Miss Amazing

I am so far behind on updating this blog!

 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:

On Her Own Time

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!

PLAY Campaign at Fenway Park

One of the reasons we went to Boston was for Kayla to participate in the 3rd Annual PLAY Campaign (Promoting a Lifetime of Activity for Youth). This campaign is from the Professional Baseball Athletic Trainers Society (PBATS), the Taylor Hooton Foundation, Henry Schein Cares, and the National Down Syndrome Society.

This program takes place at several Major League Baseball parks across the nation and brings together kids of all abilities for an inclusive, on-field, educational and athletic clinic with the PBATS.

When I first heard about the program a couple years ago and realized the Red Sox were one of the participating teams, I was so tempted to jump on a plane and take Kayla! However, she was at camp so the dates just didn't work out. This year when I saw the email about the upcoming campaign I wasn't really expecting that we would go, but just for fun I checked the schedule to see when they would be at Fenway ... and it was July 15, Kayla's birthday. The Red Sox were also in town and would be playing a game that night. Everything was telling me to GO! Don't miss this opportunity!

It's no secret that I'm a huge Red Sox fan (and of course raising my kids as such!) and I've wanted to take them to a game (we did see the Sox play the Braves in Atlanta a few years ago, and we also went to a Greenville Drive game - minor league team of the Sox here in Greenville, SC). But, FENWAY! This would be not only going to a game at Fenway, but getting to experience Fenway up close and personal.

A road trip would also give us a chance to stop in CT and visit with my dad's side of the family (which, again, timing was perfect for this as the day we stopped by was the day after the 7th anniversary of my dad passing away. It was so good to be with his family).

So! PLAY Campaign! It was such a neat experience and I'm so glad we made this opportunity happen for both Kayla and Lucas (siblings were able to join in on some of the activities) ... and I lived vicariously through them :)

We made it! Fenway Park!

Another bonus was getting to hang out with a friend I met via blogging years ago; she signed her daughter up to participate too!

She's on the field at Fenway! And there's the Green Monster!

Doing some warm-ups

 

 Only my girl ... cartwheels at Fenway!

Lucas catching a few fly balls

Taking some batting practice

Warming up in the bullpen 

I might have been a liiiittttle bit excited to be on the field at, did I mention, Fenway Park!

With pitcher Brian Johnson who was there with pitcher Marcus Walden for Q&A session

What a fun experience for everyone, and a fun way for Kayla to spend her birthday!

The High School Decision

Kayla has graduated from 8th grade and is now a high schooler! How did that happen?!

She was so proud to get her diploma ... mile wide smile!

Mr T taught her for 6th grade social studies and Lit, 7th grade SS, and in 8th grade was the principal. Wonderful, encouraging educator to all his students!

Our intent was for Kayla to go to the Catholic high school that all the local Catholic elementary/middle schools 'feed' into. They have a great inclusion program that would continue the same type of educational setting she had at the middle school. They also have an archery club so we were excited she would be able to continue with that.

Unfortunately things just didn't work out for that to happen; the stars didn't align and all that. They only accept 4 students each year into this program and Kayla was on a waiting list.

Once we realized she most likely wouldn't be going to that high school the hunt was on for where she would go to school. It was like the million dollar question. A question I didn't have an answer for because the choices were ... almost nil.

The first, obvious, choice would be going back to the public school district. That was choice #73 ... let's just say it was way, way, down on our list. We knew what kind of placement the school district would recommend; it would be the same fiasco we had transitioning to middle school. It would have been 3 steps back from what she just had for 3 years. It would have been more restrictive. We also know how this whole game works. We know the school she is zoned for, but we know there would have been a meeting to determine if that school had the services/placement to educate her (and we know that school doesn't have an archery team). There is only 1 school in the district that has an archery team that we thought might be a possibility, but again, we know the placement there would have been restrictive.

Another issue is I was told that if I registered her for the local school district she would have to have full testing, to include IQ, again. She has had her IQ tested 3 times and the results haven't varied much, and they aren't going to change now. Her IQ is what it is, and I take that with a grain of salt (or try to anyway). I didn't want to put her through that battery of testing again, and honestly, I didn't want to sit through another meeting hearing what her IQ is. They don't make typical students take an IQ test for placement in the general education classroom, why do students with disabilities constantly have to be subjected to this test and reduced to this number?

So, no, public school was not something we wanted to entertain any real thought about.

We considered having her repeat 8th grade; although not at the school she was just at. We thought it would be a little strange for her since she just graduated from there and went through the whole ceremony and everything. I did some research on the other Catholic schools (at least 4!) and found one that was a possible fit, and they have an archery team. (I know archery isn't the make or break for school, but it is something I felt was important for her to continue with - and she wants to). I thought it might help her "priority" when applying for the Catholic high school next year (coming from a Catholic school). However, I talked with the admissions person at the high school and she told me it is in Kayla's records that she did graduate from one of their partner Catholic schools and that would 'count' even if she was at a non-Catholic school for 9th grade.

Since it wouldn't really benefit her to repeat 8th grade and go to a new school for only one year, we decided not to repeat 8th grade. We also found out that more than likely, no matter where she was for 9th grade, if she gets into the Catholic school next year she would have to repeat 9th grade. I'm not thrilled with that aspect, because she's already repeated Kindergarten, so to repeat 9th grade she would then be 2 years older than her peers. We will cross that bridge when we get to it.

SC has scholarships for students with disabilities to attend approved schools that have classes/programs so I looked at the approved list for all the high schools in the towns all around us. I called several of them to inquire about their 'programs' since they accept this scholarship. What I found was that "students with disabilities" meant students with learning disabilities like ADHD, dyslexia, dysgraphia etc ... not students with intellectual disabilities. So these other schools pretty much said they did not have the resources to educate students like my daughter. Needless to say, that was a disappointment.

So where did this leave us after all of that research and scramble to figure out what to do for Kayla?

Homeschool.

That was really the only option I could see that would work. I asked Kayla several times, as I wanted her to have input on this decision, whether she wanted to go to a new/different Catholic school and repeat 8th grade, or try homeschool. I also explained, over and over, what homeschool would mean and look like. She consistently chose homeschool. I was actually surprised as in the past she has always said no to homeschool. She loves going to school and having the routine of school.

So yeah, I feel like a fish out of water as we embark on this new adventure! I know there are so many resources out there for homeschooling, and that is the problem! It's overwhelming! I did the most important thing though - I registered with a homeschool accountability group so I could make sure I was legal! Haha!

I know there are resources where I can order a whole curriculum, but I'm not sure how well that would work. It would work for me because it would have everything we should be doing and the lesson plans and all of that - but I would want a high school curriculum to keep her exposed to what she would be doing if she had gone to the Catholic high school (or public school). However she needs a bit of modification so I'm not sure it would be worth it to get a whole curriculum if I'm going to have to modify the lesson plans and coursework anyway.

Right now we are just taking it day by day, (and Khan Academy is my friend!) and see what we can do and work on. I will be getting involved in local groups and hopefully have her take some classes etc so she's still getting the social aspect I know she likes from school.

On the plus side there is a homeschool archery team - so yay! - she will be able to continue with archery.

So please pray for us as we start this new journey that will be a big adjustment for both of us!

Honor Roll!

Kayla made the Honor Roll!

Academics do not come easily for her, at all, so this was definitely hard-earned. I was not able to be at the ceremony but I heard she was just beaming and so proud when her name was called.

Requirement is 86 and above and she had a couple 85/84 last year so she was soooo close! So proud of her during this first quarter marking period!

Missing Out On Beautiful

Missing Out On Beautiful is a collection of seven short essays about raising a child with Down syndrome written by Amy Julia Becker (author, including the book The Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny).

Amy Julia is offering this collection of essays for free. The book downloads directly to your desktop for reading.

The last essay is actually an interview with her daughter, Penny, who is 11 years old and has Down syndrome.

Medical Research in Down Syndrome

Down syndrome continues to be the most common genetic disorder and the least funded. There is so much to learn about the connections to the 21st chromosome and research is so important.

It's important not just to the individuals with Down syndrome and their families - but it is important in the general population as well. There is a huge connection with Down syndrome and Alzheimer and potential cures for Alzheimer can help the general population. There is also interest in researching in why people with Down syndrome are less likely to get certain cancers - like breast cancer - or more likely to be diagnosed with leukemia, but have a higher rate of survival.

Frank Stephens, a self-advocate, testified on Capital Hill regarding the importance of funding for Down syndrome research. It's important for his voice to be heard.

As he states, people with Down syndrome are "...a medical gift to society, a blueprint for research into Alzheimer, cancer, and immune system disorders."


You can also watch the testimony of Michelle Sie Whitten, Co-Founder, President, and CEO of the Global Down Syndrome Foundation.

What can you do as families? Have you registered with DS-Connect: The Down Syndrome Registry? You can connect with researchers and health providers and possibly participate in certain clinical studies.

Parenting and Perceptions (Repost)

I originally posted this nine years ago. I occasionally still feel this way; so this is a good reminder to myself.
~~~~~~~~~~~~~~~~~~

As a new mom one thing I struggled with (and sometimes still do) is Kayla's behavior in public and the perception other people might have.

It's not necessarily what I would consider really bad behavior either; she doesn't throw fits/temper tantrums, beg for toys or candy, cries or whines...but she doesn't listen. She takes off down random aisles going where she wants to go. She doesn't have a care in the world or even cares if we're following her. She doesn't care if she's not staying with us. How frustrating is it to call your child back "stop!" "turn around!" "come back here!" and they completely ignore you? Or they think it's a game and see how fast they can get around the corner before you catch up to them.

Kayla was never one to just stand in one place while I browse the shelves for whatever I'm looking for. It would make me a little sad to see other kids just walking nicely and calmly holding their parents' hands, or just standing by their side; my kid would have to be in the cart or else she would take off. (Over the last year she has become better at walking with us, but still has her moments of taking off.)

Same thing with restaurants. It stresses me out to go out to eat with Kayla. We rarely eat out as it is, but now I try to avoid it if possible. She won't stay seated. Up, down, up, down. Fidgety, trying to climb under the table, over the table. I bring things to keep her occupied but it just doesn't work...everything else is so much more entertaining. I hate saying over and over "Kayla sit down!" "Just sit still!" blah blah blah...so we just don't eat out.

I know all parents want and expect their kids to behave - especially in public. No one wants to be the parent who has the kid acting up and everyone else is discreetly trying not to stare at you.

But kids will be kids. They have short attention spans, they're curious, it's hard for them to do grown-up things, shopping can be boring for them, they have moods, they're not always well-behaved.

So while yes, I do expect my child to listen when I'm calling her, or telling her to stop, sometimes I think I expect too much from her. I think I've put expectations on her to be good all the time and when she doesn't I get frustrated. And no child can be "good" all the time. It's not reasonable to expect perfect behavior (although it would be nice!)

I think I've put some unreasonable expectations on her because she has Down syndrome. Because if she's running away from me and not listening when I'm telling her to stop and I end up chasing her down...then people might see that and think "oh she's got her hands full with her daughter who has Down syndrome." Because if we're in a restaurant and she's not sitting still (and I mean standing up on the chair, sitting down, standing up, getting down) someone might look at us and think "thank goodness I don't have a child with Down syndrome; look what the parents have to deal with."

I expect her to have this oh-so-perfect behavior because what if our family is the only interaction some other family has with Down syndrome and think negatively because of it? Whereas if she was "good" all the time then someone might observe and think "oh having a child with Down syndrome isn't so bad."

Of course I have no idea what anyone else is thinking. These are only my thoughts on what they might be thinking. But I do worry about what other people's perceptions are. I worry if they're going to judge a whole segment of society - people with Down syndrome - based on what they see of my daughter.

I know this isn't fair to Kayla at all. It's not fair for me to expect her to be "on" all the time just so she can be a "positive face for the Down syndrome community." She's not the poster child for Down syndrome. And if I don't want people to perceive her "negative" behavior as an attribute of Down syndrome then I need to stop doing it myself..because sometimes I do wonder "would she be acting like this if she didn't have Down syndrome? Would she be this active and impulsive?" And if so would I care as much? Would I worry so much about what other people thought? Would I stress so much when we go out in public? I need to see her personality for what it is - a highly active and curious child (which totally clashes with my more mellow style!)

I do know that her "behavior personality" isn't specific to Down syndrome. I know a lot of typical kids act the same way and some of it has to do with age too. But when you have a disability it feels like everyone is judging you/your child on that instead of it just being "their age."

I don't even know what exactly it is I'm trying to say here! Just that sometimes parenting really is hard; trying to figure it all out - how to raise these little people that depend on you for everything. Trying to do the right thing by them...sometimes failing, sometimes succeeding...but learning through it all.

Guardianship Thoughts

Last week I watched a webinar about the Beyond Academicss Program at the University of NC Greensboro.

Last year I blogged about how impressed I was with their program after talking to them at the NDSC Convention and this webinar just reinforced to me how much I would love for Kayla to attend their program, or one very similar to it.

Just a few examples of the success their graduates have had compared to people with intellectual/developmental disabilities across the nation:

61.5% were employed compared to just 35% across the nation
54% lived independently/semi-independently compared with 36%
77% had checking account and wrote their own checks compared with 29%
92% completed volunteer/community service in last year compared with 19%
100% registered to vote compared to 62%

There was a lot of great information shared on the webinar but something stuck out to me that I didn't realize, or hadn't thought of before.

To be eligible for the program students have to be their own guardian - the parent(s) can not have guardianship.

I'm not sure if all programs have that requirement - and it's not mentioned on any of the ones I looked at on Think College, but I imagine the same would be true for any of them.

It does make sense that if you're sending your child away to a 4-yr residential program like this that you would not have guardianship of your child, but it was not something I had given a thought about.

We still have a few years left before we decide if we're going to pursue guardianship of Kayla or not. I know I don't want to have to do that, but it's something we really need to research and figure out what we're going to do.  If having guardianship impacts her ability to attend a program like this we definitely need to take that into consideration.

There are some options to not pursing full guardianship though. ABLE South Carolina has an informative video about Supported Decision Making: A Family's Perspective.

This is something we will be exploring as a possibility for Kayla.

Intelligent Lives - A Documentary

Intelligent Lives is a new documentary film by the award-winning producer/director Dan Habib set to be released in 2018. The film follows the lives of 3 individuals with disabilities whose lives would have much different outcomes if they had been born even as recently as 1970 - most likely by being institutionalized.

"Academy-Award winning actor Chris Cooper, the narrator of Intelligent Lives, unpacks the United States’ sordid history of intelligence testing, which led to people with intellectual disabilities carrying a clinical label of “moron,” “idiot,” or “feeble minded.”  The three central characters of Intelligent Lives — Micah Fialka-Feldman, Naomie Monplaisir, and Naieer Shaheed — would have been labeled this way had they been born in the first half of the 20th century. Their parents would have been counseled to send their children to live in an institution alongside hundreds or thousands of other people with disabilities. They might have been among the approximately 65,000 Americans forcibly sterilized in order to “improve the stock” of humanity during the U.S. eugenics movement. As recently as 1975, Micah, Naieer, and Naomie would not have had legal access to a public education."

See a preview of the film here and see a list of screenings here.

You can also follow along for updates on the FB page.

Sam's Top Secret Journal

A Middle Grade mystery book in which the main character has Down syndrome?

Yes, please!

That's exactly what you'll find in Sam's Top Secret Journal - a 3-book series. (We Spy, Sam's Secret Island and Memorial Day).

Sam, who has Down syndrome, is sometimes "bullied for the differences kids perceive in her." But the main story is how Sam and her brother "embark on their first big adventure...full of fun, suspense, and spying." 

The author (Sean Adelman) has a daughter with Down syndrome and the things Sam does in the books are based on his own daughter's abilities.

I'm not aware of any other fictional book in which the main character has Down syndrome - especially for Middle Grade books, so this is a much-needed book series.

I think Kayla will find this series under the tree this Christmas and it will be fun to read it with her and talking about how Sam also has Down syndrome - a character she can identify with!

Woodbine House Books and DVDs

I think Woodbine House is the largest publisher of books and DVDs for disability issues. They have a large collection of products organized by disability ranging from children's books to books for parents and professionals and self-advocates.

A sampling of topics that you can find books on: ADHD, Celicac Disease, Down Syndrome, Cerebral Palsy, Literacy & Reading, Cleft Lip and Palate, Deafness ... and many, many more.

In honor of Down Syndrome Awareness Month (through the end of October) 40 books and DVDs are 30% off. No code needed; discount applies automatically.

I have several of the books and I think my next purchase will be Boyfriends and Girlfriends. Kayla says she's not interested/doesn't want a boyfriend "NOOOO!" is her emphatic answer, but I'm sure that day will come! No harm in going over this and talking about relationships and expectations with her now.

That Taboo Topic

Two years ago, during 31 for 21, I blogged about the importance of sex education for people with disabilities - and it's still important for this topic to be discussed.

As I said in that post - sex education isn't just about sex (safe sex/abstinence) but it's also about healthy relationships and what is/isn't appropriate. It's about learning about boundaries and personal space and owning your body and knowing you can say no.

With the current news focused on the latest man in position of power sexually harassing/assaulting women, it's important that people with disabilities are involved in this conversation.

It's so important because 80% of women with an intellectual disability will be sexually abused. (The article I linked to for this statistic in my previous post is no longer available).

Aside from that glaring statistic - people with disabilities have sexual feelings too and have been treated as children well into their adult lives and not been given the chance to explore their sexuality.

This article explains Why Sex Education for Disabled People is so Important. And it isn't just coming from the 'experts', but from people with disabilities who were interviewed for this article.

"When it comes to disability and sexuality, a large part of the issue lies in the fact that disabled people are so infrequently included in the decisions made about their bodies, their education, and their care. So what do people with disabilities wish they had learned in sex ed? This is what students and adults with disabilities said about their experience in sexual health courses and what they wish they had learned."

The Road We've Shared

The Road We've Shared  (TRWS)"...focuses on caring for and supporting people who have Down syndrome and are over the age of 18..."

Kayla is 14 and it hit me recently that in 4 short years she will be 18. How is that possible already? I'm not ready for my child to reach the age of adulthood already. I'm glad this website/online community is available for parents and caregivers who have (adult) children with Down syndrome as those experiences present a different set of challenges than when our children are under 18.

The main focus area of TRWS are: Policy/Advocacy, Health/Research, Elder Planning, and Social History/Outreach.

A new initiative TRWS started at the beginning of this month is Life After High School - New Online Courses for Adults with Down Syndrome.

This new project includes these goals, among others:
- Allow self-advocates to the be the experts
- Provide opportunities to form friendships based on common interests
- Course materials that allow for a wide spectrum of abilities
- Support continued learning into adulthood

Registration is open for the first two courses - "For the Love of Musicals" and "Let's Get Ready to Rumble."

If you have an adult child with Down syndrome, or are a caregiver, check out The Road We've Shared!

Internships for People with Disabilities

Some welcome news coming out of Albuquerque, NM about Presbyterian Rust Medical Center. The hospital has partnered with Adelante Development Center, Rio Rancho Public Schools, Vocational Rehab, NM Dept of Health, and U of NM Center for Development and Disability to offer internships for people with developmental disabilities who have graduated high school and are between the ages of 18-22.

Interning is a great way to gain job skills, but can be hard to find for people with developmental disabilities. So far this program is producing positive results with many interns from the previous year landing paid jobs.

It's encouraging to read about opportunities like this and hopefully more hospitals will partner with school districts for providing internships.

It's definitely a step in the right direction showing people with disabilities are capable if given an opportunity.

This internship program is part of a wider network of intern opportunities across the country with Project SEARCH. Their high school transition program "...provides real-life work experience to help youth with significant disabilities make successful transitions from school to adult life."

You can see what programs are available in your state (and a few countries as well!)

Likable or "Leg"ible

Because of her enunciation Kayla's speech sometimes takes some deciphering to figure out what she is saying. Thankfully she is usually able to describe it with other words, or point to an object, or act it out so we finally get that 'a ha!' moment.

We had just such a moment the other day when I picked her up from school.

I told her she had some homework/studying to do of her vocabulary words and said, "You know your list? Like 'visible'?"

Kayla, "Yeah I know that."

Me, "This week your words all end in either 'able' or 'ible' so we've got to study those."

K, "Lovable!"

M, "Yep, lovable, that's one of your words."

K, "And (insert word that I thought sounded like 'likable').

M, "Likable?"

K, "No, (repeats word that still sounds an awful lot like 'likable')"

M, "LIKE ABLE? Is that what you're saying?"

K, "No, (repeats word), you know? Like this?" - She lifts up her leg and rubs her hand on the side of it. "LEG" ible."

Me, busting out laughing because I get it now.

M, "OH! Kayla that's 'legible' - what your handwriting is not! It's not pronounced "LEG"ible! It's leh-gible""

K, "Ooooh!"

And then we both got a good laugh out of that.

She knew the word began with LEG and thought it was pronounced that way. It really was funny when she knew I was saying "likable" and she knew that wasn't the word she was saying so she pointed out her leg since she thought it had to do with 'leg'. Ha!

To My Younger Self

I originally shared this "Letter to Myself" a few years ago, but wanted to repost it for 31 for 21 (Down Syndrome Awareness Month).

Dear Twenty-Something Michelle,

Hello! This is a letter from your future self. It looks like you are settling in nicely to your life. Things seem to be going well, you have a great husband, a job, a new house. Ok ... a not-so-new house considering we are talking about military housing!

You are now at a point in your life when you and Joe want to start a family. Great! Now settle in for the long haul. I don't mean to burst your bubble, but this isn't going to happen as easily, or quickly, as you think it might. Prepare to be on the 'trying to conceive' journey for over a year.

I will say that thankfully you won't need to start fertility treatments, although you will have that initial appointment or two to get the ball rolling.

Since you don't want to find out the gender as you'd like to keep that a surprise, I won't spoil that for you by revealing it in this letter.

I do, however, want to give you a heads up about your newborn baby. Your first born child will be born with a medical condition. Your child will have a slightly different genetic make-up than you or Joe have - something to do with the chromosomes.

I'm not telling you the specific diagnosis because I think it's important for things to happen the way they were supposed to happen. I just want you to know that you will receive some news upon the birth of your child. News you weren't expecting to hear, and news you don't really imagine for your child.

But I also want you to know, and to remember, that even though your child will have this life-long diagnosis (there is no cure), this child is still your child. This child is still the child you and Joe created together. This child is still the child you get to take home and raise. This child is still the child you wished and hoped for. This child is still the very much wanted, and loved, child you will carry for 9 months.

There will be some challenges, but there always is in parenting. It is ok to feel whatever you will feel in the moment. It is ok to be afraid of the future because the unknown can be scary.

As I'm writing this to you now, this child-to-be will be 11 years old in 6 days. This child has already seen much and accomplished much in 11 years.

This child just went to 2 sleep-away camps this summer and had a blast - I'm sure that's something you won't imagine happening when you receive the diagnosis.

Enjoy your newborn. Cherish your newborn. Raising your child, getting to be a parent - that is what matters and what counts. The diagnosis you can deal with one day at a time. The diagnosis will become secondary.

I'm not going to promise that everything will be easy, because it won't.

But I can promise that everything will be all right, because it is.

Camp Rise Above

Kayla and Lucas have been fortunate to attend a local camp that serves kids with different health issues for the past few summers.

Camp Rise Above is a fun 2-day camp experience (with plans to expand to be a weekly over-night camp) that offers rock climbing, archery, fishing, canoeing and a trip to the water park among other activities.

Kayla started attending this camp several years ago going to the session for kids with Heart and Kidney issues. This summer they added a camp that was for kids with Down syndrome. I was a bit conflicted as she had been going to the Heart and Kidney one for a couple years and did fine at that session - I didn't feel she 'needed' a camp specifically for kids with Ds, and I liked the idea of her being in the other session because she was with mostly typically-developing peers. I'm all for inclusive opportunities like that - not just for Kayla, but for the other campers to have the experience of being included with someone who has a different chromosome make-up. But one of Kayla's best friends was going to the Ds camp and I could split car pool time with her mom (which helps because the camp is about 45 min away), so she went to the Down syndrome session this year.

Lucas attends the session for kids with asthma. He was diagnosed a few years ago, but thankfully it seems to be pretty well under control.

Kayla didn't attend the camp last year because the date coincided with a sleep-away camp she attended. This past July we were in Greenville (3 hrs away) walking down Main St when this guy walking towards us stopped to ask me, "Is her name Kaylee?" I said, "It's Kayla." as I'm trying to figure out how he must know her; and then he asked Kayla if she remembered him from camp. He was one of her counselors from a couple of years ago and said she was one of his favorite campers (and asked about her last year when she wasn't there). I think the feeling was mutual as you can see from this photo of a couple of years ago. Small world, indeed!

Lucas had a great time with his counselor, and if I remember right, he's going to Spain ...hopefully he'll be at camp next summer so Lucas can hear all about that.

Our local ABC News 4 channel did several news pieces highlighting the different camps and experiences offered to the campers.

This video has several clips of Kayla - the first time she appears she's coming down the water slide in a blue and yellow swim shirt.


Lucas is in a couple quick scenes in this video - sitting on the picnic table while talking about the cookie challenge.



I'm glad they have this opportunity to attend this camp and they look forward to it every summer.

Free National Parks Pass for People with Disabilities

I've shared this before on my blog, but it's worth sharing again for those who may not know about it.

People with disabilities can get a free National Parks Pass. The Access Pass is a lifetime pass available to US citizens (or permanent resident), who have a permanent disability - regardless of age.

The pass can be used at National Parks, National Wildlife Refuges, and many National Forest Lands.

The pass admits the pass owner and any passengers traveling with them in a vehicle at per-vehicle fee areas, or the pass owner and 3 additional adults where per-person fees are charged.

The passes can be obtained, in person, at a Federal recreation site (please see what paperwork you'll need to bring with you) for no fee. If you request the pass by mail there is a $10 fee.

Another opportunity to obtain a free National Parks Pass is through the Every Kid in a Park initiative. Every child in 4th grade (including students who are homeschooled) can receive a free pass good for one year.

Here is the link for families to print out the pass for their 4th grader, and here is a link where educators can print passes for each of their students.

Kayla on the Runway

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!

Ashley DeRamus has an online fashion boutique - Ashley by Design, and a foundation - Ashley DeRamus Foundation; and she has Down syndrome.

She was a vendor at the Southern Women's Show Charleston and Kayla was one of the models for her runway show.

Here is the video of Kayla on the runway.

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!