Village News Back To School 08

TH E V I LL AG E N EWS The IWK Paediatric Rehabilitation Service is changing the name of its' newsletters (formally Rehab News and CP News) to "The Village News". Given our philosophy of family centred care and our belief that it truly does " take a village to raise a child", the Village News seemed an appropriate name to capture all that is happening within Paediatric Rehabilitation Services. We hope you enjoy our new format, and that, like the IWK, it will "Inspire Wellness in Kids".

Volume 1, Issue 1

My Summer Vacation

Special points of interest:

By Anna Gillis

This year my family went on vacation to Ingonish, Cape Breton. I have been there before with my family, however, it was different this year. My family borrowed a groovy stroller/wheelchair called the Hippocampe from the IWK Recreation Therapy Department. I was able to go everywhere with my family this year; on hiking trails and on the beach – no problem! The Hippocampe can even go in the water; however, I preferred to keep a little distance from the ocean waves as they were really cold. I felt like sort of a celebrity on this vacation. People kept coming up to us to check out my wheels. It was nice to meet many different people and show them the Hippocampe.

I think many of them had once tried to push traditional strollers or wheelchairs in the sand without much success. The Hippocampe folds down into a carrying case and fit nicely into our van along with my wheelchair and our family’s luggage (believe me – my Mom doesn’t exactly pack light either!) Andrea and Noreen showed my Mom how to put it together and it only took a few minutes to assemble. The frame is light-weight and easy to lift. Apparently, you can even get a ski attachment for the front for winter use. Now that I am home from our family vacation, I am keeping busy. I am attending a day camp as well as the Adaptive Bike Program in August. I go to the SMILE program during the year at Acadia University and was so happy to start attending the YMCA program – Reach for the Stars, which is a lot closer to home.

August 25, 2008

Canada Learning Bond Children’s Fitness Tax Credit A Parents Guide to Disability Equipment Loan Program When to Return to Remedial Seating

Andrea, Noreen and Kim sure keep my Mom up to date on everything going on in and around the city. It has been a terrific resource and in turn, Mom has been keeping me very busy with all these new activities. Mom and I went to the Summer Recreation Fair put on by the Recreation Therapy Department and it was a great chance to learn about all these activities, the equipment lending program and much more. Have a great fall. Here’s to summer vacation….YEAH! Written for Anna Gillis, 9 years old, by her Mom (Jane) and Dad (Michael)

Inside this issue: War Amps

2

Facility Based Respite

3

Back to School

4

Resources

5

Sibling Supports

6

Programs

8

Psychology For You

10

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The WAR AMPS Is There To Help A young boy loses part of all four limbs due to septic shock. A little girl has a leg amputation due to a limb deficiency at birth. A teenage boy loses an arm in an electrocution accident.

has dealt with a similar amputation. The War Amps covers all associated costs.

In these cases, and hundreds more , The War Amps has been there to help through its Child Amputee (CHAMP) Program, providing funding for artificial limbs, counselling, regional Seminars and programs like Matching Mothers.

Also available are resource kits, educational materials on amputation and a toll-free number for enquiries.

Matching Mothers matches new Champs and their families with an experienced CHAMP family that

L’Arche is an international federation of faith-based communities creating homes and day programs with people who have developmental disabilities. L”Arche began in 1964 with Jean Vanier, the son of Canadian Governor General Georges P. Vanier, welcomed two men with disabilities into his home in France. L”Arche was formed as an nonprofit organization and since it’s

Adult amputees also benefit from The War Amps lifetime of experience, receiving funding for artificial limbs and information on all aspects of living with amputation.

The War Amps is funded solely through public support of its Key Tag and Address Label Service. For more information, please contact 1 800 465-2677 or visit www.waramps.ca.

beginning has had the mission to create homes for persons with disabilities. L’Arche Halifax has been meeting for some time. They have a monthly gathering at St. Agnes Catholic Church Hall. It is located at the corner of Mumford and Chebucto Roads in Halifax. L’Arche Halifax will begin building their first home in HRM this fall. For more information contact Cathy MacMillan at 902-402-1582 or [email protected].

Francis moved by Camp Tidnish Lt.-Gov. Mayann Francis sits with camper Isai Estey during a tour of Camp Tidnish. She toured the facility and met with campers and staff. “Many of us don’t realize the many wonderful things that are taking place here. Coming here has moved me a lot”. Francis was joined by officials from the Abilities Foundation of Nova Scotia and Amherst Rotarians on the tour. Compliments of: The Amherst Daily News

A Parents Guide to Disability

Many parents search for information about resources that might benefit their families and more specifically their children with disabilities. Joan Bernard was one of those parents. She searched and recorded many helpful resources and now offers it to others in her book Parent to Parent. If you want more information about Joan’s book please contact her at [email protected].

“Alone we can do so little, together we can do so much.” - Helen Keller

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Increase in Number of days of facility-based respite available to clients and their caregivers Nova Scotia Department of Health Continuing Care Programs

We are very pleased to announce that Brigadoon has exceeded the million dollar mark in its capital campaign (achieved within 2.5 months of starting the campaign in May). The campaign continues to pick up momentum and we remain on target to start construction in 2009. For more information check Www.brigadoonvillage.org David M. McKeage, Executive Director Brigadoon Children's Camp Society

Effective June 24, 2008 the number of days per year a client can use facility-based respite has been increased from 28 days to 60 days. Under this change, the maximum continuous length of stay is 30 days, and a client may not use more than 30 days of respite between July 1st and October 1st. These conditions will help ensure fair access to respite beds in high demand areas and during peak demand periods. The purpose of facility-based respite is to provide the caregivers

a planned and temporary break from their care-giving responsibilities. Respite beds are available in nursing homes across the province. Respite beds are also available in some residential care facilities in the province. The revised policy has been incorporated into the Long Term Care Policy Manual, which is available on the Dept. of Health’s website at www.gov.ns.ca/health/ccs/. An individual or caregiver can request access to a respite bed by calling toll-free (1-800-2257225) for an assessment.

Creating Respite Solutions Workshop On May 31, 2008 over 100 people gathered in Halifax to discuss a very important issue related to families who have children/adult children with disabilities. The issue is Respite. Respite is crucial for parents/guardians caring for loved ones with complex medical and/or intellectual disabilities. Respite is the time they take to care for themselves. It was very clear in the workshop that families sense they need support to maintain harmony in their family. Caregivers want respite options that are fun, social and may lead to friendships. This is a benefit for the child/adult child and for the caregivers. We heard from parents who described their respite solutions. They talked about formal respite (paid respite workers) and informal respite (unpaid solutions). We also held an Exhibition Hall with many community based resources that offer leisure and recreation

activities for persons with disabilities. Regional respite providers from all of the areas of Nova Scotia were also present.

Our first task is to stay connected with the participants of the workshop and to reach out to others with similar needs. We have developed an email mailing list to send information to families. If you would like to add your name to the list please email [email protected]

Our Partnership thanks the organizations that funded this workshop including the Nova Scotia Department of Health (Continuing We will write a report related to the Care), Nova Scotia Department of May 31st workshop to help us define Community Services (Services for positive respite solutions. We also are Persons with Disabilities), IWK involved with researching this Health Centre (Primary Health), important issue. Many families have Nova Scotia Advisory Council on responded by returning the research the Status of Women, and the Nova questionnaires. We would like to Scotia Association for Community encourage more people to participate in Living. This demonstrates their the research. For more willingness to “Respite is crucial for parents/ information please help create contact: Paula at solutions guardians caring for loved (902)470-7275. related to the ones with complex medical issue of resFinally the Partnership is and/or intellectual pite. The planning to do workshops disabilities.” Partnership in other areas of Nova recognizes Scotia. We are able to momentum is growing. We want to provide these thanks to funding by the remain active and help to develop IWK Community Grants. meaningful respite options.

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Thinking Outside The Lunch Box Children need fuel for growth, development and physical activity and they like to have choices and small tastes of numerous things. By including a variety of foods in your child’s lunch you’ll be sure they get the right fuel. This will help keep them healthy and productive in the school year ahead. If you want your child coming home saying “Thanks for the great lunch!” and you want ideas that are easy to prepare and costeffective then read on! Pick one food from each column below to ensure the meal includes foods from all four food groups. Lunch can be the conventional sandwich, milk, fruit, vegetables and snack item. But if your child likes to pick you maybe able to avoid the “brown bag blues” by providing a selection of foods that they can assemble themselves. Submitted by Nutritionist, Cindy Black, P.Dt. Vegetables asparagus beets bok choy broccoli Brussels sprouts cabbage carrots cauliflower celery cucumbers eggplant green beans green salad lettuce mushrooms peppers, sweet seaweed shelling peas snap peas spinach squash sweet potatoes tomatoes: grape, cherry zucchini

Fruits

Grains

Spreads & Condiments

apples apricots Asian pears avocado bananas blueberries cantaloupe

bagel baguette bread bread sticks

apple butter avocado (mashed) banana (mashed) brie cheese cream cheese goat cheese honey hummus jam

cherries cranberries dates figs grapefruit grapes honey dew melon kiwi mango melons nectarines oranges papaya peaches pears pineapple plums prunes raisins raspberry strawberry

bulgur couscous crackers English muffin focaccia garlic toast granola oatmeal pasta pita bread pizza bread rice rice cakes rolls tortillas

ketchup mayo mustard pesto pizza or tomato sauce

Protein

Treats

Drinks

baked tofu beans

A note from Water home Milk apple crisp cottage applesauce 100% fruit cheese juice chips with cheese chicken salsa Stay tuned for chicken dried fruit the next column salad fruit bar “Foods that look eggs, scram- fruit leather bled, boiled healthy but granola egg salad homemade aren’t.” cookies ham popcorn pork shrimp salad pretzels stickers shrimp trail mix salmon yogurt with salmon fruit salad smoked salmon firm tofu, http://shop.iloveobento.com/blogs/bento-gallery cubed

More information:

http://www.laptoplunches.com

fish of any type

http://www.wholefoodmarket.com

silken tofu, in smoothies soy beans (edamame)

http://www.dietitians.ca/child http://www.Missionnutrition.ca

tuna salad

Art work compliments of Alex McLarty. Alex is the brother of Malcolm McLarty who is a patient in the Cerebral Palsy Clinic at the IWK Health Centre.

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R E S O U RC E S Children’s Fitness Tax Credit After announcing a new Children’s Fitness Tax Credit in May 2006, the Federal Government recently introduced the guidelines for qualifying activities and details for claiming the tax credit. In order to qualify, a program must: Have an ongoing and supervised program suitable for children and involve a significant amount of physical activity that contribute to cardio-respiratory endurance, plus one or more of: Muscular strength Muscular endurance Flexibility or Balance The definition is broad to include

a wide range of sports and recreational programs— everything from hockey camps to dance lessons. In order to qualify for a tax credit, the program must be at least eight weeks long and have a minimum of one session per week. If your child attends a camp which involves physical activity, it must be five consecutive days and more than 50 percent of the program has to be dedicated to the activity. As well, as sessions must provide 30 minutes of sustained physical

activity for children under 10 and 60 minutes for children 10 and up. Other memberships and registrations may be eligible depending on the amount of physical activity involved. Part of family membership costs may also be claimed but only the child’s portion is eligible for the credit. The government did recognize the different needs of children with disabilities. The new credit will include an additional $500 (totaling $1000) nonrefundable credit to assist with the cost of specialized equipment, transportation and attendant care.

Don’t Forget To Sign-Up For Your Fall/Winter Recreation Programs. HRM has an inclusive mandate which welcomes, encourages and supports all persons with disabilities and/or persons requiring support to participate in our recreation programs. To view their online catalogue go to www.http://www.halifax.ca/recreation

Canada Learning Bond You can get the $500 Canada Learning Bond: If your child was born after December 31st, 2003. If you get the National Child Benefit Supplement as part of the Canada Child Tax Benefit (sometimes called the family allowance or baby bonus payment). This usually applies to families whose net family income is below $36,378. You could get $500 now, to help

you start saving for your child’s education. You may also get an extra $100 each year for up to 15 years. This can be used to pay for fulltime or part-time studies in an apprenticeship

program, a trade school, CEGEP, College, or university. Where can I get Help or More Information? Call toll-free at 1 800 O-CANADA (1 800 622-6232) for free brochures on the Canada Education Savings Grant and Registered Education Savings Plan. If you use a TTY, call 1 800 926-9105. Look on the internet at www.canlearn.ca

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‘What about me? Aren’t I special?’ How to help brothers and sisters adapt Brothers and sisters of kids with disabilities have many of the same feelings and concerns as parents, but their needs are often overlooked, says the director of the Sibling Support Project in Seattle, Washington.

What PARENTS can do

According to the Siblings Support Project, brothers and sisters may feel:

► Educate

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Anxious about what the disability or condition means—and whether they can “catch it”.

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Worried about their sibling’s future.

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Isolated if friends don’t understand.

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Guilty because they don’t have the condition.

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Embarrassed if they have to cope with negative comments from peers.

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Resentment if parents’ attention revolves around the child with a disability or the child is indulged. “Johnny’s special.’ How come Johnny doesn’t have to carry groceries up the stairs?”

Set aside time to explain the disability and answer questions. For example, preschoolers need to know they can’t catch, and didn’t cause, the disability. School-aged kids need coaching in how to respond to questions from their friends. As the social worker at your children’s health centre for help.

It is important to remember that research shows that siblings of kids with disabilities also have unique opportunities that shape their lives in positive and profound ways: compared to their peers, they are more accepting of differences and more likely to include others, more matures and independent, and they have a greater appreciation for their families and for their own health. A 2004 Journal of Family Nursing study found school-age children who have siblings with multiple disabilities scored significantly higher in cooperation, assertiveness and self-control than peers with typicallydeveloping siblings.

► Connect Parents know the value of sharing experiences with other parents of kids with disabilities. Peer support is equally important for siblings. Ask your social worker about sibling supports or get together with other families of kids with disabilities. Books about siblings and SibKids, an e-mail listserve, can be found at www.siblingsupport.org. ► Pay attention

Camp Triumph is for children aged 8-16, from across the Maritimes who have a family member with a chronic illness or disability. It is a residential summer camp providing opportunities for these children to experience new activities and have fun with children who are also going through similar experiences. The camp is located at Point Prim, PEI and free of charge. For more information check out their website at www.camptriumph.ca or email [email protected]. Call 902-452-9959 or 902-886-2141.

Because they can feel neglected, set aside one-on-one time with siblings. ► Make future plans Make and explain plans about the long-term care of your child with special needs. ► Set the tone How you interpret your child’s disability shapes siblings’ perceptions and ability to adapt. Do you perceive the disability as a tragedy, or as a series of challenges you choose to meet with grace and humour? Article Courtesy of ……... www.bloorview.ca/BLOOM

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U P D A T E S Lights, Camera, Action! Look out, Hollywood! Check out The Brain Retreat, a short animation film on YouTube http://www.youtube.com/watch?v=YcUIkXVJHpQ or type “The Brain Retreat” into the search bar. The film was created by a group of teens with brain injuries who originally got together for Future Zone, a March Break 2007 program run by IWK Paediatric Rehab in partnership with Dr. Ellen Hickey, speech pathology professor at Dalhousie University. Some of the teens continued to meet once a month last year with Ellen and her students. In addition to having fun and socializing, the youth learned how to make an animated short film. The film was chosen to be featured at Viewfinders, an international film festival for youth held in Halifax in April, 2008 (www.atlanticfilm.com/view/). In the film, three characters with different types of brain injury (brain aneurysm, brain tumour, and traumatic brain injury) discover that they all have strengths which they can use to help each other. Alex Slate, an IWK patient who had a stroke in 2006, was the concept director for the Brain Retreat. Alex says: It was really exciting to go to the Bayer’s Lake theatre to see other people enjoying our movie and learning something at the same time. I never thought I would see a movie I helped to create shown there”. His proud mother, Sherri, says “the film was a message of hope. It made me and hopefully a lot of other people realize how much people with brain injuries can accomplish by working together”. Not only was film production a great educational experience, the teens in the group are staying connected with one another socially on a regular basis. And, as Sherri tells us, when the film was shown on the “Big Screen” at Bayers Lake for the Film Festival “there was not a dry eye in the house. It was one of those precious moments I will treasure forever”. According to Alex, “I was proud of what I accomplished with my friends and I am glad we proved that we could dream big and make it happen.” Other members of the creative team include Samantha Norman, Mikhail Drozdowski, Jessie Thompson, and Shannon Adams. We’ll keep our eyes open for more great things from these talented youth!

Tips for Back To School It’s the time of year when many parents and children have mixed emotions about the start of the school year. There are several things parents can do to ensure that the transition goes as smoothly as possible for the whole family.

1. Be positive! It’s important to be positive when talking about starting or going back to school with your children. If you feel stressed or nervous, find ways to cope with your own feelings so that you are relaxed and upbeat when talking with your child. 2. Be ready to listen to your child whether they express excitement or anxiety about school. Reading books together about school can be an enjoyable family activity that helps to prepare your child and allows your child an opportunity to share his feelings.

3. Gradually adjust your child’s sleep schedule one to two weeks before school starts. Gradually move your child’s bedtime toward the time he will need to be in bed for school, and at the same time, also adjust the time your child gets up (if needed). If needed, readjust your own sleep schedule as being tired increases parent stress too!

4. Include your child in back-to-school preparations at least a week before. For example, shop for any needed back to school clothes together, have your child help purchase necessary school supplies, try to arrange a fun activity with some of your child’s classmates, visit the school or walk around the school grounds if possible, and practice the route to school for children who walk to school. 5. Help build up the return to school by planning a special family activity or treat to celebrate the first day.

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PR O G R A M S Freedom Wheels Bike Club The Pediatric Rehabilitation Service was pleased to offer two Freedom Wheels Bike Programs this summer. Each was designed to introduce children and youth who have a physical disability to adapted bikes with the support of Recreation Therapy and Physiotherapy. These programs were community-based giving participants the opportunity to practice skills in a variety of accessible, outdoor spaces.

Adapting Your Bike 6 Year old Nicholas Champion, a Cerebral Palsy Clinic patient from Prince Edwards Island, can ride his bike with the assistance

If you are a youth 13 to 18 years old with a physical disability and/or acquired brain injury, think about joining us for Speak Up, a program offered by the IWK Paediatric Rehabilitation Service to develop public speaking and leadership skills. We'll meet once a month and you'll have a chance to learn and practice "speaking up" in a fun, social and supportive group. Fall dates are September 23, October 21, November 18 and December 16 2008, from 6:30 to 8:30 pm, location TBA. Cost is free! For more information, and a registration form, contact Kim Clarke at 902-470-7039 or via email [email protected]

Do You Want A  Chance to YAC & Make a     Difference at the IWK? 

of adapted pedals. His dad purchased the foot straps from his local Canadian Tire Store! Way To Go Nicholas!

The IWK Health Centre has created a Youth Advisory Council (YAC) for youth aged 13 – 19 to voice ideas and concerns about the care and services available at the IWK. We want to hear about what’s most important to you! How Do I Apply? Talk to Kristin Roe, Patient and Family Centered Care Coordinator, if you have any questions 470-6527 or toll free at 1-888-470-5888 or email [email protected]

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PR O G R A M S Equipment Loan Program The IWK Paediatric Rehabilitation Service Equipment Loan Program has been established to give families of children and youth who have a physical disability or acquired brain injury the opportunity to borrow a variety of equipment/resources. Items include adapted bikes, beach mobility and all-terrain equipment, adapted sleds, swimming devices and recreational and sport equipment. To borrow a piece of equipment please contact Recreation Therapy at (902) 470-7539 or read all of the details on line at www.iwk.nshealth.ca. Click on “Care Services” and then go to “Recreation Therapy”

Hippocampe

Duet Cycle Balance Bike Adjustable Basket

Terrier Trike

Sled Coach

“Big School” Here I Come! The IWK Paediatric Rehabilitation Service’s On The Move Team is having its second “Big School” Here I Come! Program on August 19th to 21st, 2008. It is a program designed to help kids work on the social, self-care, communication and motor skills that will help them succeed in grade primary. Participants of this years program will practice their school readiness skills in the classroom and a school outing.

This year 8 participants will be taking advantage of this great program which is hosted by a team of rehabilitation professionals including physiotherapist, occupational therapists, social workers, nurses, child life specialists, early Interventionists, and speech language pathologists. Watch for information on the 2009 “Big School” Here I Come! program in our winter edition of The Village News.

When to Return to the IWK Health Centre’s Seating Clinic? After leaving the seating clinic, and you have received instruction and demonstration on how to use your new equipment (eg. wheelchair/seating insert), it can be overwhelming to say the least. Once you get the equipment home, and when it is still fresh in your mind, it is recommended that you practice taking apart the equipment and putting it back together several times before going out to the grocery store! Your seating therapist will usually recommend when you should return to the seating clinic. If not, ask if there is a call back program or when you should call for an appointment. The time between visits depends on a number of other factors: safety concerns, pressure sores, how old your child is, diagnosis, rate of growth, postural change, and loss of function. When your child has had a growth spurt or a change in height and/or weight, the fit of the seating insert may not seem right watch for: When sitting tolerance is not what it used to be. When your child’s posture (ie. head/upper body) looks poor while seated – even after you ensure that you have positioned the pelvis to the back and center of the seat When you notice red marks on your child’s skin that do not go away within 10 minutes; foam may be worn and bottomed out, insert may require adjustments, or it might signify postural/orthopedic changes. When you notice that your child’s speech has changed – if the upper body is positioned poorly, this can have a negative effect on respiration, thus speech output. When you notice that functional abilities have changed – difficulty using a power wheelchair, a switch or other input for a computer, participation in sports. If your child has had recent orthopedic surgery which most generally requires changes to the seating and/or wheelchair. When thinking of changes in living situation or transportation (ie. Decisions regarding accessibility or type of vehicle may be affected by equipment. Repairs needed to wheelchair/insert (eg. replacing Velcro on pelvic belts, greasing axles/tightening brakes/replacing tires or anti-tip levers); most wheelchairs require at least yearly service. If you have any questions or concerns please contact: Julia Gates, OT (Reg.N.S.) (902-470-8716) Occupational Therapist, Remedial Seating Service

Psychology For You is an education series provided by IWK Psychologists as a free, public service to our Maritime Community Community Lecture Series Fall 2008 7:00 pm, Parker Reception Room IWK Health Centre Too Scared to Speak: Helping Your Child Overcome Shyness or Selective Mutism Melanie Vanier, Ph.D., IWK Monday, September 22, 2008 The Early Detection and Treatment of Autism: The Role of Positive Emotion Susan Bryson, Ph.D., IWK Monday October 6th, 2008 For Further Information Please Contact Dr. Erika Brady at 902-470-6421 Creating Support Solutions for Families of Children and Adult Children with Special Needs We want to know more about children’s needs, parents’ coping strategies, and the kinds of supports that families use and need. The intention is to use this research to provide information that is relevant for service providers and other decisionmakers about these important issues. We invite you and/or your partner to assist us by filling out questionnaires which you can complete at home. For more information contact: Paula Hutchinson Ph.D Candidate, Dalhousie University 902-470-7275 or [email protected]

IWK Paediatric Rehabilitation Services 5850/5980 University Ave. P.O Box 9700, Halifax Nova Scotia, B3K 6R8