Fall 2014 Family Links PRODUCED BY AND FOR PARENTS OF CHILDREN WITH DISABILITIES Molly Loves By Cyndy Knight Inside this issue: Molly Loves 1 Editorial 2 Featured Events 3 Summer Picnic & 4-H Horse Camp 4 Camp Primetime 5 Fall Calendar 6-7 Monthly Emotional Support 8 Confessions of a Special Needs Parent 9 A Letter to My Teacher 10 Reading Study 11 Molly Loves (continued) 11 A New Home for Parent to Parent 12 October is both Disability Awareness Month, and Down Syndrome Awareness Month. Awareness is a life or death reality for children with Down syndrome. Molly was born January 29, 2003. She’s one of the lucky 15% of babies with Down syndrome to be allowed a live birth according to Global Down Syndrome Foundation statistics. I wish I could go back to the mom of eleven years ago and paint the beautiful picture that is Molly’s life and reject the dismal picture painted by our society. In the hospital after Molly’s birth I was having a hard time with the “what if’s.” One of the pediatric nurses in Spokane said firmly, ”You don’t know what the future holds for ANY child. Don’t put a box around Molly. Let her show you what she can do.” Molly, like most kids with Ds had an accompanying health problem, in Molly’s case, Herschprung’s disease (corrected with colon surgery when Molly was three weeks old). Molly’s first few weeks were a medical rollercoaster ride; it was a ride that redirected my role as mother…to advocate. Molly is now 11. She has been a source of entertainment that only a Molly boogie, or off-tune karaoke of “Let It Go” can bring. She has an adoring family. Her two sisters keep me in check especially if they feel I am spoiling Molly by telling me, “Molly can pick up her stuff too!” Molly has an older sister Madelyn (14) and a younger sister Chloe (9) who are the unsung heroes in Molly’s life. One day after school last year, Chloe, in tears, said, “Molly doesn’t hug me long enough at recess.” Molly will be in fifth grade this year with Mr. Lux (aka Mr. Yucks, one of her favorite people). His daughter Whitney was P2P Volunteer of the Year in 2013. As parents, Lawson and I worry about inclusion, puberty, and the tricky balance of pushing too hard or not enough. Molly is reading at a Kindergarten/First Grade level. She loves her iPad and our dog Gus. She loves chickens and elephants. She loves her friends and being the mother hen to younger cousins. Can you catch the theme? Molly loves. I am only aware of three things Molly does not love; hurrying, taking showers, and spiders. This summer our family visited Yellowstone National Park in Wyoming. (Did you know that persons with disabilities can get an Access Pass that allows free entrance for the family and 50% off on campgrounds?) The whole car erupts in cheers for Molly every time we enter a National Park for free. Molly loves the wildlife, hiking, and camping. Molly has completed three Junior Ranger Programs, at Glacier, Crater Lake, and Yellowstone. She has the badges to prove it. Continued on page 11... EDITORIAL Dear P2P Friends & Families, Fall is my favorite season. Gorgeous, colorful leaves blanket the trees. The temperature plummets and I pull out my cozy sweaters. Soups and hearty casseroles once again grace our dinner table. Fall is always a welcome change of pace for me. Here at Parent to Parent we hope you enjoy fall as much as I do and can join us for some of the great events we have planned. We will continue to have 4 monthly support meetings: Jumpin Jellybeanz for the birth-12 families, Mamas Especiales for Spanish speaking moms, Parent Connections (formerly known as Senior P2P Dinner) for parents of teens or adults, and Dinner & Drinks for parents in all stages of life. For extra fun in September, you can attend Movie Night and see the Lego Movie or enroll your child in the new football/cheer camp offered by Coach Spiess! In October, we have a Fall Workshop with our favorite presenter, Sherry Mashburn. She will teach you all about IEPs and inspire you to take action for your child. If you don’t have a school-age child, you are still welcome to come for lunch and the afternoon information sessions. In November we have the opportunity to communicate our respite and financial needs with our local government representatives at the annual Legislative Tea. PLEASE plan on attending this event! More voices equal more action when it comes to government and our families need more support! As fall arrives in coming months, I hope you enjoy the beauty of the leaves, the coolness of the weather and the warm and friendly community we call Parent to Parent. Happy fall, Angela Beam Do you have something to share with our P2P community? Let us know and we can add it to an upcoming newsletter! Parent to Parent Support Programs provide emotional support and information to families of children with special needs or disabilities. We utilize trained veteran parents, “Helping Parents”, who provide one-on-one support to new or referred parents who have a child with similar needs. We support families at all stages of life, and provide recreation, community events, and information specifically for families of children with special needs or disabilities. Page 3 PLEASE JOIN US FOR THE ANNUAL Walla Walla Parent to Parent FALL WORKSHOP October 25, 2014 10am-3pm 1629 Evergreen St., Walla Walla IEP Presentation by Sherry Mashburn Sherry is a parent advocate from PAVE (Partnerships for Action, Voices for Empowerment). She is an expert on all things special education. She will teach you about the rights you and your child have in the IEP process and inspire you to advocate for your child. Luncheon and Mini Spa Relax and visit while you enjoy a delicious meal. During our break you will have an opportunity to get a mini massage, hand treatment and foot soak. At the end of the hour we will learn 3 great relaxation techniques to de-stress at home. Information Fair Buddy Program, Life Opportunities Trust, Guardianship, Potty Training, Puberty, Employment, Housing and more! We will have information from a number of local agencies as well as parent experts to share their knowledge and experience. $15 Workshop fee includes morning coffee station, lunch and all materials Kindly rsvp to Angela 509-876-1583 by Thursday, 10/23/14 October 31, 2014 5:30-7:30 @ the Field House Come dressed in your costume! Games and goodies for the whole family! September 20, 2014 6:00-8:00 @ the Field House Come enjoy a movie and popcorn with P2P! Bring a comfy chair, beanbag, pillow or blanket. Page 4 Family Links Annual P2P Picnic 2014 We typically have our picnic at Fort Walla Walla, but this year we decided to go the Field House to conquer the heat with air conditioning. It ended up being a good decision because August 13 had thunderstorms, wind and rain! We were glad to have a place to stay dry while we enjoyed hotdogs and many great potluck dishes together. When the clouds parted with sunshine we enjoyed a beautiful rainbow and the children ran outside to play! Thank you to all of the brave families who came. We had delicious food...and a fantastic time! 4-H Horse Camp Fall 2014 Since 1986, thousands of families have enjoyed the opportunity to escape their daily stresses, taking pleasure in the beauty of the outdoors, and participating in activities with other families sharing similar challenges. Gratefully, our P2P group was able to go in June of this summer. As you can see, Camp Primetime was a fantastic opportunity with boating, hiking, cabins and volunteers who prepare all of the meals for the weekend. If Camp Primetime is available to us again next summer, we will open enrollment in April or May. Priority will be given to families who have not yet attended. THANK YOU CAMP PRIMETIME! Page 5 Page 6 September 9 JUMPIN JELLYBEANZ 3:00-5:00 12 October 10 3:00-5:00 RSVP required FREE PARENTS NIGHT OUT 509-876-1583 5:45-8:15 MAMAS ESPECIALES MAMAS ESPECIALES 10 12 LEGISLATIVE TEA 6:00-7:30 1629 Evergreen St., WW 14 PARENTS NIGHT OUT 6:00-8:00 1629 Evergreen St., WW 10 DINNER & DRINKS 6:00-8:00 5:45-8:15 6:00-8:00 Journey’s Restaurant YMCA, WW 1629 Evergreen St., WW 119 E. Alder, WW RSVP required JUMPIN JELLYBEANZ 3:00-5:00 20 E. Poplar St., WW FREE 509-876-1583 DINNER & DRINKS 6:00-8:00 119 E. Alder, WW 14 MOVIE NIGHT 6:00-8:00 25 1629 Evergreen St., WW Lego Movie and popcorn SENIOR DINNER 6:00-8:00 29 Smith’s Family Restaurant FOOTBALL & CHEER CAMP FALL WORKSHOP 10:00-3:00 1629 Evergreen St., WW RSVP required 509-876-1583 SENIOR DINNER 6:00-8:00 Smith’s Family Restaurant 1425 W. Pine, WW 27 JUMPIN JELLYBEANZ FREE Journey’s Restaurant 24 11 20 E. Poplar St., WW 509-876-1583 20 5:45-8:15 YMCA, WW RSVP required 12 PARENTS NIGHT OUT 20 E. Poplar St., WW YMCA, WW 12 November 31 Details to be announced... 5:30-7:30 1629 Evergreen St., WW 6:00-8:00 1629 Evergreen St., WW DINNER & DRINKS 14 6:00-8:00 Journey’s Restaurant 119 E. Alder, WW SENIOR DINNER 19 6:00-8:00 Smith’s Family Restaurant 1425 W. Pine, WW P2P HALLOWEEN PARTY MAMAS ESPECIALES 14 1425 W. Pine, WW 27 HAPPY THANKSGIVING! Come in costume! Blue Mt. Therapeutic Riding In Step Horse Riding for Individuals with Disabilities Dance Class for Individuals with Disabilities 6 week fall session has begun 5:30-6:15 pm (T, Th) Beginning Ballet (age 7-17) Choice of Tuesday or Wednesday evening lessons 6:30-7:15 pm (T, Th) Beginning Ballet (age 18+) Ron & Mary Murphy, instructors Rhonda Copeland, instructor May register at any time. May register at any time. Call to register (509) 540-6244 Call to register (509) 525-2920 Page 7 September 2014 SUN MON TUE WED THU FRI SAT 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 WED THU FRI SAT 1 2 3 4 October 2014 SUN MON TUE 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 WED THU FRI November 2014 SUN MON TUE SAT 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 Page 8 Monthly Emotional Support Opportunities Now FREE! 20 E. Poplar Street, Walla Walla For families with children birth to 12 years old with disabilities. Every 2nd Tuesday of the month September 9, October 14 & November 11 Journey’s Chow House 119 W. Alder Street, Walla Walla from 3:00 to 5:00 PM All Ages & Stages Caregiver Meeting NOW FREE FOR P2P FAMILIES!!! Jumpin’ Jellybeanz has 6 indoor bouncy castles and a large foam-covered floor with cars and balls for the littlest children. Siblings welcome. Food and drinks available for purchase. Volunteer Hostess - April Eilertson Every 2nd Friday of the month September 12, October 10 & November 7 From 6:00 to 8:00 PM This is a casual chance to relax and gather with other parents and caregivers. Come have dinner or just a drink while we talk and support each other. Call volunteer hostess Angie Witt for more information 509-540-9880. Mamas Especiales Smith’s Family Restaurant 1425 W. Pine Street, Walla Walla No Host Dinner for Parents and Caregivers of teens and adults Last Wednesday of the Month September 24, October 29 & November 19 6:00—8:00 pm This monthly dinner meeting is a gathering of parents and caregivers in a casual atmosphere sharing concerns, success and information about each of our own situations in the hopes of learning and gathering support. Volunteer Hostess - Carla Nibler For all women who speak Spanish Every second Friday of the month September 12, October 10 & November 7 6:00-8:00 pm POTLUCK Diana Bergevin Field House 1629 Evergreen St., WW RSVP at 509-301-0679 Hostess - Ysabel Fuentes Page 9 Confessions of a Special Needs Parent: The Back to School Terrifies Me My youngest has Down syndrome and she thrives on routine. We had Kindergarten down! She was in a co-taught classroom with the regular kindergarten teacher and a special ed teacher. It was great! There was a bathroom attached to her classroom. She adored her teacher. Things change in first grade, and there is no co-taught classroom. I also had to make a choice between regular curriculum or special curriculum for kids with cognitive disabilities (as they call it). It stinks. My middle daughter has cerebral palsy and a number of other diagnoses. She had the same teacher the last two years and supports in place, but this mama’s heart feels heavy. And it is in situations like this that I recognize how different life can be from typical families. Although I have similar fears with my oldest (and typical child), it does not compare to the fears I have for my vulnerable kids. Not even close! “Excitement is muddled with fear as a new school-year approaches. I’m ready for some quiet around the house but I have two kids with special needs and the back to school terrifies me.” There is no bathroom attached to her new classroom. She will have a locker. She will have a new teacher. She will have new classmates. For my child who strives on routine and sameness, this is a lot of new and I don’t like it one bit. Nobody in her class knows her yet. This is terrifying! Worse, her speech makes it hard for her to communicate what happens in school. “How was your day?” Is sadly not a conversation I’ll have with my child, at least not to the extent I wish we could. What if someone is mean to her? What if someone picks on her and calls her names? What if they make fun of her? It is terrifying! she needed that consistency, yet this time around we don’t even know who her new teacher will be. Not a great feeling for a child with attachment issues, post traumatic stress, and clinical anxiety (yes, besides her depression and ADD). She will have a new class. New classmates. More kids that will ask her, “Why do you walk like that?” and, ” Why do you have those things on your legs?” She already hates the fact that she has cerebral palsy. I know we will take it one day at a time. I know teachers and therapists alike will care for my kids. I know my girls go to a great school and they have great I pray often that my girls find friends, that they feel loved and accepted, and that they navigate the new school year with grace and self-assurance. I’ll most likely be the mom crying that first day of school. And I really hope I don’t drive their teachers crazy when I ask them 100 questions on our openhouse day. “Who will be with Nichole during recess?” “Who is helping her when she has to go to the bathroom?” As much as I wish I could keep them home with me, I know this is good for them…and good for me. Ultimately, I want my children to become their own advocates. I want them to stand up for themselves, I want them to learn to use their voice. And these new challenges, such as a new school year, provide an opportunity for growth for all of us. For me, to let go. For them, to go on. Still, I’m terrified! By Ellen Stumbo www.ellenstumbo.com Page 10 A Letter To My Teacher - 15 Things About Me Hi, my name is _________________________________ and I am in your class this year. I want you to know a little about me. I’m nervous to be in your class because it’s new and I don’t know what to expect. I may need some time to adjust before I feel comfortable. Please don’t judge me on my first few weeks. As the time goes by, you will be amazed by the things I can do. As I become familiar with your classroom I will begin to shine. A great way to speed up this process is letting me know what to expect. Written or picture schedules for the day reduce my anxiety and confusion. A five minute warning before a change of activity can help me greatly too. You are my teacher and I look up to you. I want to succeed this year but I can’t do it without your help and most importantly, your belief in me that I can do it! 1. What is my general disposition? 2. What am I really, really good at? 3. What do I absolutely LOVE doing? 4. What do I absolutely HATE doing? 5. What are my strong areas? 6. What do I need extra help with? 7. Which skills would my parents really like me to work on this year? 8. How do you know when I’m getting frustrated? 9. What can you do to calm me down before the storm hits? 10. Too late! The storm hit! What can you do to help me? 11. What strategies work really well to get me to do something I don’t want to do? 12. What typically makes me laugh? 13. What consequences back-fire and don’t give the desired results? 14. Which consequences work best? The new school year can cause a lot of emotional stress for families. Parents hope for a teacher who recognizes the strengths and brings out the best in their child. The following letter can be a valuable resource to help the teacher to understand your child better. Take a moment to answer the following questions and schedule a meeting with your child’s teacher to share the information. Page 11 Molly Loves (continued from page 1) In Walla Walla we have found lasting friends through Parent to Parent, a community that shares and supports each other in the often turbulent seas of disabilities. Even without paid services, we have benefited greatly from the P2P Parent Workshops learning about PAVE, developing skills for future employment, WA Endowed Trust, and so much more. The last three summers Molly has enjoyed P2P Summer Camp (thank you Blue Mountain Community Foundation!!) and her time at Camp Meadowood Springs (Speech Camp) at Tollgate, OR (a forty-five minute drive from Walla Walla). She comes back after a week at camp with better articulation and stories than an entire year of speech therapy. P2P basketball coach Patrick McFetridge and Challenger Baseball coach Mike Spiess have shown me how investments of time can transform lives. We are so grateful for their volunteer service and kindness. Other early heroes in our world include Karen Gaffney, self-advocate and athlete with Down syndrome, who recently received an honorary doctorate at the University of Portland, Oregon. Speaking of heroes, we are very fortunate to live close to my parents who are a huge support to our family. I am passionate about bringing awareness to the abilities of our children. Molly has taught me to look outside the box, to stretch in ways that aren’t always comfortable. She has taught me that ignorance is to be feared more than lack of intelligence. Funny, when I stopped putting Molly in a box, endless possibilities opened for both of us. Shouldn’t it really be called developing abilities, not developmental disabilities! -Written by Cyndy Knight Study Finds Reading Possible Despite Low IQ By Michelle Diament at DisabilityScoop.com For students with intellectual disability, functional skills are often prioritized over academics, but a new study finds that children with low IQ are capable of learning to read. With persistence and specialized instruction, researchers found that kids with mild to moderate intellectual disability can read at a first-grade level or better. They say the results could have life-changing implications for thousands of students with low IQ. “If these children, and any other struggling readers, can learn to read, that means they can go grocery shopping with a shopping list, read the labels on boxes and cans and read basic instructions,” said Jill Allor of Southern Methodist University who led the study published in the Journal of Exceptional Children. “Even minimal reading skills can lead to a more independent life and improved job opportunities.” For the study, researchers followed a group of 141 kids with IQ scores ranging from 40 to 80, all of whom were able to speak. Of those studied, 76 students received 40 to 50 minutes of intensive reading instruction daily in small groups with no more than four students to each teacher. The remaining 65 students were provided standard lessons with varying levels of reading instruction. After four years, the students who received the specialized instruction performed significantly better on a variety of reading tests compared to those who participated in the traditional lessons, the study found. What’s more, researchers said that IQ did not predict a child’s ability to read. While students with higher IQ scores generally improved more quickly, there were cases where children with lower IQ scores outperformed their peers with higher scores. “This study demonstrates the potential of students with intellectual disability or low IQ to achieve meaningful literacy goals,” Allor said, adding that the findings prove “we should never give up on anyone.” Beginning October 1st, 2014 Parent to Parent is joining the To contact the P2P Coordinators: Angela Beam (509) 876-1583 Ysabel Fuentes (509) 301-0679 New Mailing Address: PO Box 113 College Place, WA 99324 Email addresses to be announced soon... PARENT TO PARENT Sponsoring Agency: Lillie Rice Center 2616 E. Isaacs Ave. Walla Walla , WA 99362 www.lilliericecenter.org (509) 525-5433 P2P Coordinator: Angela Beam [email protected] (509) 876-1583 Hispanic Outreach Coordinator: Ysabel Fuentes [email protected] (509) 301-0679 Walla Walla Parent to Parent is on Facebook! We post inspirational thoughts, disability awareness links and of course, our local WWP2P events. Join us today!
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