1. By: Niroja Anandarajah, Thipika Nageswaran & Tracey Singh

2. Agenda Meet Sonia and her family What is Spina Bifida? Cause of Spina Bifida What are some of the characteristics of Spina Bifida? Types of Spina Bifida Symptoms of Spina Bifida The need of the child The need of the family How parent can help his/her child? How they will respond to those needs in the preschool room setting Meeting the needs in the child care center Discuss the child special need. Professionals that the child might need Teach classmates how to help a child with a physical disability Impact of Spina Bifida in young children Impact on Families What are the most common types of therapy? Strategies to include Sonia Modification What to do in kindergarten for Sonia to be inclusive Teach concept Other adaptive learning environment that can be used teaching strategies to parents Teach order of Events Agencies in local area Things to remember... Bibliography 3. Sonia is 7 years old and she is new to the center. She has Spina Bifida and uses a wheel chair. She also has a shunt to lesson fluid on the brain. Sonia is good at language skills. Sonias parents speak English and French. They arrived to Toronto newly and they need help from the teacher. Finally, her parents are interested in sports and entertainment programs. 4. It is a birth deficiency in which the backbone and spinal canal do not adjacent before birth. Also it is a neural tube defect in which bones of spine do not completely form; resulting in an incomplete spinal canal. The condition is a type of Spina Bifida. Video : http://www.youtube.com/watch?v=6Ii_v3t9hpU Centers for Disease Control and Prevention, 22 June 2012, 5. No one knows completely what cause SB. Scientists stated that it is most likely due to a combination of inherited (genetic), environmental and nutritional factors. Lack of folic acid during the pregnancy has a higher chance of giving birth to a baby with SB. However, experts recommend for women of reproductive age to make sure their folic acid intake adequate. If a woman gives birth to a baby with SB, she has a higher-than-normal risk of having another baby with SB too (about 5% risk). Treating Epilepsy or Bipolar disorder have been associated with higher risk of congenital defect birth such as SB, and some medication as well. Women with diabetes are more likely to have a baby with SB, compared to other females. Benghafner March 7th, 2008 ,The C.A.M. Report 6. Difficulties with bowel and bladder control may occur. This symptom is dependent on the location of the lesion on the back. Other conditions such as latex allergies and possible skin breakdown from lack of feeling are also associated with Spina Bifida. Developmental delays may occur and learning disabilities are possible. May cause learning problems such as difficulty paying attention, and expressing or Understanding language. Organizing, sequencing, and processing of information in Reading and mathematics may also be affected. Mobility may be affected. How much movement your child has in his/her legs depends on where the lesion is on the back. The higher the lesion, the lower the chance is of walking independently Rlbates, September 4, 2007, Sutured for a living 7. http://www.cdc.gov/ncbddd/spinabifida/facts.html http://www.youtube.com/watch?v=CldPx9EwYAc Centers for Disease Control and Prevention, December 26, 2013,Types of Spina Bifida 8. Spina bifida occulta: Visible indications of SB occulta can sometimes be seen on the newborn's skin above the spinal defect, including: An abnormal tuft of hair A collection of fat A small dimple or a birthmark Skin discoloration Meningocele: in this rare form, the protective membranes around the spinal cord (meninges) push out through the opening in the vertebrae. Myelomeningocele: tissues and nerves are exposed, making the baby prone to life-threatening infections. Neurological impairment is common, including: Muscle weakness, sometimes involving paralysis Bowel and bladder problems Seizures, especially if the child requires a shunt Orthopedic problems Sharon Ennis, october5, 2009, Spina Bifida: The Journey 9. Help the child feels that she is needed and belongs to the classroom environment. Encourage and support the child's independence such as self-sufficiency, self- reliant, and self-control. Know how the equipment works (crutches) and ask her to show us how we can help even her peers too. Stress the things that the child can do, not the things he cannot do. Let the child know that many people with physical disabilities lead useful and happy lives. Some adaptation of the activities may be necessary. Of course anything involving use of the legs may have to be done sitting down Zivka Nikolic, January 28, 2012, There are only benefits of inclusion; there is not any negative effect! 10. Provide information and emotional support to the mother to learn more about children who have Spina Bifida Get information and find clinics or health care providers who are expert in Spina Bifida Provide resources for the mother to get help about feeling Be consistent and clear when disciplining the child Help her to use the correct words and phrases to express her need. Help the child through the steps to solve problems when she is upset. Give the child a limited number of simple choices. BA Haller, July 5, 2009, Experimental surgery may hold hope for children with spina bifida 11. Consistent and active treatment is important to your childs development, so please make every effort to attend all sessions in a treatment block. Become active in your childs therapy following through with home programming and asking questions whenever you have concerns. Maintain contact and speak regularly with your childs health care team Keep your childs team informed of any changes. Communicate your concerns and goals for your child with his/her therapists. Encourage your child to try new things. It is important to provide a strong social support system for your child. Being the parent of a child with Spina Bifida requires a lot of attention and energy, so be sure to take time for yourself and look after your own needs as well. Keep in touch with family and friends seek out their support when needed. Take advantage of community resources and services available to you and your child. The better informed you are as a parent, the better prepared you will be to get the best services from medical, educational, and community programs Keep in touch with family and friends seek out their support when needed. 12. Adapt learning activities to be inclusive for the child with Spina Bifida Provide tools for the child with motor disabilities can use for grasping, holding, transferring, and releasing. Make sure the materials are age appropriate for all children in room to use. Provide materials of different textures such as play dough, fabric swatches, ribbon, corrugated cardboard and sandpaper to stimulate the sense of touch We will make sure activity areas are well-lighted, and I will add lamps if needed. Work with parents and specialists to choose special exercises for the child, and encourage the whole class to do some of them as part of a large group activity. Add tabs to books for turning pages. Place tape on crayons and markers to make them easier to grip. Secure paint brushes into a glove, or provide paint brushes with large knobs on the ends. Consider buying scissors that open automatically when squeezed, or scissors that do not require children to use finger holes. Plan activities to encourage all children to move all body parts. How they will respond to those needs in the School age room setting 13. The environment : Children learn through the environment Gather as much as information we can about the child with special need, and learn about typical modifications that can be made. Working closely with parents, professionals will be an excellent resource to get suggestions and to ask questions. Modification of the environment would be beneficial for the child in special needs and even for her peers Plan together: Set a goal in collaboration with parents, consultant, and caregivers to be a part of the team who develops the child`s Individualized Education Plan (IEP). Meeting together to plan goals and needs of the child, and discuss about activities, exercises, and support needed to reach goals in closely collaboration. These goals should always match the childs disability by discussing ideas and plans with the family. 14. Make it easy to move around in play areas by arranging furniture and equipment with a wide aisle so the child can move around more freely. Providing a safe place for walkers, crutches, or canes so other children do not trip over them; using heavy, stable furniture and equipment that cannot be easily knocked over. Moreover, work together with the parents to come out with a comfortable ways for child to sit, a corner with two walls for supports, a chair with a seat belt, or a wheelchair with a large across. These are some ways we could help. Benghafner March 7th, 2008 ,The C.A.M. Report 15. Applaud and encourage helping behaviors, and also teach them to encourage their classmates to do as much as possible on her own. Teach children to assist children with disabilities when need Teach children how to offer help respectfully Encourage them to ask if the child wants help first, and to take no as an answers. Encourage children to find creative ways to include a child with physical disability in their play activities Teach classmates how to help a child with a physical disability Parenting Blog,June 23, 2011, Physical Therapy: Warning Signs and What Parents Can Do from KidsCare Therapy 16. Spina bifida can happen anywhere along the spine if the neural tube does not close all the way. The backbone that protects the spinal cord does not form and close as it should. This often results in damage to the spinal cord and nerves. Spina bifida might cause physical and intellectual disabilities that range from mild to severe. The severity depends on: The size and location of the opening in the spine. Whether part of the spinal cord and nerves are affected. Sharon Ennis, october5, 2009, Spina Bifida: The Journey 17. Spina Bifida affects the entire family. Meeting the complex needs of a person affected involves the whole family and can be challenging at time. However, finding resources, knowing what to expect, and planning for the future can help. BA Haller, July 5, 2009, Experimental surgery may hold hope for children with spina bifida Video: http://www.youtube.com/watch?v=2LyPOZf-6rw 18. The goal of therapy is to help your child to maximize mobility and to become as independent as possible at home, in school, and in the community. Therapy involves: increasing strength, balance, and flexibility through exercise preventing orthopaedic problems with exercise and ositioning devices recommending equipment to help with independence, walkers, wheelchairs, equipment increasing independence with Activities of Daily Living (ADLs) such as dressing, eating and toileting increasing independent use of tools such as scissors, pencils, cutlery, toothbrush. Occupational Therapy and Physiotherapy are the main therapies needed for children with Spina Bifida. Occupational Therapists and Physiotherapists will often work as a team in caring for your child. bathroom equipment modifying household Parenting Blog,June 23, 2011, Physical Therapy: Warning Signs and What Parents Can Do from KidsCare Therapy 19. As an ECE in order to help Sonia to move around throughout the day we will use the prompt and fading technique to help her learn new skills, to built independence, and self-esteem. Also I will make sure that the physical space are removal of barriers for her to have traffic flow . Materials, toys, and equipment will be accessible for indoor and outdoor for wheelchair or crutches, appropriate size toys, shelves at child level. Safety and safe risk taking by being responsive all the time, by understanding child feelings, treating her as an equal being rather than isolate, cognitive and communication. 20. Name of prompt : Environment Types prompt Examples ECE BODY POSITION Environment prompting Providing verbal pictures, labelling materials in the room and cue cards Full and partial Least to most prompt is used when the child has the skills but doesnt do it on request. Prompting and fading :Goal Sonia will stand up and move around when asked independently Benghafner March 7th, 2008 ,The C.A.M. Report 21. Type of prompting Example ECE body position Full prompting Put crutches in her hand In front of the child Partial prompting Put the crutches in front of her hand in her own personal space Behind /beside the child Type of prompt Pointing prompting Example Pointing to the crutches ECE body position Parenting Blog,June 23, 2011, Physical Therapy: Warning Signs and What Parents Can Do from KidsCare Therapy 22. Types of prompting Example ECE body position Full prompting Giving full step by step instruction without gesture In front of the child Partial prompting Giving partial instruction and waiting to see if the child will do the task Behind or beside the child. Gestures prompting Asking questions ADMIN, MARCH 20, 2011, What is Verbal Behavior? 23. Prompt: Modeling Types of prompting Example Body positioning of the ECE Full Prompting Using verbal instruction when doing the task together In front of the child Partial Prompting Using verbal instruction to pretend to do the task Beside/behind the child 24. Prompting and fading :Goal Sonia will stand up and move around when asked independently Types of prompting Example Body positioning of the ECE Full prompting Hand over hand- The child requires full physical assistance to carry out the task In front/or behind the child Partial prompting The child requires partial physical assistance by touching the arm, elbows and wrist In front or behind the child Benghafner March 7th, 2008 ,The C.A.M. Report 25. By providing specific classroom devices and altering the classroom environment, we will help Sonia to achieve success in the classroom. By providing a desk for her where she can easily maneuver around the classroom and have enough space to sit comfortably. We may need to provide a special desk for her or rearrange some of the classroom supplies to provide easy access to the materials. Scheduling to accommodate anything imperative in the last minute Amanda, July 31, 2013, Classroom Decor: The 'CUTE' Conversation 26. To help Sonia to be inclusive in learning environment, we will divide the class into learning station so she will feel comfortable and succeed in this new environment. We will set up the desks or tables in a way of all the student can negotiate. Also we will implement activities which will promote inclusion and integration among her peers to encourage group work and structured partner activities. Cody Laplante, February 27, 2013, Inclusion Takes the Special out of Special Education 27. Active learning: Effectively use to develop cognitive skills among children such as problem solving and critical thinking, and improve students understanding. Collaborative/cooperative learning: student work together in small groups to accomplish a common learning goal. Critical thinking: It brings the activity together and enables the student to question what knowledge exists. Discussion strategies: Engaging students in discussion deepens their Learning and motivation by propelling them to develop their own views and hear their own voices. A good environment for interaction is the first step in encouraging students to talk. Patti Richards, Demand Media, April 8,2006 The Effects of Behavior Modification in an Inclusion Classroom 28. During birthday party: this is a great opportunity to see for yourself which children interact best with your child. The children that want to sit next to the birthday boy or girl are good candidates for future play Ask your childs teacher: if there is a friend who likes to talk with your child then try to connect with him to build a friendship out of school. Find another child with special needs: Wouldnt it be nice to find a fellow friend who is going through the same issues and might have similar interests? ADMIN, MARCH 20, 2011, What is Verbal Behavior? 29. Experience learning: an approach of educational of focus on learning by doing. ECE role is to design direct experience that include preparatory and reflective exercises. Games/experience/simulations: Games and simulations enable students to solve real-world problems in a safe environment and enjoy themselves while doing so. Humor in the classroom: Enhance student learning by improving understanding and retention. Inquiry guided learning: Encourages students to build research skills that can be used throughout their educational experiences. Learning community: Communities bring people together for shared learning, discovery, and the generation of knowledge ADMIN JULY 22, 2011, How Can Visual Supports be Used in the Inclusive Classroom? 30. Where there located? P.O. Box 103, Suite 1006 555 Richmond Street West Toronto, Ontario M5V 3B1 Toronto & GTA: 416-214-1056 Toll Free: 800-387-1575 (Ontario Only) Fax: 416-214-1446 Email: provincial@sbhao.on. What they are doing? To build awareness and drive education, research, support, care and advocacy to help find a cure while always continuing to improve the quality of life of all individuals with spina bifida and/or hydrocephalus. http://www.sbhao.on.ca/programs-services/care- and-support/parent-support Spina Bifida & Hydrocephalus Association of Ontario, april 5 2014. 31. Spirit of our organization that has been committed for over 30 years to making a positive difference in the lives of people with SB&H, an association of volunteers providing a comprehensive range of help to parents, families, youth and adults with SB&H. Breakthrough because of our spirited and sustained mission of research, awareness, care and advocacy our organization will steadily break through barriers and continually improve the quality of life and ensure fair treatment and social justice for all individuals with SB&H. Hope within our organization dedicated to ongoing therapy, medical care and surgical treatments to minimize further neurological damage and through our determined commitment to Spirit, Breakthrough & Hope a cure will be found. What to do with family? They understand how difficult it can be, even when things are going smoothly, to face the added challenges and concerns of living with spina bifida and/or hydrocephalus. SB&H provides direct service to adults, youth, parents and guardians dealing with the challenges of spina bifida and/or hydrocephalus, offering information, resources, emotional support, counselling and networking opportunities. For more information please contact SB&H at 1-800-387-1575 or email http://www.sbhao.on.ca/programs- services/care-and-support/parent-support 32. What to do with family? Spinal Column Trauma/Developmental Anomalies Children and adolescents with defined spinal column/cord injuries or developmental anomalies are treated jointly by the orthopaedic and neurosurgeons. Both external and operative internal fixation procedures are carried out and the rehabilitation program customized individually for each patient. SickKids & social media: Interview with Janice Nicholson NOVEMBER 23, 2011 Where there located? The Hospital for Sick Children 555 University Avenue Toronto, Ontario Canada M5G 1X8 General inquiries: 416-813-1500 Patient information/locating: 416-813-6621 33. Services are provided by a pediatrician, ambulatory care nurses, physiotherapists, an occupational therapist, a speech- language pathologist, a social worker and a psychologist. has access to medical consultants in the areas of orthopedics and urology. To enable co-ordination of care of each child, the Spina Bifida/Spinal Cord team communicates with other involved community partners such as schools Referrals To access this service, a pediatricians referral is required and the client must reside within the Toronto area or within an area that cannot access a local treatment centre within Ontario. http://holland- bloorview.heroku.com/floors/2/facilities/57 Spina Bifida and Spinal Cord Contact Dulcie Styles Clinic Secretary, Child Development Program Tel: 416-425-6220, ext. 3835 E-mail: dstyles@hollandbloorview.ca Child Development Program Tel: 416-425-6220 ext. 7050 What to do with family? The Spina Bifida/Spinal Cord team uses a multidisciplinary, family centred approach. Clients are seen annually or more frequently if necessary, in a clinic setting by various professionals as determined by the needs of each client. also provides intervention and consultation as required between clinic visits. ADMIN on MARCH 7, 2011, Holland Bloorview Kids Rehabilitation Hospital 34. Plan of Action Who What When Staff & Supervisor Training Staff April 13, 18, 20, 2014 Supervisor Attending workshops on Spina Bifiad & layout of room for staff April 1,5,7, 2014 Resource Consultant & Parents Meeting with a Paediatrician April 11, 13, 19, 2014 Resource Consultant & Parents Meeting a Social worker and counsellor April 12, 18, 21, 2014 Resource Consultant Meeting with Physical therapist April 1,3,6, 2014 Resource Consultant Meeting with a Paediatric orthopaedic surgeon April 23, 26, 29, 2014 Resource Consultant Podiatrist April 2, 4,10, 2014 Resource Consultant & parents Going to see places for recreation programs May 10, 13,15, 2014 Resource Consultant Finding summer camps May 21, 24, 30, 2014 35. Spina Bifida occurs in all races, ethnic groups, scioeconomic classes, and nationalities and in both boys and girls. Each child with Spina Bifida is a unique individual with his/her own personality, strengths, talents and thoughts. Children with Spina Bifida can participate in many community programs such as sports, arts and crafts, music, scouts, school, etc. Centers for Disease Control and Prevention, December 26, 2013, Living With Spina Bifida 36. Quiz Time What was our childs name? How many types of Spina Bifida are there? Name one of the agencies that we have told you about. 37. References Centers for Disease Control and Prevention, (2012), Wikipedia, the free encyclopedia, Retrieved date: march 10, 2014 Retrieved from: http://www.cdc.gov/ncbddd/spinabifida/facts.html Rlbates, September 4, 2007, Sutured for a living, retrieved date: march10.2014, Retrieved from: http://rlbatesmd.blogspot.ca/2007/09/myelomeningocele-mmc-repairs.html Sharon Ennis, october5, 2009, Spina Bifida: The Journey , retrieved date: march10.2014, Retrieved from: http://www.yummymummyclub.ca/family/special-needs/spina-bifida-journey ADMIN, MARCH 20, 2011, what is Verbal Behavior?, retrieved date: march10.2014, Retrieved from: http://www.autism-community.com/what-is-verbal-behavior Amanda, July 31, 2013, Classroom Decor: The 'CUTE' Conversation, retrieved date: march10.2014, Retrieved from: http://rainbowswithinreach.blogspot.ca/2013/07/classroom-decor-cute-conversation.html Cody Laplante, February 27, 2013, Inclusion Takes the Special out of Special Education, retrieved date: march10.2014, Retrieved from: http://specialedpost.org/2013/02/27/inclusion-takes-the-special-out-of- special-education Patti Richards, Demand Media, April 8,2006 The Effects of Behavior Modification in an Inclusion Classroom, retrieved date: march10.2014, Retrieved from: http://everydaylife.globalpost.com/effects- behavior-modification-inclusion-classroom-28925.html ADMIN JULY 22, 2011, How Can Visual Supports be Used in the Inclusive Classroom?, retrieved date: march10.2014, Retrieved from: http://www.autism-community.com/how-can-visual-supports-be-used-in-the- inclusive-classroom Sick Kids & social media: Interview with Janice Nicholson,NOVEMBER 23, 2011, ?, retrieved date: march10.2014, Retrieved from: http://cyhealthcommunications.wordpress.com/2011/11/23/sickkids-social- media-interview-with-janice-nicholson 38. 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