, or closing, one eye a lot. But especially when she was reading or just looking at something in a book. A few years prior to that she had learned how to wink and we thought she was just doing that, in excess. But in 2010 I became more concerned with how often she was doing it because it didn't appear to just be winking anymore.

She went to an ophthalmologist who did the standard eye test and dilation. He didn't find anything; only said she was slightly far sighted, but not enough to need a prescription. When I asked about her eye squinting he said she probably just developed a tick, or it was just a habit, and she would grow out of it.

Since he didn't find anything wrong with her eyes I didn't concern myself with it too much and didn't pay much attention to her doing it anymore. We followed up over the next 2 years with the same results. Actually, I might have said that she wasn't doing the squint anymore because it had become so common that I wasn't even paying attention to it.

Leading up to this year's check up I began worrying about her eyes again. I couldn't pinpoint what it was, but something was nagging at me that there was something going on with her vision. At her check up in April he now said she needed a prescription, but otherwise found nothing else wrong.

Earlier in the school year she had an Assistive Technology evaluation and one of the things they mentioned was she has trouble copying from the Smart Board to her desk; that she loses her place and it's hard for her to copy from that distance.

Her resource teacher kept saying that she had trouble with one-to-one correspondence.

I said it wasn't that Kayla didn't understand one-to-one correspondence and that it wasn't that she didn't know how to do one-to-one correspondence, but instead, I felt there was something going on with eye-hand coordination and her visual motor skills. She knows what one-to-one correspondence is ... she knows to count the objects, or the lines on a number line (as an example), but what happens is that her verbal counting doesn't match in time with her fingers touching each object ... or she'll skip touching an object that she's counting. (I really should videotape so it makes sense what I'm describing). I just didn't feel like it wasn't something she couldn't do ... she knows to rote count in one-to-one and she knows what is being asked of her ... I just felt there was something else going on.

I mentioned that another mom told me about a child she knew who was doing vision therapy. I didn't know anything about what this was, or what his diagnosis was, I just felt like there was some visual motor/eye-hand coordination issues going on with Kayla. Her resource teacher told me about an optometrist office that advertised vision therapy, but other than that they (the school) couldn't do anything about it or diagnosis Kayla with anything eye-related.

We finally got an appointment at this optometrist office and that is where I first heard of Convergence Insufficiency and Suppression. He also said she has Amblyopia, otherwise known as lazy eye. That one surprised me because I always though 'lazy eye' was obvious, that you could see one eye turn in or out. Kayla's eyes have never done that.

I did what anyone does these days when looking for more information - went to Google to look up both of these diagnoses.

Amblyopia is the lack of development of central vision in one eye. It can be a result of failure to use both eyes together. It is either associated with crossed-eyes, (which she doesn't display) or a large difference in the degree of near- or far-sightedness between the eyes. That is what Kayla has - the prescription for her eyes are completely different. Her right eye has basically shut down. 

At the end of our optometrist visit he told me that she (and her eyes/brain) are having to work that much harder just to focus and make sense of what she's reading. I started crying. For at least 3 years (that I became aware of the squinting) my girl has been struggling so much with reading and reading comprehension, and math skills, and we didn't know it. Or rather, we didn't know the why of it. We didn't know what kind of help she needed. We didn't realize there was more going on than the Intellectual Disability; that there was something else causing her struggles. We didn't know how much harder she was having to work. We didn't know how she was seeing things. We didn't know her eyes weren't working together. We didn't know this was causing fatigue. (She never complains of being tired, but her needing frequent breaks from reading and writing are a sure sign). We didn't know this was why doing homework with her was such a struggle and took forever to accomplish. (Ok some of the issues with homework were because she didn't receive modified work and was doing the exact same homework that her classmates were doing - but that's a whole other issue.).

I couldn't help but cry for all she's gone through the past few years...and all the moments of frustration I had with her wondering why she just wasn't getting it, or couldn't do something.

Since this post is long enough already, I will follow-up in another post about Convergence Insufficiency (Part II),  and our first visit with the vision therapist - and why I cried yet again - and what the vision therapy is like. (Part III).