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!

Down Syndrome is a Blessing ... Or Is It?

There are a handful of sentiments and cliches that are used over and over in the Down syndrome community that it almost feels as if one is expected to agree with and regurgitate the same information. Once you join the community of parents who have a child with Down syndrome it's easy to find yourself repeating these sayings as if on automatic pilot.

I've blogged before that I just don't identify with most of these cliches such as "since having a child with Down syndrome I've learned to be more patient."( Nope.) "I've become a better person since having my child with Down syndrome." (Again, nope. I don't believe I was such a horrible person before I had my daughter that I was given a child with Down syndrome to become a better person.)

Another sentiment I see oft repeated in articles is "Down syndrome is such a blessing."

This one makes me pause and think. Do I agree with it? Or am I again on the other end of the spectrum with my feelings?

Yes we've been blessed to meet a multitude of families we otherwise wouldn't have met if Kayla didn't have Down syndrome. On the flip side of that I can say we probably would have been blessed to meet a whole group of different parents and families if Kayla didn't have Down syndrome.

But is Down syndrome really a blessing?

I'm not talking about if Kayla is a blessing; she is, but not because she has Down syndrome. I've said it before: she's a blessing simply because she is my child and she exists - as much as Lucas is a blessing to us. For me it has nothing to do with Down syndrome.

Down syndrome is a medical diagnosis and if I separate my child from the diagnosis and just talk about Down syndrome, by itself, would I call it a blessing?

No. It's no more a blessing than Kayla's diagnosis of ADHD, or her diagnosis of Celiac Disease. It's no more a blessing than Lucas' diagnosis of allergies, or his diagnosis of asthma. They are all medical conditions and I wouldn't count any of them as blessings. Why? Why would they be classified as blessings?

That's not to say I'm in denial or haven't accepted my child as she is: I have. She was born, she was diagnosed, it's a part of our lives.

Is Down syndrome a blessing when it brings with it issues like Kayla will probably never be able to drive because she just won't have the quick reaction time, or ability to stay focused, that driving requires?

Is it a blessing that she could be more easily taken advantage of in more ways than one?

Is it a blessing that she can't fully read social cues?

Is it a blessing that concepts such as money and time-management, which come so easily to her brother and other typical same-age peers, do not come as easily to her?

Is it a blessing that telling her she has 15 min to get dressed and be out the door is the same thing as telling her she has 2 hours?

Is it a blessing that she will likely need some kind of assistance to live as independently as possible? And living independently probably will not look like it did when I lived independently.

Is it a blessing that the provisions we have to make for her future are completely different than what we are able to do for Lucas?

Is it a blessing that a law had to be made to allow her to have another avenue of savings because if she has over a certain amount of assets her eligibility for assistance will be reduced?

Is it a blessing that she can't simply own property and a checking account and savings account and do with her money what she would like because it all has to be analyzed and scrutinized to make sure she doesn't maintain more than that magical limit?

Is it a blessing that she can't keep up with her same-age peers academically?

Because I don't view it as a blessing does this mean I wish she she didn't have Down syndrome?

Most days I don't think about Kayla having Celiac disease, but some days I wish she didn't have to deal with a specialized diet.

Most days I don't think about Kayla having ADHD, but some days I wish she didn't have it so she could concentrate better on academics.

Most days I don't think about Lucas having allergies, but some days I wish he didn't have to take Zyrtec and Flonase every night.

Most days I don't think about Lucas having asthma, but some days I wish he didn't have to make an inhaler part of his morning routine.

Most days I don't think about Kayla having Down syndrome, but some days, yeah, some days I wish she didn't have the deficits that come along with a cognitive disability. And there is nothing wrong with admitting that most days I don't give it a thought, but that some days I don't like the medical diagnosis of Down syndrome very much.

It's a diagnosis and I think of it like their other diagnoses. Yes it's quite a bit more involved than allergies, but it's a diagnosis nonetheless and I don't consider it a blessing any more than the other diagnoses.

Down syndrome isn't a blessing, but Kayla, she is a blessing with or without Down syndrome.

Z is for Ziggurat

Ziggurat. Well that's a word you don't hear every day (unless you're in 6th grade social studies). So what does ziggurat have to do with Down syndrome? It doesn't. What it does have to do with is Kayla and school; and it seemed the perfect word to use for this "Z" post.

Earlier in the school year Kayla brought home her study guide for Mesopotamia and I cringed looking at some of the vocab words: polytheistic, ziggurats, Code of Hammurabi, cuneiform. How was she ever going to learn and retain the terminology of words that are so far removed from our vocabulary? Honestly, I didn't even remember what some of these words meant. I think my exact words were, "What the heck is a ziggurat?!" I'm sure I must have learned about it during my unit on Mesopotamia, but remembering what it was all these many, many years later? No.

I used quizlet.com and made flash cards and printed those out to study with her. We played matching games of turning over all the cards and trying to find the definition to the word/phrase.

Kayla is the type of person who doesn't test tell. We review, review, and review at home and (most of the time) she gets it, but then her test will come back and it's often a face palm of wondering why she put that wrong answer over something we know that she knows. We often say, "Kayla you know this!" and she will point out the right answer. So I had no idea how this first test was going to go. I didn't know how her teacher would set up the test for her - multiple choice? fill in the blank? true or false? matching?

He did a matching test for her, and he realized that having all 10 terms/definitions on one page was too overwhelming (she is impulsive [hello ADHD] and won't take the time to look through all the answers to find what matches the vocab word definition) so he broke it down for her on two pages with 5 terms on each. That's just what she needed to focus.

I would have been happy if she got 7 of them right, even though she seemed to know all of them pretty well when we reviewed the night before.

This is how she did.

She will not always 'ace' her tests, and rarely does, so to see this ... I was just so dang proud of her.

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What's Best For Kayla

After venting about our IEP meeting and the school's recommended placement for Kayla for middle school, a common refrain I hear is "You know what's best for Kayla."

But I don't feel like I do know what's best for Kayla.

I know what I want for Kayla.

What I want is an inclusive education. What I want is for her to go to a school like this, or this, or this. I want her to go to a school that belongs to the Inclusive Schools Network.  I want her at a school where inclusion is the culture, where inclusion is the belief, where inclusion is embedded in the school life. I want to live in a school district like the Deer Valley Unified School District in AZ, where Michael Remus is the Director of Student Support Services. I want someone like Michael Remus to bring his power point "The Road To Systems Change" to this district and provide them with training.

Example from the power point presentation: Change of Thought Process. - From "Where do I put them?" - To "How do I deliver their services in a more inclusive setting?" That has never been the thought process at our IEP meetings.

I want this experience for her because I know that an inclusive educational experience is not beyond the realm of possibility and that it can be successful and rewarding if it is done correctly.

But when I've sat in IEP meeting after IEP meeting after IEP meeting for five years and hear mostly negative viewpoints on my child with an intellectual disability being educated in the general education classroom it starts to wear on me. It takes its toll emotionally. I start to question myself if I'm doing what's best for my child.

I hear the buzzwords over and over that my child needs "specialized instruction in a small-group setting with a highly-qualified specialized teacher." What I don't hear are suggestions and plans on how to deliver those services in a general education classroom.

Another frequent topic in IEP meetings, and another argument the school has for self-contained placement, is Kayla needs one-on-one support for frequent redirection because she is so easily distracted, can't focus, and is impulsive. Oh is she ever impulsive.

A couple of years ago Kayla was diagnosed with ADHD. We have decided, for now, to not medicate. I wonder what schools do with students who have ADHD and aren't medicated, because I know I'm not the only parent who has chosen to not medicate. They find strategies and ways to deal with the behaviors, don't they? They don't recommend that unmedicated children with ADHD be in self-contained classrooms for their core academics do they?

This ADHD diagnosis is another example of not knowing what's best for Kayla. Maybe medication would be the best thing for Kayla. Maybe it would help her to grasp concepts easier and retain information and learn more skills because she would be able to focus better. Maybe we are holding her back from reaching her 'maximum potential' in the realm of education because she's too easily distracted.

But it worries me. I'd hate for her to have to rely on, and be medicated for years and years on end. And there is a whole process with figuring out the right medication and the right dosage and going through different side effects.

Some kids have lesser ADHD symptoms when they eliminate gluten and/or artificial colors/dyes/ingredients from their diet. Kayla was diagnosed with Celiac Disease 6 years ago - she's been on a gluten-free diet for that long and I never saw any changes in her. I avoid buying products with artificial ingredients (not to say that she doesn't occasionally get it from elsewhere, but for the most part it's not in our diet), and I don't notice any changes in her.

She had a sleep study done, twice, that showed moderate sleep apnea. Symptoms of sleep apnea can mimic ADHD symptoms. She'll have her tonsils (they are large) removed this summer and then a follow-up sleep study. I'm hoping we'll see changes in her attention span and focus after that.

For now we are trying Vayarin - a "non-drug clinical dietary therapy for managing ADHD symptoms..." After a little over a month I haven't seen any drastic changes (although it does say it could take 1-3 months to see any affects because it's not a drug so it won't have an immediate affect on the body.)

So how do I know what's best for Kayla? I feel inadequate even as her parent. I can't go back two years and see how things would have turned out if we would have medicated her right away.

We sat in our end-of-year IEP meeting and were told that after two years they just didn't believe the placement Kayla had was the best placement for her to thrive, and grow, and learn and reach her potential. They don't feel like they did right by her. Even though she made progress and met all the goals on her IEP. We were told "We didn't close the gap so something has to change, the placement needs to be different."

We didn't close the gap.

I know schools receive a report card on how well they are doing with closing the gaps of the sub-groups: minorities, poverty, English-language learners, and students with disabilities.

I'd like to see the statistics on how much this school has closed the gap specifically with the students that are educated in their two self-contained rooms. If they are closing the gap so well with that placement then why are those students still in self-contained rooms for most of their day?

And how are you going to close the gap with students with intellectual disabilities when I've always heard "the gap continues to widen the older they get." Kayla isn't going to catch up to where her same-age peers are. They are going to continue to learn at double, triple, quadruple the pace of what she learns every year. The point is for her to move forward, to make progress.

I don't feel like I know what's best for Kayla because I can't go back and travel the other road to see how that decision would turn out.

I only know what I want for Kayla, I know what's possible with inclusion, I know what research has shown to be best practice.

I know that a study from Bunch and Valeo in 1997 showed that "Special Education placement for students with disabilities has failed to demonstrate substantive advantages over regular classes despite lower teacher-pupil ratio and specialized teaching. Special Education has not proven to be academically and socially stronger than would regular class placement."

That was nearly twenty years ago, and yet, here we still are - placing students in classrooms by their diagnosis and delivering all the core academic subjects in self-contained classrooms.

And I know that Dr Robert Jackson found, "No review could be found comparing segregation and inclusion that came out in favor of segregation in over forty years of research." In over forty years no review came out in favor of segregation.

More from Dr Jackson's report: "...students in segregated education do less well than those who were included, and the longer they were segregated the larger the gap with their included peers." It isn't just a benefit for Kayla to be included as studies have found "...children without disability made significantly greater academic progress in mathematics and reading in inclusive schools."

That's why I may not know what is best for Kayla, but it is what I believe is best for Kayla.

Welcome to 31 for 21!

October 1st = The first day of Down Syndrome Awareness Month and the month long blogging challenge of "31 for 21". It's NOT too late to sign up and participate! You can join in even if the month is half over with! Blogging for 31 straight days might seem daunting, but I assure you nothing bad will happen if you end up not finishing the month, or skip a day or two. It's just a fun blog challenge to do in the month of October. Bring some awareness, advocacy and acceptance to the world!

In case I have any new readers - and hi to all my 'old' readers! - I just wanted to do a quick introduction about myself and why my reason for blogging for 31 for 21.

I'm a SAHM, by choice (and which I feel fortunate to have the choice) to two kids. Kayla is our first-born child and she is the reason I blog for 31 for 21. She has that extra chromosome on her 21st pair and came with a diagnosis of Down syndrome. She also has Celiac disease and ADHD. And probably some sensory issues as well, but no formal diagnosis for that. She loves ballet, drama, and being outside.

Lucas is our first-born son (I know he would appreciate being described as 'first-born' something!). Although he is younger than Kayla by almost 5 years, he is a great brother with a big heart and watches out for her (even making sure other people know she can't have gluten!). He has to be right in the middle of everything or feels he's missing out on something, and he's a voracious reader. He read through most of the Magic Tree House books this summer. He also likes being outside and playing soccer.

We're a military family (Go Air Force!) soon to be with a 'retired' in front of that though! I am also a consultant with Discovery Toys, a Family Partner with Family Connection SC, and a volunteer with LuMind Foundation.

We found out at birth that Kayla has Down syndrome; although it was suspected during my pregnancy based on the results of the prenatal screening I had done. Those results indicated I had a 1 in 88 chance of having a baby with Down syndrome. We declined the amnio. You can read about her diagnosis in this post: Guilt. The story of that post became the basis for my story in the book Gifts: Mothers Reflect on How Children With Down Syndrome Enrich Their Lives.

I've been blogging for 8 years now and participating in 31 for 21 for 8 years as well! So, welcome to my blog and welcome to "31 for 21!"
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I Still Love You

I've made no secret about the fact that I have not learned the 'patience lesson' by having a child with a disability. I lose my patience. I get exasperated. I get frustrated. I get flustered. I hurry Kayla, and Lucas for that matter, along.

Doing any type of school work with Kayla is a lesson in not pulling out my hair. Truly, it is. Besides the cognitive impairments that go along with Down syndrome, I've mentioned that Kayla has also been diagnosed with ADHD.

Getting through what should be 20-30 min of school work/review can take up to an hour. It's constant redirection, fidgeting, losing focus, being distracted.

The other night we were working on a math sheet. All she had to do was fill in missing numbers. It really shouldn't take too long and didn't require a whole lot of mental concentration. But it seemed after every.single.number she would find something else to distract her instead of seamlessly moving on to the next number.

Looking out the window. Checking the lead on the tip of her pencil. Rubbing the eraser on the palm of her hand. Seeing what Lucas was doing. Asking me what we were doing later. Asking what we were doing the next day. Asking questions about anything to avoid doing the worksheet.

I remained calm. I tried to keep my voice even as I redirected her back to her worksheet. I didn't speak at her in a frustrated voice. I didn't raise my voice. I tried to not escalate the situation to where she would feed off my negative vibe and then stubbornly refuse to do any work.

I was exasperated by the amount of redirection and time it was taking, but I was not mad.

Finally, in an effort to wait her out, I merely put my arms on the table, sighed, and put my head down on my arms. I thought I would give myself a few minutes and give her a few minutes to decide she was ready to get down to business again.

Then I felt a hand very gently rest on my arm.

Then I heard a voice very softly say, "I still love you mom. I still love you."

After she has done something she wasn't supposed to, or hasn't done something she was supposed to do, and she knows I am mad about it - I always tell her some version of "I still love you. I was mad about this or that, or because you did this or that, but I still love you. I always love you, even when I'm upset."

I picked my head up, smiled at her, and told her that I still love her, too.

And maybe there is hope for me yet; maybe I am slowly but surely starting to learn this lesson on patience.

 

ADHD in Action

Kayla was diagnosed with ADHD about 2 years ago. Initially we decided not to medicate her with prescription drugs - mainly because of the side affects. However we're starting to reconsider that because I know not being able to focus and concentrate is affecting her at school and impacting her ability to absorb and learn new concepts. We see it every day when we try to work with her for 5 minutes at the kitchen table on school work. I can only imagine what a full school day is like for her. But to medicate or not to medicate is for another post.

Today is a glimpse into what I imagine to be a classic example of ADHD.

Kayla was in a drama camp this summer. She was one of 3 mice in the adaptation of The Hare and Tortoise. In this video clip you can see how distracted, and not so focused on the scene, she is with her shadow on the wall and her mouse tail. Lucas is sitting in the front row in the gray shirt with black stripes. She's trying to show him her tail.

She doesn't typically like anything in her hair, it doesn't help that the headband ears are slightly too large for her head. Throughout the whole play she kept taking the headband off and on, off and on, and adjusting her hair over and over and over to the point it was making me want to pull my own hair out!

While all of that is going on she does manage to get most of her lines. Even though in this clip a couple of her lines are said while she's facing the wall and not the other actors! Oh well - at least she knew it was her turn to speak and remembered her lines. Although one of her lines "We have ideas!" she missed her cue, but then came back with "Great ideas".

In case you can't hear it very well her first line is "where's my shoe?" After the "great ideas" she says "and kind", "he stole my shoe", followed by "we're underfoot".

I love this girl - Down syndrome, ADHD, and all! She makes me laugh in this video, it's just so Kayla.