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.

Victory Junction Family Weekend

One of the nice things about living in SC is being close enough to attend Victory Junction!

Kayla has attend camp the past few summers and Lucas attended once for the sibling session. (Unfortunately for Lucas that was the last year they had sibling camps - he really liked it there!) The past couple of years while Kayla has been at camp, Lucas and I have stayed in NC for our own little vacation together exploring museums, the zoo, and geocaching.

They also have Family Weekends in the Spring and Fall for the whole family to attend. We've been fortunate to have attended a few of those as well!

We just went last month, and a bonus was that friends from our area were also selected to attend that same weekend. It was fun for the kids to be able to hang out.

One of the things I like about this camp is their ability to accommodate special diets; ie gluten free since Kayla has Celiac Disease. It's so nice not to have to worry about packing gluten-free food for her since it's all provided.

We had a fun family weekend getaway with activities like bowling, fishing, boating, horseback riding, archery, dance parties, and the ever-popular Stage Night.

I think the highlight of this trip was the archery experience. We all got a bull's eye by popping the balloon ... that was pretty exciting! Speaking of archery - Kayla is on the archery club at school this year; I'm happy for her and can't wait to see how she does.

The theme was An Evening In Paris; wear something black and white with a splash of pink!

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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.



 

Meet Flat Fetti

Kayla has a small collection of Shoulder Buddies. I think it's a sensory thing with the hair. She doesn't wear them on her shoulders with the circle coin-like magnet that comes with it, but instead she mostly just sleeps with them under her pillow. While we read books before bed, and as she's falling asleep, she'll 'brush' the hair across the palms of her hands, or just plays with the hair in general.

I let her take one with her to the first overnight camp she went to this summer. It didn't come home with her. I should've known better. I thought because she didn't carry it around with her every where she goes, and that it stays under her pillow, it would be ok. I called the camp and they looked in/around the bed, the shelves where they luggage/clothes were, the laundry room since bedding was already brought there, but I never heard anything back. They said no one remembers seeing it and it wasn't on the inventory sheet when they checked in her luggage. Which is strange because I put it it in the zippered part where her toiletries were kept. But she didn't come home with a pair of leggings either and they were on her inventory sheet.

It happens, I know. Things get lost at camp or end up going home with someone else.

She was really sad for awhile. Every night at bedtime she would say she wanted Fetti back. Unfortunately I haven't found it at any of the stores around here.

So Lucas got the idea to make her a replacement one. He tried drawing out the shape from looking at one of her other buddies, but then said he couldn't remember exact what it looked like. They each have their own logo on their bodies. So I pulled it up on the computer - it was listed on here, but is no longer - and then I told him I could just print out the picture for him.

I printed it out, he cut it out and then traced and cut out the outline for the back. He taped them together at the top and the bottom so the middle could open and have a sort of 3-D effect.


As my mom would say, "Bless his heart!" He can be so thoughtful and considerate sometimes! He surprised Kayla with his version of "Flat" Fetti. While she was surprised and thankful I know it's just not the same for her. She doesn't sleep with it under her pillow like she does with the rest (and Lucas even asked me why she doesn't). I think it's because she can't get the sensory feedback of the hair!

But I think this one is special because it was thought of and made with love from her brother.

 

Notes to the Tooth Fairy

Way back at the beginning of summer, and I say way back because my kids go back to school in 2 (!) weeks, Kayla lost a tooth while she was at Vacation Bible school. And when I say she lost it, I mean she literally lost it. I picked her up, she told me her tooth came out, showed me the missing spot, but when I asked her where her tooth was she said she didn't know.

We intended to write a note for the tooth fairy that night, but forgot. One day turned in to another in to another and before I knew it we forgot about her missing tooth and the letter. She didn't seem too concerned about not putting her tooth, or a note, under her pillow and getting something in return. Maybe because this wasn't her first, or second, or third (I've lost track of how many she's lost now) lost tooth.

But Lucas talked about writing a note. When he lost his first tooth in Indy he said he wanted to write a note to let the tooth fairy know that Kayla lost-lost her tooth. But with how busy we were at convention we just didn't get around to it.

Lucas eventually did get that note written, as well as a thank you note to the tooth fairy for the $5 he got for his first lost tooth.

Speaking of loosing teeth. Lucas came back from his sleep-away camp with his second lost tooth! And the tooth fairy visited him at camp ... he was excited to be left with these goodies!

  

His Turn For Camp

I've blogged here and here (about our family weekend) about camp Victory Junction.  We went to another Family Weekend back in April (how have I not blogged about that?!) and Kayla just went for the first time by herself this summer. 

Among many great things about VJ is the fact that they have a summer camp just for the siblings of someone with special needs. A time for the siblings to get to experience the fun of being away at camp, without your parents, for a few days.

Lucas is only 6, so I was a little hesitant about sending him for his first sleep-away camp this summer, but he's not the only 6 yr old there, so I was in good company! He was so excited at the opportunityy to go back to VJ by himself.

Sometimes it's hard having a sibling with a disability, and sometimes it's hard just being the younger sibling, period! We hear a lot of, "How come Kayla gets to do x,y,z? Why is x,y,z just for Kayla? Why is that only for kids who have a disability?"

We try to find the balance of teaching those life lessons: life isn't fair, everything isn't always equal, you won't always get to do the same things as Kayla just like she won't always get to do the same things as you, there are some things you'll be able to do that Kayla won't be able to do. Kayla is older, she wasn't doing those things at age 6.

We don't want either of our kids to have a sense of entitlement that they deserve everything and anything.

But some things are simply harder for a 6 yr old to understand, as much as we try to explain it.

Kayla didn't get to go to to a sleep-away camp at age 6. I don't know if I would have been ready/comfortable to send her to one at that age! Maybe it's because Lucas is my second child and I'm a little more relaxed with him, and it probably helps that we've been to VJ twice as a family and I really feel comfortable with their program and how things are run at the camp.

Whatever it is - Kayla had the opportunity to attend 4 camps this summer, so I went ahead and applied for the sibling camp for Lucas. To give him an opportunity that was just for him (although the irony isn't lost on me that the only reason he has this opportunity is because of having a sibling with a disability!)

So he's off at camp and he had no problem making friends as soon as we got there - he was almost too busy to even stop and tell me bye!

Back From Camp

Kayla recently returned home from her second sleep-away camp and both were a big success. Almost too much of a success!

On my way to pick her up from her first camp I imagined that she wouldn't be happy to see me at all. What with her reaction upon my returning with her sneakers the day I dropped her off? I thought for sure she would say that she didn't want to go home.

Instead I was pleasantly surprised when I received this greeting:

"MOM! MOM! MOM!" screamed at the top of her lungs as she ran all the way to me with arms opened wide and then gave me a big, tight, lingering hug. I guess she missed me after all.

And then that was short-lived.

She fell asleep on the way home. Just over an hour later she woke up, disoriented, and said, "Where we going now?" Me, "Home." K, "No!" Then she fell back to sleep for about 5 more minutes.

Woke up and said, "Mom?" Me, "What Kayla?" "I want to go back to camp." she managed to get out before the tears. "I want to go back to camp now." And then she sobbed. And sobbed.

She refused to get out of the truck when we got home. Wouldn't give Joe or Lucas a hug after I finally managed to carry her inside.

Lucas tried to cheer her up to no avail. She was despondent. She kept saying she wanted to go back to camp now.

I thought a good night sleep would help and she would be back to her usual perky self in the morning.

Not so much. 

When she woke up she stayed in her bed crying about wanting to go to camp and see all her friends. 

I told her we had to get up, get dressed, eat breakfast and take Lucas to VBS and then she had to help me get some things at the store.

When we returned home I sent her upstairs to get her glasses that she left on her dresser. She never came back downstairs. She stayed in her crying off and on for about 2 hrs. I could hear dresser drawers open and close. I could hear her talking to herself. I knew I had to let her work it out for herself, because up until then she didn't want any comforting. 

When it was time to get Lucas I went upstairs to find Kayla back in her pjs and in bed. She had also repacked her suitcase - she put all the contents of her pajama/socks/underwear drawers in her suitcase.

It took about 1/2 a day before she finally was more like herself and she went outside to play with Lucas. 

I'm glad she had such a great, fun, amazing time at camp, but wow! Emotional overload!

She did better coming home from her second camp though. Maybe she was resigned to the fact that she was going to come home whether she wanted to or not! Or maybe it was because this camp was only 3 nights away. Joe said she was a little sad and quiet on the way home, but it was nothing like when she came home the first time.

I'm so glad she had the opportunity to attend both of these camps and have a little bit of 'amazing' built in to her summer!

 

Off to Camp

Kayla is now at her first sleep-away summer camp! I don't ever remember going to a sleep-away summer camp when I was growing up. Either the opportunity was never there, or it wasn't something that was thought of for us to go to during the summer. So I have no experience or memories to look back on for how it must be to attend an away-camp.

This camp is for 5 nights and 6 days. I'll miss being able to tell her goodnight every night, but I imagine that Kayla is fully enjoying herself!

She enjoys going to hotels and looks forward to swimming in the hotel pool. This camp takes the kids to the pool two times a day. She'll be thrilled with that opportunity!

The morning we took her to camp she was up bright and early; as per usual for her! It was around 615. She came downstairs, fully dressed, and I heard her open the closet door. She was getting out her shoes. She was ready to go. This, despite the fact that the rest of us were clearly still in bed and not the least bit ready to go anywhere.

I mumbled to her that it was only 640 and not time to go anywhere. "What about camp?" was her reply. Soon, Kayla, soon, just not now. I convinced her to snuggle in our bed and she was obviously still tired as she fell asleep within a few minutes.


When we pulled into the parking lot of the camp; hadn't even parked yet, she excitedly yelled, "Bye Mom! Bye Dad! Bye Lucas!" as if we were just going to let her hop out of the van and then be on her way!


No qualms from her whatsoever about us leaving her there.

It probably helped that her BFF was also at camp. In the same cabin. They were going to get to spend a whole week together along with another girl they both know.

Funny story: When we arrived at camp I realized I forgot to pack her sneakers (I just knew I was going to forget something!). Thankfully there is a town about 15 minutes away so we found a shoe store and bought her some sneakers. We returned to camp to drop them off. I was walking towards the dining hall where they had just finished lunch, but Kayla was already outside with her counselor (the singing was too loud for her). Her counselor pointed me out and Kayla's face immediately fell. She held on to her counselor's arms and I could hear her say, "I don't want to go home!" She was not happy to see me. Poor girl thought I was coming back to get her before even spending one night there! I assured her I was just bringing her some sneakers and she could stay.

I'm so excited for her to have this experience; I just wish I would be able to hear more about her time there. While she will be able to tell me about it, it will probably be limited in information.


It's definitely quiet around here. And Lucas obviously misses her as the next morning after drop-off the first thing he said after we were all out of bed was, "Now what?" Ha! He didn't have his playmate with him.

This is just another step towards independence and letting go ... for her and for me!

 

Last Day of School

Last day of 4th grade!

 

 Last day of Kindergarten!

 

 Ready for Summer!

Bittersweet. That's what the last day of school is. No more comfort zone of the same teacher and classmates and routine all school year long ... now summer break and then on to a new grade (5th! 1st!), new teachers, new classmates.

It's also bittersweet because while it'll be nice to take a break from school and the mad rushes in the morning, and preparing lunches and outfits the night before ... I will also miss having my house quiet and all to myself! I will miss being able to run errands in half the time it takes me than when I have kids tagging along!

We will have one week of somewhat quiet, lazy, downtime days before the craziness of summer schedules begin.

VBS, ESY, camps, camps, and more camps, and a trip to IN for the NDSC convention in July.

Kayla is going to her first 2 sleep-away camps this summer. To say I'm nervous would be an understatement. But I keep telling myself it'll be good for her - the independence away from home - right? Right?!

She is going to the first sleep-away camp with her best friend so that will be nice to have a familiar face. The second camp is to Victory Junction - she is at least familiar with it since we just went there for a family weekend, but I keep reminding her that this time we're dropping her off and Lucas won't be with her either.

Speaking of sleep-away camps, Lucas is actually going to his first one too. How can that be?! He is going to the sibling week at Victory Junction. I kept asking him if he was sure he wanted to go without us and spend 4 nights there and he insists that he wants to and is ready. He had such a blast during the family weekend and can't wait to go back.

Summer adventure awaits us!