Camp New Hope Vacation

What an incredible week we had! To learn more about Camp New Hope, see my previous blog post. To see our plethora of photos, feel free to visit our online album.

Day 1 - We arrived at Camp New Hope in the afternoon. The weather was beautiful and we basically spent the evening making dinner and getting settled in.

Day 2 - Michael and I got to take a ride up to the top of the Camp property and look at the view around us. This was the only place we could get cell phone service with our AT&T phones.  The boys got to spend fun time in the "shed" and the camp dogs, Mo and Nash, followed us around camp looking for a free handout.  The grandmas started on their week long project - a 1000 piece puzzle where all the pieces were about the same color.

Beautiful view from the top of the property. You can see one of the neighboring Christmas tree farms. We are convinced that  Jefferson, NC / Boone County is the Christmas Tree capital of the US. 

With Grandma K watching Rebekah at the lodge, Michael and I actually got to sneak away for a little time together (which doesn't happen often!).

Michael taking advantage of the cell phone service on top of the mountain to call into work.

Grandmas working on their puzzle.

The "Shed"... slightly bigger than most sheds. 

The Shed is filled with ping pong, pool, air hockey, video games, play area, and, what became Elijah and Grandpa's favorite feature, INTERNET! They could only get connected at the shed. I managed to stay offline all week.

Mo (white) and Nash (black) are the camp dogs. Mo likes hitching a ride on the Kabotas.

Day 3 -  This was a really busy, fun-filled day!  Michael, Grandma B, Elijah, and Jeremiah went fishing. No luck catching anything, but the other family at the camp this week caught like 90 fish over the course of the week! We took the grandparents for a Kabota ride and spent some downtime in the lodge. A park ranger came to the Shed and did a presentation for us on animals found in the NC mountains. We got to feel the pelts of many different animals and learn a little about NC nature. We also did a little tubing down the river. We ended the evening taking our whole crew to the local movie theater to see Madagascar 3. They provide free admission for the families staying at Camp New Hope!

Jeremiah and Grandma B fishing in the New River.

Kubota transportation to get around the camp!

Everyone loves to ride the Kubota!

Chillin' on the couch.

Relaxing in the sunroom.

A Park Ranger came and did a presentation for us about all the local SC animals. 

Family tubing time!

Day 4 - Day 4 started out with a nice mountain drive to a local family's homestead where we got to take a tractor ride around the property, go for carriage rides, and do a little horseback riding around the stable. The kids played a outside for a good part of the day, and we ended with gigantic marshmallow smores cooked in our personal lodge fire pit. I do not recommend the giant marshmallows, they make a big mess!

Fun on the lodge's playground area.

River playtime. Daddy strung up the boys as they went out over the rapids so they didn't accidentally get wisked down the river.  It was a pretty shallow river for the most part.

Helicopter riding.

Grandma and Grandpa K petting the horse.

Hi ho Silver, away!

Elijah riding...

Susan and Rebekah taking a ride.

Grandma B enjoying a carriage ride.

I think the boys enjoyed most the digger toys in the middle of the barn.

Boys will be boys!

Smores time!

Cooking smores over our firepit.

Don't ever use the gigantic marshmallows for smores. They are way too messy!

Day 5 - Michael started out the day taking his 84 year old mother on a short canoe ride. After lunch, we had a personal visit from Santa Claus! Michael, Elijah, Jeremiah, Josiah, and I took a 2 1/2 hour canoe ride 5 miles down the New River, then hauled the canoes back to camp on a trailer. We did pause for some yummy hand-dipped ice cream in waffle cones! Isaiah missed out on that, but he was spending the afternoon playing games with the grandmas. Since this was the last full day at camp, we had the boys spend lots of time playing games with grandparents while we started packing up all of our equipment and luggage, and Michael showed up just in time to help the Grandmas finish their tough puzzle before the end of the week!

Family canoe time.

Michael, Elijah and Josiah

Getting ready to canoe.

Despite being on vacation, we did make Rebekah do a little therapy. Grandma K had fun entertaining her.

Josiah and Josiah teaching Grandma K how to play the game Hissss.

Elijah, Jeremiah, and Grandma B playing Racko.

The Grandmas finished the puzzle before the end of the week! Michael showed up in time to try to put one of the last pieces in. :-)

Michael taking his mom for a canoe ride.

On their way for a canoe ride.

This is Santa Claus's summer transportation. The license plate even said North Pole.

Santa comes each week to visit the kids at the camp.

Rebekah thought his beard was interesting.

Day 6 - We got a special treat on this day. A photographer came and took our family up into the trails and took pictures of all of us. We will get edited, royal-free photos sent to us on a cd once they are done working on them!  We left camp and headed home after lunch.

Trying to get a picture taken in the woods. We were able to get Rebekah to smile the whole time, but Josiah was being a stinker!

Here is the photographer who donates her time and effort to take family photos for the Camp New Hope visitors.

This is Randy, the camp Director. She has been working full time at Camp New Hope without pay for several years. She has a heart of gold!

Needless to say, this was an incredible week! We hope we get the opportunity to go to Camp New Hope again, and we are so very grateful to the Adkin brothers, and to Randy, Steve, and all the other volunteers who work hard and sacrifice much time and money in order to provide a special experience for our special children.

Camp New Hope Intro

In the NC mountains of Ashe County, is a breathtaking160 acre property that sits on the edge of the New River.  There is a redesigned 4 bedroom hunting lodge that can sleep 10 people. There are 4 wheel drive utility vehicles (Kubotas) to ride the many trails through the mountainside, there is canoeing and tubing on the New River, there is fishing, volleyball & firepits, there is a fun play area in the "shed" with air hockey, pool, video games, and all kinds of toys and things to occupy the children. The best part is the kitchen comes stocked with food, and the Camp Director, Randy, cooks many of the suppers for the families attending the camp. This place of rest and renewal is called Camp New Hope, and we were blessed to spend last week enjoying it with my Mom and Dad, and Michael's Mom (his father passed away 5 years ago). This was truly a once in a lifetime opportunity for our family as we have never been on a vacation where we've had both parents there since mine are in PA and Michael's is in OH.

Camp New Hope is a privately owned, nonprofit, no-charge facility for families who have children with life-threatening medical conditions.  It is run by volunteers who dedicate much time and energy into making it a special week for our special children. It was created through a vision of two brothers, Mark and Will Adkins of Waterfront Group, who have selflessly used their property for the purpose of giving a gift of lifetime memories for families like ours.

Welcome to Camp New Hope - "A Special Place For Special People"

Beautiful scenery driving through the property.

One of the many lovely little garden areas to give you a spot for peace and tranquility.

Another view of the New River from the property.

"Rebekah Mtn" - Each time a child visits Camp New Hope, the camp names on of the 4-wheeling trails after a child. Then the signs hang in their "shed" until the next visit from that child.

Pure beauty!

Garden of Hope

Garden of Hope

Sun Room of the lodge, complete with a row of rocking chairs and a few tables for game playing so you can sit and watch the river below.

"Bob" is one of the lodge decorations. The lodge is a  renovated 1950's hunting  "lodge" that has been expanded and adapted.  It can hold 1 family - up to 10 people in 4 bedrooms.  It is filled with decorations like this bobcat.

Looking up the hill at the lodge from the road in.

Entrance and grilling area of the lodge.

Go to Camp New Hope's website to donate online or to download an application/physician form to apply for camp qualification.
Check out Camp New Hope's Blog which features the families that visit each each week.
On facebook? Like Camp New Hope's page!

Little Milestones... Big Dreams

It's been awhile since I've highlighted Rebekah's latest accomplishments. Besides turning 3 on April 21st, Rebekah has gained some important skills in the last 2 months which give us more hope of what she may be able to do one day. Also, it has been a year since she has been admitted to a hospital! So we have had a pretty healthy year too.  And while these are all little milestones for a "typical" child, they are big dreams for us! And while there are some trisomy 18 kids that seem to do some of these things more on a typical developmental schedule, Rebekah is a vision of hope for those with trisomy children that have many defects and markers in utero. She has come a long way from her early prognosis, and she is definitely redefining "incompatible with life"! 

So please enjoy some pictures and videos of Rebekah's latest accomplishments and know that there is hope for children with trisomy 18!

 

Right before her birthday in April, Rebekah starting pushing up to a standing position when supported. This was huge as every time we would put her feet to the floor, she would pull her feet up and just dangle.  We think all of the work daily in her stander has made a big difference.  Here is a video of her dancing with her Daddy: http://youtu.be/tSQvEnzW9TU. 

Rebekah is really starting to interact with people and "explore" their faces when they talk to her. It is so sweet seeing her reach up and touch someone's face, or arm. She has also discovered she can reach up and pull her own hair!  Here she is with our dear friend, Jeannette, mother to T-18 angel, Caleb.

In May, Rebekah started preschool! Here she is on her first day jumping right in at circle time and hitting the big mac button on cue. She is attending a special needs school designed for kids just like her. There are a maximum of 6 kids in her room, and there is a teacher, an aide, and a nurse also in the room. Although she only spent 1 month at school before summer break, it gave us an idea of what we want to do in the fall and we intend to have her continue. The staff was wonderful to her and she gets exposed to so much more than what we can do here at home.

Rebekah in her first gait trainer. We got her to take a step with a lot of coaxing. Hopefully next year at school she will progress and begin to stand/take steps on her own. I tried videotaping her taking a step in it, but she wouldn't perform, of course! She did take a double-step leap though! You can see a video of her here: http://youtu.be/p06LsYo3IeI.

Here is her latest "trick", fresh off the press! Rebekah was born with classic trisomy 18 clenched fists and indwelling thumbs. Her fingers are short and her thumbs are webbed which make them extra short. The muscles in her hands are still extremely weak and the clenched fists/short digits contributed to inability for Rebekah to grasp and use her hands in a useful manner besides just batting at toys. Just the other day, Rebekah finally got a handle at using her hands to knock away/push a cloth off her face. In the past, she would just let it stay on her head, or she would shake her head back-and-forth until the cloth would fall away. We have been thrilled with this new skill, because her development depends on her ability to be able to hold on to things. This gets us a step closer! And I believe once Rebekah masters this task, she will start developing intellectually at a faster rate than she has been. We have spent the last few days making her repeat this task over and over again, making sure it isn't a fluke. She has done it every single time! And, she is getting a little tired of us putting stuff on her face now. :-)

A New Chapter... PRESCHOOL

We have been extremely busy over the last few months transitioning Rebekah from early intervention to school-based services, and determining how we want to handle her transition. Making a decision to actually send her to school is extremely emotional and scary. One part of us wants to keep her safe and sheltered, the other part of us wants to experience more than we can provide in our home (in terms of socialization with other kids her age, access to sensory rooms, ongoing therapies, and equipment we do not have, etc.).  And, of course, the fact that she has a trach and is medically fragile complicates putting her in an environment where both we and the school staff feels comfortable.

Rebekah turned 3 on 4/21/12 and, according to IDEA, can start school at that time. Because of the amount of paperwork required for her medical needs, it took us a few weeks to cover all of the requirements. School is out end of the month, and it may seem silly to send her to preschool for 3 1/2 weeks, but we are looking at this as a trial run to see how we like having her at a special needs school.  There is a huge debate whether to mainstream special needs kids, or segregate them. There are pros and cons to both views, and there are scenarios that combine both possibilities.

The county that we live is one of the top 50 districts in the country based on size, so we have some options available to us that may not be available in a smaller school district. One of our options is The Washington Center.
Washington Center is a unique “one of a kind” facility. It is a separate school that serves students ages 3 to 21 with severe mental disabilities.  Many of these students have concurrent challenges such as autism, blindness, deafness, or physical disabilities.  The mission of Washington Center is to provide opportunities for students to explore and develop potential for independent functioning and community involvement by addressing students' individual needs and creating a partnership with home, school, and community.

We are starting here because she can be in a classroom with a dedicated nurse, and a 2:1 student:adult ratio. The facility is filled with equipment and sensory items that are perfect for Rebekah.  One little girl in her class started school for the first time this year at the age of 5. The parents were told she would never walk and wouldn't "do much". When we saw her in the class, she wasn't just standing, she was walking and even remained standing for the entire class circle time. She had developed this ability and the stamina to stand for 45 minutes all in the past school year.  All of the children (who from outside/inexperienced eyes probably appeared severely disabled and non-communicative), participated in circle time Big Mac button pushing, making selections, voicing happiness and displeasure... I was happy to spend the day there so I could see the wonderful things they are working on with the kids. Most of all, we are very happy with her classroom teachers and nurse (who will be with her in the fall as well).

Rebekah's First Day of School: Rainbow Fish was the story for the Circle Time. The teacher programmed the Big Mac button to say "rainbow" when pushed. As they read a page to each of the children, they had them press the Big Mac whenever 'rainbow' was mentioned in the story. Rebekah caught on, and pressed the Big Mac when it was placed in front of her.

Rebekah's First Day of School:  "Good job, Rebekah!" Her teacher was quite happy to see her catch on so quick. Rebekah was quite proud of herself and sat smirking and waving her hand in excitement.

During circle time, the teacher talked about the weather. It was a cloudy day today. The students got to touch a cloud as they discussed the weather. Rebekah joined in and swiped at the cloud as well.

Here's a picture of some of the kids in Rebekah's class. She is in a special needs school and all of the children are disabled. One of the considerations in preparing for school is to determine what "least restrictive environment" you want for your child. In Rebekah's case, because of her trach, our options are a little more limited. However, this school is wonderful and there is a nurse, a teacher, and an aide dedicated to her one classroom of no more than 6 kids.

Rebekah's first art project! Because rainbow was the theme of the day, they painted a rainbow with watercolors. She helped hold the paintbrush and was quite interested in the activity, and followed the paint brush/line of paint as it went across the table.

Assessments, IEPs, Special Education Services... Oh My!

This is an overview of transitioning your special needs child from Early Intervention to Special Education Services.

Under IDEA (Individuals with Disabilities Education Act), a federal law concerning the education of students with disabilities, qualifying children are entitled to early intervention services before the age of 3, and public school services from 3-21 years old. For those delayed in multiple areas, there is a battery of tests performed, including a multi-discipline panel of therapists, psychologists, and specialists, leading up to a child's 3rd birthday. IDEA and your rights under this law are incredibly important to parents with children that have any type of delay or behavioral issue. The purpose of all of this is to provide as much early intervention as possible. Just google early intervention and you will find tons of resources that point to the long-term cost-effectiveness and success by providing these services.  So, if your child qualifies for them, please take advantage of what is available to help your child succeed in life!

Child Find
Child Find is a component of the Individuals with Disabilities Education Act (IDEA) that requires states to identify, locate, and evaluate all children with disabilities age 3-21 years old. Before your child's 3rd birthday, contact your local school district and request a Child Find screening to determine if your child is eligible for Special Education Services. Children will be assessed in these areas:

• Developmental (self-help/daily-living, motor, cognition, social/emotional, orthopedic)
• Speech/Language (communication)
• Hearing
• Vision

Depending on the area and level of delay, the next step may be additional assessment/testing.

Assessment/Testing
In our school district, the next assessment phase is called Arena Testing. This is where a long list of tests take place with your child by a room full of important-sounding people. It can be intimidating being in a room full of people with fancy titles, advanced degrees, and ideas about what your child can/can't do. This coupled with the fact that your child will NOT "perform" as you hope because of being thrown in an unfamiliar environment with tons of new faces and sights and sounds. And the more significantly delayed your child is, the longer this appointment lasts! I think ours was 2 hours long.
We also experienced a home visit for additional data collection, and had the opportunity to have vision and hearing screens done (but we had already had these tests done independently and submitted the reports for consideration). We also had to provide record access to several different doctors and therapists. Much information goes into the prep work prior to the IEP meeting.

Individualized Education Program
An IEP is the Individualized Education Program that defines the special education services (SES) you will receive from a public school district. It is a required document if your child is to receive SES. It is truly individualized for each student, and contains information required by law such as performance, annual goals, special education and related services, accommodations, participation in state and district tests, needed transition services, and measured progress.
Typically the parents go into the IEP meeting and the IEP team will already have a draft IEP available. The team, very similar to the assessment team, will go over the child's goals, requirements, etc. This can also be an intimidating meeting for an unprepared parent. Remember that you do not have to leave the meeting signing anything and you can take the proposed IEP home to review before signing it.
The best preparation for an IEP meeting is any of the Wright Law books on IEPs (One good book: All About IEPs) AND input from parents who have already been through the process and have similar disabilities to your child. Wrights Law website has excellent resources, and Exceptional Parents also has a great resource packet.

Rebekah's IEP Overview
This is a real high level look at the kind of goals we chose for Rebekah's IEP. Each goal has a list of sub-tasks that include many different 'mini-goals', but these are the ones that she will be measured against to determine "success". If Rebekah manages these goals before the end of the 2012-13 school year, we will be able to adjust her IEP. Moderate assist, in the context of creating measurable goals, means that the student does 50-75% of the work.

1. Put toy in container 2 out of 5 tries with moderate assist. (OT goal)
2. Transition from floor to sit position 2 out of 5 tries with moderate assist. (PT goal)
3. Participate/respond in back-and-forth communication using facial, verbal, body cues and/or augmentative communication device. (ST goal)
4. When Rebekah's name is called, she will respond by turning her head towards the source and vocalizing in response 1 out of 3 tries. (Classroom goal)
5. When given a toothbrush, Rebekah will grasp it and bring it to her mouth 3 out of 5 tries with moderate assist. (Adaptive Skills goal)
6. Given a choice between 2 pictures, Rebekah will identify herself in 2 out of 3 tries. (Vision goal)
7. When given a choice between 2 things (whether activities, toys, etc), Rebekah will indicate a preference in 3 out of 5 tries using eye gaze, vocalization, or touch. (Social Behavior goal)
8. Rebekah will engage in reciprocal play / turn-taking tasks (such as rolling a ball) in 4 out of 5 tries. (Mommy's goal)

Resources

Some great resources for IEP planning (and general disability law): 

• Wrights Law is the best resource for everything you want to know about Disability Law - from advocacy to education/IEPs to rights as a parent. Their books are excellent resources and you can learn so much about many of the key laws (like IDEA, No Child Left Behind, FERPA, Section 504 & ADA, etc). If you have a special needs child and you don't recognize these laws, you need to go to Wright's Law and do your homework!
• Partner's in Policymaking is a national program that teaches parents and self-advocates the power of advocacy to change the way people with disabilities are supported, viewed, taught, live and work.  There are hours and hours of free online training available, and many states offer group training on the curriculum with a state-specific focus.
• Exceptional Parents Unlimited is an excellent resource for a parent facing extraordinary medical, developmental, or parenting challenges. 

Against the Odds - Living with Trisomy 18

Rebekah celebrated her 3rd birthday on April 21, and she celebrated surrounded by her trisomy family! Thanks to Russ Bowen at ABC's WLOS 13 in Asheville, NC, we were able to share the miracle of her life and the blessing that she is to our family.  We are so very grateful to WLOS for running this Special Report on trisomy 18 and sharing our hope and faith with others! Please grab a tissue before watching and SHARE, SHARE, SHARE!! We want people to know that this is a journey worth walking.  (The direct link to the youtube video is here: http://www.youtube.com/watch?v=M5JDrQrwYFY)



The video was taken during the weekend of Rebekah's birthday. We celebrated with 6 trisomy 18  and 1 trisomy 9p friends. We also had the family of a chromosome 2p- (microdeletion), and two families who have lost their trisomy 18 children. Our friends came from SC, FL, and GA.  Below are just a few pictures followed by a link to our facebook birthday bash photo album.

Josiah decided he wants to be a camerman when he grows up!

Beautiful trisomy kids and their mommas

Rebekah showing off her pretty dress and newfound standing skills

Lisa, trisomy mom to Joey, receives a kiss from Kaylen, who has full trisomy 18 and is 11 years old!

There are many more photos to be seen! Please check them out on our birthday facebook album.