Tuesday, April 24, 2012
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.
Monday, April 23, 2012
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; firstname.lastname@example.org
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 18th – July 6th (M-F 8:30-12:30); and Disney’s Sleeping Beauty Kids (a musical), July 30th – Aug 17th (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!
Monday, April 16, 2012
It's been a while since I posted a recipe for a Wednesday night dinner. I realized I'd been remiss when someone asked for the recipe for this week's dinner and suggested I post them online. I mentioned that I do, but realized it's been way too long. So, here's this week's Awana dinner:
Taco soup is an easy, crock pot recipe that hit's the spot on a cold winter's day. It's also great for football parties, tailgating, etc. We usually serve it with grated cheese, sour cream and onions for garnish and corn chips on the side. It's also great with cornbread, which is what I made this last week to go with it. What's also nice about this recipe is that it's totally customizable and can be made really low calorie by using lean ground turkey, instead of beef and using a bit less of it (1 lb, instead of 2) and watching the calorie content on the beans you use (yes, beans have different calories--sometimes widely varying!). Made following these directions, this recipe is approximately 250 calories per serving (that’s if you divide it into 12 LARGE servings and use 80/20 beef…less if you have a more moderate serving or use leaner beef)*.
2 pounds ground beef
1 (1.25 ounce) package taco seasoning mix
1 1/2 cups water
1 (15 ounce) can mild chili beans
1 (15.25 ounce) can whole kernel corn
1 (15 ounce) can kidney beans
1 (14.5 ounce) can stewed tomatoes
1 (10 ounce) can diced tomatoes with green chili peppers
1 (4 ounce) can chopped green chilies
1 (1 ounce) package ranch salad dressing mix
In a Dutch oven or large kettle, cook beef over medium heat until no longer pink; drain. Add taco seasoning and mix well. Stir in remaining ingredients. Simmer, uncovered, for 15 minutes or until heated through, stirring occasionally. Or, after browning & draining the meat, combine all ingredients into a crockpot, cooking on low or high depending on the time you require before eating it.
You may garnish with cheese, sour cream, onions, etc. Serve with corn chips or corn bread!
*All calorie calculations are approximate. I calculate calories by adding the total calories for each ingredient together and dividing by the number of servings the recipe makes.