.• Evan is a six year old boy who is suffering from Muscular Dystrophy which is an inherited disorder that results in muscle weakness or loss of muscle tissue. The worse part is that it gets worse over time. Reference: Case studies http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002172/
Needs of Child: Physical• Child may require physical therapies• Need for a wheel chair or other support items like splints or braces depending on the severity of the Evan’s condition• Usually wheelchairs are needed when they are around 12 years old but every child’s case is different and if Evan is facing severe symptoms then he may require a wheelchair• Medication• Nutritionist to provide counseling• Language and speech therapist incase tongue muscle is getting weaker.• Doctor to do physical check ups• Psychiatrist incase needed to assist with certain types of medications• Optometrist to check the development of the eye muscles• Developmentally appropriate environment free of biases• http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002172/
Needs of Child: Social &Emotional• Need to speak to a psychologist• Resource teachers to come and monitor Evan’s development in Daycare.• Consultants or counselors at school to make time to speak to Evan when needed.• Psychiatrists incase medication is needed to control anxiety or emotional problems.
Needs of Child: Cognitive• Special needs teacher who would give him individual attention and help Evan learn at his own pace• Special needs school in case Evan’s cognitive development is extremely delayed and he requires a lot of assistance.
Needs of Parents:• The needs of Evan’s parents is to get support and be exposed to services that may benefit Evan’s development in all areas• It’s a tough situation for the parents to be in so they need understanding from the teacher and their surroundings• Need to be referred to counseling groups• Social workers or psychologists to help guide them emotionally and mentally.• Relief worker
Muscular Dystrophy http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002172/• Muscular Dystrophy is a Genetic disease that weakens the muscles and causes loss of muscle tissue over time, making it hard to walk, bend or even stand.• It could occur in adulthood or childhood and there are various types of Muscular Dystrophies. The following video contains a brief introduction about Muscular Dystrophy and its most common type in children:http://www.youtube.com/watch? v=AZ0jQZ6aBtk
There are various different types of Muscular Dystrophies:• Becker muscular dystrophy• Duchenne muscular dystrophy• Emery-Dreifuss muscular dystrophy• Facioscapulohumeral muscular dystrophy• Limb-girdle muscular dystrophy• Myotonia congenita• Myotonic dystrophy• http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002172/
• Sometimes it could affect one muscle or involve other muscles at the same time. Some Muscular Dystrophies could be more severe then others based on what type it is. Meanwhile, currently there are no cures for this disorder and the most the doctors could do is control the symptoms as much as possible based on the type of Muscular Dystrophy.• http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002172/
Some symptoms involve:• Muscles become week and child might have difficulty walking or moving around• Muscle weakness that slowly gets worse• Difficulty using one or more muscle groups• They might experience pain in their legs• Their shoulders and arms might become weak• Due to weakness they might fall more often• Strength in their muscles becomes less• Their gross motor development is delayed and they will face problems walking• They will not be able to jump• They would feel weakness even with their facial muscles• http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002172/
Ways to meet Evan’s needs in our childcare setting: physical environment• Modify physical layout of the room and provide adaptive equipment• Make a traffic flow in the room smooth to allow easy movement with the wheelchair or other adaptive equipment
Cont’: modification in physical (from reading package, unit 2)Room Area Modification •Coats at child’s eye levelCubby •Photo of child and labeled with name •Space for personal belongings •Smocks on hooks that are easily accessibleArts and Crafts •Provide variety in materials and a creative display to grab their attention •“locate arts and crafts area near water for use and clean up purposes”(Reading package, Unit 2) •Keep the area out of traffic flow to minimize mess and falls of materials on the floor •“freestanding easels should be set up in pairs to promote socialization”(Reading package, Unit 2)
Cont’:Room Area: Modification: •Have it close to the block and craft centre toSand and Water minimize distractions since these areas could be loud •Keep area out of traffic flow in the room since they could be wet and slippery and cause falls •Have smocks close and easily accessible •“the table toy area should be enclosed on three sidesTable/Floor Toys using an L shaped shelf to create boundaries”(Reading Package, Unit 2) •Labels with pictures for bins would be helpful for children with special needs and other children •Grouping of toys will make it easier for children to understand which toys go where.
Cont’: •Locate it in a corner, use furniture or shelves thatBlock Center can be moved to create boundaries •Blocks should be placed at children’s eye level and traffic flow should be smooth for children with adaptive devices or wheelchair •“provide hooks and mini hat racks for children toDramatic Play easily access dress up clothes”(Reading Package, Unit2) •Put mirrors on the wall for children to see themselves •Put this area close to the quiet area of the roomBook Centre •Have books that have information about different special needs to make children more aware that its ok to have a special need condition and that we should treat everyone the same
Cont’: •Have large space to accommodate all children incaseOutdoors wheelchairs or other devices need to be used. •“use chalk, tape or small pylons to define high traffic areas where children ride bicycles or wagons or their wheelchairs. Use large traffic signs to indicate the flow and minimize accidents”(Reading Package, Unit 2) •“sinks and toilets should be mounted low enough forWashroom children to use independently..”(Reading package, Unit 2) •Special aid appliances should be added to meet Evan’s needs incase he needs to hold on to something •Use bright lights •Soap and paper towels should be at eye levels of children for easy access •Locate besides book centerQuiet Area •Could use see through curtains to isolate the area and give children their space while being able to see them •Use natural lighting
Specialized Equipment needed for Evan: part of modifications in childcare• Crutches for Evan to be able to walk in the class since it was indicated in the case study that he is showing developmental decrease in all areas.• Since Muscular Dystrophy causes muscle weakness, children aren’t able to stand properly or walk, other mobility aids would be needed to help them.• Use of Rolls and Wedges which would help Evan “develop control of the head, shoulders, arms and hands”(Reading package, unit 2) This would be helpful incase Evan is feeling weakness with his arms or neck aswell.• Use of visuals during transitions to nap times or other activities throughout the day to meet Evan’s cognitive and language needs• Use of “adaptive toys to provide opportunities for children with special needs to participate in play”(Classnotes, week 5)
Teaching strategies:• Talk to all children in the classroom about Muscular Dystrophy to increase understanding amongst the children• Have books about special needs children and read it to children to increase awareness and acceptance and minimize biases• Teachers should use the 5 steps of prompting and fading when teaching Evan or other children a new skill• Steps to prompting and fading include: “defining the skill that you want to teach, identifying suitable prompts, prompts, reinforce and fade, monitoring results and returning to stronger prompts when needed.• Teachers should use prompts less each time until child fully learns the skill and is able to perform it independently.• Allow each child to learn at their own pace.• Evan has Muscular Dystrophy which will make it harder for him to work fast with his muscle weakness but allowing him to work at his own pace would be helpful
Teaching Strategies: Cont’ (Classnotes, week 7)• Be positive and give hope to parents• Observe child’s verbal and non verbal cues• Provide reassurance to the child and be responsive• Role model social behavior and other actions• Provide choices so children become more independent• Provide positive reinforcement to help all children become more independent and build their self esteem (Connect ability, week7)• Actively listen to child’s needs• Use visual cues for children in different situations during the day for example during transitions, trying to communicate or when teaching new skills.
Teacher’s role:• Make changes in routines, allow extra time during transitions throughout the day• Encourage Evan to use his muscles as much as possible during activities• Plan activities that include all children regardless of special need condition• Give extra time during activities and clean up times• Use positive labels and “assist with researching information for families and professionals”(Using Labels handout)• “work in collaboration with Resource consultants, specialists, families and coworkers”(Classnotes, week 5)• “connect with local organizations that support families, advertise your commitment to inclusion”(Classnotes, connectability)
• Incase of Evan, the parents already knew about the fact that he has Muscular Dystrophy so the teacher was supposed to make some phone calls and get information to assess the delayed development that was happening in Evan’s all developmental areas. (Case Studies) The following table has the list the teacher could give the parents about the people in the community that need to be involved in Evan’s case to further help him with his condition:
Resource teacher could provide:Resource: info How could it helpabout Evan: •could gather information about hisResource conditionTeacher •Guide the staff and parents about his strengths and weaknesses and setting goals for working on his weaknesses. • “develop appropriate strategies and service plans to support inclusion of the child with special needs”(Classnotes, week 9) • “interact with related professionals in the community”(Classnotes, week 9)
Cont’Resource: info How could itabout help Evan: •Performs the diagnosis of theFamily Doctor condition •Could refer the parents to specialists that would further be able to help in dealing with Evan’s condition •Prescribe medication
Cont’Resource: info How could it helpabout Evan: •Addresses physical aspect of child’sPhysiotherapist condition that involves moving around, muscles strength etc. This is critical in Evan’s case because his development is decreasing in all areas and physiotherapy would certainly help him physically. •Would work with families to help child strengthen his physical development
Cont’Resource: info about How could it help Evan: •Would help Evan become more independentOccupational in his daily lifeTherapist •OT would do home visits and work with families and the child and help the child become more independent in areas of dressing, bathing, feeding, play and school activities.(Classnotes, week 9) •This is necessary in Evan’s case because due to muscle weakness he will have a lot of problems independently doing his regular routine chores. However, exercising these skill would still help him to some extent until his condition becomes extremely severe.
Cont’:Resource: info How could it helpabout Evan: •Would be able to monitor Evan’sBehavioral behavior and make suggestions about things parents and teachers could do toConsultant help him during certain negative behaviors. •With Muscular Dystrophy, most of theSpeech and times the muscle of tongue is effected causing delays in speech or languageLanguage •Speech and Language Therapist wouldTherapist “work with children and their families to develop the child’s verbal and non- verbal communication skills, their understanding of language and their swallowing and feeding skills”(Classnotes, Week 9)
Cont’:Resources: info How could it helpabout Evan: •Would be able to give parents informationSocial Worker about the types of services available in the community which would be able to help them deal with Evan’s condition more appropriately.
Cont’:Resources: info How could it help Evan:about •During this time parents and the child require a lot ofPsychologist reassurance and someone to guide them through this emotional journey and psychologist provide this support. •“offer diagnosis and can address concerns about a child’s learning abilities or behavior as well as provide family centered treatment and support”(Classnotes, week 9)
Cont’:Resources: How could it helpinfo about Evan: •This condition could cause Evan toPsychiatrist have mood swings or feel emotional or anxious. Psychiatrist could provide medication •Therefore, for certain cases a psychiatrist is needed to provide proper medication to control the emotions, anxiety and stress and this medication can’t always be prescribed by a regular doctor.
Cont’:Resources: info about How could it help Evan: •Eye muscles could also be affected at times withOptometrist Muscular Dystrophy cases •So in Evan’s condition it would help him get a diagnosis about his eyes through the eye examination and precautions or steps could be taken based on the diagnosis of the Optometrist that would be useful for parent’s awareness and Evan’s condition.
Cont’:Resources: info about How could it help Evan: •Muscular Dystrophy cases also involve the specialDentists needs child having certain dental problems with proper tooth structure formation, decreasing muscle function, production of too much plaque and more tarter which needs to be kept in control with regular dental visits. •Although there isn’t specific mention of this in the case study, having problems with teeth and bones inside the mouth are common in muscular Dystrophy cases.
Cont’:Resources: How could itinfo about help Evan: •“Works with the child withRelief special needs within the home to allow relief for theWorker: parents”(Classnotes, week9) •This support could be very helpful because for parents all the running around and taking care of Evan could lead to a lot of stress and at times they do need a relief worker who would be able to give them some time for themselves.
Cont’:Resources: info How could itabout help Evan: •“observes, participates inEarly creating and implementing IPP’s, make adaptations in theChildhood environment, supports families, links with other professionalsEducator and more”(Classnotes, week 9) •Daycares are where children spend more then half of their day and it is vital to have a good ECE who would be resourceful and understanding in meeting the child and family’s needs.
Information about agencies: : Cont’What population they serve:Cost:Referral process:
Muscular Dystrophy Canada: (non-profit organization)Mandate and Mission:• to find cure to the different types of Muscular Dystrophies, they provide resources and support on an on going basis to families who have members that have this condition.• They help families get support by providing them with the proper education about this condition, information, Advocacy and equipments such as Wheelchairs, scooters, orthotics, hospital beds and other equipments.• They also provide emotional support to families and children during the process http://www.muscle.ca/ontario-nunavut/services/register-to-receive-services/
Muscular Dystrophy Canada Cont’:Population they serve:• With the group of volunteers that work across Canada, they collect donations to help the lives of children and families who have this condition.• They provide them resources and ongoing support.Cost:• They try to lower parent’s financial burden by covering the costs to the needed adaptive equipments needed for this condition.• Their cost is covered by the donations they collect from across Canada• They provide financial assistance plans for basic medical equipments http://www.muscle.ca/ontario-nunavut/services/register-to-receive-services/
Muscular Dystrophy CanadaReferral Process:• Staff give referrals to families on the local clinics, agencies and other community resources to help guide them during this processAvailability:• You have to register in order to access these services• Services are available to anyone who is diagnosed with Muscular Dystrophy, must be a Canadian Citizen, Landed immigrant or refugee in Canada http://www.muscle.ca/ontario-nunavut/services/register-to-receive-services/
Holland Bloorview- Kids rehabilitation hospital:What do they do?• Provide treatments, therapies, technologies and programs to allow children with special needs to participate in daily life http://www.hollandbloorview.ca/
Holland Bloorview- Kids rehabilitation hospital:What population they serve?• They serve about 7000 children per year• “With about 600 inpatient admissions and 58,000 outpatient visits”(website)Cost: not specified and depends on the condition and the amount of things the patient needs http://www.hollandbloorview.ca/
Holland Bloorview- Kids rehabilitation hospital:Referral Process and availability:• Services are available through referrals of doctors and approval process of the hospital• Referrals are reviewed Monday to Friday and they respond within 72 hrs• Admissions Facilitator: (416) 753-6022 for more information on the process• Medical referral from physician is required• Must complete the form of the hospital itself• Complete medical summary must be submitted• Once the referral is approved then patients and their families are encouraged to get a tour of the facilities and services offered http://www.hollandbloorview.ca/
Overall References:• http://www.hollandbloorview.ca/• http://www.muscle.ca/• http://www.muscle.ca/ontario-nunavut/services/register-to-receive-services/• http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002172/• http://www.youtube.com/watch?v=AZ0jQZ6aBtk• Reading Package, Unit 1, 2, 3• Classnotes- weeks 4-9• Case Study from class notesImages:• http://kidshealth.org/teen/diseases_conditions/bones/headers_86797/T_MuscularDystrophy1.jpghttp://orthoinfo.aaos.org/figures/A00384F01.jpg• http://www.oumedicine.com/images/ad-neurology/parke- childneuro.jpg?sfvrsn=2