I Heart Rogue Valley

I’ve been learning a lot lately about what it means to be a part of a community—mostly that I’ve been taking it for granted.  I tend to be a bit introverted, myself, but it’s by choice—I tend to enjoy seclusion.   If I choose to, I can make an effort to connect with people around me.  I can attend community functions.  I can choose to make eye contact with neighbors, and say a friendly “hello”.  Being more cognizant of those within our community who experience disability, I realize not everyone is secluded by choice.  For many, they don’t feel welcomed or comfortable out in the community; it may be difficult to get out due to mobility issues; they may have trouble relating to others.  Whatever the reason, not everyone feels “included” in their community.

I am very excited to be a part of a community building event taking place on July 28th in the Rogue Valley.  I Heart Rogue Valley is a faith based effort whose goal is to initiate lasting change in communities through volunteer service projects and dynamic live events.  The Heart Campaign has been around since 2008 and the transformation that takes place in a community after one of their events is something to behold.  I was fortunate to be a part of I Heart Ashland last November, where over 500 volunteers came out and served within the city of Ashland, touching lives and showing that LOVE IS ACTION!

This year, the Heart Campaign is taking over the whole Rogue Valley.  There are over 50 service projects with over 2,000 volunteer opportunities (we’re hoping to get up to 3,000 by the event date) in Ashland, Central Point, Medford, Phoenix, Prospect, Talent and White City.  While I have been deeply touched by being the recipient of volunteer service in the past—nothing compares to the feeling of serving others.  There is nothing that can make an individual feel more like an included and valued member of their community, than when they are giving of themselves to make that community better.

After last November’s Ashland event, one thing that really

stood out for me was a large number of seniors who said they wanted to serve, were excited about the event, but found nothing they felt comfortable doing, since most of the projects involved physical labor beyond their abilities.  In addition, I know a number of families in our communities with a member that experiences a disability.  Likewise, they may want to serve, they may have a desire to be a part of a great community building event like this but not be able to participate due to mobility issues, health issues, etc.  I did not want to see a community building event—especially the magnitude of this one—leave out anyone who wants to serve and find a valued place within their community.

I am so excited to announce that as part of those 50+ plus projects, there is a 100% accessible project, welcoming people of any ability to participate and make a difference in the lives of those less fortunate within our community, those without a home to call their own.  The accessible project is called “Medford – Care Package Project” and you can volunteer for it on the I Heart website:  www.iheartroguevalley.org, along with any of the other projects.  

The Care Package project will involve creating brown bags filled with edible goods and other necessities, which can be handed out to homeless persons in our community.  Anyone can be involved in this project!  Families can serve together.  People struggling with feelings that they may not have much to offer—let me tell you that you DO—you can help provide food and show love to someone who has nothing.  You are a valued member of your community and you can feel like it by giving back to your community, working alongside others, being a part of something bigger than yourself.

I would encourage anyone reading this blog post, if you are going to be in the Rogue Valley on July 28th, sign up for a project.  Grab some friends and sign up together.  Take your whole family and volunteer together.  There’s a project for you, whether you’re concerned about accessibility or not—there’s a project for you and you can make a difference in your community.

After the day of service there will be a fantastic free concert and talk given by world renowned speaker, Nick Vujicic at the Lithia Motors Amphitheater in Central Point.  There’s a lot more I can say about Nick and his message, but I will save that for another post.  You can find out more about him if you just can’t wait by visiting www.lifewithoutlimbs.org. 

Six Months of Transformation Described in Five Minutes or Less

Graduating Partners in Policymaking Class of 2012

Well, it’s all done!  Six months of classes in Salem, countless hours of reading, stepping outside my comfort zone to interview leaders in the community, and time spent on examining my own assumptions and beliefs on disability.  Saturday I graduated from Partners in Policymaking, a challenging leadership and advocacy course that was sponsored and administered by the Arc of Oregon and Oregon Council on Developmental Disabilities.  I am a very different person than I was six months ago—for the better! 

Prior to the graduation ceremony, each of us in the class were required to put our practiced public speaking skills into action and give a speech, no longer than five minutes in length, that encapsulated our experiences in PIP, as well as what we would be doing in the future with our new skills.  What a challenge!  How do I sum up a life-changing experience that so profoundly affected my family, myself and as a result, my community into just five minutes?   I could talk for an hour about what PIP has meant to me.  Well, it took me until 12:30 AM the day of my speech to finally cram it all together into a condensed version and here’s what I came up with:

The four of us from Southern Oregon

My name is Heather Molzer and I'm from Medford. I heard about Partners in Policymaking about three days before the application deadline and a scrambled to get all the required information together to apply.  It sounded like an incredible program and I was struggling, as a fairly new full-time homemaker with how I could be a better mother to my sons.  I knew I was missing some vital piece of the puzzle when it came to advocating for my children, but I had no idea what that piece even looked like.

When I got my acceptance letter and the first session material, I was very excited.  I was challenged with the reading material and before even attending the first session I wondered if this program was actually going to be a good fit for me.  That first session went beyond breaking down barriers and assumptions. I remember calling my husband at each break and just sobbing into the phone.  I remember coming home from that weekend, trying to disseminate the information I had absorbed to my husband but mostly succeeding in more sobbing.

After a few days when I could a hold a short conversation concerning disability without turning into a blubbering cry-baby, I sat down with my son, Cainan.  As we prepared for him to transition into a new self-contained, 3rd - 6th grade blended class at a school even further away than the one he was currently attending, I asked him if it was what he wanted.  I asked him if he wanted to be in a class like he had been, with kids in 3rd through 6th grade, who have disabilities or if he would like to be in a regular class with kids his age who do not have disabilities.  To my surprise, within moments he had a definitive answer and it was to be in a regular class with kids his age.  Further, he wanted to go to the same school as his younger brother, our neighborhood school.

Thus began my journey into the world of Partners in Policymaking and affective advocacy for my son.  That piece I had been missing...it was understanding that Cainan's disability didn't define him, that he had more in common with typical kids than he had differences and that he deserved to be a part of a community that accepted him as a whole person.  And that was just what I got from the first weekend!
I have to thank my husband, who has been a tremendous supporter of this process; who has done his best to listen through the tears after each session about all of the amazing information I learned; who has encouraged me, helped me brainstorm, presented a united front with me through IEPs and Placement meetings.  I also have to thank my mother and my in-laws who have given up one of their weekends each month to watch our boys, as well as multiple hours as I toured sheltered workshops, met with community leaders or legislators and completed tasks inspired or assigned by Partners in Policymaking.  I couldn't have completed this journey without their support.

Let me end by saying not only will Cainan be attending our neighborhood school next year with his brother, in a general education setting with the supports necessary for him to be successful, but my perspective on community building and acceptance for those who experience a disability has so radically changed that I have grown far beyond just advocating for my own children.  This summer, I am involved in the organization of a huge volunteer based community service event that will be taking place.  While numerous projects will be serving all aspects of the communities in the Rogue Valley, most require the ability to complete manual labor, outdoors, in the middle of July.  I wanted to have an opportunity available as part of this event that is completely accessible, so that people of any ability can come together as valuable members of their community and serve in an integral way.  A project like this wouldn't have occurred to me six months ago.  Six months ago, I would have argued with anyone that said Cainan belonged anywhere besides a safe, segregated classroom.  Six months ago I was trying to put together a puzzle that didn't have all the pieces.  I am so grateful that PIP gave me the pieces to create a stunning picture I had never even imagined.

A is for Advocate

Advocate – (noun) a person who pleads for or on behalf of another; intercessor.

I’ve been learning a lot about advocacy in the past few months.  I guess I’ve always been an advocate for my kids (as most parents are) though I would not have called it that.  But in the past few months I’ve learned how to be a better advocate.  I’ve learned how important it is to consider their own wants and needs in addition to what I know is good for them.  I’ve learned how to balance my love and personal desires for them with their hopes and dreams, to morph those into tangible goals that I can promote.  I’ve also seen myself transforming into an advocate for those outside my family, into the more general sphere of issues that affect people with disabilities and their families.  It’s been a life-changing transformation for all of us in my family.

Now I am taking all the great advocacy tools I’ve learned: person centered planning, identifying strengths, creative strategies and problem solving, negotiating skills, networking and relationship building skills…the list goes on, and I’m passing them on to my kids.  I’ve found that as passionate and successful as I am in advocating for my sons, nothing will be better than imparting these skills to them so that they can successfully advocate for themselves and eventually others.  It’s been exciting to see the growth in my own advocacy skills but exhilarating to see my boys’ emerging skills evolve.

Cainan and Asher are 6 and 8 so, I’ve started out pretty simply with defining “Advocate” and beginning the dialogue on how we can stand up for what is best for someone or what is best for ourselves.  We’ve been having great conversations lately about their gifts and what they excel in.  It’s inspiring to watch them light up as I tell them what attribute I see them excelling in; we discuss how they can use that for their benefit or the benefit of others and how it might help in an area where they are not as strong. 

Lately, Cainan and I have been talking about how to explain his differences and disability to others.  Next school year, he will be attending a regular class in our neighborhood school—something that’s new for him.  And while I have every confidence he can be successful in this setting, I know things are going to come up as kids wonder why he is considerably different from them in some areas.  So, I’ve been helping him identify areas he thinks he’s not like “most people”.  We talk about why that’s not bad, just different and we’re talking about how we can explain that to anyone who wants to know about those differences.  We’ve also talked a lot about the ways he’s just like every other eight year old and how he can emphasize the things he has in common with his peers.

As much as I would love to step in and explain for Cainan any time someone asks him an inappropriate question, or implies there’s something wrong with him or treats him as an inferior, I know that I can’t.  I can’t be there all the time and even if I could, it would do him a great disservice to try and fight all his battles for him, leaving him defenseless without me.  Cainan is learning how to stand up for himself.  Because we are focusing on the positive, because we have explained his differences as just that—differences and not inability, because we are working on how to educate others appropriately, Cainan is going to be able to fight his own battles.  I’ve already seen it happening and I’ve wanted to shout with joy!

And I know, as Cainan becomes a more confident person and self-advocate, he will continue to grow into a compassionate person and advocate for others.  In fact, he was just telling me on Friday about a friend being teased in the bathroom by another classmate.  Cainan told me that he stood up to the other classmate and told him to leave his friend alone.  And here I have been worrying about Cainan being bullied but he’s already standing up for others being bullied.  What’s more, he did it appropriately, telling the classmate he was being mean and knew better, to stop teasing and leave the other boy alone.  That apparently took care of the situation but he told me if it hadn’t stopped he would have gotten a teacher.

 

There are more examples…Cainan expressing his direct wishes to be with kids his own age in a regular class at the same school as his brother during his IEP and then again, at his Placement meeting; watching him tell another child who was trying to boss him around that he knew what he was doing and had the teachers permission to do it; observing him explain to another friend that he has Prader-Willi Syndrome, which means his stomach tricks him and he has to be careful about what food he eats.  He’s getting it and I couldn’t be more excited to see it happening, to be a part of the process and to know that I’m helping equip him with the advocacy tools that will carry him through the rest of his life. 

Keeping it Tidy and Teaching a Lesson

Summer is coming and I've been trying my best to get organized for the next few months of busy boys loose in the house all day.  I've been making progress and plans to help keep them occupied.  I've also been working on getting our house in order, purging unneeded items and preparing for a garage sale.  Along the way, I've been scouring Pinterest and Google for ideas on how to accomplish all of the above.

Yesterday, I found a great picture on Pinterest
of a little sign indicating toys that are left where they should not be will be collected by mom and not returned until they are earned back by a chore.  I LOVE this idea!  I'm so tired of repeatedly telling the boys to pick up their stuff, getting them into bed after a long day only to realize the living room is covered in a zillion toys, or tripping over Legos and Hotwheels in the early morning hours.  

However, I couldn't find a link to where this lovely idea was posted.  I even searched Google with the first few lines of the poem, only to be directed back to the Pinterest post.  No worries! I took matters into my own hands and created my own sign, list of chores and a box to collect all of the toys.  Last night at dinner we discussed the creation of this box and brainstormed chores that would be appropriate for both the boys.  As with anything new, it was an exciting novelty and the boys were full of ideas and even picked up all their toys last night before going to bed.

Today, I took the list of chores and created the box.  I was feeling especially crafty so I went all out, printing the chores on cute scrapbook paper and gluing them to large craft sticks.  This is not something I would usually do.  It would be just as easy to write on the craft stick with marker, or just print out slips of paper, like the original pictures shows, and put them in an envelope.  I also covered an empty can in coordinating scrap paper (I know, I was really in the mood!) and glued it, along with the poem, to the font of a box.  I've already collected my first victim, which about brought me to my knees this morning while walking in the dark living room.  

For now, the boys are excited and are even hinting they may purposely leave a toy out tonight so they have to earn it back in the morning.  I know that's not going to last very long.  Right now, my plan is to collect any toys that are left in common areas after bedtime.  If that's successful, and we can finish organizing and cleaning their playroom, I will proceed to do the same for any toys not put away in there after bed time.  I like that I'm teaching them to put things back where they belong and that they're learning how to be even more helpful around the house.  I have to emphasize, the chores in the can are in addition to a list of regular chores they complete each week to earn part of their allowance (more on that another day) so I had to be creative with what else they could reasonable accomplish to earn a toy back.

Here's my step by step instructions for how I made the toy box and I've included a GIF of the sign I re-created off the Pinterest picture.  If you try this out, let me know how it works for you.

 Feel to right click on this image, choose "Save Image As" and use it in your own project if you like.

I typed up my list of chores in Word using the "Cooper Black" font at size 22 and double spaced between lines.  It worked out well but you could probably use whatever font you like--just print it on regular paper first and hold your sticks up to it to make sure everything fits correctly. After I printed out the chore list, I cut them into strips and started gluing them to large craft sticks. 

 I used watered down white school glue (like Elmer's) and a paintbrush to apply the strips of paper.  It will dry clear, kind of like Modge Podge without the expense.

Once they were applied, I flipped them over and trimmed the excess paper with scissors.

I wrapped an empty can in coordinating scrapbook paper.  Then I wrapped a cardboard box in brown paper, glued the sign on the front and attached the can with more white glue and a paperclip to hold it in place.

Once my craft sticks were dry, I stuck them in the can.

I've already collected my first toy after tripping over it on the floor this morning.

A Few Summer Camp Options

As I mentioned in last week’s post, I found a few summer camp options for kids and families that experience disabilities.  I should clarify—there are actually a lot of camp options if you have the money to spend (most of the ones I’ve found are between $750 – $1500 for a week!).  We don’t have money to splurge on camp but we love camping and some of my favorite memories as a child are going to summer camps.  I would love for my children to have the same experiences—without forgoing a mortgage payment to make it happen!

The camp options that I found are…FREE!  That’s right! FREE!  That’s why I’m so excited to tell you about them.  

Let me start with CAMP ATTITUDE:

Located in Foster, Oregon (I know, I had to Google Map it too—click here), this camp accommodates a whole family who has a member with a disability.  The person with a disability and their immediate family can stay the week for free—but wait! Want to make it a whole family affair?  Invite Grandma or aunts and uncles—each additional member of the family is just $100 for the week. 

Camp Attitude is a fully wheelchair accessible camp ground. It is located on 41 acres of forested land. This beautiful property borders the South Santiam River, and can accommodate up to 250 individuals for special day events, as well as 120 campers per night, in their authentic log cabins. They have 6 log cabins that sleep 20 campers each. They have 10 RV spots with full hookups. People can enjoy fishing, hiking, a local lake 4 miles from camp and other outdoor activities. They have over two miles of paved trails, and a very large covered activity center with a full kitchen.

 

This summer, Camp Attitude is offering 8 one week sessions for families to participate in.  At this time, all of the sessions are full.  However, still apply because they will put you on a wait list.  Even if you don’t get the opportunity to attend this summer, your name moves to the top of the reservation list for next summer.  

Check out further details on their website: www.campattitude.com

 

The second opportunity is for those of you who want to have the full summer camp experience for your child who experiences a disability.  I’m really excited and really terrified about this one (yep, Cainan’s going this summer! EEK!).

CAMP KOREY:

Camp Korey serves children with serious and life-altering medical conditions at no cost.  Located on the Carnation Ranch in Carnation, Washington (yep, had to Google that one, too—click here) this amazing camp offers one week long camps specifically designed for children with chronic or life-threatening illnesses.  Campers can safely enjoy traditional camp activities, with the addition of full medical support, adaptive methods, and the practice of “challenge by choice.” Camp Korey campers can swim, boat, fish, enjoy arts and crafts, try horseback riding, climb an indoor climbing wall or a new adaptive ropes course, and so much more.  

A child in a wheelchair on a tree bridge gets ready to zip line!!

Campers take part in fun camp-wide evening activities, including campfires complete with marshmallows and songs, a dance party, stage night, movies, and more.  Camp Korey is all about FUN, and time spent there is filled with laughter, making friends, and discovering new talents.  Children whose lives have been a series of medical procedures and hospital stays are transformed into “just kids.”  Campers spend time with caring counselors, and with other kids coping with the same illnesses or conditions.  They quickly realize that at camp they are not alone, and learn to feel special rather than different.
Camp Korey believes:

• Children First – Children are children first; their abilities and medical conditions do not define them.  All of the activities at camp, from meal time and boating, to ropes courses and cabin chats, are designed to be child-centered.
• Therapeutic Play – Everything at camp incorporates intentional programming and is based on the principles of therapeutic recreation.  Camp activities build confidence, independence and optimism.
• Challenge By Choice – Each individual chooses to what extent they participate in each activity depending on their appropriate level of challenge.  Through challenge by choice, children have the opportunity to try new things in an environment that is positive and exciting.
• Barrier Free – Camp and camp activities are universally accessible making it possible for children to participate in any activity they choose.  In addition, children of all backgrounds, circumstances and with a wide variety of medical conditions are welcome, always free of charge.

I don’t know about you, but when I read the above description, I started crying and called them immediately.  

The camp caters to children ages 7-16.  They have an extensive application that includes your child’s medical history and this is reviewed by the staff doctor and nurses before your child is accepted into the camp.  They do this to make sure they have the appropriate accommodations in place.  The counselor to camper ratio is 1:2 unless your child needs 1:1.  

Camp Korey is offering seven one week camps this summer that are disability specific.  But don’t be daunted if you don’t see your child’s disability included—they are willing to accommodate all different disabilities and will work with you to find the best week for your child to attend depending on their needs.

One more thing—take a deep breath—you can’t stay with your child… 

This is a traditional summer camp where kids go to be independent campers.  You drop your child off on Monday and pick them up on Friday.  You can’t volunteer to be a counselor the week your child attends (I already asked that question) and you can’t pay to stay on the camp grounds during that week (asked that, too).  They are wonderful in reassuring you about any concerns you might have and making any accommodations your child might need.  Since we are traveling out of state to attend this camp, I will be staying the week nearby in Seattle (it’s about 45 minutes away).   

The thought of having my baby away overnight at a camp is terrifying and I wonder how my mom let me do it every summer—add the fact that this is my fragile, needy child that I’ve spent 8 years protecting from unnecessary risk and this REALLY goes against the grain for me. But this is a normal part of growing up and he desperately wants to go.  So, I’m making it happen and I’m grateful that a place like this, not only exists, but is affordable (FREE!!).

One last word about Camp Korey—they are sponsored by many Northwest and National businesses, one of them being the Paul Newman Foundation.  Just in the last few months, the camp was officially designated one of the Paul Newman Foundation’s “Serious Fun Camps”, which lends it even more credibility and support.  

Check out their website for information and to apply online for the camp.  Call them and speak with the camper recruiter, personally.  They are passionate about what they do and your child who may experience a significant disability could have one of the most “normal” kid experiences you could hope for.

I hope these two camp ideas were inspiring and helpful.  We’ve applied to both and once Cainan gets back from Camp Korey, I can’ wait to tell everyone about it.  

Have a great summer!!

OCPA Magic of Theater Spring Break Camp - Cainan's Experience

In typing my blog entry yesterday, I mentioned what a great experience Cainan had at the Oregon Conservatory of Performing Arts Spring Break Camp.  I realized that I have never told the full story of that experience.  Shame on me!  It needs to be shared.

If you follow the blog, you know we’ve been working on Cainan’s IEP and we are advocating for him to be enrolled in a general education class next school year.  As part of that process I brought up all of Cainan’s success in Sunday school, the Awana program and all the Vacation Bible School’s he attended last summer.  These successes were all dismissed because they were church related.  I think the consensus was that people at church have to be nice and welcoming.  Even though there’s a lot I could say about that, I decided at that point, I would bring back more data next meeting showing Cainan could be successful in a non-religious setting.  I know the whole scenario is ridiculous but I didn’t want them to have any excuses as to why he couldn’t be successful with peers who don’t have a disability.

It was more challenging than I expected to find something for Cainan to enroll in.  His interests are limited—no sports, arts & crafts or food related activities, all of which there are a plethora of classes available for.  Cainan’s real interests lie in drama, reading and being around people.  I knew Spring Break was coming up and I was hopeful I could find something for him during that time.  As it turned out, the OCPA had a Spring Break Magic of Theater Camp available.  It was actually the only option available for drama or performing in our area.  I took this as a sign…

Once again, I have PIP to thank for this opportunity for Cainan.  I’m not sure I would have even attempted a regular

class like this for Cainan.  I would have been lamenting why there are no drama classes for people with disabilities.  But one of the first things that happens at the first weekend of Partners in Policymaking, is our minds are all collectively blown by the wisdom and information provided by Kathy Snow.  Now, Kathy and I don’t see exactly eye-to-eye on everything, but she is brilliant in her view of disability and how people who have disabilities are people first, just like any of us.  (You really should check out her site: www.disabilityisnatural.com for lots of great FREE information). 

 Following Kathy’s advice, I registered Cainan for the class and did not mention his disability.  It isn’t pertinent to his participation in the class.  I attempted to reach the instructor prior to the class beginning so I could talk to her about how the class was going to be run and what supports may be helpful to Cainan.  I was only able to speak to the organizer who gave me a run down of how the classes were run each day, how many kids were registered and what the experience would be like.  I was grateful for the information and it allowed me to start brainstorming what I could do to help Cainan be successful.

The morning of the first class I arrived early with Cainan so I could speak to the instructor.  Oh, did I mention that the class was Monday through Friday from 9:00 AM to 4:00 PM and that they would be participating in a play from audition to performance within that week while also learning about acting, make-up and set design?  Yeah, this was going to be a pretty intensive class and I was a bit apprehensive.  Anyway…

I began by letting the instructor know that I provided Cainan’s lunch and I would also provide his snack because he requires a special diet.  They immediately took me to their snack stockpile and showed me everything they planned to feed the kids.  It turned out most of the stuff was food Cainan could eat so we discussed quantity and variety.  I was pleasantly surprised.

Next, I mentioned that Cainan would probably do best if he could be paired up with a buddy who could just help him out in following directions and making sure he understood the tasks they were working on.  The instructor said that was her job and she would make sure he was doing well with the class.  I never mentioned Cainan’s disability, specifically, and they never asked.  Following Kathy’s advice, I focused on the positives, not the negatives.  I never said Cainan can’t…Cainan isn’t good at…Cainan has trouble with…  I just simply explained what he would need to be successful.  This whole conversation took all of about two minutes and I was a bit perplexed about not having the lengthy conversation and explanations I had envisioned in my head.

Since we had about 20 minutes to wait before the class actually began, we had a seat and waited while more kids and their parents filed in.  I suggested to Cainan that he introduce himself to the boy in front of us that looked about his age.  Cainan hopped up, went up to the boy, introduced himself, shook his hand and asked the boy’s name.  Then he said, “Nice to meet you.  Will you be my friend?”  I was very proud of him.  But then he proceeded to do the same with every kid that came into the class.  Before the camp even started, Cainan had personally introduced himself to every kid, asked their name and asked if they would be his friend.  It’s a good thing our hearts don’t burst with pride or joy even when they feel like they’re going to.

After a brief introduction by the instructor and director of the play, the parents were told they could stay for a few minutes if they wished while the class got started.  I decided to stay so I could see what this experience was going to be like and how Cainan would do with it.  There were a few of us who stuck around.  Cainan asked when I was leaving. 

The kids circled up and they started doing warm-up exercises, ad-libbing exercises, voice and speech exercises.  The director was full of energy but spoke so quickly, I could barely understand her.  I could see Cainan was having difficulty figuring out what was going on.  I watched to see what would happen (I’m actually pretty good at observing without interfering even though the mother in me always wants to step in and fix the problem).  I watched as Cainan struggled to participate appropriately.  I watched when it became obvious he wasn’t understanding the particular activity they were doing and as the instructor realized it and adjusted accordingly.  I watched for an hour and half, until it was snack time and I had a moment to grab the instructor and speak to her again.

Cainan came over and asked me when I was going to leave.  All the other parents were gone.  I told him probably soon.  I asked the instructor if she had any questions for me or if she wanted me to stay and help.  She said no.  I rephrased my offer to make sure she knew I could help out with Cainan.  She said no, again.  I confirmed that she had my phone number and could reach me if there were ANY questions or concerns.  Then I took a deep breathe and waved to Cainan.  He asked if I was definitely leaving now.  I took the hint and walked out the door.

That Monday was one of the longest days I’ve had in a while.  I kept checking my phone to see if I’d missed a call or a message.  I convinced myself not to drive down there and check on the progress.  I went to pick him up just 15 minutes early so I could watch the end of the day activities.  Wow, they worked with the kids up to the very last minute. 

Cainan was overjoyed after that first day.  I knew he had to be exhausted to have been that active and that focused for so many hours but he denied it.  He talked my ear off about all they had done.  He told me about the auditions and that he had gotten the part of the Frog Consultant.  He had the play with him with his lines highlighted and he was excited to start memorizing them at home (did I mention that in addition to the 40 hours of class time, they needed to work on their parts and costumes at home?).  He did finally decide he should take a short rest before dinner and passed out for about 45 minutes before I had to wake him up.  He also went back to bed, right after dinner and slept through until the next morning.  I figured this would probably be a regular routine for the rest of the week and it was.

I was better the next days, dropping Cainan off like the other parents and arriving close to 4:00 to pick him up.  I asked the instructor each day how he was doing and if she needed anything.  I always got the same answer—that he was doing fine and they didn’t need any help from me.  Cainan remained excited about the play.  We worked on his lines every night.  Memory is not a problem for him but voice projection and articulation are big issues.  He practiced and practiced.

I was touched when I saw other kids in the class naturally including Cainan instead of excluding him.  One morning when I brought him in, the kids were working on a set piece, a flag for the Wicked Stepmother Guild.  Cainan asked what they were doing and they told him.  One girl scooted over and asked if he wanted to help.  She gave him a marker and showed him where to color.  He started right in, just like all the other kids were doing.  There was nothing “special” about him or how he was being treated.  I wanted to weep, but I think the instructor already considered me a bit odd.  I waved to him and left instead.

Friday afternoon was the play.  Cainan’s supporters made up about a third of the audience (mom, dad, both sets of grandparents and friends of our family).  The play was FANTASTIC.  I couldn’t believe all these kids came together and accomplished it so well in just one week.  Cainan was amazing.  His part was funny and everyone laughed.  Afterward, several people came up to him and told him he was their favorite.  I may have been a bit overcome…

Not once during that week did the words disability, Prader-Willi Syndrome, limitations or exclusion come up.  Cainan was fully included and actively a part of that group of kids and that camp experience.  He loved it.  We loved it.  And he would never have done it if my way of thinking about disability had not been radically changed.  I would never have entertained the idea of putting him in a regular extra-curricular class with same age peers like this.  Never.  It just wouldn’t have seemed doable or appropriate.  I’m soooooo glad I was wrong.

OCPA is offering two more camps this summer—a bit less intensive since they go for three weeks and they’re half days.  In fact, they are putting on Cainan’s favorite story: Disney’s Sleeping Beauty.  There is no question I would sign him up for this but we’re still trying to figure out cost and summer schedules for our family.  I’m happy to say those are the only issues we’re considering.  I’m not even thinking about whether or not Cainan can do it because of his disability.   

I regret allowing my thinking about disability to make me feel that Cainan was disabled.  He is not.  He is VERY able.  But like all of us, he faces challenges.  His challenges are different from mine; they’re different from a lot of people’s, but that doesn’t make him any less able.  I’m so glad we had this experience.  I’m so thankful for PIP and all that I’m learning there.  And I’m thankful for Kathy Snow, who helped me realize disability is natural.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                             

Summer Activities...How Are You Keeping Your Kids Occupied?

With all of this fantastic weather we’ve been having here in the Rogue Valley this week, it got me thinking about summer plans.  I hate to break it to you if you haven’t already come to this realization but school is over in six weeks.  SIX WEEKS!  How are you going to keep your kids occupied?

As part of a parent group I belong to, I compiled a list of summer ideas for kids of all different abilities the other day.  Most of these are local to Southern Oregon but some are not and if you’re not a Rogue Valley resident, maybe it will give some good ideas to look for these activities in your area:

VACATION BIBLE SCHOOL: Offered by various churches in the community, these are usually free or very low cost.  My sons participated in four different ones last summer which usually ran from about 9:00 AM to 12:00PM four or five days of the week.  I found speaking to the coordinator about any supports your child may need is the best way to determine if the VBS is a good match for your kid.  If you’ve never enrolled your child who experiences disability in a non-disability specific program, you may be pleasantly surprised at how accommodating regular programs can be.  Check with churches in the area to get more information (it may be a little early yet to get definitive information—June is usually when I start seeing information on VBS).

CITY PARKS AND RECREATION: The City of Medford offers a ton of programs from sports, to crafts, to fitness classes, art classes, tours…etc.  These programs vary in cost but are less for residents of the city.  They are usually pretty economical and cover a wide variety of interests.  Again, these are not specifically tailored to persons who experience disability but the Parks and Rec program is very accommodating and welcoming to all interested people.  Give them a call and ask to speak to the person in charge of the class or program you’re interested in.  You can discuss what kind of supports would be best for your child.  541-774-2400  http://www.ci.medford.or.us/SectionIndex.asp?SectionID=6

EASTER SEALS CAMP: Easter Seals Of Southern Oregon offers summer day camp programs for children ages 5-21.  The camps last one week and are divided by age group (ages 5-12 have three weeks available and ages 13-21 have three weeks available).  This camp is extremely accommodating to disabilities of all types.  Their volunteers and staff are FANTASTIC in working with children and the campers get to participate in crafts, swimming, playground activities and other camp fun.  The cost for this camp is $125 per session (1 week) but if cost is an issue they have some scholarships available.  Also, if your child is a client of DDS (Developmental Disability Services) you can talk to your case worker about possibly using family support funds for this activity.

YMCA: YMCA also offers some day camps and summer activities.  Their programs also vary in cost and there’s discounts if you’re already a member. 541-772-6295

ABK: America’s Best Kids offers day camps and summer classes in karate, gymnastics, cheer, swimming and more.  Prices vary by program.  541-245-0432

THINK TANK KIDS: Think Tank offers fun Nerf Nights, Lego Workshops, Robot Building Workshops and more.  The staff at Think Tank Kids have experience with children who have disabilities and they are open to accommodating all children.  Contact them for more information. www.thinktankkidsonline.com; mhennes@charter.net

OREGON CONSERVATORY OF PERFORMING ARTS: This summer the OCPA has two Magic of Theatre camps for children ages 7-12.  The children will be learning the entire process of putting on a play with a final culmination of performing in front of a live audience. This summer’s plays are the Trial of the Big Bad Wolf (a musical), June 18^th – July 6^th (M-F 8:30-12:30); and Disney’s Sleeping Beauty Kids (a musical), July 30^th – Aug 17^th (M-F 8:30-12:30).  The cost for either of these programs is $375 but they also offer some scholarships.  Contact them for details regarding necessary supports for your child and see what they have to say.  Cainan participated in their Spring Break Intensive Camp and his disability was never an issue—the play was fantastic and great experience for all the kids involved!  541-776-9118

I’m also excited to share about summer camps I’ve located but this entry is already long enough.  I will just have to write another one to share all the great information I’ve found on those.  I’m sure there are more great summer programs and ideas out there so if you hear of any more than what I’ve listed, definitely let me know in the comments.  Good luck!